Hi - Permision to Repost

I have sent the following to Elizabeth Mitchell

Dear Elizabeth

I have aired the MRC’s concerns about the demo to the intended participants
and others, and the feeling is that it should go ahead. Such comments
received to date are:

1. Total arrogance from the MRC to dismiss the feelings of patients; all
that can be said is being selectively heard by them - unless they mean they
want us to be good little boys and girls and keep shut.

2. They are delaying the inevitable. *If* the CDC in the States is now
saying that CFS is *not* ME, this leaves the MRC more out in the cold.

3. We should be pointing out that the MRC is in an increasingly difficult
position.

4. The "all that can be said" comment is not dissimilar to "let them eat
cake". They seem to have contempt for the patient.

5. Ask Eliz Mitchell - we know how many projects have been turned down (11)
BUT how many on ME/CFS have the MRC funded since the PACE and FINE trials?
Might be interesting.

The final point may well be interesting, another opinion which I tend to
share having had time to think on the matter is that in a country such as
ours we have if we feel our needs and interests are not being met by
whatever governmental or other department we have the freedom of speech to
say so and the democratic right do peacefully demonstrate to put this point
across. This is what it is hoped to achieve on May 12 to let it be known
that people with ME are not satisfied with their treatment and both want and
deserve better and have the right to let it be known.

Hopefully others will also contact you with their comments.

Trev
MERSC
Patron: Gary Frankum - The UK's No 1 Celebrity Sufferer

Hi - Permission to Repost

MRC ask “why the demo?”

At the last PRIME Steering Group Meeting, during lunch I was approached by
Elizabeth Mitchell of the MRC and asked what we expected to achieve by the
demo outside the MRC, when all that can be said by them has been said. She
said that there were no more replies they could think of and that our
energies may well be better served elsewhere, I wonder why.
From this I got the feeling that they would rather us not be there and would
wish me to cancel that particular demo. I tend to think why? Will they find
us an embarrassment to them?

Surely in country such as our we have if we feel our needs and interests are
not being met have the freedom of speech to say so and the democratic right
do peacefully demonstrate to put this point across. I shall be replying to
Elizabeth Mitchell to say as much, also the question must be if they don't
think the demo would serve any useful purpose why then don't they just
ignore it.

This also leads me to think are they running scared, my daughter said my
reply should have been "because we believe in our democratic right to
protest if we feel we are not being represented or treated fairly".

Anyone wishing to send his or her comments her e mail is:
elizabeth.mitchell@...


Trev
MERSC
Patron Gary Frankum - The UK’s No 1 Celebrity Sufferer

Hi - Permission to Repost

Sky News & May 12

This from a Sky News Reporter

“Trevor, Thanks for getting in touch with me. I have entered all the details
into our diary and we will hopefully cover the protest. How many people are
involved and would some of them talk to us?”

So where do we go from here, what do I tell her? How many are willing to
attend? How many are willing to speak? This is our chance but we have to
keep lobbying the media, we have to let them know grasp it with both hands.

You tell me it’s your demo.

Trev
MERSC
Patron Gary Frankum - The UK’s No 1 Celebrity Sufferer

Hi – Permission to Repost

May 12 & Gary Frankum

The details and timings for the 3rd Official International ME Awareness Day
Demonstrations on May 12 2005 and Gary Frankums’ Patrons Profile ‘no holds
barred’ are now on the MERSC Website.

Both are on the home page www.erythos.com/MERSC

Trev
MERSC
Patron : Gary Frankum – The UK’s No 1 Celebrity Sufferer

Hi – Permission to repost

An Alliance Member Replies

Following my post: Another victim – Update, in which I said, “interesting to
note that only two members of the ME Alliance Groups have posted messages
while the rest seem to wallow in oblivion lost in their own little world”. I
have been asked to forward to all groups, which have received the said mail,
the following

Dear Trev,

As the Trust is a member of the Alliance, we would be grateful if you would
post this message to any message board or private recipient to whom you sent
the message about the Alliance (below) so that there can be no
misunderstandings.

We were very sorry to hear of Sheila Barry's illness. Sheila is the mother
of Carli, who was a writer for TYMES Magazine in the years before her tragic
death. Sheila had also volunteered to be Co-Ordinator of the Tymes Trust
Friends.

As we know the family personally we sent them a card to their home address.
We will not be posting a public notice as we feel it is better to do this in
a private capacity.
All best wishes,

Jane.

Jane Colby
Executive Director
The Young ME Sufferers Trust

Thanks to Jane for this and now we must look forward, and be prepared to
move forward.

Trev
MERSC
Patron: Gary Frankum – The UK’s No 1 Celebrity Sufferer

Hi – Permission to repost

Another victim - Update

To save time by trying to acknowledge each mail individually This is going
to all saying: Thank to you all for your wonderful messages of sympathy,
they wil be sent to Sheila, interesting to note that only two members of the
ME Alliance Groups have posted messages while the rest seem to wallow in
oblivion lost in their own little world. Sheila’s husband Geoff is grateful
for your support and as such has given permission for me to publish the
details of where Sheila is, address as follows, support Sheila and you help
Geoff.

Sheila Barry
Ward 2
Bootham Park Hospital
York
YO30 7BY

Tel: 01904 610777

Trev
MERSC
Patron – Gary Frankum – The UK’s No 1 Celebrity Sufferer

Here is the reply I received to my letter to the Medical Research
Council. I hope it might be of use to someone.

Neil

15 April 2005
Dear Mr Brown,
Thank you for your letter of 28 March 2005.
Taking your points in turn, the reference to CFS/ME
being "unassigned research" appears in one of the web pages
describing the spread of our funding. CFS/ME was put in the
"unassigned research" category as it was considered to cross the
boundaries of many of the research divisions.

I should stress that these research divisions were simply a
convenient way of dividing up our spend for reporting purposes and
were neither a scientific classification nor a
philosophical viewpoint. Other areas of science e.g. anaesthesia
were designated similarly. It is helpful that you drew our attention
to the need for an explanation of the term "unassigned research".

When researchers put together a proposal they are required to define
the population they are studying, how they will find participants in
the study, as well as taking account of the need for comparison in
the future with similarly defined populations. ICD10 is the
international classification used in the monitoring of the incidence
and prevalence of diseases and other health problems. It is used
mainly for statistical and health management purposes and is not
generally operationalised for research purposes.

Since 2002, the MRC has received 12 applications for funding related
to CFS/ME that have not been funded. A summary is provided below:

1. Genesis of CFS (two applications)
2. Population based study of CFS (two applications)
3. Determinants & prognosis of CFS (two applications)
4. Stress responses in CFS
5. Spectroscopic studies of CFS
6. Clinical and laboratory characterisation of CFS/ME patients
7. Treatment of CFS: randomised controlled trial
8. Facilitated self-help of CFS: randomised controlled trial
9. Factors in CFS/ME in young people.

In each case, the application was considered by our scientific Board
in competition with other demands on funding. None of these
applications met the high scientific standard required for funding.

The MRC does not normally ring fence funds for specific disease
areas, nor commission research. Research proposals in all areas must
demonstrate that the research will contribute to maintaining and
improving health. As described above, proposals compete for
the funding available. High quality research in particular areas of
strategic importance may be given priority in competition for funds,
and this is the case with CFS/ME. However,research excellence is
always the primary consideration and we continue to invite high
quality research proposals into any aspect of human health.

Yours sincerely

S G Burden

Medical Research Council 20 Park Crescent London W1B 1AL
tel: (switchboard) 020 7636 5422 main fax: 020 7436 6179
www.mrc.ac.uk
tel: (direct line) 020 7670 5117 direct fax: 020 7436 2665 email:
simon.burden@...

Hi – Permission to repost

Another victim

Yes ME claimed another victim not a sufferer but a devoted carer and seeker
of the truth Sheila Barry, devoted mum of the late Carli as had a nervous
breakdown and is in hospital, it is not known when she will come out, the
trauma of the last 4 years with the whitewash of the inquest and everything
has finally wore her down, thus proving once more that the illness does not
affect only the sufferers.

So here we are still having to put up with second rate theories and second
rate treatment when there should be the search for a cure.

I am sure there will be many whose hearts are with Sheila and Geoff at this
time, ours at MERSC are, and may I also thank Geoff for giving me permission
to post this sad news, another shed tear in the history of ME.

Trev
MERSC
Patron: Gary Frankum – The UK’s No 1 Celebrity Sufferer

Hi – Permission to repost

Thanks

Just a quickie to say thanks from the person who asked for deatails abouth
the court of human rights

Trev
MERSC
Patron: Gary Frankum – The UK’s No 1 Celebrity Sufferer

Hi Paul – Permission to repost

May 12 at the MRC

Yes indeed, as the ME Alliance have seen fit to ignore my suggestion of a
demo outside the MRC on May 12, hardly surprising as some of them may well
be the departmental shoeshiners.

I have once more been in contact with the Met Police and asked permission
for a peoples demo, the initial signs are optimistic.
The criteria is:
Max 50 people
No Loudspeakers
Reasonable sized posters acceptable
No large banners
No presentation as such but the MRC has a letter box open to the public.

As long as those there do not impede public access there should be no
problem

More later

Trev
MERSC
Patron: Gary Frankum – The UK’s No 1 Celebrity Sufferer

Hi Permission to Repost

Court of Human Rights

I have recently received the following

I have obviously been concerned with the recent NHS Job Adverts for Trainee
Clinical Fatigue Therapists. These highlighting the fact the UK is still
treating M.E./C.F.S./C.F.I.D.S as a form of somatic disorder. As the UK is
ignoring the various World Health Organisation's International
Classification of Disease's Classifications, I consulted the European Court
of Human Rights in Strasbourg as I feel U.K. M.E. patients are being
violated on The Universal Declaration of Human Rights on at least 8 counts.
Articles 1, 2, 3, 5, 6, 12, 14 and 25.

They asked me to get a letter together to have a case opened on behalf of
all M.E. patients in the U.K., I have no legal education, nor every detail I
need to validate our point, do you know who can help me with this? I've
called numerous Law Firms who,
if they even checked into it, came back and said, "You won't be able to
proceed with this case as too many UK Doctors are in Dispute." My response
to them is, UK Doctors, Nurses and Clinicians can argue it back and forth
all they want, but whilst there arguing it out, they are ignoring
International Research, and the WHO's ICD classification.

Can you help me formulate the statement, I want to include all the relevant
WHO ICD classification reference numbers; and the information attached to
that classification,
The Recent NHS Job ads for Trainee Fatigue Therapists and the articles of
the Universal Declaration of Human Rights which I believe U.K. M.E. patients
are being violated against.
Do you think that would outline it clearly enough? Also do you know where I
could locate a complete list of the WHO related classifications please?
(Name Witheld)

Well can anyone help? Please forward any advice and or info and I’ll pass it
on.

Trev
MERSC
Patron: Gary Frankum – The UK’s No 1 Celebrity Sufferer

Hi -  Permission to repost

Could you also let me know the name of eth group you are representing

The Timetable for the May 12 Event is as follows:

10:30 Onwards gather for static demonstration outside Department of Health
1:00 Presentation to 10 Downing Street
Presentation to consist of letters and items from local people as to what
they really want with regards to ME, Whether They Be Sufferer, Parent,
Friend or Carer
1:30 – 1:45 Move to Parliament to join Lobby Queue
2:00 Onwards enter Parliament to lobby MP’s who are to be given a copy of
all items presented to 10 Downing Street. Should Parliament not be sitting
we shall either continue to demonstrate outside the department of Health or
go to Parliamentary Green and carry on the demonstration there. It will be
up to the participants, who will be asked to vote on what they think the
best course of action, which will be then carried out.
4:00 Expected end of event

Trev
MERSC
Patron Gary Frankum – The UK’s No 1 Celebrity Sufferer

With reference to "A challenge in aid of research"
http://listserv.nodak.edu/scripts/wa.exe?A2=ind0411C&L=co-cure&P=R3184
we are delighted to confirm that MERGE has received Ł4000 of matching
funding
from Mr Bearman. The response to this appeal - from individual ME patients,
ME Groups, and Corporate Friends - was heartening, and a great example of
"energising ME research" in action. Many thanks to all who contributed or
gave this appeal their support.

Dr Neil Abbot
Director of Operations
MERGE
ME Research Group for Education and Support (Charity no. 1080201) The
Gateway, North Methven St, Perth PH1 5PP, UK A pdf of the Parliamentary
Briefing Paper by Linda Dunn is now available
http://www.meresearch.org.uk/archive/parliament.html

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Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
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I have benefited myself and know many who have benefited from reducing food
and chemical allergies and sensitivities, which I believe to be quite common in
a wide range of chronic illnesses.  In some cases, they may be prominent, in
others they may play a more subtle role, but one might as well minimize all
possible sources of symptoms no matter what your illness.



Most people who have looked into the area of the “hidden” or hard-to-detect
food sensitivities don't realize that only 1 or 2 allergy/sensitivity blood
tests is often not enough.  I've had probably a dozen blood tests for food
allergies/sensitivities, of all the best sorts, and now realize that they do
little
good when your sensitivities are very widespread, and they can be misleading
even in those with only a few sensitivities.  I have found the at-home,
do-it-yourself free pulse testing allows one to fashion a diet with the least
allergens more effectively than the various blood tests and skin tests, since no
test detects all sensitivities and the reactions also tend to vary so much
depending on how much one has been recently eating a particular food.  So, over
many
years, and especially in the last 2 or 3 years, I have been improving on how
one can use the short cut and regular pulse tests to best advantage.  You can
read about it at no charge in articles at: www.members.aol.com/SynergyHN.
These articles are all provided as a public service and are not part of a money
making venture.



I went from a stage when I was constantly fighting weight gain (due to the
food cravings associated with the food allergies) to one where the food
sensitivities and allergies were so severe I became 30 lbs underweight. One can
have
reactions ranging from diarrhea to constipation, high or low blood pressure,
gastrointestinal or respiratory symptoms, depression or anxiety, muscle or joint
aches, heart arrhythmias and palpitations, migraines, attention problems
etc..-- the ranges of reactions are so varied. But the pulse test allows one to
fairly quickly identify one’s sensitivities.  I also found that my immune
function was improved through reducing these sensitivity reactions.

Two quick tests to get a sense as to whether one has food reactions are to
see if you have a different pulse rate when sitting than when standing.  Or you
can take your pulse after every meal, and before rising and going to bed, and
if it varies more than a few beats per minute over several days, it may
indicate you have food sensitivities (but is less likely to if your diet is very
constant).  It should be noted that if you are on beta blockers or a pacemaker,
these tests may not work, but other methods are available.

Hope this helps someone.  The Summaries of two articles are below.



Joyce Waterhouse, Ph.D.



From Issue 5 of CISRA’s Synergy Health Newsletter  (see
www.members.aol.com/SynergyHN for complete articles, as well as others on this
topic and other
topics)
Food Allergy/Sensitivity:  The Pulse Test and Other Strategies
by J. C. Waterhouse, Ph.D.

(Disclaimer:  This material is intended for information only and is not
medical advice. Neither CISRA nor the editor receive funding from any doctor,
lab,
or manufacturer of any medication or associated products.)

     Summary    Many people have found that reducing food allergies,
sensitivities and intolerances has been helpful in reducing a wide range of
symptoms
and reducing exacerbations in many diseases in which the immune, endocrine or
nervous systems are involved (e.g., chronic fatigue syndrome, fibromyalgia,
migraines, asthma, inflammatory bowel disease, irritable bowel syndrome and
autoimmune illnesses, such as multiple sclerosis, lupus, and rheumatoid
arthritis).
This article focuses on food reactions, although reactions to inhaled
chemicals are also  important and will be touched on briefly.  Food
allergies/sensitivities/intolerances are often neglected because the reactions
may be complex
and variable, and involve multiple immune and non-immune mechanisms.  Only a
small proportion of people experience very obvious reactions, like an immediate
rash or anaphylactic reaction (IgE mediated, Type I reaction).  More common
and more difficult to detect are the delayed immune sensitivities (Types II, III
and IV) and the intolerances, such as lactose, gluten or fructose
intolerance, or problems due to lectins or oxalates.  Even the IgE mediated
reactions are
not always easy to identify and may include a late phase reaction.  Reactions
are not limited to proteins, but have been shown to occur when other
substances combine with proteins to form haptens.  Increases in intestinal
permeability due to a variety of causes can allow potentially allergenic
substances to
enter the blood stream.  (Note:  for convenience, allergy or allergen is meant
to include all types of IgE and non IgE reactions.)

     Unfortunately, many people do not realize that food and chemical
allergies/sensitivities/intolerances are contributing to or causing their
symptoms.
The phenomenon of masking, the multiplicity of mechanisms and tests, the
effects on systems other than the gastrointestinal tract and the changing level
of
sensitivity with exposure, all complicate the identification of food reactions.
  Some people try just one type of test and eliminate a few foods and believe
this is all they can do.  Many do benefit greatly in this way, especially if
the test is fairly comprehensive, like the ELISA/ACT test (covers 390 foods and
chemicals and Types II, III and IV sensitivities; a controlled study showed
that use of the test results led to a 30-50% symptom reduction in fibromyalgia
patients).  However, for others, an incomplete approach leads them to miss
many foods that cause reactions via a different mechanism and/or they develop
new
sensitivities to the foods that replace those they eliminated.  As a
consequence, there is an underestimation of the role of food reactions in many
illness.

     This article briefly discusses 4 reasons food
allergies/sensitivities/intolerances are often neglected and 5 reasons it is
important to detect and
eliminate or treat them.  Next, the article presents the pulse test, as
described
by Arthur Coca, M.D., as well as a shortcut version of the test and ways of
maximizing the test’s effectiveness.  Then follows a discussion of some other
methods, along with some of the experiences of the author from 15 years of
learning about and dealing with severe food sensitivities.  Among the ideas and
issues included are:  1. a brief outline of 8 types of food reactions, including
ideas on how to minimize problems with oxalate-containing foods,  2. the
elimination diet with food “challenge” testing, 3. the rotation diet and how
it
may be modified to reduce problems with “unmasking” that may intensify
symptoms,  4. how food cravings and other “withdrawal” symptoms may be used
to help
identify allergens, 5. a brief discussion of  immunotherapy,  6. the importance
of striving for maximal avoidance of allergens, including chemicals, to allow
the body to become less hypervigilant, 7. the potential role of microbes,
such as newly-identified Mycoplasma species, Entamoeba histolytica, Candida
albicans and certain viruses in creating a vicious cycle, in which microbes may
increase allergies and allergies may make it harder to eradicate microbes, 8.
other ways proposed to reduce reactions, such as guaifenesin and low
carbohydrate
diets for hypoglycemia, 9. survey results showing avoidance of problem foods
and chemicals being rated one of the  most successful treatments by chronic
fatigue syndrome patients, 10.  increased knowledge seems likely to increase
benefit for those who have not had as much success with allergy testing.  The
final section includes a Reference section and a Resource section, providing
lists of companies and organizations that offer products and services that may
be
of use in combating allergies.

     For those with moderate to severe sensitivities, the help of a physician,
preferably one trained by the American Academy of Environmental Medicine
(AAEM.com), is highly recommended.  However, it is the view of the author, that
even with the physician's assistance, do-it-yourself methods are a helpful, and
for some, an essential adjunct to achieve maximal health benefits.

Preview of article for Issue 8: 2004 Preview/Update on Food
Allergies/Sensitivities and the Pulse Test:  Withdrawal Reaction Mechanisms,
Overcoming
Resistance, New Pulse Test Tips and Some Other Methods
by J. C.  Waterhouse, Ph.D.

Overview.  This article provides a new preview/update of an article for the
next issue of CISRA’s Synergy Health Newsletter.  A number of subjects that
were not covered previously will be discussed, as well as some new techniques
and
strategies that I have found to be helpful in the last 2 years.  For a more
complete background, readers should refer to the article in Issue 5 on food
allergies/sensitivities/intolerances and the pulse test, including the Cautions
(Cautions reprinted below), as well as the 2002 food allergy/sensitivity
preview article  (see SynergyHN Home page). In this current preview/update, a
brief
scientific explanation of food allergy/sensitivity symptoms is provided,
including the probable cause of food allergy withdrawal symptoms.  This article
also covers how to overcome a resistance to this approach by recognizing the
role
of food addiction and how one can view dietary change as a challenge and
opportunity for greater health and empowerment that can accompany other
treatment
approaches.  There is also more detail regarding some methods that may help
those who have gotten rid of the worst allergens, but still may be able to go
further to maximize the benefit they can achieve and for those who are near
universal reactors.  There will be tips on the pulse test, as well as mention of
methods to use if one is unable to use the pulse test as an aid.  It is also
suggested that certain infectious causes may be behind extensive sensitivities
in some patients.  More information on these topics and more references have
been provided in other articles in CISRA’s Synergy Health Newsletter.  In this
brief preview, these articles will simply be referred to by the issue of the
newsletter in which they occur (see SynergyHN Home page for these previous
issues of the newsletter).


[Non-text portions of this message have been removed]

Here's a direct link to Vance's presentation (which is nicely illustrated):
  http://tinyurl.com/5yh9b i.e.
http://www.meresearch.org.uk/melibrary/publications/parliament/parliamentpre
s1.html

Tom
-----------------------------------------------
On 2nd March 2005, the Cross Party Group on ME (XPG) at the Scottish
Parliament
http://www.scottish.parliament.uk/msp/crossPartyGroups/groups/cpg-me.htm
hosted a reception for MSPs, members, scientists, and friends, designed to
bring together a range of people concerned about the problem of ME/CFS, and
to raise awareness of the issues among parliamentarians.

The meeting was opened by Alex Fergusson, Chairman of the XPG, who described
how the principal aims of the group are to help MSPs to address and
represent the needs of ME sufferers to the Scottish Parliament and
Executive, and to provide MSPs with sources of information and expertise on
issues affecting ME sufferers, their families and carers.

Before the reception proper, three speakers gave short presentations on
areas of special concern in ME/CFS. Linda McLean described her experiences
as a carer, Dr Gregor Purdie presented the GP perspective, and Dr Vance
Spence described issues surrounding research and funding.

A text, picture, and cartoon version of the 10-minute presentation,
"Biomedical research in ME/CFS: issues and challenges" by Dr Vance Spence,
Chairman of MERGE, can be read at
http://www.meresearch.org.uk/archive/parliament.html.

As Vance explains, "This has a personal aspect for me - it is 25 years this
month that I became ill with an infection, the beginning of my own journey
into ME. Little did I know that, a quarter of a century later, I would be
sitting before a room full of parliamentarians and patients and carers
talking about the need for funding of biomedical research for thousands of
patients like myself. Yet, here we are. It is bizarre, but here we
are........."

Dr Neil Abbot
MERGE (Charity no. 1080201)
The Gateway, North Methven St, Perth PH1 5PP, UK
http://www.meresearch.org.uk ENERGISING ME RESEARCH

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FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
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PERMISSION TO REPOST
Campaigning for Research into Myalgic Encephalomyelitis


FAIR REPRESENTATION AT PARLIAMENT

The recent job descriptions confirm ME patients' worst fears re. the new
'CFS/ME' centres and satellites: more psychiatric/psychological style
treatment...

As is the case also with the PACE and FINE trials.

What is also becoming evident is that these projects will not be about Ramsay
G93.3 ME but a whole range of illnesses and disorders...

People with ME fear the results of both projects: The all inclusive, onesize
fits all approach will mean the results will most probably be successful for the
majority of participants listed under the 'CFS/ME' banner but then used as an
excuse to set back the case for physical research into G93.3 ME.

We feel it is vital at this stage that a range of views is heard at Westminster
- with this in mind, please consider signing RiME Petition 2, which will run for
two more weeks. Signatures can be accepted over the 'net and added with pp next
to them.

Best Wishes, Paul Davis

rimexx@...

http://www.erythos.com/RiME/


[Non-text portions of this message have been removed]

Hi.  As this is my first post, I will very briefly introduce myself and share
a little of my medical and treatment history.

My name is Joyce Waterhouse and I have been disabled by ME/CFS for over 20
years.  I only got the Lyme diagnosis about 4 years ago (but got 2 tick bites in
East Tennessee back in 1981, at least 6 months before I became ill).  I was
treated with high dose oral antibiotics for 3 years or so without much benefit
(though some moderate Herxing) and have begun using the Marshall Protocol
about 4 1/2 months ago and have been having better results on the lower doses of
antibiotics used in this protocol in just this short time than I had with the
oral ones at a higher dose for a much longer time.

Before antibiotic treatment, I had benefited from food and chemical
sensitivity reductions, guaifenesin and a low carb. diet (and a little from
supplemental magnesium glycinate and a few low dose drugs: Klonopin, sinequan
and
levsin). During the first few years of my illness, I was extremely ill and was
30
pound underweight and more than 95% bedridden for several years.  The food
allergy reduction alone was what helped me out of that very worst stage to being
only 80-85% bedridden and a normal weight.

Recently (about 10 months ago), I benefited greatly from 2
remedies/preventive strategies that have prevented colds and flus for me, which
previously had
been very frequent.  I also have benefited greatly recently from reducing
vitamin D, which is part of the Marshall Protocol.  One of the good things about
the Marshall Protocol, which is described in a little more detail below, is that
it was developed by a nonprofit foundation and one is helped by volunteers at
the web sites for free (see below).  No one involved is selling anything.

When I began improving from the guaifenesin and low carb diet in 1996, I
started writing for a newsletter on the web (I no longer need the guaifenesin,
now
that I'm on the Marshall Protocol).  Below, I include something I wrote about
an upcoming conference in Chicago and the titles of several articles I wrote,
if anyone is interested in looking at them.

I would encourage anyone who is interested to consider attending the
conference in Chicago on March 12-13, or if you can't, consider forwarding the
information to others you know who might be interested, or who live close.  If
you
go, I will see you there, as I plan to go myself.

I look forward to getting to know you in the future and exchanging more
information on what has helped and what has not helped in each of our cases. You
can read more about a number of topics, including the things that have helped
me, at the web site below.

I am in the U.S. myself, but some people in the UK are also using the
Marshall Protocol.  One of the leading researchers on it, Dr. Andrew Wright is
coming
to the conference in Chicago from the U.K.  (see
autoimmunityresearch.org/chicago2005.htm ).

Joyce Waterhouse, Ph.D.

Chronic Illness Support and Research Association (CISRA)
CISRA’s Synergy Health Newsletter
<A HREF="http://members.aol.com/SynergyHN/">www.members.aol.com/SynergyHN</A>

Issue 8 Preview Excerpt--
Marshall Protocol: Conference in Chicago, IL, March 12-13
by J.C. Waterhouse, Ph.D.

**Note:  Experience indicates that the Marshall Protocol (MP) must be studied
and followed carefully in order to be effective and avoid possibly serious
consequences due to enhanced antibiotic effectiveness even at very low doses
(for free assistance, go to Autoimmunityresearch.org, marshallprotocol.com or
sarcinfo.com)

Conference on Chronic Disease and Anti-Bacterial Therapy
(Chicago, IL, March 12-13)

A conference for physicians, patients and policymakers is being sponsored by
the Autoimmunity Research Foundation and is scheduled for March 12-13, 2005 in
Chicago (register by March 1, 2005).  The conference is entitled "Recovering
from Chronic Disease."  The focus will be on: Sarcoidosis (Reggie White's
Disease), Chronic Fatigue Syndrome, Chronic Lyme Disease, Rheumatoid Arthritis
and
Fibromyalgia. At the conference, there will be speakers from the NIH and FDA:
James Kiley, PhD, Director of Division of Lung Diseases, NHLBI/NIH, and
Commander Sarah Linde-Feucht, MD, of the FDA OOPD (Office of Orphan Product
Development). Other speakers will include: Lida Mattman, PhD, a Nobel prize
nominee,
famous for her groundbreaking textbook “Cell Wall Deficient Forms: Stealth
Pathogens”; Leonard Jason, PhD, a prolific CFS/CFIDS/ME researcher and author
of
an important epidemiological study on CFIDS;  Millie Coker-Vann, PhD,
Arthritis Research Center; and Andrew Wright, MD, a researcher in bacterial
causes of
CFS/ME and FMS in the UK, who has also done innovative work in techniques to
photograph pathogens in patients' blood.  In addition, tutorials and panel
sessions will be held with the assistance of a number of medical professionals
and
support personnel.

Trevor Marshall, PhD, will also be a presenter at the conference.  He has
been a researcher in diverse fields, such as cryptorchidism, male and female
infertility, and subcutaneous insulin infusion (in diabetes). Most recently he
has
deduced and published a bacterial pathogenesis for Th1 diseases, including
Chronic Lyme Disease, CFS and Sarcoidosis. He has also developed a treatment,
which some have called the 'Marshall Protocol' (MP), which is being implemented
by physicians around the world.  Although Chronic Lyme Disease, CFS, and
Fibromyalgia are not currently widely accepted as TH1 diseases, Dr. Marshall has
found that a more accurate view of what the TH1/TH2 dichotomy means, as well as
new vitamin D data, indicate that these diseases really are diseases of TH1
inflammation. For information on registration, see
http://autoimmunityresearch.org/chicago2005.htm (register by March 1, 2005).

See  <A
HREF="http://members.aol.com/SynergyHN/">www.members.aol.com/SynergyHN</A> for
the rest of this Issue 8 Preview and
the following articles:

New Evidence of Excessive Levels of the Active Form of Vitamin D (1,25 D) and
it’s Role in Autoimmune Illnesses, Chronic Fatigue Syndrome,

Fibromyalgia and Lyme Disease



Abstract:
Recent research shows that the active form of the vitamin D hormone (1,25 D)
is present in excessive levels relative to the inactive 25 D form in patients
diagnosed with a number of inflammatory illnesses, such as certain autoimmune
illnesses, chronic fatigue syndrome, fibromyalgia and Lyme disease.  Evidence
suggests that this is due to unregulated production of 1,25 vitamin D by
macrophages in the course of an excessive TH1 immune response. Research
indicates
that this occurs in response to cell wall deficient forms of bacteria
parasitizing immune cells and other tissue. The relationship of this new
information to
past research on the role of vitamin D in autoimmune illnesses, like multiple
sclerosis, is discussed.  The potential benefits of additional research
measuring both forms of vitamin D include improved diagnostic methods, testing
of
current theories and guidance for treatment in a variety of illnesses. The high
rate of remissions using a new protocol developed by Marshall et al (2, 4, 5)
for treating sarcoidosis provides additional evidence of the importance of
1,25 vitamin D hormone testing and the use of the D ratio (1,25 D:25 D).  This
protocol’s effectiveness in sarcoidosis suggests that a similar approach may
be
effective in other illnesses that are found to have similar vitamin D
patterns. To ensure accurate results for 1,25 D in the serum, laboratories must
freeze the sample for transport and not all labs currently do so.

A New Protocol for Autoimmune Illnesses, Chronic Fatigue Syndrome,
Fibromyalgia and Lyme Disease: Combating Cell Wall Deficient Bacteria and
Excessive
Inflammation (Marshall Protocol)
Shortened Abstract:

A number of patients with illnesses like rheumatoid arthritis, chronic Lyme
disease, fibromyalgia and chronic fatigue syndrome, are having promising
initial results using a protocol developed for the autoimmune disease,
sarcoidosis.
The protocol, developed by Trevor Marshall, Ph.D. (Marshall Protocol),
involves immune system modulation and low doses of particular antibiotics to
combat
cell wall deficient forms of bacteria (CWD). Accurate and up to date
information on the protocol can be obtained free of charge from three web sites
(Autoimmunityresearch.org, marshallprotocol.com and sarcinfo.com). There is a
forum
for doctors and one for patients at marshallprotocol.com. Experience has shown
that the protocol must be studied thoroughly and followed carefully in order to
be effective and avoid possibly serious consequences related to possible
excessive Herxheimer reactions that may occur if the antibiotics are not used in
the manner and at the doses described in the protocol.  Also, patients on the
protocol must minimize exposure to sun, bright light and dietary vitamin D,
since for most patients, not doing so can cause significantly worsened symptoms
and reduced effectiveness of the protocol.

A Parasitic Roundworm Linked to Chronic Fatigue Syndrome
Shortened Abstract:
Lawrence Klapow, Ph.D., has found evidence for a new roundworm species,
provisionally named Cryptostrongyloides pulmoni, in patients with chronic
fatigue
syndrome. In a blinded, controlled study, the roundworm larvae were found in
sputum of almost half the patients and none of the controls. Klapow also
proposes ways in which infection by this species may be able to explain a number
of
common CFS characteristics, like initial respiratory infection, low cortisol,
frequent gastrointestinal complaints, leaky gut, low blood pressure and
neurological symptoms.  The author of this article then speculates on
alternative
treatment approaches.

A Strategy for Completely Preventing Colds and Flus?
This article hypothesizes that: 1. Daily use of very low dose intranasal and
sublingual alpha interferon may be able to entirely prevent respiratory
viruses that cause colds and possibly flus and, 2. Daily use of very small
amounts
of the homeopathic Boiron Oscillococcinum (TM)* can be used to prevent
influenza-like illnesses and gastrointestinal viruses. Some supporting
background and
case studies are discussed, as well.

(Disclaimer: This material is intended for information only and is not
medical advice. Neither CISRA nor the editor receive funding from any doctor,
lab,
or manufacturer of any medication or associated products.)



[Non-text portions of this message have been removed]

Yeah this confirms RiME's and MERSC's statement that he has lost the plot,
he made a pitiful attempt to justify his stance at the May 12 Peoples Demo
(not supported by certain main groups) last year. The people that attended
were not impressed, so now we must ask, is he digging a hole for himself,
can anyone lend him a shovel. I was there in 1997 at the ForT Lobby and
again in 1998 at the BRAME Parliamentary Meeting. He impressed me and others
then, as such when I asked for a profile of him for the other group I
belonged to, sent me a glowing profile, yet when I for the achievements of
the APPG to go with it, I got nothing, and perhaps that is precisely what
the APPG  has achieved for the most important people, the sufferers.
Challenge here; Prove me wrong, and that goes for the APPG &Tony Wright
Trev
Permission to repost


>From: "Stephen Ralph" <stephen.e.ralph@...>
>Reply-To: MEND-UK@yahoogroups.com
>To: "ME Action UK" <MEActionUK@yahoogroups.com>
>CC: "MEND-UK" <MEND-UK@yahoogroups.com>
>Subject: [MEND-UK] Campaigning for Research into Myalgic Encephalomyelitis
>- APPG Chair supports use of Oxford Criteria
>Date: Mon, 28 Feb 2005 16:42:54 -0000
>
>PERMISSION TO REPOST
>
>Campaigning for Research into Myalgic Encephalomyelitis
>
>APPG Chair supports use of Oxford Criteria
>
>
>
>On Dec. 9 2004, Tony Wright, Chair of the All Party Parliamentary Group on
>ME, said:
>
>.... Regarding the PACE trials... I support the use of the Oxford Criteria
>... as I similarly support the use of the Fukuda and London Criteria for
>them. Such trials will prove an excellent way to test such criteria.
>
>Criteria such as the Oxford and Fukuda do not describe the pattern of
>symptoms people with ME experience i.e. Ramsay, below. Let's look at one of
>them:
>
>The CFS Oxford Criteria was set out in the Oxford Guidelines - MC Sharpe et
>al. A Report - Chronic Fatigue Syndrome: Guidelines for Research, JRSM
>Vol.84, Feb. 1991, pp 118-21.
>
>Of the 21 clinical and scientific researchers who wrote the Oxford
>Guidelines, eight were in psychiatry or psychology, another six were
>research scientists, non-psychiatric clinicians were few (see BM Hyde, The
>Clinical and Scientific Basis of ME/CFS, 1992, 12). Notable exclusions were
>DS Bell, EG Dowsett, BM Hyde, AM Ramsay and JS Richardson, experts on ME
>and its epidemiology.
>
>OXFORD CRITERIA (1991)
>
>Chronic Fatigue Syndrome (CFS)
>
>a:- A syndrome characterised by fatigue as the principal symptom
>
>b:- A syndrome of definite onset that is not life long
>
>c:- The fatigue is severe, disabling, and affects physical and mental
>functioning
>
>d:- The symptom of fatigue should have been present for a minimum of 6
>months during which it was present for more than 50% of the time
>
>e:- Other symptoms may be present, particularly myalgia, mood and sleep
>disturbance
>
>f:- Certain patients should be excluded from the definition. They include:
>
>
>i:- Patients with established medical conditions known to produce chronic
>fatigue (eg severe anaemia). Such patients should be excluded whether the
>medical condition is diagnosed at presentation or only subsequently. All
>patients should have a history and physical examination performed by a
>competent physician
>
>ii:- Patients with a current diagnosis of schizophrenia, manic depressive
>illness, substance abuse, eating disorder or proven organic brain disease.
>Other psychiatric disorders (including depressive illness, anxiety
>disorders and hyperventilation syndrome) are not necessarily reasons for
>exclusion.
>
>The Oxford Criteria is too inclusive. A number of different types of
>illness including ME are being lumped together under the single banner
>'CFS'. In the words of Dr Dowsett 'CFS' is a 'facile euphemism for ME...
>which enmeshes this serious and potentially life long neurological illness
>in a web of trivial fatiguing sub entities... '
>
>The Royal Colleges Report on CFS 1996 used the Oxford Criteria and claimed
>up to 1.4 million people in the UK had CFS. Estimates of ME incidence are
>much lower.People with ME fear the results of the PACE trials, as they do
>those associated with the new 'CFS/ME' NHS centres and satellites: The all
>inclusive, onesize fits all approach will mean the results will most
>probably be successful for the majority of participants listed under the
>'CFS/ME' banner but then used as an excuse to set back the case for
>physical research into G93.3 ME.
>
>The above feel the Chair of the APPG should not have made such a brash and
>definitive statement without having consulted more widely.
>
>They wonder if he, as a member of the ruling party, is simply endorsing
>what has already been decided for the sake of convenience and political
>expediency.
>
>What is scary is that politicians can make public statements like this
>which are against the interests of vulnerable people; and that they are
>being allowed to get away with it.
>
>If you are concerned, please take the matter up with Tony Wright via your
>MP. And please send us copies of your correspondence.
>
>Tony Wright MP, House of Commons Westminster SW1A OAA wrighta@...
>
>
>-------------------------------------------------------------------------------\
-
>
>
>Action for ME?
>
>Please remember, also, that Action for ME - an organisation which was set
>up originally by ME people for ME people is supporting the PACE trials. It
>would seem reasonable to conclude, therefore, that it also supports the use
>of the Oxford Criteria.
>
>They have been claiming credit for clarifying that ME is listed as
>neurological disorder by WHO. Given this fact, shouldn't they be pushing
>for a strict an ME criteria as is possible?
>
>They appear more interested in pleasing the Govt/'Wessely psychiatrists'
>than listening to/representing people with ME.
>
>If you are concerned, then take the matter up with:
>
>Chris Clarke, 4 Deans Court St Paul's Churchyard EC4V 5HH
>afme@...
>
>
>
>Paul Davis, RiME, 10 Carters Hill Close, Mottingham SE9 4RS
>
>rimexx@...
>
>
>-------------------------------------------------------------------------------\
-
>
>
>The following is taken from AM Ramsay, ME and Post Viral Fatigue States,
>1988, Chapter 3 'The endemic form of the disease'.
>
>The clinical features of myalgic encephalomyelitis
>
>The onset of the disease is similar to those described in the various
>recorded outbreaks. Thus it may be sudden and without apparent cause, as in
>cases where the first intimation of illness is an alarming attack of acute
>vertigo, but usually there is a history of infection of the upper
>respiratory tract or, occasionally, the gastrointestinal tract with nausea
>and/or vomiting. Instead of an uneventful recovery the patient is dogged by
>persistent and profound fatigue accompanied by a medley of symptoms such as
>headache, giddiness, muscle pain, cramps or twitchings, muscle tenderness
>and weakness, paraesthesiae, frequency of micturition, blurred vision
>and/or diplopia, hyperacusis (sometimes alternating with deafness or normal
>hearing), tinnitus and a general sense of 'feeling awful'. Some patients
>report the occurrence of fainting attacks relieved by a small meal or just
>eating a biscuit; these attacks are the result of hypoglycaemia and we are
>reminded of the three young women in the outbreak in Finchley who were
>admitted to hospital in an unconscious state, the result of acute
>hypoglycaemia. All cases run a low-grade pyrexia, seldom exceeding 100F and
>usually subsiding within a week. A very thorough examination of the central
>nervous system should be made and this should be accompanied by a careful
>estimation of muscle power, especially in the limbs and neck. A search for
>enlarged lymph nodes should never be omitted. If muscle power is found to
>be satisfactory, a re-examination should be made after exercise; a walk of
>half a mile is sufficient, as very few ME cases can manage more.
>
>Once the syndrome is fully established the patient presents a multiplicity
>of symptoms which can most conveniently be described in three groups.
>
>1. Muscle phenomena
>
>Muscle fatigability whereby, even after a minor degree of physical effort,
>three, four or five days, or longer, elapse before full muscle power is
>restored is unique and constitutes the sheet anchor of diagnosis. Without
>it I would be unwilling to diagnose a patient as suffering from ME, but it
>is most important to stress the fact that cases of ME of mild or even
>moderate severity may have normal muscle power in a remission. In such
>cases, tests for muscle power should be repeated after exercise. In severe
>cases of ME, muscle spasms and twitchings are a prominent feature and give
>rise to swollen bands of muscle which are acutely tender. In less severe
>cases, muscle tenderness may not be so readily elicited but careful
>palpation of the trapezii and gastrocnemii (the muscle groups most commonly
>involved) with the tip of the forefinger should enable the examiner to
>detect minute foci of exquisite tenderness. It is interesting to note that
>Dr Garnet Simpson in Sydney, Australia (1986), without any prior knowledge
>of my writings devised the identical technique and found that detection of
>these of these foci 'will make the patient yelp'. In the aftermath of the
>disease patients frequently fumble with relatively simple manoeuvres such
>as turning a key in a lock or taking the cork out of a bottle.
>
>2. Circulatory impairment
>
>Most cases of ME complain of cold extremities and hypersensitivity to
>climatic change, but the most striking illustration of this condition is
>the observation by relatives or friends of an ashen-grey facial pallor,
>some twenty or thirty minutes before the patient complains of feeling ill.
>
>3. Cerebral Dysfunction
>
>Impairment of memory, impairment of powers of concentration and emotional
>lability are the cardinal features. Failure to recall recent or past
>events, difficulty in completing a line of thought, thus becoming
>tongue-tied in the middle of a sentence, and a strong inclination to use
>wrong words saying 'door' when they mean 'table' or 'hot' when they mean
>'cold' (two doctors have testified to this) are all common deviations from
>normal cerebral function. A complete inability to comprehend a paragraph
>even after re-reading is a further example of this defect. This may be
>accompanied by bouts of uncontrollable weeping which can prove very
>embarrasing to those who pride themselves on a stoical temperament.
>Alterations of sleep rhythm or vivid dreams, or both, are common and
>occurred in patients with no previous experience of such phenomena. In a
>very tragic case, complete reversal of sleep rhythm in a young university
>student led to suicide.
>
>Frequency of micturition and hyperacusis are an almost invariable
>accompaniment of the cerebral features and together with episodic sweating
>and orthostatic tachycardia they can only be attributed to involvement of
>the autonomic nervous system. Though less frequently encountered, and
>usually in severe cases episodic, sweating is a very striking event. I
>encountered this phenomenon fifteen years ago in a patient who used to
>waken in the night to find himself lying in a pool of water. His wife is a
>nurse and reports that his temperature in these episodes is 94 or 95F. His
>condition remains unchanged and the sweating episodes are still occurring.
>
>Variability and fluctuation of both symptoms and physical findings in the
>course of a day is a constant feature in the clinical picture of myalgic
>encephalomyelitis.
>
>
>MEActionUK - it does exactly what it says on the tin
>http://www.meactionuk.org.uk
>http://health.groups.yahoo.com/group/MEActionUK/
>
>[Non-text portions of this message have been removed]
>

PERMISSION TO REPOST

Campaigning for Research into Myalgic Encephalomyelitis

APPG Chair supports use of Oxford Criteria



On Dec. 9 2004, Tony Wright, Chair of the All Party Parliamentary Group on ME,
said:

.... Regarding the PACE trials... I support the use of the Oxford Criteria ...
as I similarly support the use of the Fukuda and London Criteria for them. Such
trials will prove an excellent way to test such criteria.

Criteria such as the Oxford and Fukuda do not describe the pattern of symptoms
people with ME experience i.e. Ramsay, below. Let's look at one of them:

The CFS Oxford Criteria was set out in the Oxford Guidelines - MC Sharpe et al.
A Report - Chronic Fatigue Syndrome: Guidelines for Research, JRSM Vol.84, Feb.
1991, pp 118-21.

Of the 21 clinical and scientific researchers who wrote the Oxford Guidelines,
eight were in psychiatry or psychology, another six were research scientists,
non-psychiatric clinicians were few (see BM Hyde, The Clinical and Scientific
Basis of ME/CFS, 1992, 12). Notable exclusions were DS Bell, EG Dowsett, BM
Hyde, AM Ramsay and JS Richardson, experts on ME and its epidemiology.

OXFORD CRITERIA (1991)

Chronic Fatigue Syndrome (CFS)

a:- A syndrome characterised by fatigue as the principal symptom

b:- A syndrome of definite onset that is not life long

c:- The fatigue is severe, disabling, and affects physical and mental
functioning

d:- The symptom of fatigue should have been present for a minimum of 6 months
during which it was present for more than 50% of the time

e:- Other symptoms may be present, particularly myalgia, mood and sleep
disturbance

f:- Certain patients should be excluded from the definition. They include:


i:- Patients with established medical conditions known to produce chronic
fatigue (eg severe anaemia). Such patients should be excluded whether the
medical condition is diagnosed at presentation or only subsequently. All
patients should have a history and physical examination performed by a competent
physician

ii:- Patients with a current diagnosis of schizophrenia, manic depressive
illness, substance abuse, eating disorder or proven organic brain disease. Other
psychiatric disorders (including depressive illness, anxiety disorders and
hyperventilation syndrome) are not necessarily reasons for exclusion.

The Oxford Criteria is too inclusive. A number of different types of illness
including ME are being lumped together under the single banner 'CFS'. In the
words of Dr Dowsett 'CFS' is a 'facile euphemism for ME... which enmeshes this
serious and potentially life long neurological illness in a web of trivial
fatiguing sub entities... '

The Royal Colleges Report on CFS 1996 used the Oxford Criteria and claimed up to
1.4 million people in the UK had CFS. Estimates of ME incidence are much
lower.People with ME fear the results of the PACE trials, as they do those
associated with the new 'CFS/ME' NHS centres and satellites: The all inclusive,
onesize fits all approach will mean the results will most probably be successful
for the majority of participants listed under the 'CFS/ME' banner but then used
as an excuse to set back the case for physical research into G93.3 ME.

The above feel the Chair of the APPG should not have made such a brash and
definitive statement without having consulted more widely.

They wonder if he, as a member of the ruling party, is simply endorsing what has
already been decided for the sake of convenience and political expediency.

What is scary is that politicians can make public statements like this which are
against the interests of vulnerable people; and that they are being allowed to
get away with it.

If you are concerned, please take the matter up with Tony Wright via your MP.
And please send us copies of your correspondence.

Tony Wright MP, House of Commons Westminster SW1A OAA wrighta@...


--------------------------------------------------------------------------------


Action for ME?

Please remember, also, that Action for ME - an organisation which was set up
originally by ME people for ME people is supporting the PACE trials. It would
seem reasonable to conclude, therefore, that it also supports the use of the
Oxford Criteria.

They have been claiming credit for clarifying that ME is listed as neurological
disorder by WHO. Given this fact, shouldn't they be pushing for a strict an ME
criteria as is possible?

They appear more interested in pleasing the Govt/'Wessely psychiatrists' than
listening to/representing people with ME.

If you are concerned, then take the matter up with:

Chris Clarke, 4 Deans Court St Paul's Churchyard EC4V 5HH
afme@...



Paul Davis, RiME, 10 Carters Hill Close, Mottingham SE9 4RS

rimexx@...


--------------------------------------------------------------------------------


The following is taken from AM Ramsay, ME and Post Viral Fatigue States, 1988,
Chapter 3 'The endemic form of the disease'.

The clinical features of myalgic encephalomyelitis

The onset of the disease is similar to those described in the various recorded
outbreaks. Thus it may be sudden and without apparent cause, as in cases where
the first intimation of illness is an alarming attack of acute vertigo, but
usually there is a history of infection of the upper respiratory tract or,
occasionally, the gastrointestinal tract with nausea and/or vomiting. Instead of
an uneventful recovery the patient is dogged by persistent and profound fatigue
accompanied by a medley of symptoms such as headache, giddiness, muscle pain,
cramps or twitchings, muscle tenderness and weakness, paraesthesiae, frequency
of micturition, blurred vision and/or diplopia, hyperacusis (sometimes
alternating with deafness or normal hearing), tinnitus and a general sense of
'feeling awful'. Some patients report the occurrence of fainting attacks
relieved by a small meal or just eating a biscuit; these attacks are the result
of hypoglycaemia and we are reminded of the three young women in the outbreak in
Finchley who were admitted to hospital in an unconscious state, the result of
acute hypoglycaemia. All cases run a low-grade pyrexia, seldom exceeding 100F
and usually subsiding within a week. A very thorough examination of the central
nervous system should be made and this should be accompanied by a careful
estimation of muscle power, especially in the limbs and neck. A search for
enlarged lymph nodes should never be omitted. If muscle power is found to be
satisfactory, a re-examination should be made after exercise; a walk of half a
mile is sufficient, as very few ME cases can manage more.

Once the syndrome is fully established the patient presents a multiplicity of
symptoms which can most conveniently be described in three groups.

1. Muscle phenomena

Muscle fatigability whereby, even after a minor degree of physical effort,
three, four or five days, or longer, elapse before full muscle power is restored
is unique and constitutes the sheet anchor of diagnosis. Without it I would be
unwilling to diagnose a patient as suffering from ME, but it is most important
to stress the fact that cases of ME of mild or even moderate severity may have
normal muscle power in a remission. In such cases, tests for muscle power should
be repeated after exercise. In severe cases of ME, muscle spasms and twitchings
are a prominent feature and give rise to swollen bands of muscle which are
acutely tender. In less severe cases, muscle tenderness may not be so readily
elicited but careful palpation of the trapezii and gastrocnemii (the muscle
groups most commonly involved) with the tip of the forefinger should enable the
examiner to detect minute foci of exquisite tenderness. It is interesting to
note that Dr Garnet Simpson in Sydney, Australia (1986), without any prior
knowledge of my writings devised the identical technique and found that
detection of these of these foci 'will make the patient yelp'. In the aftermath
of the disease patients frequently fumble with relatively simple manoeuvres such
as turning a key in a lock or taking the cork out of a bottle.

2. Circulatory impairment

Most cases of ME complain of cold extremities and hypersensitivity to climatic
change, but the most striking illustration of this condition is the observation
by relatives or friends of an ashen-grey facial pallor, some twenty or thirty
minutes before the patient complains of feeling ill.

3. Cerebral Dysfunction

Impairment of memory, impairment of powers of concentration and emotional
lability are the cardinal features. Failure to recall recent or past events,
difficulty in completing a line of thought, thus becoming tongue-tied in the
middle of a sentence, and a strong inclination to use wrong words saying 'door'
when they mean 'table' or 'hot' when they mean 'cold' (two doctors have
testified to this) are all common deviations from normal cerebral function. A
complete inability to comprehend a paragraph even after re-reading is a further
example of this defect. This may be accompanied by bouts of uncontrollable
weeping which can prove very embarrasing to those who pride themselves on a
stoical temperament. Alterations of sleep rhythm or vivid dreams, or both, are
common and occurred in patients with no previous experience of such phenomena.
In a very tragic case, complete reversal of sleep rhythm in a young university
student led to suicide.

Frequency of micturition and hyperacusis are an almost invariable accompaniment
of the cerebral features and together with episodic sweating and orthostatic
tachycardia they can only be attributed to involvement of the autonomic nervous
system. Though less frequently encountered, and usually in severe cases
episodic, sweating is a very striking event. I encountered this phenomenon
fifteen years ago in a patient who used to waken in the night to find himself
lying in a pool of water. His wife is a nurse and reports that his temperature
in these episodes is 94 or 95F. His condition remains unchanged and the sweating
episodes are still occurring.

Variability and fluctuation of both symptoms and physical findings in the course
of a day is a constant feature in the clinical picture of myalgic
encephalomyelitis.


MEActionUK - it does exactly what it says on the tin
http://www.meactionuk.org.uk
http://health.groups.yahoo.com/group/MEActionUK/

[Non-text portions of this message have been removed]

The latest RemedyFind CFS Newsletter is just out.
It is a html file and I don't think it would come out well in plain text so
I won't post it here but it can be read at:

http://tinyurl.com/5ebj2
i.e.
http://www.remedyfind.com/newsletter_archives/Feb_05_Chronic%20Fatigue%20Syn
drome.html

This issue is mainly focused on Graded Exercise Therapy, with two people
describing their experiences in detail and an editorial on the subject by
Kate Duprey.

People can read others experiences and give their own experiences at:
http://tinyurl.com/4fee4  i.e.
http://www.remedyfind.com/rm-1993-Exercise.asp

To see the full list of remedies that have been rated and which you can rate
if you like,  go to:
http://tinyurl.com/3qz8s
  i.e.
http://www.remedyfind.com/all_remedies.asp?id=49

The more people who give their experiences on treatments, the better.

Tom K.

Jeremy Bearman's Grand Challenge to contribute to Dr. Natelson's new
research study on proteomics in spinal fluid of CFS patients versus
controls, in which he promises to provide a 50% match to all funds
contributed up the $3,000 will be ending in a few day on February 27.

If you had intended to contribute to this fundraising challenge, there is
still time to do so. See http://www.co-cure.org/challenge.htm for details.

[AOL: <a href="http://www.co-cure.org/challenge.htm">Here</a]

If you have contributed or do contribute to this study, please be sure to
e-mail Jeremy with the details of your contribution.  His offer is very
generous, but he can't read minds. :-)  He can be reached at "J H BEarman"
<jhbear@...>.

               ---------------------------------------------
                 Send posts to CO-CURE@...
              Unsubscribe at http://www.co-cure.org/unsub.htm
      Select list topic options at http://www.co-cure.org/topics.htm
               ---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
               ---------------------------------------------

Problems and Solutions By Eileen Marshall and Margaret
Williamshttp://www.meactionuk.org.uk/My_Question_to_Colin_Blakemoore_on_BBC_Radi\
o_5_Live_-_LowFi_-_220205.mp3

http://www.meactionuk.org.uk/Problems_and_Solutions.htm


--------------------------------------------------------------------------------

Problems and Solutions ?

Eileen Marshall       Margaret Williams

23rd February 2005

The interview with Professor Colin Blakemore, Chief Executive of the Medical
Research Council (MRC) by Simon Mayo on BBC Radio 5 Live broadcast on 22nd
February 2005 encapsulated the essence of an iatrogenic problem that since 1987
has compounded the suffering of those blighted by a serious neurological
disorder.  If his pronouncements had been about any other officially classified
neurological disorder but the one in question, Blakemore would surely once again
have been pilloried by the media and the public (as was the case over his
passionate commitment to vivisection, said to be the reason why -- to his keen
disappointment openly expressed on national television -- he was not awarded the
customary knighthood that goes with his current post).

In the Mayo interview, Blakemore was asked to answer a question that had been
sent in by Stephen Ralph, list-owner of MEActionUK: “ why, after several years
of promises, the Medical Research Council has so far failed to fund any
biological research into the physiological issues surrounding ME and Chronic
Fatigue Syndrome  that are recognised by the World Health Organisation as being
a disease of neurological origin?  Thus far the MRC has been seen to do not a
lot more than perpetuate the status quo of funding psychological interventions
(that) do not address neurological, cardiological, immunological and other
abnormalities highlighted in international research that so far has been ignored
in the United Kingdom”.

Professor Blakemore’s response was not only disingenuous but singularly
revealing and might even be described as deliberately misleading: “I know that
this is a very current issue of very great concern to ME sufferers.  It is by no
means ignored by the MRC: we are funding trials on chronic fatigue syndrome and
ME – clinical trials of treatments.  I think to concentrate on this question of
whether ME is thought to be a neurological or a psychological condition actually
isn’t going to get us far --- I mean, compare the situation with depression: 
depression is a brain condition but depression can be treated both by
psychological approaches and by drugs, so I don’t think we should look down our
noses at psychological treatments.  We accept that this is a real disease (but)
we don’t understand its basis.  We need high quality proposals – I think
everyone would agree that they wouldn’t want taxpayers’ money wasted on bad
science however important the cause”.

Blakemore’s response causes immediate concern.

His declaration that there is no need to worry about whether or not the disorder
is either psychological or neurological in causation is notable and would seem
not to be in accordance with the rigorous approach that is necessary for
progress to be made in medical science.  Does he really see no need to search
vigorously for the cause of ME?  If so, why does such an approach relate only to
ME and not to all illnesses whose cause is as yet unknown, including cancer,
multiple sclerosis and lupus?  What is the purpose of the MRC if not to conduct
research into illness that will provide understanding of (and result in
treatment for) that illness?  After all, diabetes and epilepsy used to be
designated as psychiatric disorders until medical research proved otherwise and
the treatment that became available as the result of such research has saved the
lives of countless sufferers who, in the case of diabetes, would otherwise have
died but who today can lead a comparatively normal and fulfilling life.

Equally disturbing is Blakemore’s support for the current MRC trials on “CFS/ME”
that have been widely shown to be flawed from the outset by virtue of the entry
criteria (the Oxford criteria) chosen by the psychiatrists who are running the
trials, when by definition those criteria exclude people with ME.   Blakemore
was therefore wrong to state unequivocally that the current MRC trials include
those with ME.  There can be no credible doubt that the Oxford case definition
excludes those with neurological disorders and this was confirmed in 1991 by
psychiatrist Anthony David (colleague and co-author with Simon Wessely) who
referred to the Oxford criteria shortly after they were published:

“British investigators have put forward an alternative, less strict, operational
definition which is essentially chronic fatigue in the absence of neurological
signs (but) with psychiatric symptoms as common associated features”  (Postviral
syndrome and psychiatry.  AS David.  British Medical Bulletin
1991:47:4:966-988).

How can it be acceptable for Blakemore to claim that the MRC is funding trials
on ME when evidence abounds that this is untrue?

Blakemore rightly stated that the MRC needs “high quality proposals” for
research, yet he openly supports the MRC PACE trials even though those trials
cannot possibly fulfil such criteria because of the inherent design flaws that
(to no avail) have been brought to the attention of the MRC.  What is his
explanation?

Is he unaware that in the most recent issue of its magazine “ME Essential”
(February 2005), the ME Association’s Medical Adviser writes:

“Now some bad news. The MRC made it clear that priority should be given to
funding further behavioural interventions.  The ME Association believes that the
MRC research strategy is seriously flawed and has called for money to be spent
on looking at the underlying physical causes of ME/CFS”.

Clearly, for someone in his position Blakemore either is improperly ignorant of
the international research literature on ME/ICD-CFS; is being misinformed by
those with a vested interest in maintaining the status quo that since 1987 has
been so assiduously nurtured and propagated by certain psychiatrists and their
adherents (notoriously known as the “Wessely School” after one of the group’s
most dominant members, Professor Simon Wessely of Guy’s, King’s and St Thomas’
School of Medicine) to whom Blakemore is on record as having allegiance, or else
--- in the face of the existing published medical and scientific knowledge of
the disorder and of the known biomarkers of organic pathology --- he is party to
a scandal in the UK that finds millions of pounds sterling for inappropriate and
flawed psychiatric trials but denies necessary and appropriate biomedical
research, correct investigation, appropriate service provision and delivery of
care to those severely physically sick and disabled. People with a neurological
disorder are entitled to such provision by the NHS yet for many years those with
ME have been designated by adherents to the currently prevalent psychiatric
paradigm as “the undeserving sick” and as such are deemed not to warrant
expenditure of public funding other than ever-more provision of psychiatric
services supplied by the very psychiatrists who deny the existence of the
disorder they are claiming to “treat”.

Such is the influence of these psychiatrists that they have recently secured
funding of Ł11.1 million (including Ł2.6 million from the MRC) to carry out more
“research” in an attempt to legitimise their own beliefs that ME does not exist
except as an aberrant belief in the mind of suggestible patients and naďve
doctors and to demonstrate that “ME” is in reality “chronic, medically
unexplained fatigue” and as such is a mental health problem.

It was in 1987 that the bid for the take-over of the severely incapacitating and
discrete neurological disorder ME was effectively launched by certain
psychiatrists and others on both sides of the Atlantic who were involved with
the medical insurance industry; in this bid, the specific and WHO classified
disorder was deliberately subsumed under the heterogeneous label of “CFS”, which
in turn was destined to become a catch-all label for the so-called “medically
unexplained symptoms” that have been shown to be either virally or chemically
induced and which were rapidly escalating out of control and becoming a serious
financial threat not only to governments but also to the medical insurance
industry.

Since 1987, the leitmotiv of the psychiatric literature on ME/ICD-CFS has been
that patients who present with and suffer from a disorder that the psychiatrists
and their corporate masters wish to eradicate are an “unjustified” and
“undeserving” financial burden and that it is neither cost-effective, necessary
nor appropriate to investigate their “non-existent” disorder.  Instead,
patients’ “dysfunctional thinking” and their “personality problems” must be
managed by psychiatrists.

This project has been remarkably rewarding to these psychiatrists and their
respective departments, since they have received many millions of pounds
sterling, not only from private charities such as the Sainsbury (supermarket)
Linbury Trust (who between 1991 and 1998 provided over Ł4 million) but also from
the pharmaceutical industry, the medical insurance industry (with whom they are
deeply involved), Government itself and the MRC.

No intelligent person is unaware that the public purse is not bottomless and
that in the NHS, clinical judgments have to be made every day in individual
cases as to whether or not further treatment is reasonable and justified. 
However the issue surrounding ME is different: it is a specific nosological
disorder that is being dismissed, denied research and investigation, treatment,
and humanitarian care of those afflicted.  If it were the autoimmune disorder
lupus, for example, about which psychiatrists did not understand but were
advising that sufferers were “the undeserving sick of our society” and that
there must be a policy of only psychiatric management, would there not be an
outcry?

Why should these psychiatrists make a unilateral judgment as to which medical
disorder is “deserving” of treatment?  The intentional “limiting” of
investigations and more worryingly, the withholding of “any other medical care”
(see below) and the promotion only of psychiatric management strategies for
“CFS/ME” has become the mantra of the Wessely School and now of Prime Minister
Blair’s Labour Government, as well as the MRC.

We submit that this amounts to denial of the human right of fundamental freedoms
under the Human Rights Act, since the Act requires that all public authorities
must pay proper attention to a person’s rights when they are making decisions
that affect a person.  Public authorities include Government Ministers, civil
servants, local authorities and health authorities.  The Act requires that those
in authority do not ride roughshod over people’s rights and must be careful to
cause the least possible harm to individuals.  To deliberately withhold the
provision of appropriate medical care to those with one specific neurological
disorder does result in actual harm and we submit that the time is now ripe for
the decision that is known to have been taken by those in positions of authority
(namely, that people with ME are “the undeserving sick of our society”) to be
robustly challenged in the Courts by means of judicial review.

It can no longer be denied that there is an enormous amount of available
published evidence that ME/ICD-CFS is not a primary psychiatric disorder but a
multi-system physical disorder of extraordinarily incapacitating dimensions that
affects virtually every bodily system, most notably the neurological system, the
immune system, the endocrine system, the musculo-skeletal system, the
cardiovascular system, the respiratory system and the gastrointestinal system. 
It has distinct cardinal features that are not difficult to differentiate from
psychosocial disorders, but Wessely School adherents are renowned for their
intransigent dismissal of any evidence that does not accord with their own
construct and so they advise that no-one should even look for such evidence,
even to the point of advising Government that “no investigations should be
performed to confirm the diagnosis, which is a clinical one” (Joint Royal
Colleges’ Report on CFS. 1996:  CR54: Summary for Commissioners, page 45)
because they believe that carrying out investigations would reinforce patients’
aberrant belief that they are physically sick.

Despite the dominance of the Wessely School, at international conferences and in
laboratories and coffee rooms of hospitals and research institutions, not only
clinicians in other medical disciplines but also other psychiatrists discuss
amongst themselves how they do not accept the Wessely School model of ME/CFS and
how they can see for themselves that it is striking how physically sick some
people with ME are, but they are effectively bullied into remaining silent by
the domination, remorseless indoctrination and damaging tactics employed by the
Wessely School.  These psychiatrists have flooded the literature with their own
beliefs to the extent that it would require several volumes to document their
publications, but a few quotations serve to illustrate their dogma; one such can
be found in an Editorial on medically unexplained physical symptoms in the BMJ
by Professor Richard Mayou:

“Physical symptoms that lack an obvious organic basis are common in medical
practice.  Management should aim at avoiding unproductive investigation followed
by abrupt suggestions of a psychological explanation.  Unfortunately many
psychiatrists have little experience of treating patients who present with
somatic symptoms (and) may need educating about the harm caused by their all too
common response of writing a letter concluding that ‘no psychiatric disorder is
present’.  A single doctor should take responsibility for the patient and
family, limiting and controlling any other medical care”.  (Medically
unexplained physical symptoms.  Do not overinvestigate.  Richard Mayou. 
BMJ:1991:303:534-535).

What gives Professor Mayou  (at the time Clinical Reader in Psychiatry at
Oxford) the right to dictate that a single doctor should “control” any other
“medical care” concerning a patient with symptoms for whom medicine does not yet
have the answer?  This is a serious matter, but neither of the two major ME
charities has seen fit to challenge it, either at the time of publication or
since.

The same theme has been adopted by psychiatrist Michael Sharpe (who used to be
at Oxford) and whose similar views are now well-known:

“In clinical practice, no additional tests, including laboratory tests and
neuro-imaging studies, can be recommended.  Examples of specific tests (which
should not be done) include serologic tests for enteroviruses; tests of
immunologic function and imaging studies such as SPECT or PET scans of the head”
(The Chronic Fatigue Syndrome:  A Comprehensive Approach to its Definition and
Study.

K Fukuda, M Sharpe et al.  Ann Int Med 1994:121:12:953-959).

“Purchasers and Health Care providers with hard pressed budgets are
understandably reluctant to spend money on patients who are not going to die and
for whom there is controversy about the ‘reality’ of their condition (and who)
are in this sense undeserving of treatment.

“Those who cannot be fitted into a scheme of objective bodily illness yet refuse
to be placed into and accept the stigma of mental illness remain the undeserving
sick of our society and our health service”   (ME.  What do we know (real
illness or all in the mind?  Lecture given in October 1999 by Michael Sharpe
hosted by the University of Strathclyde).

Such views about ME have been propounded by the Wessely School for the last 17
years and to their probable gratification have finally been crystallised in a
“CFS profile” as formulated by at least two of the Government-funded “CFS/ME”
centres in their job descriptions for candidates who are to deal with “the
undeserving sick” (Liverpool and Broadgreen University Hospitals NHS Trust and
Epsom and St Helier NHS Trust):

CFS patients are said to exhibit “perpetuating illness behaviour”; therapists
will be required to modify patients’ “predisposing personality style”; CFS
patients have “complex psychological problems” and “experience barriers to
understanding”; there can be "significant barriers to accepting the changes
needed in behaviour, which have to be overcome in therapy”; therapists can be
required to work frequently in an emotive and demanding environment and patients
may be “verbally aggressive”; “medical intervention is no longer appropriate”;
the aim of therapy is to “reduce healthcare usage”; the service is extended to
patients who have mental health problems;  the post-holder is expected to
“implement a range of psychological interventions with individuals, couples and
families” and to work with other members of the multi-disciplinary team to
“raise awareness of the approach adopted by the new centres to GPs and other
local service providers”.

Clearly, the intention is to portray throughout the UK the “CFS profile” and the
desired psychiatric management of such patients.

We submit that urgent action now must be taken and that since all efforts to
enlist the support of MPs have proved ineffective, the only route left is via
the Courts by Judicial Review (JR).  The procedure for JR is that firstly, a
written application is made to the Administrative Court at the High Court in
London; this will be considered by a Judge who will either allow it to proceed
or refuse permission for it to proceed.  If the Judge refuses permission, there
is an automatic right to a Hearing in person before a Judge, who may grant
permission for a full Hearing.  Should permission still be refused (and the
Prime Minister’s apparent influence over appointment of certain members of the
judiciary has been raised in the media), there is the option of lodging an
appeal to the Court of Appeal.  Should this be unsuccessful, a fresh cause of
action may be submitted to the European Court of Human Rights in Strasbourg.

Legal Aid may be available to bring Judicial Review proceedings.

Those in the UK wishing to consider bringing an action for Judicial Review in
relation to denial of human rights for those suffering from ME (which includes
the forcible removal by Court Order initiated by psychiatrists not only of
children and young people but also of adults with ME from their home without
consent) may wish to contact Jamie Beagent in the Human Rights Department at
Messrs Leigh Day & Co on 0207-650-1200 or directly by email at
jbeagent@... or by post at Priory House, 25 St John’s Lane, London
EC1M  4LB.


--------------------------------------------------------------------------------


MEActionUK - it does exactly what it says on the tin
http://www.meactionuk.org.uk
http://health.groups.yahoo.com/group/MEActionUK/

[Non-text portions of this message have been removed]

Hi Tom,

Thanks for this post, this whole area of research holds so much
promise for us... if only it could be funded to move ahead :(

Ruth.

--- In MEND-UK@yahoogroups.com, "Tom Kindlon" <tomkindlon@o...>
wrote:
> [Note: This isn't just another note about the matching appeal for
the
> Benjamin Natelson CSF research; there's some interesting research
results at
> the bottom. Tom]
> -------------------------------------------------------------------
---
>
> There is currently a matching challenge for similar research (to
the
> research appended below) that Prof. Benjamin Natelson wants to,
using
> proteomics to analyse the Cerebrospinal Fluid (CSF) of a larger
group of CFS
> patients, some of whom also have FM (it has been noted which
patients have
> both), and a group of controls.
>
> The matching element is for every $2 somebody donates thru' Sunday
February
> 27th (i.e. this week), Jeremy Bearman will donate $1, up to
$3000.  For
> further details, see  http://tinyurl.com/3uhrm i.e.
>   http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0502C&L=co-
cure&P=R182
>
> Prof. Natelson already has the samples so this research would be a
lot
> cheaper than if somebody had to start from scratch; also there
would seem
> very few people to begin with who would have access to a
sufficient supply
> of CSF from CFS patients to do such research as a spinal
tap/lumbar puncture
> is an invasive and somewhat risky procedure which would seem to be
generally
> done only on a small percentage of CFS patients (in most countries
anyway).
>
> Prof. Natelson applied to the NIH for a small amount of money to
move this
> work along, but their application did not receive a high enough
priority for
> funding.
>
> A problem with a lot of biomedical research in the ME/CFS and FMS
areas
> seems to have been that sometimes people find interesting results
but
> similar research isn't done by another research group so it is not
seen as a
> definitive finding; thus it would seem important that if a type of
research
> is proving promising, as this line of research [proteomics] seems
to be,
> given the results below and with other illnesses, that more than
one
> research team investigates it.
>
> --------------------------------------
> Research examining Cerebrospinal fluid protein expression in Gulf
War
> Illness (GWI) and Fibromylagia/Chronic Fatigue Syndrome (FM/CFS):
>
> Previously I posted an article to Co-Cure: "Towards the accurate
diagnosis
> of Gulf War Illness" (Proteomics research into GWI, FMS and CFS in
> cerebrospinal fluid) http://tinyurl.com/5ynx6 i.e.
> http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0501E&L=co-
cure&P=R1842
>
> This referred to a poster presentation made at the 52nd ASMS Annual
> Conference on Mass Spectrometry and Allied Topics held in
Nashville, TN in
> 2004.
>
> Last night, I found further details on this project.
>
> I am appending below some "plain text information" on the research.
>
> Further information including some tables/diagrams can be seen at:
> http://www.asms.org/asms04pdf/A041900.pdf
>
> Tom K.
>
>
> Conference: ASMS2004
> Abstract:
> Session Code:  ThPU  Slot: 437
>
> Title:
> Comparison of Fibromyalgia/Chronic Fatigue Syndrome, Persian Gulf
Illness
> and Control Groups
>
> Authors:
> Begońa Casado1; Xiaoyu Yang2; Sonja Hess3; Gail Whalen1; Lewis K
Pannell4;
> Daniel D Clauw5; James N Baraniuk1;
>
> Institutes:
> 1Georgetown University, Washington, DC; 2NIMH/NIH, Bethesda, MD;
3NIDDK/NIH,
> Bethesda, MD; 4University of South Alabama, Alabama, AL;
5University of
> Michigan, Ann Arbor, MI;
>
> Novel Aspect:
> Cerebrospinal fluid protein expression was assessed in Gulf War
Illness
> (GWI) and Fibromylagia/Chronic Fatigue Syndrome (FM/CFS) Key Words:
> Biomarkers; Mass Spectrometry, Liquid Chromatography; Protein
> Identification; Proteomic;
>
> Introduction:
> Gulf War Illness (GWI) and Fibromylagia/Chronic Fatigue Syndrome
(FM/CFS)
> are characterized by abnormal function of various components of
the central
> nervous system leading to non-specific symptoms such as pain,
memory
> problems, and fatigue. The symptoms are so similar that it is often
> difficult for a physician to diagnose the patients. Furthermore,
little is
> known about the biochemical pathways that are involved in these
syndromes.
> Therefore, cerebrospinal fluid (CSF) of GWI and FM/CFS patients
and control
> groups was characterized by LC-MS/MS and compared. We assessed
distinct
> differences ("biosignatures") of our patient groups compared to
controls,
> which give insight in the biochemical pathways and potential
therapeutic
> treatment.
>
>
> Methods and Instrumentation:
> Samples (200µl) from CSF of 10 subjects per group were pooled.
Lipids were
> extracted using 1ml of ether, vortexed for 5min and centrifuged
for 5min at
> 2000rpm. The protein phase was mixed with 50% ethanol, 0.2%M
acetic acid,
> 0.2% sodium bisulfite to precipitate high MW proteins.
Precipitates were
> resuspended in 50µl pH7.8 0.1M ammonium bicarbonate and digested
with
> trypsin at 37°C. Peptides were eluted on a RP-ZorbaxC18 column
with a
> gradient of 95% H2O to 95% acetonitrile with 0.2%FA, and assayed
by LC-MS/MS
> using MassLynx3.5. Raw data were submitted via Mascot daemon for
protein
> database searching to the NIH's Mascot cluster. Mascot results
were analyzed
> for protein comparison between these 3 groups using DBParser.
>
>
> Preliminary Data:
> Both, Gulf War Illness (GWI) and Fibromylagia/Chronic Fatigue
Syndrome
> (FM/CFS) are considered sensory and autonomic nervous system
disorders.
> Thus, it has been concluded that changes in the composition of the
> cerebrospinal fluid may be responsible for the observed symptoms.
>
> Therefore, we analyzed CSF of patients with GWI and FM/CFS as well
as
> healthy/normal controls by LC-MS/MS and identified the protein
composition
> of each group using MASCOT and DBParser.
>
> Samples were qualitatively different between the three groups. As
expected
> there were a number of proteins identified in all three groups.
These
> include but are not limited to immunoglobulins, albumin and
transferrins.
>
> Interestingly, only in the healthy control group, the transthyretin
> stabilisation protein, a key factor in amyloidogenesis, was
identified.
>
> A total number of 19 proteins such as angiotensinogen,
antithrombin III,
> amyloid protein were uniquely identified in FM/CSF patients, and
not in GWI
> patients or controls.
>
> In GWI we identified unique proteins such as pigment epithelium-
derived
> factor and chromogranin B. Pigment epithelium-derived factor was
previously
> identified and considered a biological marker for idiopathic low
back pain,
> another pain disorder.
>
> The most striking proteins of GWI and FM/CFS groups were
ferroxidase
> (ceruloplasmin), glutamate carboxypeptidase-like protein 2 and
complement
> component 4A (C4a).
>
> High concentration of C4a in plasma was also found in Chronic
Fatigue
> Syndrome (CFS) patients.
>
> Proteins of plasma and nervous system origin were identified.
Proteins
> associated with pain and antioxidant functions were common in
FM/FS and GWI.
> The presence of these proteins may be helpful in developing a
diagnostic
> tool for FM/CSF.
>
>               ---------------------------------------------
>                 Send posts to CO-CURE@l...
>              Unsubscribe at http://www.co-cure.org/unsub.htm
>     Co-Cure Archives: http://listserv.nodak.edu/archives/co-
cure.html
>               ---------------------------------------------
> Co-Cure's purpose is to provide information from across the
spectrum of
> opinion concerning medical, research and political aspects of
ME/CFS and/or
> FMS. We take no position on the validity of any specific
scientific or
> political opinion expressed in Co-Cure posts, and we urge readers
to
> research the various opinions available before assuming any one
> interpretation is definitive. The Co-Cure website <www.co-
cure.org> has a
> link to our complete archive of posts as well as articles of
central
> importance to the issues of our community.
>               ---------------------------------------------

[Note: This isn't just another note about the matching appeal for the
Benjamin Natelson CSF research; there's some interesting research results at
the bottom. Tom]
----------------------------------------------------------------------

There is currently a matching challenge for similar research (to the
research appended below) that Prof. Benjamin Natelson wants to, using
proteomics to analyse the Cerebrospinal Fluid (CSF) of a larger group of CFS
patients, some of whom also have FM (it has been noted which patients have
both), and a group of controls.

The matching element is for every $2 somebody donates thru' Sunday February
27th (i.e. this week), Jeremy Bearman will donate $1, up to $3000.  For
further details, see  http://tinyurl.com/3uhrm i.e.
   http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0502C&L=co-cure&P=R182

Prof. Natelson already has the samples so this research would be a lot
cheaper than if somebody had to start from scratch; also there would seem
very few people to begin with who would have access to a sufficient supply
of CSF from CFS patients to do such research as a spinal tap/lumbar puncture
is an invasive and somewhat risky procedure which would seem to be generally
done only on a small percentage of CFS patients (in most countries anyway).

Prof. Natelson applied to the NIH for a small amount of money to move this
work along, but their application did not receive a high enough priority for
funding.

A problem with a lot of biomedical research in the ME/CFS and FMS areas
seems to have been that sometimes people find interesting results but
similar research isn't done by another research group so it is not seen as a
definitive finding; thus it would seem important that if a type of research
is proving promising, as this line of research [proteomics] seems to be,
given the results below and with other illnesses, that more than one
research team investigates it.

--------------------------------------
Research examining Cerebrospinal fluid protein expression in Gulf War
Illness (GWI) and Fibromylagia/Chronic Fatigue Syndrome (FM/CFS):

Previously I posted an article to Co-Cure: "Towards the accurate diagnosis
of Gulf War Illness" (Proteomics research into GWI, FMS and CFS in
cerebrospinal fluid) http://tinyurl.com/5ynx6 i.e.
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0501E&L=co-cure&P=R1842

This referred to a poster presentation made at the 52nd ASMS Annual
Conference on Mass Spectrometry and Allied Topics held in Nashville, TN in
2004.

Last night, I found further details on this project.

I am appending below some "plain text information" on the research.

Further information including some tables/diagrams can be seen at:
http://www.asms.org/asms04pdf/A041900.pdf

Tom K.


Conference: ASMS2004
Abstract:
Session Code:  ThPU  Slot: 437

Title:
Comparison of Fibromyalgia/Chronic Fatigue Syndrome, Persian Gulf Illness
and Control Groups

Authors:
Begońa Casado1; Xiaoyu Yang2; Sonja Hess3; Gail Whalen1; Lewis K Pannell4;
Daniel D Clauw5; James N Baraniuk1;

Institutes:
1Georgetown University, Washington, DC; 2NIMH/NIH, Bethesda, MD; 3NIDDK/NIH,
Bethesda, MD; 4University of South Alabama, Alabama, AL; 5University of
Michigan, Ann Arbor, MI;

Novel Aspect:
Cerebrospinal fluid protein expression was assessed in Gulf War Illness
(GWI) and Fibromylagia/Chronic Fatigue Syndrome (FM/CFS) Key Words:
Biomarkers; Mass Spectrometry, Liquid Chromatography; Protein
Identification; Proteomic;

Introduction:
Gulf War Illness (GWI) and Fibromylagia/Chronic Fatigue Syndrome (FM/CFS)
are characterized by abnormal function of various components of the central
nervous system leading to non-specific symptoms such as pain, memory
problems, and fatigue. The symptoms are so similar that it is often
difficult for a physician to diagnose the patients. Furthermore, little is
known about the biochemical pathways that are involved in these syndromes.
Therefore, cerebrospinal fluid (CSF) of GWI and FM/CFS patients and control
groups was characterized by LC-MS/MS and compared. We assessed distinct
differences (“biosignatures”) of our patient groups compared to controls,
which give insight in the biochemical pathways and potential therapeutic
treatment.


Methods and Instrumentation:
Samples (200µl) from CSF of 10 subjects per group were pooled. Lipids were
extracted using 1ml of ether, vortexed for 5min and centrifuged for 5min at
2000rpm. The protein phase was mixed with 50% ethanol, 0.2%M acetic acid,
0.2% sodium bisulfite to precipitate high MW proteins. Precipitates were
resuspended in 50µl pH7.8 0.1M ammonium bicarbonate and digested with
trypsin at 37°C. Peptides were eluted on a RP-ZorbaxC18 column with a
gradient of 95% H2O to 95% acetonitrile with 0.2%FA, and assayed by LC-MS/MS
using MassLynx3.5. Raw data were submitted via Mascot daemon for protein
database searching to the NIH's Mascot cluster. Mascot results were analyzed
for protein comparison between these 3 groups using DBParser.


Preliminary Data:
Both, Gulf War Illness (GWI) and Fibromylagia/Chronic Fatigue Syndrome
(FM/CFS) are considered sensory and autonomic nervous system disorders.
Thus, it has been concluded that changes in the composition of the
cerebrospinal fluid may be responsible for the observed symptoms.

Therefore, we analyzed CSF of patients with GWI and FM/CFS as well as
healthy/normal controls by LC-MS/MS and identified the protein composition
of each group using MASCOT and DBParser.

Samples were qualitatively different between the three groups. As expected
there were a number of proteins identified in all three groups. These
include but are not limited to immunoglobulins, albumin and transferrins.

Interestingly, only in the healthy control group, the transthyretin
stabilisation protein, a key factor in amyloidogenesis, was identified.

A total number of 19 proteins such as angiotensinogen, antithrombin III,
amyloid protein were uniquely identified in FM/CSF patients, and not in GWI
patients or controls.

In GWI we identified unique proteins such as pigment epithelium-derived
factor and chromogranin B. Pigment epithelium-derived factor was previously
identified and considered a biological marker for idiopathic low back pain,
another pain disorder.

The most striking proteins of GWI and FM/CFS groups were ferroxidase
(ceruloplasmin), glutamate carboxypeptidase-like protein 2 and complement
component 4A (C4a).

High concentration of C4a in plasma was also found in Chronic Fatigue
Syndrome (CFS) patients.

Proteins of plasma and nervous system origin were identified. Proteins
associated with pain and antioxidant functions were common in FM/FS and GWI.
The presence of these proteins may be helpful in developing a diagnostic
tool for FM/CSF.

               ---------------------------------------------
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     Co-Cure Archives: http://listserv.nodak.edu/archives/co-cure.html
               ---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
               ---------------------------------------------

>From Gail Kansky <GAILRONDA@...>:

MATCHING FUNDRAISER RENEWED FOR 2005!

      Once again, the National CFIDS Foundation, Inc. has been honored with
matching funding for all donations throughout the year 2005!  The matching
donor has been in touch with the progress of our research endeavors and has
agreed to extend the matching fundraiser because of the "profound
importance" seen in our funding directions.

      All donations go directly to research endeavors so that we may find a
cause and treatment for the heartbreaking disease so trivially referred to
as "chronic fatigue syndrome."  No percentage is ever held back for any
operating costs.  In addition, a percentage of everyone's annual membership
dues goes toward our primary goal of research.  Having a matching fundraiser
means that every donation will be matched no matter what amount.  In other
words, a donation of $25.00 becomes $50.00, a $50.00 donation is doubled to
$100.00 and a $500.00 donation becomes $1,000! This also includes all
percentages that those who shop online via www.iGive.com give to our
Foundation. All donations are tax deductable as charitable donations.


We are very grateful to our matching donor who understands the importance of
the work being funded.

For better health,

Gail Kansky
President, National CFIDS Foundation, Inc.
103 Aletha Rd.
Needham, MA 02492-3931

http://www.NCF-NET.org

               ---------------------------------------------
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              Unsubscribe at http://www.co-cure.org/unsub.htm
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               ---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
               ---------------------------------------------

When busy last night circulating Cort Johnson's quote about why he felt the
Natelson proteomics research on CFS was so special, Pamela Rice Hanh alerted
me to the following article she wrote.
It includes information on a trial a Californian doctor is going to do some
research on CFS to see if viagra might increase the blood flow to the ...
brain.


"Research, Fundraisers, and Other News"
By Pamela Rice Hahn

What do a Broadway Musical Review, Dr. David S. Bell, a Grand Challenge,
proteomics, biomarkers, spinal fluid, Dr. Benjamin H. Natelson, hormones,
Dr. Theodore Friedman, and the NIH have in common?

They all relate in their own ways to research being done to help establish
better diagnosis criteria for -- and therefore better possibilities for the
cure and prevention of -- Chronic Fatigue Syndrome, although the NIH does
appear to be the least-involved in this effort."

For full article, see:
http://chronicfatigue.about.com/b/a/2005_02_19.htm

[Cort Johnson, whose website is
http://phoenix-cfs.org/The%20SITE/mainmenu.htm
  wrote the following as to why he is giving to this research.  He gave me
permission to circulate it.
As I have said on lots of lists, people may have other research they prefer
to support and that's fine with me - this is the one with the matching
appeal so that's partly why I gave to this one and why I'm focussing on it
at the moment.  The ME/CFS community just needs to raise as big a pot for
biomedical research as possible and to do that, given that we can't depend
on governments to fund the sort of research we want, we need as many people
as possible either fundraising and/or giving something, even if it is only a
little. Tom K.]

-------------

I finally got my $20 in.  Wish I could have done more.  I hope people know
that proteomics not just ANY study. It is about finding unique abnormalities
in CFS and discovering new avenues of research.  It is a new technology and
offers the potential to really blast our understanding of CFS wide open.
Every controversial and poorly understood disease should be investigated by
genomics and proteomics because they have the ability to scan enormous
amounts of data and find distinct abnormalities that might take decades of
research to find otherwise. We really need this research.

There isn't alot of CFS spinal tap fluid out there; spinal fluid extraction
can be painfull and its difficult to get. I would hazard a guess that
Natelson is one of two doctors with a good supply of CFS spinal fluid.  Many
people think the only way to link the immune and cognitive and other
symptoms in CFS is through the brain but the brain is difficult to access.
What is going on in the brain is one of the real untapped frontiers in CFS
research.  Natelson has that access but he can't make full use  of it.
There could be a breakthrough just sitting there untouched for a lack of
some money.

Natelson is a particularly good person to do this research because he is
well respected by 'both sides' of the issue.  If you've read his book you
know is both very compassionate and very conservative.  Very traditional in
focus, he does not believe in alternate health treatments for CFS.  On the
other hand he believes there is a organic basis for CFS.  In addition he has
been well funded by the NIH in the past. In short he's the perfect person to
do this researh - if he finds something, he has a track record that no one
can ignore and it will get some attention.
-----Original Message-----
From: Tom Kindlon [mailto:tomkindlon@...]
Sent: 15 February 2005 18:52
To: mend-uk@yahoogroups.com
Subject: [MEND-UK] FW: [CO-CURE] NOT,RES: Grand Challenge Matching Funds
Increased to 50%


From J H Bearman <jhbear@...>:

I am amending my challenge to increase my match to 50% of what is donated to
the new study on proteomics in spinal fluid of CFS patients versus controls.
This increase in matching funds is retroactive to the beginning of this
challenge and will, therefore, include all donations already made.

Jeremy Bearman
_______________________________

The research situation is perilous.

The NIH is allocating less money to CFS research than last year.

This means that they will probably find effective treatment in 85 years
instead of 70. The message is crystal clear.

The NIH doesn't care about CFS. They never have, and they care even less
now.

Researchers are in a difficult position. They cannot obtain grants for
research but are reluctant to criticise the government because that would
jeopardise their standing in other areas where research money is really
plentiful. There are hundreds of millions of research dollars for AIDS and
more than 100 million for MS. Last year excluding the studies that were not
CFS specific 3.9 million was available and now even less is available. In
the UK, I am listening closely to researchers chatter, and they are
indicating that the government is exceptionally resistant to funding serious
biomedical research.

The money needs to come from us, and it needs to happen ASAP.

Researchers like Klimas, Komaroff, Natelson etc, are getting older and no
new researchers want to enter a field where the research money pot available
is minuscule.

I challenge every patient out there to give to Natelson's new study on
proteomics in spinal fluid of CFS patients versus controls. I am copying
below the information on how to do this.

I will match 50% of each donation up to total 3000 dollars for 3 weeks.
____________________________

I received the following two messages from Dr. Benjamin Natelson of
UMDNJ-New Jersey Medical School recently:

"Currently there are no biological markers for CFS/FM and the illness can
only be diagnosed by following a set of clinical criteria. Because of this,
CFS/FM is probably a heterogeneous illness comprised of a number of
different subgroups. Our own data point to the brain as a cause of CFS for
some patients, and we have collected spinal fluid from nearly 50 patients.

"There is a new technology called proteomics which can identify proteins in
any body fluid -- even if the protein has never been seen before. This is an
incredibly powerful tool, and it has never been applied to spinal fluid in
patients with CFS/FM. However, it is costly to gain access to the proteomics
technology and this is where we need your help.

"We had applied to the NIH for a small amount of money to move this work
along, but our application did not receive a high enough priority for
funding. If you and other patients would be willing to contribute to our
doing this research, we would be very grateful and hopeful of discovering a
biomarker that could be used to make diagnosis more precise.

"Thanks for your continued interest in our research.

Benjamin H. Natelson, MD Professor of Neurosciences UMDNJ-New Jersey Medical
School" ___________________________

"Mr Bearman:

Thx for your note. We have actually been seeking funding to do a proteomics
study to try to identify biomarkers in the spinal fluid. Any contributions
that would move that work ahead would be really gratefully accepted.

"The Foundation of the University of Medicine and Dentistry has a secure
direct link for donations:

https://registration.umdnj.edu/%7Ereg/f2/

"The main donation page is:

http://www.umdnj.edu/foundweb/gift/gift_donation.htm

"There is a place to designate the purpose and recipient. Thanks in advance
for your interest and potential support. Let me know if you have any
problems accessing the Foundation web pages.

Benjamin H. Natelson, MD Professor of Neurosciences UMDNJ-New Jersey Medical
School"

               ---------------------------------------------
                 Send posts to CO-CURE@...
              Unsubscribe at http://www.co-cure.org/unsub.htm
               ---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
               ---------------------------------------------



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Hi Yvonne,

It's an ad for one of those great "CFS services" that are being set in the
UK.

Here is how somebody described they found it:


"I wasn't immediately aware there was a drop down information section when
you click on the
following + sign, see below.
http://64.233.183.104/search?q=cache:tgk44S2ulNkJ:www.rlbuht.nhs.uk/content/
job.asp%3Ftext%3D1+%22royal+liverpool+university+hospital%22+fatigue+clinic&
hl=en

I'll send some snippets from this website in different e-mails as there's
too much for one.
(2570, Trainee Clinical Fatigue Therapist -  SR46 - SR56)

Below is a snippet from the WORKING ENVIRONMENT section."


-----Original Message-----
From: Yvonne [mailto:simplicity46@...]
Sent: 19 February 2005 13:05
To: MEND-UK@yahoogroups.com
Subject: [MEND-UK] I think this is disgusting,



Hello,
I am a new member.
I just found this on another board,
and I have asked the poster to tell me where they got it from.
anyway, what do you think?

"WORKING ENVIRONMENT
>
> The CFS Service provides an expert multidisciplinary assessment and
> management service for people with persistent fatigue for whom
medical
> intervention is no longer appropriate.
>
> Patients referred to the service often present with complex medical
and
> psychological problems, are highly distressed and may have
difficulty
> accepting and be hostile to the rationale for adopting a
> cognitive-behavioural approach to the management of their fatigue.
>
> Engaging these patients in the service requires sensitive
discussion and
> skilled multi-disciplinary management. The CFS Service aims to help
people
> with chronic fatigue to improve their quality of life, reduce
distress and
> health care usage and where possible, return to work through a
> multidisciplinary cognitive-behavioural programme.
>
> The CFS Service aims to develop both group and individual
multi-disciplinary
> programmes to extend services to those individual patients who have
> challenging presentations including high levels of distress and
disability,
> interpersonal difficulties and co-morbid physical and mental health
problems
> that mean that a group management programme is not suitable.
>
> In addition, patients using this service may have problems of an
intimate
> nature eg sexual difficulties, history of trauma or abuse, which
are not
> suitable for treatment in a group setting.
>
> Key result Areas
>
> Clinical
>
> 1. Working with the principal clinical psychologist, to provide a
> comprehensive, specialist psychological assessment for patients
referred
to
> the CFS Service. This input will be based on the appropriate use,
> interpretation and integration of complex data from a variety of
sources
> including psychological tests, self-report measures, rating scales
and
> semi-structured interviews with clients, family members and others
involved
> in the client's care.
>
> 2. To work closely with the multidisciplinary team to evaluate and
make
> decisions about treatment options, taking into account a range of
both
> theoretical and therapeutic psychological models and highly complex
factors
> concerning historical and developmental processes that have shaped
the
> individual or family.
>
> 3. To be responsible for helping to develop and for providing
clinical
> psychology input on a group management programme. This involves
utilising
a
> range of skills including
>
> . Delivering complex concepts and ideas to groups of patients
>
> . Managing challenging group dynamics
>
> . Managing and containing individual patients and group needs in a
> highly sensitive manner
>
> 4. To provide appropriate advice on chronic fatigue management to,
> often highly distressed, patients while at all times maintaining
awareness
> of professional boundaries.
>
> 5. For patients referred to individual psychological therapy
programme
> for chronic fatigue, to exercise responsibility for -
>
> . Comprehensive highly specialist assessment and formulation of
> patient's presenting problems
>
> . Implementing a range of psychological interventions with
> individuals, couples and families, continually adjusting and
refining
> psychological formulations drawing on different explanatory models
and
> maintaining a number of provisional hypotheses
>
> . Employing methods based upon evidence of treatment efficacy.
>
> . Discharge or referral on from the service
>
> 6. To communicate in a skilled and sensitive manner, information
> concerning the assessment, formulation and treatment plans to
patients and
> other health professionals and to monitor progress during the
course of
uni-
> and multi- disciplinary care.
>
> 7. Where patients present with multiple needs e.g. patients with
severe
> mental health problems and persistent pain, to liaise with other
local
> specialist services eg mental health services to enable effective
case
> management.
>
> 8. To undertake risk assessment with distressed clients and to
provide
> advice to team members and other health professionals on
psychological
> aspects of risk assessment and risk management
>
> 9. To take an active role in the development of information and
> educational materials for people with chronic fatigue.
>
> 10. To work with other members of the team to raise awareness of CFS
> services and the efficacy of a self management approach to chronic
fatigue
> amongst Trust staff and other local services including GPs."

Hello,
  I am a new member.
I just found this on another board,
and I have asked the poster to tell me where they got it from.
  anyway, what do you think?

"WORKING ENVIRONMENT
>
> The CFS Service provides an expert multidisciplinary assessment and
> management service for people with persistent fatigue for whom
medical
> intervention is no longer appropriate.
>
> Patients referred to the service often present with complex medical
and
> psychological problems, are highly distressed and may have
difficulty
> accepting and be hostile to the rationale for adopting a
> cognitive-behavioural approach to the management of their fatigue.
>
> Engaging these patients in the service requires sensitive
discussion and
> skilled multi-disciplinary management. The CFS Service aims to help
people
> with chronic fatigue to improve their quality of life, reduce
distress and
> health care usage and where possible, return to work through a
> multidisciplinary cognitive-behavioural programme.
>
> The CFS Service aims to develop both group and individual
multi-disciplinary
> programmes to extend services to those individual patients who have
> challenging presentations including high levels of distress and
disability,
> interpersonal difficulties and co-morbid physical and mental health
problems
> that mean that a group management programme is not suitable.
>
> In addition, patients using this service may have problems of an
intimate
> nature eg sexual difficulties, history of trauma or abuse, which
are not
> suitable for treatment in a group setting.
>
> Key result Areas
>
> Clinical
>
> 1. Working with the principal clinical psychologist, to provide a
> comprehensive, specialist psychological assessment for patients
referred
to
> the CFS Service. This input will be based on the appropriate use,
> interpretation and integration of complex data from a variety of
sources
> including psychological tests, self-report measures, rating scales
and
> semi-structured interviews with clients, family members and others
involved
> in the client's care.
>
> 2. To work closely with the multidisciplinary team to evaluate and
make
> decisions about treatment options, taking into account a range of
both
> theoretical and therapeutic psychological models and highly complex
factors
> concerning historical and developmental processes that have shaped
the
> individual or family.
>
> 3. To be responsible for helping to develop and for providing
clinical
> psychology input on a group management programme. This involves
utilising
a
> range of skills including
>
> · Delivering complex concepts and ideas to groups of patients
>
> · Managing challenging group dynamics
>
> · Managing and containing individual patients and group needs in a
> highly sensitive manner
>
> 4. To provide appropriate advice on chronic fatigue management to,
> often highly distressed, patients while at all times maintaining
awareness
> of professional boundaries.
>
> 5. For patients referred to individual psychological therapy
programme
> for chronic fatigue, to exercise responsibility for -
>
> · Comprehensive highly specialist assessment and formulation of
> patient's presenting problems
>
> · Implementing a range of psychological interventions with
> individuals, couples and families, continually adjusting and
refining
> psychological formulations drawing on different explanatory models
and
> maintaining a number of provisional hypotheses
>
> · Employing methods based upon evidence of treatment efficacy.
>
> · Discharge or referral on from the service
>
> 6. To communicate in a skilled and sensitive manner, information
> concerning the assessment, formulation and treatment plans to
patients and
> other health professionals and to monitor progress during the
course of
uni-
> and multi- disciplinary care.
>
> 7. Where patients present with multiple needs e.g. patients with
severe
> mental health problems and persistent pain, to liaise with other
local
> specialist services eg mental health services to enable effective
case
> management.
>
> 8. To undertake risk assessment with distressed clients and to
provide
> advice to team members and other health professionals on
psychological
> aspects of risk assessment and risk management
>
> 9. To take an active role in the development of information and
> educational materials for people with chronic fatigue.
>
> 10. To work with other members of the team to raise awareness of CFS
> services and the efficacy of a self management approach to chronic
fatigue
> amongst Trust staff and other local services including GPs."

http://www.meresearch.org.uk/friends/events.html

Football Bucket Collections

MERGE has now held 3 "bucket collections", and more are being planned. Iain
Lee (Friends of MERGE, Sporting Liason) is busy pencilling in venues for
2005. As he says, "To sit or stand for an hour is a pleasant way to do
something practical for the ME research agenda."

One forthcoming bucket collection is:

Hibs versus St Mirren 26th February 2005

The fixture is the Premier Division game at Hibernian Football Club, Easter
Road Stadium, 12 Albion Place, Edinburgh EH7 5QG, and kick-off is at 3.00
pm, so the collection is likely to be from 2-3 pm. Our previously allocated
bucket collection had originally been allocated for 2nd Jan 2005, but was
re-arranged to benefit the TSUNAMI collection at the last moment, and Hibs
have been kind enough to allocate another date to us. Iain Lee (Sporting
Liaison) is preparing a list of volunteers able to help on the day. If you
can help out, please contact Iain direct at iain@..., or
send a note of your name, address, telephone and email to the MERGE
headquarters (merge@...) ASAP, so we can notify you of the precise
arrangements. Once the list is complete, we shall send details of the
meeting point, etc., to those who are able to support us on the day. MERGE
has "tabards" for collectors to wear and specially labeled sealed collection
buckets.

Help with these collections is always appreciated, but please contact Betty
McRae at MERGE headquarters for precise operation details.