----- Original Message -----

From: Adin Falkoff

To: L. D. Misek-Falkoff

Sent: Wednesday, April 06, 2005 3:38 PM

Subject: [Fwd: Re: [portal-PWPI] *QUERY* After the Fifth AdHoc Meetings at the U.N., what are your thoughts on the focus of Articles?]

. . .

Date:	Wed, 06 Apr 2005 12:43:48 -0400
From:	Adin Falkoff <adfonatt@...>
To:	portal-PWPI@yahoogroups.com

Thank you for the opportunity to speak out here. I have answered the questions in Part 2, relating to PWP..
/ADF
. . .

> Draft Article 7 - PWP: Are there any undesirable measures aimed at equality which actually seem discriminatory?
> ADF/RESP: Not sure what measures are at issue in this question.
>
> Draft Article 8 - PWP: What measures do people with pain need and want to ensure enjoyment of life?
> ADF/RESP: PWP require recognition that their condition is real, despite the fact that it is (usually) invisible to a second person.
>
> Draft Article 8bis PWP: How are people with pain at increased risk and vulnerable?
 ADF/RESP: PWP are at increased risk (1) because their condition is overlooked or disbelieved because it is not readily visible, and (2) because the modalities for treating the condition may use drugs which have a bad reputation in other contexts.
> Draft Article 9 PWP: Are people with pain recognized equally as persons before the law, and in application of laws? >  ADF/RESP: In the application of laws such as the US ADA, one aspect of the criteria for determining the condition of disability may be absent: to wit, that the PWP may not be perceived as having a disability.
>
> Draft Article 9bis PWP: Are people with pain treated justly on equal basis with others?
ADF/RESP: It is distinctly possible that they are not, because they may not be perceived as disabled.
> Draft Article 10 PWP: How are liberty and security of persons effected by receptivity to people with pain?
>  ADF/RESP: Because it is often difficult for medical providers to objectify the pain, they may be too quick to conclude that it is imaginary and treat the PWP accordingly: deny helpful medication and/or suggest inappropriate hospitalization (confinement).
>
> Draft Article 11 PWP: Are people with pain subjected to torture, cruel, inhuman or degrading treatment? > ADS/RESP: Don't know.
> Draft Article 12 PWP: How do violence or abuse or neglect effect people with pain, in homes or elsewhere?
ADF/RESP: They may be more l;ikely to be subjected to such treatment because of the frustration of authorities who do not know how to treat PWP/
> Draft Article 12bis PWP: What is needed to protect the physical and mental integrity of people with pain? > ADF/RESP: The reality of the disabilities imposed by pain must be recognized, and treatment modalities must be separated from societal concerns about such treatments (e.g., uuse of opioids).
> > Draft Article 13 PWP: Are people with pain able exercise right to freedom of expression, and opinion, and access to important information? > ADF/RESP: This would seem to be a matter of availability of individual resources.
>>Draft Article 14 PWP: Do people with pain experience arbitrary of unlawful interference with - or attacks on - privacy, family, home communication, attacks on honor or reputation?
> ADF/RESP: Again, because of the invisibility of the condition there may be a greater tendency for misunderstanding by/in the environment, leading to the effects noted.
>
> Draft Article 14 bis PWP: Do matters relating to family, reproductive, or other close-in issues especially impact pwp?
> ADF/RESP: Hard to say, in general. >
>
>-----Best wishes and send any questions, Dr. L. D. Misek-Falkoff, ldmf@....
>
>
> >

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Dear LJC,

Thank you for connecting People With Pain International, and
Invisible-NO-MORE, in with communicating with the Congress and relating
inquiries to your own book, A Pained Life.  Tonight in particular, but just
representative, there are folks online in extreme distress and expressing
some profound indignities but also feelings of extreme helpfulness from  how
they are received when in pain.

As we have discussed, this stress transcends models - medical, social, and
otherwise, and make us more than embarrassed at the verbal and other
demeaning response to pain sufferers.  We can and must maintain our Rights
approach even though the challenge will always be there because varieties of
human attitudes will always be. So will those who strive for equality. And
keeping up with the Law - international, national, and local -  is a key
factor. So your good endeavors are much appreciated.

Sincere regards, LDMF.

------------
Linda D. Misek-Falkoff, Ph.D., J.D..
Today's Signature Line note:  New:  join
www.yahoogroups.com/groups/portal-pwpi People with Pain International / and
/ HRPP Human Rights of People with Pain.

----- Original Message -----
From: <leejcaroll@...>
To: <invisible-NO-MORE@yahoogroups.com>
Cc: <DisabilityConvention@yahoogroups.com>; <pwpi-portal@yahoogroups.com>
Sent: Tuesday, March 01, 2005 9:04 PM
Subject: [DisabilityConvention] letter sent to Rep. Hooley



Sent this to Rep Hooley who had the other (or companion) bill wasn;t sure
because it seems to read as both)
This is another person to write to about the pain bill.
_http://www.congress.org/congressorg/home/_
(http://www.congress.org/congressorg/home/)

"Dear Rep. Hooley, I aoporeciated your companion bill to HR1863 but from my
research it seems no action has been taken on either.  I was unable to find
any information on the White House conference that was supposed to take
place
in  2004.
I would appreciate any information you could provide. Thank  you.
Carol Levy,
author A Pained Life, a chronic pain journey.
Member,  PWPI, persons with pain international.
Member, Invisible No More"

(linda, It didn't take clicks so hope this signature was okay)




House Bills - 108th Congress
Session I | Session II


H.R. 2507—Conquering Pain Act of 2003
On June 18, 2003,  Representative Darlene Hooley (D-OR) introduced H.R.
2507,
the Conquering Pain  Act of 2003. While the majority of the legislation
would
address services and  insurance coverage, there is a provision which would
require NIH to convene a  national conference to discuss the translation of
pain
research into the  delivery of health services, including mental health
services, to chronic pain  patients and those needing end-of-life care. The
Secretary of HHS would be  required to use unobligated amounts appropriated
for the
Department of Health  and Human Services to convene the conference. Upon
introduction, the bill had no  cosponsors and was referred to the House
Committees
on Commerce and on Ways and  Means. S. 1278, the companion measure to H.R.
2507, was introduced by Senator  Ron Wyden (D-OR) on June 18.








Yahoo! Groups Links

----- Original Message -----

From: leejcaroll@...

To: invisible-NO-MORE@yahoogroups.com

Cc: DisabilityConvention@yahoogroups.com ; trigeminal_neuralgia@yahoogroups.com

Sent: Sunday, February 27, 2005 6:18 PM

Subject: [DisabilityConvention] (no subject)

http://www.painreliefnetwork.org/default.asp?id=1&mnu=1

HOME

Welcome to PRN. We are a network of pain patients, family members of people in pain, physicians, attorneys, and activists who are working toward a day when people in pain will be afforded the simple dignity and compassion due all ill Americans. >> AMERICA'S IN PAIN  ... [Snipped for storage] {see prior full post]

Some of the issues here in terms of credence/or not,  and receptivity to the
pain message, may be of great interest here.
The Pain here, you will note, is said to be physical and emotional.

Please note from the end of the forwarded post:

   ****TOIL for Lyme****
T = Teach tolerance
0 = Overcome ignorance
I = Initiate insurance reform
L = Labor for Lyme literacy/advocacy

------------
L. D. Misek-Falkoff, Ph.D., J.D..
.
Today's Signature Line note:  New:  join
www.yahoogroups.com/groups/pwpi-portal   People with Pain International /
and / HRPP Human Rights of People with Pain.

----- Original Message -----
From: "Rose" <toil_for_lyme@...>
To: "LymeInfo Group" <lymeinfo@yahoogroups.com>
Sent: Monday, February 21, 2005 1:47 PM
Subject: [lymeinfo] Mystery disease spreading through Florida (FL)


http://www.wtev.com/news/reports/story.aspx?content_id=0011C7A2-2FCF-4E44-B2D2-6\
7F7FB0EBFF9

WTEV-TV - CBS47
Jacksonville FL

Mystery Disease: Part 2
Last Update: 2/14/2005 4:51:43 PM

Video

Join the fight to help doctors find a cure for the mystery disease!

A mysterious skin disease is currently spreading across Florida, and doctors
are searching for answers on how to stop the epidemic.

The disease, called Morgellons Disease, is a parasite-like infection that
literally makes the infected person's skin crawl. The disease has already
been found in thousands of patients in Florida, Texas and California.

Mystery Disease: Part 2

For Anne Dill, standing in her backyard, looking over the lake is physically
and emotionally painful.

This silence and solitude serves as a constant reminder of what her family
is facing.

"We're going to lose everything, our house, our dreams," says Dill.

Five years ago, the dills bought their dream home in Lake City. They spent
most of their free time at their lake with friends, and thought life was
pretty close to perfect.

Then, three years ago, Anne, her husband and their four children all got
very sick at the very same time.

They think they have Morgellons, even though they have no idea how they
would have contracted it.

Morgellons is an unusual parasite-like skin disease, which produces
irritating sores all over the body.

These sores ooze blue fibers, white threads and little black specks of
sand-like material.



The Dills say they're also plagued with a constant, creepy crawling feeling
of bugs under their skin.

However, the most agonizing symptom is the chronic fatigue. The Dills are so
tired and so weak, they spend nearly all of their time, at home.

The father, Tom Dill is the sickest. Along with the Morgellons, he's
developed signs of Lou Gehrig's disease. It's a neurological disorder that
robbed him of his muscle control. He's now bound to a wheelchair and has
trouble speaking. Tom doesn't know if his two conditions are related. That
has him worried about his children.

  "I don't want to believe that what happened to me, happened to them."

But answers are hard to come by. In fact, doctors tell them the "bugs" they
feel and sores they see, are only in their minds. In medical terms, they are
delusional parasitosis.

"I don't know how a doctor couldn't see that, it's ridiculous, I can see it,
I know there's something there, I'm like a freshman in high school and I
know that there's something wrong."

Doctor Hardesh Garg is an internal medicine specialist in Jacksonville. He
isn't surprised by the reaction the dills have been getting from doctors.

"A lot of times, not all of us, who feel like, if it doesn't exist in my
medical book, it really doesn't exist and it must be a figment of your
imagination," says Garg.

Doctor Garg has never seen a patient with Morgellons. However, he says this
skin condition needs to be studied.

  "Until we know what's causing it, can't say if it's infectious or not or
how dangerous it is."

No doctors on the First Coast or Florida could be found who know anything
about Morgellons. However, not all hope is lost. One medical professional in
Austin, Texas may have found a clue to the Morgellon's mystery.

Ginger Savely is a nurse practitioner who specializes in treating the tick
borne Lyme disease. She also has first hand experience with the mystery
disease.

"Right now I think I have about twenty eight Morgellons patients," says
Savely.

According to Savely, the anti-biotics she gives to patients with lyme are
also working on some Morgellons patients.

But this treatment is also unproven, and since doctors don't know if it's
contagious, the Dills say their home is now their prison.

So, the Dills spend a lot of quality time together. Five year old Hanna has
been one of the dill's secrets to survival, as her love for singing songs
keeps the family entertained.

Recently researchers have been uncovered who have just published a study on
an unknown skin disease with the exact same symptoms.

It is promising research that points to a critter that could be lurking in
your home, and research the Dills may feel that every family should look
into.

To learn more about this mystery disease visit www.morgellons.org.

There are three other parts to this story series:

-  Part 1
-  Part 3
-  Part 4

   ****TOIL for Lyme****
T = Teach tolerance
0 = Overcome ignorance
I = Initiate insurance reform
L = Labor for Lyme literacy/advocacy

http://www.abcjb.com/mris.htm and http://www.abcjb.com/news.htm

pwpi-portal-subscribe@yahoogroups.com

 

Dr. Linda D. Misek-Falkoff,  [Ph.D., J.D..]

Why is the war on doctors happening? Why is it happening now? Who is responsible for this tragic injustice? What factors have brought us to this intolerable situation from which an exit strategy must immediately be found?

Having studied the war on doctors for the past year, I believe there are at least seven separate reasons for this war to happen and to happen now. I base this conclusion on my study of documents from criminal cases against doctors and pharmacists, and on public comments by both health care professionals and drug enforcement authorities."

Dr. Linda D. Misek-Falkoff,  [Ph.D., J.D..]
For Identification as to Linking Up:
- PWD, PWP. Phi Beta Kappa.
- President, The National Disability Party, a Party in Interest.
- Recording Secretary, the Communications Coordination Committee for the United Nations; and the *Respectful Interfaces* Project of the CCC/UN.
- Member, The International Disability Convention Caucus; participant in the Meetings and Contributions
- Member, UN. NGO Fall DPI Summit Planning Committee, Committee on Status of Women; Subcommittee on Older Women. Other NGOs convening at U.N. Headquarters in New York. 
- Member Mental Health Media/ICT & Human Rights Working Groups
- Founding Board Member, The Alliance for Rights in Medicine (2004); Member, Trigeminal Neuralgia Association.
- Founder: People with Pain International, Human Rights of People with Pain.

Here is an information wesite about some of the medications you may
be interested in. I hope you will find it useful and it would help
you: http://www.buy-tramadol.biz

On Mon, 17 Jan 2005 16:08:29 -0600, Lester B <lesboe@...> wrote:

> Sara
>
> I hope all goes well, and you get SSDI, but most of these Doctors, are
> bought off, as they know who pays their salary, A person should always,
> have a relative or friend go into the exam with you, and if the Doctor
> refuses, then you are not going to get a fair test, as I refused a
> couple of
> times, and finally they let my wife come in with me. I had 16 different
> illnesses and impairments, and it took me all kinds of appeals, and 4 1/2
> years to finally get SSDI, and I was already disabled 100% by the VA, as
> they fight you all the way.
>
> Les(in MN

Thank you so much for the good thoughts, Les.  I will let you know what
happens when it happens.  I had to fight so hard to get my STD and LTD
  from Liberty Mutual, and I really don't want to fight a pitched battle on
2 fronts because I shouldn't have to.  I have 2 listed impairments (with
documentation), in addition to all my other problems (too numerous to
list), so I should get approved on my first try.

--
Sara Greathouse in Ohio
sfatula@...

Owner: http://groups.yahoo.com/group/TPW_Health_Forum
Moderator: http://groups.yahoo.com/group/PagansWithChronicPain

Standing Together for Adequate Treatment

Sara

I hope all goes well, and you get SSDI, but most of these Doctors, are
bought off, as they know who pays their salary,  A person should always,
have a relative or friend go into the exam with you, and if the Doctor
refuses, then you are not going to get a fair test, as I refused a couple of
times, and finally they let my wife come in with me. I had 16 different
illnesses and impairments, and it took me all kinds of appeals, and 4 1/2
years to finally get SSDI, and I was already disabled 100% by the VA, as
they fight you all the way.

Les(in MN

100% disabled Vietnam Veteran
thanks to PTSD & agent orange
1969-70

Hi everyone,

I was offline for the last few days or so because I had my Independent
Medical Exam for Social Security to determine my eligibility for SSDI.
  I was a little pissed off about some parts of the exam, but I think I
made it clear that I have at least 2 listed disorders that should get
me approved on my first attempt.  They took X-rays of my right knee
and right hip for the osteoarthritis, and then I met the doctor doing
the physical exam.  I had brought copies of all my relevant test
results and 2 letters from my doctor stating my diagnoses and why he
urged me to pursue SSDI, which this doctor absolutely refused to look
at.  I told him that in order to form an accurate profile, he really
needed to review the paperwork, and he said he couldn't do that
because that isn't his job, which I refuted with what happened at the
last IME for Liberty Mutual and the multiple inaccuracies that showed
up in his report because he had the same attitude as this guy, like
not touching any of the tender points for Fibromyalgia and then
saying he couldn't make a diagnosis of Fibromyalgia.

I did make sure to tell this guy about the daily severe migraines,
supported by my prescription for Imitrex, and when he shined a light
in my eyes back and forth quickly, I said "Please don't do that, it
can trigger a migraine", which I got the aura for about 5 minutes
later and told him "If I'm going to drive home safely, I need my
Imitrex NOW".  He did let me take my Imitrex immediately and offered
water to swallow it with, which is good.  I also told him about the
Panic Disorder directly caused by my last employer when I was afraid
they were going to fire me for not being able to do my job duties
satisfactorily because of the profound fatigue, need for extended
breaks and time away from my workstation during migraines and
panic attacks, which I've had both at work severely enough (with
medication) that I was incapacitated for 2 hours of my work day.  I
also told him about the non-restorative sleep backed up by the results
of a sleep study (and again offered the paperwork I had brought so he
could see that report, and again he refused to look at), which results
in chronic, profound fatigue, short-term memory problems, and an
inability to work on a regular schedule (I would sleep through my
alarm or have an attack of insomnia and be ready to go to sleep when
it was time to get up for work, so I was constantly in some form of
sleep deprivation that made working impossible for me.  I also told
him about the severe pain I have in my feet and legs, and how I use
the cane to support part of my body weight while walking short
distances and the need for the Lidoderm patches stuck to the bottoms
of my feet.

In the notes he made, I noticed he boxed in "migraines" and "chronic
fatigue", so I hope that means he recognized those are both listed
impairments that should get me approved quickly.  If I do get denied,
I can use the fact that he refused to look at the reports and 2
letters from my doctor stating #1 I am permanently, totally disabled,
and #2 exactly why I am disabled and what my diagnoses are in my
appeal.  I just hope I don't have to go that route, and shouldn't,
since I have listed impairments.

Then I spent yesterday resting and medicating because of the extra
pain in my hips, knees, and feet from the IME (I know he had to do it,
and he was pretty gentle, but it still hurt!).  If I can't open my
hips up for the Missionary Position, I certainly can't do splits or
Range-of-Motion tests with my hips being this bad.  Oh yeah, I did get
the doctor to take note of the osteoarthritis in my fingers, and that
flares make my hands unusable (and therefore unable to type - a major
job requirement for any job I might be able to do, especially given
that my career was "light-duty" in working with computers).

Now I cross my fingers and toes and wait for the initial decision.

--
Sara Greathouse in Ohio
sfatula@...

Owner: http://groups.yahoo.com/group/TPW_Health_Forum
Moderator: http://groups.yahoo.com/group/PagansWithChronicPain

Standing Together for Adequate Treatment

As per requests, to subscribe to the International Disability Convention
Discussion List directly: send email as follows (click)
DisabilityConvention-subscribe@yahoogroups.com

Just wave if you have any questions ... :) LDMF.
Representing People with Pain, and Disabilities at Large

----- Original Message -----
From: "l.d.misek-falkoff" <ldmf@...>
To: <DisabilityConvention@yahoogroups.com>
Sent: Wednesday, January 12, 2005 1:45 PM
Subject: Re: [DisabilityConvention] national action addressed to d


>
> Dear Marita and Gail and all:
>
> A few thoughts responding, and feeling yes  in my view too and all the
good
> others here perhaps, we do need to keep in front of us that "persons" are
> individuals, are human beings, with a separate and unique texture to life
> and schedules and needs and also gifts to give.
>
> So your posts will always be timely and on all topics.
>
> Perhaps - thinking on -  in youth we might (though not all do) see others
as
> basically "flat" but as we grow we learn how marvelous and "dimensional"
> each individual precious life is.  Then as to women yes too much in the
> shadows.  But other "groups" too. Maybe that is part of the energizing
> thrill in talking to someone new in a coffee shop.  The precious details,
> the linking.
>
> It will be good to get back to talking here and elsewhere about what it is
> like to be alive on a day by day basis; that is why I know I so treasure
> each time someone lets us share what is going on with them.  I've done it
> myself also.  It seems at the time like feeling vulnerable.  But later, it
> is a soothing experience.  As is said all Life is always continuing to
> flower. To open up, to connect with all other life.
>
> Thanks for continuing to post.  We live an the same time, and have so much
> in common for mutual comfort and outreach if thought of that way - as
across
> all history.
>
> Best wishes and continuing happy new year greetings,
>
> LDMF.
>
> >
> > Hello,
> > your comments on women´s issues make me to be active in the list, though
I
> > follow "in silence" and interested, all your postings but I am not sure
it
> > is the core topic here.
> > I am working now with my government to set up the first, sure,
(European?
> > maybe...)  National Action Plan on disabled women and this is the reason
I
> > posted my first message. The idea is to allocate disabled women´s issues
> in
> > the mainstream, but I am fighting to avoid adding the recurrent label
> > "....and also for disabled women". We are not "also", but "the" women.
It
> is
> > difficult for me to give the right meaning to the words in English, but
I
> am
> > sure that most part of undertand what I mean.
> >
> > And this is also the reason why I am also active in the Webpage I
informed
> > you this morning devoted to the UN Convention and the gender perspective
> in
> > it: in the Convention we are "also" and not "the".
> >
> > Disability movement has made many mistakes during the recent past, sure,
> but
> > one of them is to go on talking of disabled persons instead of disabled
> men
> > and women. It has contributed to make invisible what is more of the 50%
of
> > that community.
> >
> > But I am really convinced that any social change will come in the hands
of
> > individuals self-organised but with no formal structure, and I am doing
> so,
> > like Don Quixote did ;-)
> >
> > Marita
> > ----- Original Message -----
> > From: "Gail Mayhew" <gm51@...>
> > To: <DisabilityConvention@yahoogroups.com>
> > Sent: Wednesday, January 12, 2005 1:06 PM
> > Subject: Re:Re: [DisabilityConvention] national action addressed to d
> >
> >
> > > re marita and linda . i think assault and abuse women experience
should
> be
> > > considered a disability. the problem is even other women dont always
> > > support this. it truely is a social problem .
> > > l--------------------------------------------------------------
> > >
> > > Dear Marita:
> > >
> > > Because of your more recent note reminding all here, as one member on
> the
> > > list I was pleased today to locate your earlier note.
> > >
> > > Hi Gail too, and thanks for the *heads up*.  The thought occurs that
> while
> > > at the United Nations meetings there is indeed emphasis on inclusion
of
> > > women with disabilities, the national scene is going to be very
> important;
> > > it is now and will be.
> > >
> > > And from here, I do know from participation at meetings in the U.S.
that
> > > we need to bring this to the fore.
> > >
> > > Gender issues do often add to other types of marginalization or
> exclusion,
> > > but awareness is increasingly growing on the Rights of each reflecting
> the
> > > rights of all.
> > > It's a good question and perhaps just impressions in addition to any
> > > governmental perspectives might be posted here, and Marita please say
> more
> > > from your own perspective if you have the chance.
> > >
> > > Best wishes, LDMF.
> > > Dr. Linda D. Misek-Falkoff,  [Ph.D., J.D..]
> > >
> > > ----- Original Message -----
> > > From: "Marita Iglesias" <maritaiglesias@...>
> > > To: <DisabilityConvention@yahoogroups.com>
> > > Sent: Friday, October 29, 2004 5:31 AM
> > > Subject: [DisabilityConvention] national action addressed to disabled
> > > women
> > >
> > >
> > >>
> > >> Hello.
> > >> I would like to know if you have any sort of national action
addressed
> to
> > >> disabled women, I mean, how government in your country has embody
> women´s
> > >> issues into national policies.
> > >> I thank you very much indeed your help.
> > >> If you consider that it is out of topic in the list, please, reply to
> my
> > >> e-mail
> > >>
> > >> M. Iglesias
> > >> www.asoc-ies.org
> > >>
> > >>
> > >>
> > >>
> > >>
> > >>
> > >> Yahoo! Groups Links
> > >>
> > >>
> > >>
> > >>
> > >>
> > >>
> > >>
> > >
> > >
> > >
> > >
> > >
> > > Yahoo! Groups Links
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > Yahoo! Groups Links
> > >
> > >
> > >
> > >
> > >
> >
> >
> >
> >
> >
> >
> > Yahoo! Groups Links
> >
> >
> >
> >
> >
> >
> >
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>

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