Hi

The only group covering South Cumbria I can think of is the Morecombe Bay Group.
They have a website at:

http://www.bayme.org/

Jo


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Could anyone tell me if there is a particular group that covers South Cumbria or
is it covered by more than one group. Thanks

I'll try and write up my POTS/ tilt table experience for the next
newsletter.

The sun is shining and I'mjust getting together next month's
newsletter. Does anyone want to share anything for me to publish in it?

Hiya,

No worries about this month's meeting.  We had a nice chit chat
session, so you didn't miss any specific information as such.

There is going to be a summer break, so there won't be an official
meeting in July or August.  People could still meet somewhere
unofficially for coffee or whatever, if they wanted to.

I'll also mention here that September's meeting will be the AGM.

Lets hope the good weather returns soon - if it doesn't you can blame
me - I bought sun cream last week, so it will probably rain for 90 days
solid!

Best wishes
Kirsten

Hi, I'm sorry I didn't get to the last support meeting. I wondered what
was hsppening in July and August, if there were any meetings and where
they were. Hope to see some of you soon, from Elaine

I now have Manchester libraries and five from the Wirral committed to
running ME displays in May.

Welcome to the group, Elaine, thanks for joining.  We are still finding
our feet here, so just fire away with any comments, questions,
suggestions, chit-chat...

It was good to meet you at the 'real' group, I think there was a nice
atmosphere there today.

Hi,it was nice to see you all at my first group meeting and to realise
i'm not on my own! Hopefully will see you at the next one. Elaine.

There is always the DVD's of the conference, available here for £15
http://www.investinme.org/index.htm

They are supposed to be very good.  I'm not sure when I would get round
to watching them though.

Great news. I went last year but have not booked for this year, I've
had a rough month and am watching health rather than gadding around
too much.

--- In meincumbria@yahoogroups.com, "Jo" <jo@...> wrote:
>
> Yes, well done Linda that's brilliant :-)
>
> I'm actually appearing in a book on ME for ME Awareness in May, so
if I get a copy I'll forward it to you for the lending library at the
Support Group.  It's called Lost Voices and is mainly photographic in
nature, with some small narrative about how having ME impacts on your
life.  It's being put together by Invest in ME (IiME), a national
charity based in Scotland which focuses on biomedical research into
ME.  They are having a large, international conference in May with
Researchers from all over the world giving presentations and I think
the book is being presented at the conference.  Sadly the conference
is in London (they always are!) so too far to travel or I would love
to have gone as the speakers look excellent.
>
> Jo x
>
>
>
> [Non-text portions of this message have been removed]
>

Thanks
I have a collection of posters and leaflets from national charities,
some clinical guidelines which I've bought from our resources and the
librray has some books. I'm hoping they will be on display as well.
Morecambe Bay will be helping to support the key libraries which are
south of the County.

Yes, well done Linda that's brilliant :-)

I'm actually appearing in a book on ME for ME Awareness in May, so if I get a
copy I'll forward it to you for the lending library at the Support Group.  It's
called Lost Voices and is mainly photographic in nature, with some small
narrative about how having ME impacts on your life.  It's being put together by
Invest in ME (IiME), a national charity based in Scotland which focuses on
biomedical research into ME.  They are having a large, international conference
in May with Researchers from all over the world giving presentations and I think
the book is being presented at the conference.  Sadly the conference is in
London (they always are!) so too far to travel or I would love to have gone as
the speakers look excellent.

Jo x



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Sorry to hear you still haven't picked up.  My energy has gone awol too since my
relapse last Nov - it's such a monumental effort to get out of bed most of the
time I simply don't bother and any housework gets done when it's critical!  I'm
sick of eating ready meals too - desperately need to win the lotto and hire a
chef ;-)

I do wish the weather would start to perk up.  At least I could lie in the
garden in the sun and get some fresh air - I'm getting cabin fever stuck in the
house so much.

I'll be really interested to know how you get on with Gavin.  Quiz him, then I
can put on the MEED website what he has to offer.

Jo x



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Thanks, Jo, I couldn't remember who you've seen.

I went to see my GP a few weeks ago, and basically had a moan that I
haven't been very well lately and that my current consultant is no
use.  She offered to refer me to Dr Spickett, but did warn me that
there wouldn't be any miracles -as if!

The GP sounded a bit more interested than usual, and offered to look at
some info if I organised it for her, so I sent her about half and inch
of printouts off the internet, and some website details.  Maybe some of
the stuff about ME being a serious neurological disease hit home.  I'll
wait and see whether she mentions CBT/GET next time I see her!

xx

Well done, Linda!

What kind of promotion will it be?  Posters and contact details of
local and national organisiations, along with the new books?

Just to confirm that not only have I got 25 libraries in Cumbria
involved in promoting ME in May but now 7 libraries in Blackpool and 25
in Lancashire!

I saw him 15 years ago.  It was Gavin Spickett that confirmed my diagnosis of
ME.

He's an immunologist and the Clinical Networking Champion for the NHS ME/CFS
Clinics in the North of England.  Usually though you are only referred to
confirm diagnosis - as far as I'm aware he doesn't offer any kind of
'treatment'.   Do you know why you've been referred?

Jo x



.


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I've just been referred to Dr Gavin Spickett.  Has anyone else seen him?

Cumbria library have ordered 3 sets of books on Me from a book list I
have supplied. I'm unsure how quickly they will arrive and of course
they will need to be catalogued but I expect them to be ready for the
May promotion throughout Cumbria libraries.

Through the Carlisle ME/CFS Support Group, we have contact details of
lots of people who have ME/CFS throughout Cumbria, including
Whitehaven, Workington, Cockermouth, Maryport, Aspatria, Silloth,
Wigton, Penrith, Appleby, and all areas of Carlisle.

Please get in touch If you are interested in getting in contact with
other PWME in your area.

It may also be possible to bring people together who are of a similar
age or symptom severity, if that seems more appropriate.

Don't forgot it is fine to post messages on here that are of a purely
social nature, hopefully message threads will flow a little easier once
people get to know each other.

Please note contact details will only be released with each person's
permission.

I have just come back from a meeting with Cumbria library who have
agreed to running a promotion on ME in some of the libraries in
Cumbria. It is health and wellbeing month in libraries. I'll keep you
updated with progress.

There is some background info on the CFS/ME Clinic on the MEED
website at
http://www.me-ed.co.uk/nhs.htm#lmdt
and also details of how to get a referral.

I have reservations about the CBT/GE treatments on offer, especially
for the more severely affected.  I know they've had an awful job
trying to recruit a GP with special interest to join the team and
don't know if they have yet succeeded - a specialist GP would be such
an asset, as from personal experience my own GP is often totally
stuck as to which drugs to give me, especially as I'm incredibly drug
intolerant.  The GP would also have been able to refer for tertiary
(ie. hospital) care if that were needed.

However, I have met the team (I went to a couple of early meetings
when they were setting the clinic up) and they are very nice and
willing to listen.

I only know one person who has been referred.  She has had severe ME
for over ten years.  There is little they could physically do for
her, but did help to get her a specialist reclining wheelchair so
that she could go outside in her garden (she can't sit upright at all
which has been a real problem for getting out and about).

Jo

CFS services have been established in Cumbria for two or three years,
they are currently based in Keswick.

As I understand it, the service they offer includes sending you for a
one off appointment with a consultant, and then offering CBT/GET.  At
one stage I think they had an occupational therapist, which may be of
use to more severe sufferers, but I'm not sure whether this is still
available.

You might want to do some reading up before deciding whether to try
CBT/GET.

I haven't any personal experience of the service, so I'm limited in
what I can say about them.  Perhaps other group members could comment...

It's great to see this. I've never helped grow an e group before but
will hep the moderator to do this.
--- In meincumbria@yahoogroups.com, "moletteuk" <moletteuk@...> wrote:
>
> Link to the ME Information Portal website:
>
> http://www.me-portal.co.uk/displayItem.asp?Name=Home
>
> This is a very useful site written from an academic and scientific
> veiwpoint, created by Me in Cumbria group member, Linda Danielis
> (bty422577), who also runs the Carlisle ME/CFS Support Group.
>

Link to the ME Information Portal website:

http://www.me-portal.co.uk/displayItem.asp?Name=Home

This is a very useful site written from an academic and scientific
veiwpoint, created by Me in Cumbria group member, Linda Danielis
(bty422577), who also runs the Carlisle ME/CFS Support Group.

Here is a link to the ME in Eden District website http://www.me-
ed.co.uk/

It is an online information resource for people with M.E. in Penrith,
Eden District & surrounding areas of Cumbria.

It is a great site full of all kinds of information and advice, run by
ME in Cumbria group member jak_online

Hi all

My name's Jo, I'm 40 and live near Penrith.  Have had ME for nearly 16
years, 6 spent severely affected and bedridden but now moderately
affected.  I'm a committee member of the 25% ME group, a national
charity which supports people with severe ME.  I also run a local
website at www.me-ed.co.uk

I'm single and looking for a husband if anyone knows of a gorgeous chap
who'll fit the bill!  Have a rescue cat called Puds.  Enjoy computing,
reading, gardening, TV and chatting about anything and everything.

Worked for Cumbria Social Services before getting ill but have also
luckily travelled the world as an Assistant Purser on a luxury cruise
liner.

TC
Jo x

Carlisle ME/CFS Support Group holds meetings on the second Saturday of
the month at 2pm at Wigton Road Methodist Church hall.

The group is still fairly new and finding its feet, so your attendance
can really make a difference.  Everyone is welcome.

Jill Moss, founder of the Association of Young People with ME (AYME)
will be speaking at tomorrows meeting.

Hi,

I'm 32 and live near Carlisle with my long term boyfriend, I've had
ME for 11 years, I was a civil engineer before turning ill
professionally a few years years ago now, I've also got coeliac
disease (get yourself tested!).

My boyfriend and I are interested in all things to do with mining,
including exploring old mines (which I'm obviously not really well
enough to do these days), mining books, photos and plans, and mining
memorobilia. I also love motorsport, particularly motorbikes,
birdwatching, wildlife and and generally being outdoors in our
wonderful Cumbrian countryside. I take an interest in prehistory,
astronomy, and philosophy, and I love computer games (even though
they don't like me!), reading, music, and gardening.

I'm looking forward to hearing from other ME/CFS sufferers from
Cumbria, so go ahead and introduce yourself, or post a message on any
topic to do with ME/CFS in Cumbria.

Best Wishes

Kirsten