Request for UK case studies

Jenny

Senior Member
Messages
1,383
Likes
546
Location
Dorset
PERMISSION TO FORWARD, RE POST AND PUBLISH IN NEWSLETTERS FOR MAXIMUM
BENEFIT

Yesterday, I sent out a Press Briefing to complement a letter I had sent
to
editors of newspapers which, in the aftermath of the Kay Gilderdale trial,
emphasised the need to ensure that the inevitable focus on assisted
suicide
did not make us forget the crucial matter of M.E. which has already, in
the
past, been hidden within misleading statistics of Chronic Fatigue Syndrome
and the sufferers from view altogether because (1) people are too ill; (2)
they stay hidden rather than be disbelieved or derided by the General
Public
or, worse, doctors; (3) it might get worse - children taken away; adults
sectioned; (4) other people keep M.E. under wraps for their commercial or
employment interests.

We have had serious interest from all parts of the country - England,
Scotland, Wales, Northern Ireland - and the Republic of Ireland for case
studies to illustrate the rest of the story I am giving them that we
cannot
trust the official statistics because they are no more than a guess, that
even the otherwise better controlled studies are polluted by the
indiscriminatory CFS and in the absence of an money coming from Government
for research and it being out of the reach of charities and
philanthropists
that we do it ourselves for no reward other than the work itself.

This is a good opportunity to make sure that Kay's wish is fulfilled that
Lynn Gilderdale is remembered as a symbol of getting M.E. taken more
seriously. It may be tough for some of you consider doing this but we want
people who really do have M.E. and who have been unable to work, go to
school, or have any social life for decades - not any other condition with
chronic fatigue and certainly not anyone who has been "helped" by some
faddy
diet or miraculous cure. We are telling it as it is but with the belief
that
things could change with the right approach.

We do want M.E. sufferers from every part of the country. I should have
given you enough information here for you to work out the sort of person I
would like to hear from (and the sort who need not bother). If you are
willing to do it, send an e-mail to drjohngreensmith@mefreeforall.org with
"Case Study Volunteer" with City or County in the subject line. If you
know
someone else who might be willing, pass it on.

Best wishes
John

drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
 
T

thefreeprisoner

Guest
Bump! I haven't been ill long enough to offer my story up for this. But I am pretty sure we have some UK members that match this profile.
This is a GREAT chance to influence the powers that be.
Please, speak up if you're there and willing...

Rachel xx
 

MEKoan

Senior Member
Messages
2,629
Likes
117
Reformatted for easier reading

Request for UK case studies

PERMISSION TO FORWARD, RE POST AND PUBLISH IN NEWSLETTERS FOR MAXIMUM BENEFIT

Yesterday, I sent out a Press Briefing to complement a letter I had sent to editors of newspapers which, in the aftermath of the Kay Gilderdale trial, emphasised the need to ensure that the inevitable focus on assisted suicide did not make us forget the crucial matter of M.E. which has already, in the past, been hidden within misleading statistics of Chronic Fatigue Syndrome and the sufferers from view altogether because (1) people are too ill; (2) they stay hidden rather than be disbelieved or derided by the General Public or, worse, doctors; (3) it might get worse - children taken away; adults sectioned; (4) other people keep M.E. under wraps for their commercial or employment interests.

We have had serious interest from all parts of the country - England, Scotland, Wales, Northern Ireland - and the Republic of Ireland for case studies to illustrate the rest of the story I am giving them that we cannot trust the official statistics because they are no more than a guess, that even the otherwise better controlled studies are polluted by the indiscriminatory CFS and in the absence of an money coming from Government for research and it being out of the reach of charities and philanthropists that we do it ourselves for no reward other than the work itself.

This is a good opportunity to make sure that Kays wish is fulfilled that Lynn Gilderdale is remembered as a symbol of getting M.E. taken more seriously. It may be tough for some of you consider doing this but we want people who really do have M.E. and who have been unable to work, go to school, or have any social life for decades - not any other condition with chronic fatigue and certainly not anyone who has been helped by some faddy diet or miraculous cure. We are telling it as it is but with the belief that things could change with the right approach.

We do want M.E. sufferers from every part of the country. I should have given you enough information here for you to work out the sort of person I would like to hear from (and the sort who need not bother). If you are willing to do it, send an e-mail to drjohngreensmith@mefreeforall.org with Case Study Volunteer with City or County in the subject line. If you know someone else who might be willing, pass it on.

Best wishes
John

drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org