Date:         Fri, 26 Sep 2003 12:55:12 -0400
Reply-To:     mods@co-cure.org
Sender:       ME/CFS and Fibromyalgia Information Exchange Forum
              <CO-CURE@LISTSERV.NODAK.EDU>
From:         "Charles Shepherd (by way of Co-Cure Moderators
              <mods@co-cure.org>)" <charlesbshepherd@LINEONE.NET>
Subject:      ACT,NOT: Election of MEA trustees at the AGM in December
Content-Type: text/plain; charset="us-ascii"; format=flowed

MAY BE REPOSTED

The closing date for applications to become an MEA Trustee is October
3rd.  Applications are being invited from both members and non-members (as
well as people who do not have ME/CFS) according to the announcement on the
MEA website. So if anyone is considering putting themselves forward for
election to the Board at the AGM on 6th December, time is rapidly running
out to send in a formal application.......

For further details >>
<http://www.meassociation.org.uk/fvacancy.htm>http://www.meassociation.org.uk/fvacancy.htm.

I shall be submitting an application - as set out below - later today.

Dr Charles Shepherd
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Email to the ME Association

ELECTION OF ME ASSOCIATION TRUSTEES

I understand that applications have to be submitted by 3rd October.  Please
regard this as a formal application to stand for election as an MEA trustee
at the election on 6th December.

My views on where the charity has seriously gone astray over the past three
years and lost touch with wide sections of its membership are already well
known to many MEA members.  They have also been communicated to the Chief
Executive and Board of Trustees on numerous occasions before I was sacked
as MEA medical adviser back in May this year.

I will, however, set out my ten principle reasons for deciding to stand for
election below.  In very simple terms I want the MEA to return to being a
credible, well respected charity that listens to its members, campaigns on
their behalf, produces good quality medical information, and funds a wide
range of research into both cause and management.


1  AN END TO THE CULTURE OF SECRECY
When things go seriously wrong - such as almost half the Board of Trustees
and Company Secretary resigning back in March, or the rumoured closure of
the MEA Glasgow office a few weeks ago - then members need to be fully
informed as soon as possible.  They should not have to rely on people like
myself breaking confidentiality clauses in their contract (in relation to
the trustee resignations) or the current rumour and speculation surrounding
the future and funding of the MEA in Scotland.  And the decision to keep
secret the names of any of the new specialist advisers is ridiculous.

2  A RETURN TO STRINGENT FINANCIAL MANAGEMENT
The MEA got itself into a dreadful financial mess because expenditure had
been exceeding income since the move from Essex to new offices in
Buckingham, and it had created new positions/departments (eg Press and PR)
which it could not afford to pay for.  Like any other charity it cannot
(and should not) have taken on ambitious expansion plans at a time when
both financial donations and membership were progressively declining.  The
MEA should also give much more thought to the wisdom of spending large sums
of its members money on solicitors fees in trying to silence people who
openly criticise the way in which it operates.

3  A CHARITY THAT LISTEN TO ITS MEMBERS
Over the past few years the membership of the MEA has fallen from almost
9,000 to around 5,000.  But this has occurred at a time when many of the
other national ME/CFS charities have been increasing their membership.  As
I have told the Board on numerous occasions in the past, this is mainly due
to the fact that the MEA is just not listening and responding to the views
of its members.

4  A RETURN TO A CAMPAIGNING ROLE
The word 'campaign' has been erased from the MEA vocabulary, and I
understand this was a deliberate decision (because it has 'military
overtones').  This is a terrible mistake at a time when many people with
ME/CFS are still experiencing major problems with benefits, employment,
education, social support, and obtaining appropriate medical care.  And as
you know, I also feel very unhappy with the way in which the MEA has become
increasingly reluctant to criticise organisations such as the Medical
Research Council or the Department of Health on those occasions when they
do not appear to be acting in the best interests of people with ME/CFS.

5  A CHARITY THAT KNOWS WHERE IT STANDS ON ALL THE KEY ISSUES
Instead of sitting on the fence and stating that it has 'no opinion' as to
whether ME is 'all in the mind', the MEA must return to a position where it
unambiguously puts forward the belief that this is a genuine physical illness.

6  A CHARITY THAT REGARDS RESEARCH AS A MAJOR PRIORITY
Over the past eighteen months new research activity has almost come to a
grinding halt with no further studies being funded, the Scientific and
Medical Advisory Panel being abandoned, and very little money coming into
the research fund (which sadly no longer has the Ramsay name attached to it
after Louis Ramsay decided to sever all links with the charity).  As a
matter of urgency the MEA must return to its role as the principle patient
support charity involved in research.

7  THE PROVISION OF GOOD QUALITY INFORMATION AND LITERATURE
The MEA no longer provides a wide range of free factsheets and other good
quality written information for its members.  Neither is it reprinting the
clinical and management guidelines for health professionals - the purple
booklet - produced by myself and Dr Abhijit Chaudhuri.  This is a serious
abdication of duty for any medical charity.  It must be urgently reversed.

8  A MAGAZINE WHICH IS RESPECTED AND CAN BE PASSED TO HEALTH PROFESSIONALS
The MEA used to publish a magazine ('Perspectives') and a 'Medical and
Welfare Bulletin' which were widely regarded as two of the best ME/CFS
charity publications.  It now produces a thin down market glossy magazine
('ME Essential') which contains very little in the way of useful welfare,
campaigning, medical or management information.  A return to producing a
high quality magazine that could be passed on to health professionals is
another vital function for any charity involved in ME/CFS.

9  RE-ESTABLISHING A GOOD WORKING RELATIONSHIP WITH LOCAL GROUPS
Since the decision to abandon its local group structure (the handling of
which was a major PR disaster) the MEA has lost a great deal of credibility
among local group members - many of whom have decided to have nothing more
to do with the charity.  This a situation which cannot continue. The MEA
should make a start by apologising for the way in which this was done and
then go on to gradually develop and renew a good working relationship with
the independent local groups.

10  RE-ESTABLISHING AN AMICABLE WORKING RELATIONSHIP WITH THE MOST
IMPORTANT CLINICIANS AND RESEARCHERS IN THE UK
The fact that clinicians and researchers such as Dr Abhijit Chaudhuri, Dr
Nigel Speight and Professor Behan all resigned from the Scientific and
Medical Advisory Panel following my sacking means that the MEA has become
isolated from some of the key people involved at the cutting edge of ME/CFS
clinical activity and research here in the UK.  Once again, this is not a
situation which a medical charity should find itself in.


I look forward to receiving details of my interview with the Board, and I
understand that even an unfavourable decision at the interview does not
permit the Board to disallow a nominee from standing for election.


Dr Charles Shepherd
Honorary Member, MEA
Formerly MEA Medical Adviser/Director

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