*** Your Title Here ***
Ongoing concerns about the
UK's
Myalgic Encephalopathy
Association
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(Oldest posts at the top
working down to the most recent)
MEA Board of Trustees
Personal statement from Dr
Charles Shepherd
(May be reposted)
2nd May 2003
A few weeks ago three very
conscientious members of the MEA Board of Trustees resigned as a result of what
I understand were deep and growing concerns about the way in which the charity
is being administered. Despite the fact that this brought the total number of
Trustees down to a figure of 4 (out of a possible maximum of 12), the MEA has
failed to make any announcement whatsoever about these resignations to its
members (or myself) and decided to keep the information confidential. Even more
surprising is the fact that the MEA has not sought to consult its members as a
matter of some urgency to see if there are any who might be willing to step
forward and be co-opted onto a Board which is now desperately short of
Trustees. This is something that could have easily been done via electronic
sources of information (eg the MEA website) prior to any possible announcement
in the MEA magazine.
Having consulted the
Memorandum and Articles of Association of the MEA, I note that clause 30:1
(Change in Make-up and Number of the Board of Trustees) states:
'The make-up and number of
the Board of Trustees may be varied *but not reduced below seven* (my
emphasis). Variation can only be by an ordinary resolution approved by a
general meeting by a majority vote of the members present at the meeting'.
Yesterday I raised my
concerns regarding the ethics of failing to inform the MEA membership about
these very serious developments, and it is apparent that there has been a great
deal of reluctance to let anyone know that these resignations have taken place,
why and when they took place, and when there would be a proper announcement
about what has been happening at the MEA. I do not believe that this is an
acceptable way for a charity to operate in such circumstances.
I was also informed that the
Board could continue to operate with less than seven members. However, this
does not appear to be consistent with what it says in clause 30:1 of the MEAAA
relating to a reduction in numbers below a figure of seven. I have therefore
decided to raise my concerns about whether a Board can continue to operate in
this way with the Charity Commission. I have written to the Charity Commission
this morning.
I have given a great deal of
thought as to whether I should make these concerns and actions public at this
point. I have decided to do so because I believe that MEA members have a moral
right to know when a matter as serious as this is happening to their organisation,
yet they are not being informed. I would add that I, too, have become
increasingly concerned about both policy and administrative matters at the MEA.
I have made these concerns known on numerous occasions to both the Board and
the Chief Executive but I do not believe that the charity is listening and
taking note of what people are saying (and I suspect that this is why almost
half - ie 3/7 - of the Board have resigned and why there is also growing
disquiet amongst members of the MEA's Scientific and Medical Advisory Panel).
I will be making a
comprehensive statement once the next edition of the MEA magazine has been sent
out to members next week.
Dr Charles Shepherd
2nd May 2003
[Competing interest: I
receive a fee as a part-time medical adviser to the MEA.]
MEA Board of Trustees: The
continuing sound of silence....
6th May 2003
It is almost a week since a
number of very serious and perfectly valid questions started to be asked about
the resignations of three MEA trustees one of whom occupied the key position of
Company Secretary.
The MEA has decided to
remain silent and offered no official
explanation or answers to questions which growing numbers of MEA members
are now, quite rightly, starting to ask:
When did the three trustees
resign and why were MEA members not informed in view of the unsatisfactory (and
possibly unconstitutional) situation of having less than the minimum number of
trustees (ie 7) as required in the MEA Memorandum and Articles of Association
(a legal document)?
What reasons did the three
trustees give for resigning?
Has the MEA Board been
continuing to meet and make decisions while they have had less than seven
members in total?
If so, has the Charity
Commission been informed about the decision to carry on operating with only
four trustees? And is it legal for the Board to continue to operate with less
than seven trustees?
When did the MEA manage to
return to the situation where they were back to having seven trustees?
What are the names of the
three new trustees who have been coopted in order to get the numbers back to
seven?
What qualifications and
interests do these people have in relation to ME/CFS in order to make them
suitable trustees?
Have any of these newly
co-opted members resigned from either being a trustee or member of staff in the
past? If so, why and when did they previously resign?
Were any of the new trustees
members of the MEA?
What relationship, if any,
do the three co-opted trustees have to the current MEA staff and/or trustees?
Would the MEA now welcome
applications from existing MEA members to become trustees? (as it is now
apparent that there there are well qualified people who are interested in
joining the Board).
Will the MEA now arrange an
emergency Extraordinary General Meeting in view of what has been happening?
I know that many MEA members
would appreciate urgent straightforward answers to the above questions. And as
the MEA no doubt follows postings on this Board, perhaps Tony Britton could
post a suitable response in due course.
Dr Charles Shepherd
(Medical Adviser to the MEA)
6th May 2003
Recent developments in the
ME Association
From Dr Anne Macintyre
9th May 2003
I have kept silent about the
MEA until now, out of loyalty and respect for Dr Charles Shepherd, however now
that he has made public his disquiet about the way the MEA has been run, I wish
to place on record my deep concerns about the state of the ME Association:
1) The MEA that we knew was
respected, had a long tradition, there was always someone to answer the phone
at head office.. The staff at the Standford le Hope office may not have had
prestigious qualifications nor high salaries, but they were human, caring; most
of them knew a great deal about ME, they could reassure and point enquirers to
other sources of help if necessary.
Now there seems to be no
human voice to pick up the phone. I don't know of others' experiences, but I
have tried countless times at different times of day to access a real person
via this new 'ME Connect system' with no success - only a series of recorded
instructions to press different numbers. Someone with ME who is ill and
possibly distressed and desperate for advice cannot access help from the
current system.
2) When Dr Shepherd was the
MEA's medical director, (i.e. before the change in management), member's
medical enquiries were dealt with - letters were forwarded to him; some of the
letters were answered in the Medical and Welfare' section of Perspectives. All
letters to the office were responded to, and Dr Shepherd ran a telephone
'surgery' every week, when he was available to listen to members. He was always
professional, and ethical, and would not offer inappropriate prescriptive
advice by phone.
Now - letters to him from
members are not even being forwarded to him; there was no 'dear doctor' with
questions and answers in the recent magazine (more about which follows!); even
in the unlikely event of a member being
able to reach a live person on 'ME Connect', there is no system of advice for
where to find medical help. It has appeared to me hat over the last 2-3 years the MEA administration has decided to
dispense with medical and scientific advice.
3) There used to be a lot of
useful and properly edited literature available from the old Head Office -
information about Welfare and Benefits, fact sheets about various common
problems, information about significant recent research, articles written by Dr
Shepherd of myself for Perspectives. etc. There was someone at head office
responsible for sending out literature on request. Now there appears to be
nothing available - did it all go out in a black plastic bag by mistake when
they moved to Milton Keynes? Did they lose their filing cabinets in the move?
Just one of many unsolved mysteries of what the MEA has been doing.
4) The Scientific and Medical
Advisory Panel (SMAP) existed for a number of years, membership included the
most experienced and respected researchers in the UK, many of whose names were
familiar to members through their publications in medical literature. The
purpose of SMAP was to read and consider research proposals, seek opinions from
peers if necessary, and having discussed research proposals at a face to face
meeting every 6 months, to reach a consensus opinion on whether to recommend a
research project to the Board of Management of the MEA, who would then decide
whether the MEA would fund the work. This system worked very well, and was
largely administered by Dr Shepherd and Stephanie Woodcock. Since a meeting of
SMAP with the chief executive and then chairman on April 9th last year, SMAP
members have not met, no new research has been discussed. The most potentially
important study MEA had committed funds to - (a study on possible factors
involved in becoming severely affected, by Professor Derek Pheby, a respected
epidemiologist at Bristol) was halted prematurely. This was so that someone at
head office could seek yet more opinions about whether this study was worth
doing. Valuable time was wasted,. and the research assistant who was funded
from the MEA, meanwhile has finished her contract, and the questionnaires given
to the MEA for sending to its members sat in the office. This, as everyone
would agree, was a shocking waste of money and of Professor Pheby's time and
expertise.
5) A much heralded new
website about the way forward for research asked for ideas for research into
'chronic fatigue'.....what is that? What have we all been campaigning for for
years? For a distinction between the illness defined by Dr Ramsay and his peers
- ME - and unsatisfactory woolly names referring to chronic fatigue. It is not
even the same condition as 'chronic fatigue syndrome' ! The medical adviser had
not even been consulted about wording to use on the MEA research web
6) The magazine - what has
happened to Perspectives? It was widely read and respected, and many members
found it a good source of accurate information, with a broad range of topics,
plus information about the administration. I want to pay tribute here to
Stephanie Woodcock, who was for some time the main editor. This was a quality
newsletter that the MEA should have been proud of. Now it has been replaced by
an insubstantial, dumbed down thinner publication - the first issue has a
picture of two suited city office workers, a photo better suited for the front
of a stock market magazine, bearing no relation to chronically ill people (with
ME or any other disease for that matter). Readers were invited to apply for
financial loans from some company. There was a not very accurate article about
essential fats. There was NO CORRECTION to the misinformation in the previous
(final) Perspectives, where someone got the information wrong about Choline
levels in the brain - and it was not Dr Shepherd, who had not even been asked
to check the proofs! - another example of the administration's foolish
dispensing with scientific opinion.
7) So it comes as no
surprise to me to learn a few weeks ago of the simultaneous resignation of 3
trustees, who obviously had had enough of the mis-management, and increasingly
autocratic manner of administration of what used to be the finest ME patient
organisation in the UK. It is no surprise to learn that they may have acted
illegally by not informing members of these resignations, nor inviting members
to consider standing as Trustees, also in continuing to make decisions without
the minimum quorum of Trustees. I am curious to know what the Charities
Commission would make of all these resignations and the apparent secrecy
involved. I could go on and write about the sudden disbanding of groups,
however I believe than after the initial shock and hurt to people nationwide
who had struggled to run groups and help members, most local groups have
regrouped and become much stronger being autonomous and independent.
What makes me so angry,
overall, is that ill people have paid membership fees, and donated funds for
research, and have had little in return for at least 2 years. The current
regime has possibly squandered funds on salaries, offices, meetings, travels
expenses etc, and appears to show no compassion nor interest in the community
the MEA is supposed to be for. The MEA in its present form is an insult to its
founders and early presidents- including people such as Dr Melvin Ramsay, Dr
Betty Dowsett. I believe it should have a good look at itself, and either change
or fold.
I am aware that what I have
written may appear over-critical to some people, I am also aware that all
membership charities are subject to funding crises. But that does not excuse
the way in which the MEA administration has sidelined its medical adviser, and
ultimately its members.
Dr Anne Macintyre Former
medical adviser to the MEA, member of SMAP, member of the chief medical
officer's working group on ME/CFS.
[This may be re-posted]
Questions still remain
unanswered....
9th May 2003
May be reposted
As the person who was
responsible for informing members of the ME Association that information about
the resignation of three very conscientious trustees was being deliberately
withheld, and that members were not being given an opportunity to play any part
whatsoever in replacing these trustees I am pleased to see that the MEA have,
at long last, issued a statement on the situation.
However, many questions
still remain unanswered - e.g., why were MEA members not given an opportunity
to put forward the names of people who may have been willing to be co-opted
onto the Board? And the answers to some of the questions which have already
been asked are not at all satisfactory.
As I have only just seen
this statement (10pm on Friday) and am about to be away from home from the rest
of the weekend I will defer from making a detailed reply at this point.
However, I feel I must
comment on one particular part of the statement, which is disingenuous to say
the least.
According to the MEA, '..the
Board can confirm that none of the resignations was associated with differences
of opinion on strategy and direction'. Yet I am now in possession of reliable
documentation which clearly indicates that the three trustees, including the
former Company Secretary, had *lost all confidence* in the way the MEA was
being administered, in particular the financial administration, with one
trustee commenting that this had '..literally brought the organisation to its
knees' and as a result he/she '..cannot continue to countenance further wastage
of charity money'. I have no doubt that these trustees have been extremely
unhappy with the way in which the MEA has been administered for quite some time
(along with very similar concerns to those already expressed by myself and Dr
Anne Macintyre - a member of the MEA's Scientific and Medical Advisory Panel).
I will be providing more
information on the circumstances surrounding the resignation of the trustees
when I make a detailed statement on the current crisis at the MEA next week.
Dr Charles Shepherd
[Medical Adviser, MEA}
MEA needs to convene an
emergency Extraordinary
General Meeting
12th May 2003
May be reposted
Whilst the 9 May statement
from the ME Association gives a clear impression that the recent resignations
of almost half (ie 3/7) of the trustees is not a matter for members to feel
unduly concerned about, I do not believe that this is an accurate
representation of the very serious situation which is rapidly developing at
this charity. Neither do I accept that many of the pertinent questions now
being asked by MEA members have been accurately or convincingly answered by the
statement.
1 The MEA states that they
are only willing to issue this type of crucial information via their quarterly
magazine (which means that members may not learn about such a development for
up to three months). Yet the MEA website contains a 'Latest News' section,
which is regularly updated with all kinds of internal and general information
relating to issues of topical interest and concern, where this information
could have easily been posted. The resignation of one trustee on personal
grounds would not be anything to worry about, but when three trustees abruptly
resign because of serious disagreements over policy, along with loss of
confidence in the financial administration, this is of urgent concern to the
membership.
2 The MEA states that '..the
Board can confirm that none of the resignations was associated with differences
in opinion on strategy and direction'. Yet it is clear from all the information
that I have in my possession about the circumstances surrounding the
resignations that the MEA interpretation of events is both misleading and
inaccurate. When trustees refer to a situation whereby 'none have had
confidence for some time' and go on to state that '..our warnings have been
unheeded' about actions that have '..now literally brought the organisation to
its knees financially' and that they '...cannot continue to countenance further
wastage of charity money', this clearly implies a severe lack of confidence in
the way the MEA is being/has been managed. So rather than hide behind the
smokescreen of Board confidentiality, the MEA must now publish the exchange of
correspondence which took place with the Company Secretary (one of the trustees
who resigned), along with details of any communication with the Charity
Commission. MEA members will then be able to make up their own minds about
where the truth lies and whether they should have been informed at the time.
And in view of the fact that
another national ME charity has now reported (on Friday 9 May) that the MEA is
in 'financial difficulties', I believe that they must now deal with the growing
rumours about their financial situation without further delay.
3 The MEA states that the
three new trustees '..have no relationship with trustees or staff'. Yet it
fails to mention that Ian Franklin resigned as Chairman only a few months ago
at a time when there was also considerable disagreement among members of the
Board over a number of key policy decisions. At this time the Chairman and I
had some quite detailed correspondence about the circumstances surrounding his
decision to resign. Nowhere in this correspondence is there any reference -
direct or indirect - to the Chairman saying that his resignation was due to
'work pressures' - the sole explanation given in the MEA statement. I would
therefore be happy to make this correspondence public for the benefit of MEA
members if Ian Franklin is agreeable.
Neither does the statement
refer to the fact that Margaret Macdonald used to be employed by the MEA as
their Membership and Information Manager, and that she too abruptly resigned
from this post at almost the same time as the Chairman. MEA members may be
interested to learn that it was Margaret Macdonald who told their medical
adviser to stop posting medical information on the MEA message board
(MEssageUK) on the grounds that the content was 'unethical and dangerous', yet
was unwilling to substantiate this rather extraordinary claim with any specific
examples. Again, I would be happy to make my exchange of correspondence with
Margaret MacDonald (and with the trustees on this particular issue) public if
she is agreeable.
[On Friday night, the lay
moderator on MEssageUK abruptly resigned from her post - partly due to the fact
that she was having to carry out the thankless task of censoring any discussion
of MEA matters and the resignation of the trustees. The future of this service
is now in doubt.]
I know nothing about John
Bannon and would, like many MEA members, be interested to know why he is
interested in ME/CFS, when he became a member of the MEA, and who approached
him to become a co-opted trustee. And could the MEA confirm or deny rumours
that this is the same John Bannon who is a 'transpersonal psychotherapist'
working at a London stress management company called ParadoxUK
(http://www.paradoxuk.com).
5 The MEA makes no response
to the question as to whether they will now welcome applications from MEA
members who would like to be considered as co-opted trustees in order to fill
the 5/12 remaining vacancies. Or would they prefer to remain with a Board in
which the majority of trustees are non-elected co-opted trustees (two of whom
have only recently resigned from positions at the MEA), and 5 positions remain
almost permanently vacant? Is this really a satisfactory position for the
charity to be in?
6 Finally, the wording* of
the MEA Memorandum and Articles of Association (MAAA) makes it clear to a lay
person that the Board should always be operating with a minimum of 7 members,
although I accept that this may not be the legal interpretation of te wording -
such is life.. *Clause 28:1 After the first AGM, the Board of Trustees consists
of (a) not less than seven, no more than twelve persons, elected by individual
and corporate members.
*Clause 30:1 The make-up and
number of the Board of Trustees may be varied but not reduced below seven.
What is clear is that while
the MEA has been desperate to restore the number of trustees back to 7, the
information in the statement about the April meeting (ie '..and prior to the
April Board meeting, to co-opt 3 new members because they wanted to maintain
the level at 7 or more') does not appear to be consistent with information I
received from the Chair, who informed me that the MEA was still 'in discussion'
regarding the appointment of the seventh trustee as late as Thursday 1 May. So
the MEA does need to clarify how long the Board has been operating with less
than 7 members and whether any decisions have, in fact, been taken with less
than 7 trustees present (A quorum of 4 for a Board meeting is perfectly
constitutional but the quorum figure is not necessarily the same as the minimum
number of trustees required to constitute a full Board).
It is unfortunate that all
these concerns regarding what used to be the country's principle national ME
support charity are having to be raised during ME Awareness Week. But the
charity has lost an enormous number of members (?2,500) over the past three
years (unlike other ME charities such as AfME, AYME, Tymes Trust and the 25%
group who have all increased their membership) - partly because it is widely
perceived to be not listening to the views of its members (particularly on the
shift in direction towards giving uncritical support to the psychosocial model
of causation and treatments such as graded exercise) and its medical advisers
who make up the Scientific and Medical Advisory Panel (who have not been asked
to become involved in decisions about the changes of direction and are
consequently becoming very disillusioned).
If the situation that the
MEA now finds itself in isn't quickly reversed, medical advisers such as myself
and Dr Anne Macintrye (who has already issued a detailed statement listing her
many concerns) believe that the charity may not be able to survive for very
much longer. And this is why, as MEA Medical Adviser, I am now calling on the
Board to convene an emergency Extraordinary General Meeting so that the members
can be given an opportunity to question the Board, Treasurer, and Chief
Executive on what is really happening at the MEA with regard to policy,
administration and finance.
There may well be a case for
establishing a national charity for people with chronic fatigue who fit with
the functional somatic syndrome model and respond well to treatments such as
graded exercise but I do not believe that the ME Association should be even
giving the impression that it is heading off in this direction. Without urgent
change, I believe there is a strong possibility that this once respected
charity, which was based on the solid foundation put forward by Drs Melvin
Ramsay and Betty Dowsett that ME is a genuine physical illness, will no longer
exist.
Dr Charles Shepherd
Medical Adviser,
12 May 2003
MEA uses members cash to pay
solicitors to gag
Dr Charles Shepherd from
telling the truth...
15th May 2003
[MAY BE REPOSTED]
As I assume that the MEA
will not be making any form of public announcement about the fact that they
have sacked their only Medical Adviser with immediate effect, I suppose I will
have to do this for them......
These are the relevant
paragraphs from a letter sent to me by solicitors acting for the MEA last
night:
'We are instructed by the ME
Association (MEA) and refer to your internet postings of 2nd, 5th, 7th, and
11th May 2003.
You provide consultancy
services to the MEA under a contract dated 1st October 2001. The contract was
for an initial period of 12 months after which it was to be renewed. It
contained provision for immediate termination if you should "do anything
to bring the good name of the MEA into disrepute". Further it contained a
confidentiality clause.
On 22nd April 2003, Val
Hockey wrote to you to offer a three month period of consultancy from 1st May
to 31st July 2003, to provide certain consultancy services at a monthly rate of
£500. The offer was made subject to drawing up of a formal contract, and it was
agreed by you.
In your internet postings,
you have made statements which have brought or are likely to bring the MEA into
disrepute. Some of your statements have also been defamatory of the MEA and/or
its officers and staff. For example...(I won't repeat them here)
Further, your statements
have breached the duties that you agreed to the MEA as its consultant,
including the duty of confidence.
MEA asked you to desist, but
you have continued to publish untrue statements and statements about
confidential matters.
As a result of your
behaviour, we hereby give notice on behalf of the MEA that your consultancy
agreement with the MEA is terminated with immediate effect. You may no longer
describe yourself as the MEA's Medical Adviser or purport to speak for or
represent the MEA.
You must not make any
further statements in breach of confidence or that may be defamatory. If you act
unlawfully and/or in breach of the legal rights of the MEA and/or its officers
and staff MEA may bring action in the High Court against you in defamation,
without further notice, and may seek an injunction and/or damages.
MEA's trustees are willing
to consider any legitimate concerns that you may have as to the future of the
MEA and/or its management. If you do wish to raise any concerns, please send
them to Ann Campbell in writing only, who will respond (if a response is
necessary) in writing.
MEA hopes that you will see
that, whatever you think of the MEA, its officers and staff, its work and
fundraising will be impaired if you indulge in open criticism, and you are
encouraged to support rather than undermine the MEA'.
At this state there are four
important points that I wish to make to ME members:
1 I am standing by my
decision to reveal the fact that 3/7 trustees, including the former Company
Secretary, resigned nearly two months ago. And having been assured by the
former Company Secretary in a communication received only yesterday (14 May)
that 'I congratulate you on your attempts to challenge what is going on' and
that the MEA statement concerning the circumstances in which the three
resignations took place is 'plainly rubbish', I am not deviating from my
interpretation of these events. I believe there is now an urgent need for the
MEA to make a statement on the concerns that have been expressed by these
trustees, as well as what has been described last week in another ME charity
publication as the 'financial difficulties' facing the MEA. Members will then
be able to make up their own minds.
2 The issue of money raised
for research in the Ramsay Research Fund (RRF) is also becoming the subject of
legitimate public concern. And having been contacted by Louie Ramsay, Dr Melvin
Ramsay's daughter and Patron of the MEA, only this morning (after she had been
informed of my dismissal), I know that she, too, is extremely concerned about
the future of the RRF. I have therefore written to Peter Stewart (MEA Treasurer)
and Val Hockey (Chief Executive) to enquire whether this money is unambiguously
'ring-fenced' for research purposes. And if it is not, whether it could ever be
used for other purposes if the MEA is, indeed, experiencing the 'financial
difficulties' that have been referred to elsewhere. I believe that both MEA
members and the Ramsay Family require some urgent reassurance (if this can be
given) on this matter. And if this money is not (or cannot be) 'ring-fenced',
then I believe that urgent consideration must be given to transferring any
money that is currently in the RRF to a body such as the Melvin Ramsay Society
(a move which would be fully supported by Louie Ramsay) in order to ensure that
it is only ever used for research purposes.
3 In view of the many
concerns being expressed by myself, other doctors who advise the MEA such as Dr
Anne Macintyre, members of the MEA Scientific and Medical Advisory Panel, and
the members themselves, the Board of the MEA must now call an urgent EGM so
that staff and trustees can answer the many perfectly legitimate questions that
are being asked. I also believe that there is an urgent and moral duty on the
Board to consult with the members on the future of the MEA if it is indeed in
the 'financial difficulties' described by other people - a statement which has
not, incidentally, been denied by the Treasurer or Chief Executive.
4 A number of people from
local groups have kindly come forward and offered to set up a 'Legal Defence
Fund' should the MEA decide to use its members money to take action in the High
Court. A fundraising appeal will be launched next week, if necessary.
Having been introduced to
the MEA by the late Dr Melvin Ramsay, I have acted as their Medical
Adviser/Medical Director for the past fifteen years - much of which has been
carried out in a purely voluntary basis or subsidised from my other (fairly
limited) sources of income - and believe that I have carried out my work in an
extremely diligent and conscientious manner. I am obviously very upset to have
to leave this post by being sacked - a decision which I do not believe carries
the endorsement of the vast majority of MEA members (who haven't actually been
consulted about it). But having given a lecture to a packed audience in
Gloucester last night, at which nobody who spoke to me had a good word to say
about the MEA (and in particular its new magazine), I do have a sense of relief
at no longer being connected to a charity that is currently disliked or ignored
by so many of the people it is supposed to be helping. If, however, at some
stage in the future MEA members express a view that they want to see a change
in direction at the MEA, and would like me to return as a medical adviser, then
I am more than happy to do so.
Dr Charles Shepherd
MEA contact details:
4 Top Angel, Buckingham
Industrial Park, Buckingham MK18 1TH
Tel: 08707 44 30 11 and
08707 44 29 26
Chief Executive, Val Hockey:
mailto:chiefexecutive@meassociation.org.uk
chiefexecutive@meassociation.org.uk
Could I thank everyone who
has been in touch with me over the past few weeks as this has obviously been a
difficult time for myself and the family. And can I assure everyone that I am
not going away!
Charles Shepherd
15th May 2003
[MAY BE REPOSTED]
By pure co-incidence, at
around the same time that my last message was posted, the MEA have announced an
URGENT APPEAL on their website http://www.meassociation.org.uk for £150,000
(yes, £150,000) in 60 days. And '...unless the minimum required amount can be
raised urgently the organisation will face the real possibility of closure'. So
the trustees were correct....
Dr Charles Shepherd
MEA contact details:
4 Top Angel, Buckingham
Industrial Park, Buckingham MK18 1TH
Tel: 08707 44 30 11 and
08707 44 29 26
Chief Executive, Val Hockey:
mailto:chiefexecutive@meassociation.org.uk
chiefexecutive@meassociation.org.uk
Dr. Chauhuri resigns from
SMAP
15th May 2003
[MAY BE REPOSTED]
From: Dr A. Chaudhuri
To: Charles Shepherd
Subject: Re: MEA dismisses
Dr Charles Shepherd with immediate effect
Date: 15 May 2003 21:16
Dear Charles,
I have sent the following
letter electronically and also by mail. I am away to the States for the next
ten days but I shall speak to you as soon as I return.
You will always have my full
support. Please feel free to repost my resignation letter.
Kind regards,
Yours sincerely,
Abhijit
(Dr. A. Chaudhuri)
Senior Lecturer in Clinical
Neurosciences
University of Glasgow
15 May 2003
Ms. Val Hockey
Chief Executive
The ME Association
4 Top Angel
Buckingham Industrial Park
Buckingham
MK18 1TH
Dear Ms. Hockey,
I have been deeply saddened
by the recent developments in the MEA. Being aware of the circumstances behind
Dr. Charles Shepherd's removal from the association, it has become clear to me
that the MEA no longer adheres to the ideals and principles of a democratic
organisation. More importantly, I believe that the new MEA does not represent
the majority views of the ME sufferers and has become an ineffective and
insolvent corporate body totally bereft of the very principles of its
foundation laid down by Dr. A.Melvin Ramsay.
Given the fact that I was
introduced to the SMAP by Dr. Shepherd and that I no longer see MEA is able to
support the vision of research that we have, I resign from the SMAP with
immediate effect. I shall only be prepared to return to the MEA that listens to
its members and reinstates Dr. Shepherd as its Medical Adviser unconditionally.
Yours sincerely,
Dr. Abhijit Chaudhuri
Senior Lecturer in Clinical
Neurosciences
University of Glasgow
Honorary Consultant
Neurologist
Institute of Neurological
Sciences
16 MAY LETTER FROM
SOLICITORS ACTING FOR THE MEA:
16th May 2003
[MAY BE REPOSTED]
I am making public key parts
of this 16 May letter to try and keep the MEA happy. I can only assume that
this further letter from their solicitors relates to the fact that:
(a) I have been contacted by
MEA Patrons to express their deep concern about the current situation.
(b) I have published the
highly critical letter from Dr Abhijit Chaudhuri following his decision to
resign from the MEA Scientific and Medical Advisory Panel - action which
Abhijit gave me permission to do.
(c) I have passed on
information - which is already in the public domain - regarding the April 2002
three year £100,000 grant from the Scottish Executive health department to help
support the the MEA Glasgow Office. This is in response to a growing number of
people from Scotland who have sought information from me about what may happen
to this part of the MEA.
(d) I have agreed to try and
obtain answers - so far without any success whatsoever - on behalf of concerned
MEA members, MEA Patrons, and members of their SMAP as to whether money already
raised/being raised for the Ramsay Research Fund is legally 'ring-fenced' for
research purposes. And if not, whether it could eventually be used to pay for
administrative expenses, salaries, or even end up in the hands of non-research
creditors.
(e) I have been in contact
with other people who have received a letter from the MEA solicitors.
I believe I have made it
perfectly clear to all concerned with communications relating to the above
concerns that I am not making any comments on behalf of the MEA in relation to
any of the posts I used to occupy before being sacked on 14 May. Anyway....
On 16 May I received another
letter from solicitors acting for the MEA. This is self-explanatory and
reproduced below.
As far as I can see,
everyone - members, SMAP members, Patrons - has been left in no doubt that the
MEA has sacked me. But in order to make sure there is absolutely no confusion
whatsoever regarding any of the postings or communications that I have made
since the termination of my employment on 14 May, could I again make it crystal
clear that I have been sacked by the MEA and that any future comments about the
MEA are being made in a purely personal capacity. And could I make it plain
that I have no wish whatsoever to speak for the MEA about the organisation,
SMAP, or the Ramsay Research Fund now that I have been sacked. I hope this is
now clear to the MEA - I believe is.
I don't know how much money
the MEA has spent so far at the solicitors this month but it might be a
question worth asking if you are a concerned member of the MEA (contact details
follow).
Dr Charles Shepherd
16 MAY LETTER FROM
SOLICITORS ACTING FOR THE MEA:
'We understand from the MEA
that you do not seem to have appreciated that the termination of your
consultancy agreement as MEA's Medical Advisor is effective to terminate all of
the positions and relationships that you hold with the MEA as a result of being
its Medical Advisor.
For avoidance of doubt, you
are no longer Secretary of the Scientific and Medical Advisory Panel (SMAP) and
you do not have any role on or in connection with SMAP. You do not have any
position in relation to the Ramsay Research Fund (the Fund). You have no
official relationship at all with the MEA.
You must not hold yourself
out as a representative of the MEA and you must not purport to speak on behalf
of the MEA, SMAP, or Fund on any issue whatsoever'.
Yours faithfully
etc
MEA CONTACT DETAILS
Registered Office: 4 Top
Angel, Buckingham Industrial Park, Buckingham MK18 1TH
Tel: 08707 44 30 11 and
08707 44 29 26
Email:
chiefexecutive@meassociation.org.uk
ENDS
19th May 2003
[MAY BE REPOSTED]
MEA Solicitors please note:
Circulated by Dr Charles Shepherd (as permitted in the letter from Dr Nigel
Speight) in a purely personal capacity
From: Speight Nigel (RR9)
Paediatric Consultant <Nigel.Speight@ndhcnt.northy.nhs.uk>
To:
<val.hockey@meassociation.org.uk>
Cc:
<charlesbshepherd@lineone.net>
Subject: MEA crisis
Date: 19 May 2003 12:59
Dear Val,
Thank you for your letter of
May 16th. As you know, I am currently the Paediatric Adviser (unpaid) to the
MEA as well as a member of SMAP.
While I don't know all the details
of recent developments concerning the MEA, I feel I have enough knowledge to be
able to form an opinion regarding recent developments.
I have witnessed over a
number of years the enormous amount of work and time that Charles Shepherd has
devoted to the MEA. To me he virtually personifies the MEA and he has certainly
given it a major degree of medical credibility within the profession.
For the MEA to now sack him
seems a combination of sacrilege combined with a death-wish on the part of the
organisation. The concept of shooting oneself in the foot seems inadequate to
describe it - perhaps shooting oneself in the head is more appropriate.
I would entirely endorse Dr
Chaudhuri's opinions and actions as expressed in his letter of resignation from
SMAP. In other words, I hereby resign from SMAP and withdraw from my position
as Paediatric Adviser to the MEA. I would only be willing to reconsider this
decision if there was a total volte-face on the part of the current leadership
of the MEA and if Dr Shepherd were to be re-instated unconditionally and with
the heartiest of apologies. If the current leadership are incapable of this
then wholesale changes would presumably be necessary.
I would be happy for my
letter to be circulated freely by either yourself or Dr Shepherd
Yours in sorrow
Dr Nigel Speight
ENDS
MEA Contact information
Head Office: 4 Top Angel,
Buckingham Industrial Park, Buckingham MK18 1TH
Email:
chiefexecutive@meassociation.org.uk
Tel: 08707 44 30 11 and
08707 44 29 26
QUESTIONS FOR THE MEA
ON THE CURRENT FINANCIAL
CRISIS
20th May 2003
[MAY BE REPOSTED]
And please could local group
leaders make sure that this information is made available to their members who
also belong to the MEA
The statement by the ME
Association in the current issue of ME Essential (p3) is remarkably deficient
when it comes to useful information as to how/why the MEA got itself into this
awful financial mess and why robust action was not taken much earlier on - as
the Company Secretary and trustees who resigned in March 2003 claim they
advised - when it became clear that monthly expenditure on administration,
salaries, and expenses was running well in excess of monthly income.
I raised a number of
pertinent questions regarding the MEA's financial administration with the Chair
(Ann Campbell) shortly before I was sacked but never received any answers.
However, the MEA website (www.meassociation.org.uk >> URGENT APPEAL) has
announced that staff will be available to answer questions on the Appeal from
Tuesday (20 May) till Friday this week on O8707 44 29 26 (members) or O8717 81
00 08 (non members). I have therefore prepared a short list of questions which
members may wish to ask about how their money has been used over the past 18
months. Alternatively, you could email your questions to the Chief executive
at: chiefexecutive@meassociation.org.uk.
If anyone receives any
useful replies to any of these questions perhaps they could post them on one of
the message boards for everyone to see.
MEA solicitors please note:
These questions are being raised by me in a purely personal capacity and as an
honorary MEA member. They do not contain any information about the MEA which
members of the public cannot access.
20 QUESTIONS FOR THE MEA ON
THE CURRENT FINANCIAL CRISIS
THE RESERVES
1 How much money did the MEA
receive from the sale of the previous office and shop premises in
Stanford-le-Hope before they moved to the leased premises in Buckingham in
January 2002? (At a rough guess this must have been around £100,000).
2 How much money was in the
reserves (ie cash in bank, shares, money from sale of old office etc) in
January 2002? How much money was in the reserves a year later in January 2003?
And how much money is currently held in reserve?
INCOME AND EXPENDITURE
3 When did the MEA
Treasurer, Company Secretary, and Chief Executive first become aware that the
monthly expenditure was consistently exceeding the monthly income by a
significant amount?
4 During the period January
2002 to December 2002, what was the approximate monthly deficit? (ie
expenditure exceeding income). These figures should now be available, and
according to the Charity Commission website (www.charity-commission.gov.uk),
which publishes details of all registered charity accounts, the sums involved are
likely to be quite considerable. Over the past few years MEA income has varied
between £363,000 and £604,000 with expenditure ranging from £421,000 to
£642,000).
5 When did the MEA Board of
Trustees first address the fact that monthly expenditure was significantly in
excess of income?
6 Why was no robust action
taken to bring expenditure into line with income at a much earlier stage? (ie
as soon as it was apparent that a serious and growing deficit was developing).
7 How much have newly
created posts which coincided with the move to Buckingham (i.e. a PR and
Communications Manager) cost in salary, expenses, and administrative costs? Was
it really necessary to create the post of a PR and Communications Manager when
the MEA coped reasonably well without one before that? Has this post (as a paid
position) now been made redundant? And how much was spent on new IT equipment,
IT consultants etc during the period January 2002 - December 2002.
RAMSAY RESEARCH FUND
8 Is money that has been/is
being donated to the Ramsay Research Fund (RRF) securely 'ring-fenced' for
research purposes? (ie could it be used to pay for administrative expenses or
salaries if the MEA is about to fold, or even to be used to pay non-research
creditors). And how much money is currently in the Ramsay Research Fund?
9 If the RRF money is not
'ring-fenced' for research purposes, does this mean that the MEA will continue
to accept donations from people who are unaware of this fact? If the money is
not 'ring-fenced', will the MEA offer to return any money, including legacies,
that has been donated to the fund since the resignation of the trustees in
March, so that the donors/executors can decide if they still want to keep it in
the fund? If the money is not 'ring fenced', will the MEA take immediate steps
to inform all of their members of this fact (as the current issue of 'ME
Essential' is still encouraging people to donate money to the fund).
10 And if the money is not
'ring-fenced', does the MEA have any intention of transferring the money to
another organisation (such as the Melvin Ramsay Society, which carries the full
endorsement of the Ramsay Family) that could arrange for 'safe keeping' until a
suitable research study could be identified? If not, why not?
MEA GLASGOW OFFICE
11 Could any of the £100,000
three-year grant given by the Scottish Executive health department to fund
staff, equipment and administrative expenses be used to help support the work
of the national MEA? Has the Scottish Executive been informed about the funding
crisis at the national MEA? If not, is it going to be informed?
12 If this funding cannot be
used to support the national MEA, what will happen to the Glasgow Office in the
event of the MEA folding in 60 days time?
13 If the Glasgow Office can
keep going in the event of closure of the national MEA, could/will it then
become a Scottish MEA?
SALARIES
14 The MEA Medical Adviser
(before being sacked) was offered a new contract starting on 1 May which
contained a very substantial reduction in his monthly fee to take account of
the financial crisis. Are any members of the MEA staff, including the Chief
Executive, taking any form of salary cut in order to help with the crisis? And
what is the current salary of the Chief Executive?
SOLICITORS FEES
15 How much has the MEA
spent on solicitors fees in (a) the year ending December 2002, (b) so far this
year, (c) so far this month?
16 How much has the MEA
spent so far in solicitors fees in connection with the dismissal of their
Medical Adviser (to include the cost of letters to message board owners).
RESIGNATION OF TRUSTEES AN
COMPANY SECRETARY IN MARCH 2003
17 Is it true that three
trustees (out of only seven), including the Company Secretary, resigned in
March 2003 because they were deeply concerned about the steadily deteriorating
financial crisis and the measures that were being taken (or not being taken) to
deal with it? And why is there no information for MEA members about the
circumstances surrounding these crucial resignations in the current edition of
the MEA magazine?
18 Why weren't MEA members
informed about the deepening financial crisis much earlier on (ie well before
the trustees even decided to resign), instead of leaving this to the point at
which the charity only has around 60 days to go unless a massive amount of
money - £150,000 - can be raised?
EXTRAORDINARY GENERAL
MEETING
19 Will the MEA now arrange
an for an urgent EGM so that members can question the Chair, Treasurer, and
Chief Executive about the circumstances surrounding this (possibly terminal)
financial crisis, and also allow them the opportunity to express their opinions
on how the charity should now proceed, including ways in which it may need to
be wound up if the extra £150,000 cannot be found to keep it going. If not, why
not?
MEA MEDICAL ADVISER