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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