United Kingdom: ME Association governance issues

I have a copy of the MEA's Annual Report and Accounts for year ended 31 December 2002 which may be of interest to some, as we have been looking at the historical stuff leading up to the financial issues, redundancies, resignations and change of board in 2003.

Unfortunately, the person who had scanned the pages for me duplicated page 2 and page 3 was omitted. I'm just including the Directors' Report here, not the pages for Financial Activities, Income and Expenditure etc:

ME Association Directors' Report from Annual Report and Accounts year ended 31 December 2002:





[Page 3 unavailable]





Note that back in 2002/3, the Articles provided for retirement of one-third of the currently elected Board of directors who were subject to retirement by rotation trustees at each AGM. This was changed for the 2013 Articles to every two years:

2013 and current 2014 Articles:

Retirement of Directors by Rotation

1. Every two years at the annual general meeting for that year one-third of the currently elected Board of directors who are subject to retirement by rotation shall retire but all are eligible for re-election. Those longest in office since election shall retire first. In the case of an equal period of service, in default of agreement between the members, those to be retired shall be selected by lot. If their number is not a multiple of three the number nearest to one-third shall retire from office

 

For completeness, here is the full text of Dr Margaret Macdonald's very strange article in the November 2003 edition of the MEA's Research & Scientific Bulletin in which she set out why she was resigning as ME Research Manager and Trustee:


The saboteurs of M.E. research – the work for people with ME will continue, but not here!

by Dr MARGARET MACDONALD

who has quit as MEA Research Manager and Trustee to found a new international group to research ME.

IN THE UK, we ought to be in the best position possible right now to make progress in obtaining solid research results into ME. The CMO’s report in 2002 stated categorically that ME needs to be taken seriously. The MRC strategy group of eminent scientific researchers produced an excellent report indicating their recommended way forward, and the MRC and others have made money available for research to begin.

However, the research effort is being totally undermined by particular individuals without the necessary expertise, experience or knowledge who are determined to bring the entire subject of ME research into disrepute.

Who are these individuals and what are they doing? Well, they are self-publicists who are continually in print expounding opinions on subjects in which opinion is not valid.

At The MEA, huge amounts of time have been spent dealing with them as we have a policy of fairness. But they know what they are doing – preventing any progress.

There follows a list of the issues about which these individuals never cease producing misinformation, half-truths and, worst of all, attacks on individuals whose only actions have been to support or carry out work on ME to the best of their ability and in the face of much easier options.

1 The name of the disease is NOT of any importance whatsoever as we do not know whether ME is one or 50 diseases. We have still no understanding of the disease or any clear indications as to what physiology or psychology is associated with it.

To go on interminably about preferred names is totally meaningless, wastes everybody’s time and brings those individuals and the disease into disrepute. Perhaps it helps them feel important to invoke World Health Organisation classifications but it does nothing to benefit progress in understanding the disease.

2 The conviction that ME is a ‘physical disease’ and not a ‘mental disease’ is another meaningless ‘opinion’, showing those who insist it is the ‘truth’ to be ignorant and bigoted. In reality we do not know whether ME is physical, psychological, or any combination of the two.

To object to a psychological approach is an insult to all those with classical ‘mental health’ problems. To use this as a way to refute accusations that patients with ME are malingerers is ridiculous and cannot be supported. Those who suffer back pain are also accused of malingering. People with influence who say publicly they feel certain it is a physical disease and spread propaganda in supposed support of this are a danger to patients and to the research effort. Modern medicine increasingly does not distinguish between mind and body and the terms psychological and physical are in the process of losing meaning in this context.

I restate we do not know the defect in ME and until we do all those people relying on their own ‘feelings’ or ‘convictions’ should keep them to themselves and not broadcast them to add to the distress and misery of those affected by the disease.

3 That only people with the disease are entitled to act on its behalf or have some superior knowledge is ridiculous. If this were generally true then research would stop dead. Help and support (which includes research) needs to be done by healthy, active, powerful expert people. People with cancer do not insist that only someone else with cancer can help them, but rather the opposite.

How does this propaganda harm all ME research? – by making ME an unpleasant subject area in which to carry out the research. This is achieved by producing a barrage of interference and propaganda aimed at scientists whose research does not support the individual’s prejudices; by demonising and abusing these scientists and doctors because they do not support the views described above.

Research can and must be challenged but this must be done constructively and by encouraging more (better) research. ME research is probably one of the most difficult research topics known to man as a result of its variability, intangibility and subtlety. However, there are many exciting avenues in disease research that both established and up-and-coming researchers can choose to work on. At the moment, ME is far from one of them.

Sadly, I can no longer continue with the research programme at the MEA as a result of this perpetual external interference, notwithstanding the support and enthusiasm of the organisation’s board, and chief executive. The MEA was far ahead in its vision for research but has been brought down by people bent on their own self-promotion acting as unelected, unaccountable and non representative spokespeople.

The involvement of top scientists, including Nobel Laureates, which had been underway, has had to be abandoned and cannot possibly succeed in the present climate within an MEA under perpetual attack by these same individuals.

This prospect has recently worsened by individuals aspiring to join the board of trustees of the MEA; individuals whose sole stated purpose is to establish all or some of the above dogma. I shall therefore regretfully be tendering my resignation as trustee and research manager.

Instead I intend to continue to work tirelessly (and unpaid) for the true understanding of ME by founding a new international research foundation dedicated to ME and named the M.E.D. Foundation [M.E.D.F.] If there are people reading this who, like me, believe that true understanding of ME can only come from research and who wish to support an intensive programme of ME research then I urge you to join me in this new venture. It is featured in a paid-for advertisement on page 2 of this Bulletin. It will also be appearing in other ME–related magazines.

This organisation is independent of the MEA. It will be totally free for anyone to join M.E.D.F, and we shall stand for promoting the highest calibre research into ME involving the most eminent of scientists drawn from all disciplines, a stringent peer review process to prevent accusations of preferentialism and self-funding as well as detailed involvement of interested people affected by ME.

Please send for more information if you are interested. If, however, you are one of the troublemakers then I urge you to consider carefully the damage you are doing, as you need to know that I firmly believe evil flourishes when good people do nothing.
__________________________________________

Special appeal thanks

THANK YOU to all those who have so speedily returned the disclaimer form giving us final agreement to use money from the May appeal. Thank you also to all those who have sent cheques with their forms. We are most grateful.

If you have received a letter asking you to sign a disclaimer and you have put it to one side intending to deal with it later, or to avoid the postal strikes, would you please return it as soon as possible to release the funds for use. Many thanks.

__________________________________________________________________________


As I've already posted upthread, the MEA and the Charity Commission were contacted about this apparent new charity and it came to nothing. The MEA published a notice in ME Essential assuring them that any cheques sent would be reimbursed.

She had claimed to me in a phone call that in the region of 3,500 people had responded to her advertisements and that the sheer volume was the reason why these were taking a long time to return. Whether everyone who had sent money had it refunded is unclear.

They were "interesting" times.

 

I was a mm

I was a member then and would never have donated as I did, knowing her views. Which Imo are incompatible. I note this lady went on , from a Google search , to be now working for a psychological based org. Did she have m.e.? I don't think anyine who has it , bar a small % , thinks it's reasonable to suggest it's psychological. She sounds very Wesslyan and superior , how did a woman like her get a position in a charity based on the work of Melvin Ramsay & how long did she hold a senior role there? Ofcourse you do t have your have m.e to be a great ally, but if nt having m,e means you cant “get it” and are open to psychological interpretation and research funds flowing into that hole, then you're not an asset. Edit Afaiu , the main MRC response to the 2002 chief medical officers report was The FINE & PACE trials

 

From MEA's Companies House Filing History:

Director

Date of birth
July 1954

Appointed on
1 April 2003

Resigned on
6 December 2003

Nationality
British

Country of residence
England

Occupation
Medical Writer

----------------------------------

So she would be 70 now.

Ah:

IPRI LTD

https://find-and-update.company-information.service.gov.uk/company/08030755

Doesn't appear to make much money.

https://find-and-update.company-information.service.gov.uk/company/08030755/filing-history

Total Assets £50 in 2023.

 

https://uk.linkedin.com/in/dr-maragaret-macdonald

 

Previous company names on Company House Filing History:

IPRI@BLETCHLEY PARK LTD

FORUM FOR THE ADVANCEMENT OF PSYCHOLOGICAL INTERVENTION LTD


This link on her LinkedIn page is a bit odd

IPRI - Innovation in Psychology Research Initiatives

links to a German organisation:

IPRI - International Performance Research Institute Research Services

https://de.linkedin.com/company/ipri-institute?trk=public_profile_topcard-current-company

"Emerging Research in Management Accounting and Control"

 

I don't think the German org is hers:

Nonprofit Founded 2002

"Business Analytics, Platform Economy, Industrial Services, Business Development"


Her IPRI was incorporated in 2012 - not 2002 and had a name change in 2015 and is practically a dormant company.

I think LinkedIn has the wrong link for a much larger, German organisation.

 

It is all very clear. A lady who could not see the wood for the trees.
Or perhaps more precisely could not spot a phoney when they open their mouth on the psychology lecture podium.

Presumably this was at a time when the psychologists had knobbled the MRC and she bought into a programme of substandard research designed to prove what it set out to prove.

All credit to Charles for resisting that.

But there is some validity in her item 1 and even trivially in the beginning of her item 2 that does still need addressing. The MEA is presumably still claiming that there are 9000 papers proving ME/CFS is physical.

The odd thing is that patients are now complaining about Riley going back to the old psychobehavioural model. Why is Charles supporting that? Presumably because he thinks it is light years better than what things might have been.

MacDonald clearly did not have ME as she denies that you have to have ME to be able to help.

Interesting that she did a degree in psychology after all this had happened.

 

I would not have sent any money to someone who took a paid advertisement in magazines using a URL which pointed to
an Appalachian Mountain Economic Development agency - or an email address that bounced.

Her current company name:

BOEDIKA LIMITED
https://find-and-update.company-information.service.gov.uk/company/06675102/filing-history

is a dormant company with her as sole director with assets at 2023 of just £56.

Anyway, she sure as hell isn't the CEO of the German org: International Performance Research Institute which has 20 employees and is based in Stuttgart.

 

The link on her LinkedIn page:

Chief Executive
Duchenne Research Fund
London

2011 - 2014 3 years


links to DRF Water Heating Solutions

You cannot trust any links on LinkedIn.

 

One theme I find interesting (and a turn-off) is people who want to police what others say/discuss etc.

You may find it unhelpful, useless and undermining to discuss the name of the illness. However this maybe the first time I have had the opportunity to do so. And in any case, if people wish to discuss it, why not? It’s educational for those involved and those watching.
You may believe getting up and dressed everyday is useful even if you go back to bed. I may disagree and point out the harms. Why not? I’m sorry if that makes you feel undermined. Maybe I’m wrong, or maybe you are.

 

I'm happy to be corrected but I'm not aware of the MEA ever having claimed that.

 

I think that is a bit different. There have been people who insist on using the term ME. There still are. Very recently I think this was Forward ME policy.

The problem with that has been that ME was being used to mean the wrong illness. The claim was that it was a 'neurological disorder' as stated by WHO. But almost certainly that got into the WHO classification in relation to Acheson's ME, which was the acute illness with neurological signs that occurred at the Royal Free. A lot of people still think that is the same as ME/CFS and it isn't at all.

So MacDonald is complaining about a very real and seriously misleading habit by certain people in the charity sector, leading patients to believe they had brain inflammation and were at risk of paralysis or death from brain damage. Which they aren't.

It may be acutely relevant to the story of Maeve B O'N. One of her doctors said she would be dead anyway in 8 months so there was no harm in letting home to die or something like that. Serious misconceptions have become very widespread because of the insistence on ME.

 

Haven't yet been able to find any link between Dr Macdonald as

"Chief Executive
Duchenne Research Fund
London"

for three years, from 2011- 2014.

 

Is that good enough reason to think you should “tell” people not to discuss the name? The whole point of my post being the unreasonableness of charity trustees/ex-trustees wishing to “police” what is discussed?

 

Did you find that reference by Dr Roy in the end? I know I recalled it but you wanted to see where it was.

 

She was not telling people not to discuss so much as not insist on using a name - which was being used inappropriately. She didn't know the half of it but she was in a sense right to be critical despite that.

 

I went through the transcripts as I prepared my talk and yes, thanks, I think I found primary sources for all the relevant 'quotes'. The presentation may become generally available but that has to go through various approval processes - and I am glad it does.

 

But she was calling in ME. She said it’s undermining and a waste of time to discuss a name.

 

I knew he’d been reported as being fair convinced of death in 8 months. I wonder why.