This support group is set up under the state body ME/CHRONIC FATIGUE SYNDROME/FIBROMYALGIA ASSOCIATION OF QUEENSLAND and is known as the ME/CFIDS/FM Far North Queensland Support Group.
The two major thrusts of the group at this stage is 1: to reach the people suffering from these diseases 2: to get information and training to bodies and health professionals in the far north.

Furhter information
tnq support group


   

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Saturday, July 10, 2004
Chronic Fatigue Syndrome - Myalgic Encrphalomyelitis

The following post has appeared from Charles Shepherd, MEA trustee, elsewhere on the internet today (see below).

This is, unfortunately, an opportunist attack on Jane Bryant, on the back of the feeding frenzy that has been going on by various people in recent days.
Contrary to his implied claim, Dr Shepherd has NOT acted with understanding when faced with the legitimate concerns of others about the MEA, but has instead evaded answering legitimate questions, waged a campaign of denigration against those asking the questions such as Jane Bryant, and made vague doom-laden statements in order to frighten people off asking these legitimate questions.
People with ME/CFS in Britain, and their advocates, are currently deeply disenfranchised. Both the MEA and Action for ME have colluded with the psychiatric lobby in promoting the 'psycho-social' approach which has damaged the lives of so many people.
Since then , the ME/CFS community have given the MEA a chance to pull their socks up. Unfortunately, the MEA have made many uneasy by their adherence to the term 'opathy', their refusal to openly support the Canada Guidelines, their refusal to answer the questions about their legal and financial status, the 27 Medical Advisors, the status of the London Criteria, and the apparent lack of a forceful strategy to counteract the damage done by the psychiatric lobby which the MEA had assisted in the past.
Are concerns about any of these issues unreasonable?
No right-minded person could claim so, and yet Dr Shepherd has not provided a single attempt to answer Jane Bryant's questions with any openness or honesty, instead adopting a belligerent stance against her.
His supporters have then gone on to make sustained attacks on Jane Bryant, making vague, highly unsubstantial but clearly denigratory and inflammatory statements about her. The constant refusal to be accountable to the very people BOTH these charities represent has forced the actions that Dr Shepherd complains about.
I am not a member of either AfME nor the MEA. Nor is my daughter. YET, both will claim to be representing people like my daughter. They are both invited, as I understand it, to sit on the NICE clinical guidelines committee. HOW will these charities force through the interests of ME/CFS sufferers? CAN either of them be relied upon to ensure the dangerous psychiatric hegemony do NOT get their way to force CBT/GET on sufferers at the expense of clinical investigation and proper care? If they CAN'T, then why on earth should ANY ME/CFS sufferer or advocate allow them to speak for us?
The uncomfortable truth is that the two adult charities in this country have been failing ME/CFS sufferers. the MEA have been given a chance to right this, but so far have some up with very little to reassure and a lot to worry the people who put so much faith in them. Attacking Jane Bryant has become a major displacement tactic. Neither charity will survive if they continue this arrogant, sinister avoidance of the issues.
ME/CFS sufferers in Britain, and their advocates, are faced with a bleak future, if the present actions of both the adult charities are anything to go by. Unless both charities radically change their current approaches, NICE guidelines will be hijacked by the psychiatric lobby without efffective opposition, the PACE and FINE trials will go ahead without effective opposition, the Wessely School will claim the dangerous treatments of CBT/GET as 'successful', enabling them to be forced onto people, Canada will be ignored, and the WHO classification will be destabilised and possibly lost, while we allow the sport of scapegoating Jane Bryant, a woman who has done SO much positive, effective work for the ME/CFS community, to carry on.
Are we prepared to allow this to happen? I know I'm not. But unless a groundswell of political resistance to the psychiatric lobby and those that are colluding with them can be sustained, these are exactly the things that will happen.
ONECLICK, whether one 'likes' them (us) or not, has achieved an enormous amount of work, has gathered vital information, has provided some effective ways of resisting the onslaught of the psychiatric lobby and those that collude with them. What have the MEA and AfME actually done this year to even compare with the advocacy work of One Click? It is a fair question, however discomfiting to some.
So I am calling on the MEA, and AfME, and their apologists to stop Jane- baiting, and actually do something positive for the ME/CFS community, something that shows you might be serious about advocating for our rights. Your report card says 'could do much better'. WHAT are your strategies? Tell us exactly HOW you intend to ensure the NICE guidelines do not become a travesty of justice for ME/CFS sufferers. Tell us HOW you intend to stop all collusion with the psychiatric lobby to enforce dangerous treatments such as CBT/GET. Tell us HOW you are going to promote and engage with the Canadian Guidelines. Tell us HOW you are going to ensure the methodological, theoretical and ethical flaws of the PACE and FINE trials are highlighted at the highest level. Tell us exactly HOW you are going to ensure the WHO neurological classification remains stable. Tell us HOW you intend to ensure the MRC committs itself to funding biomedical research into the causes and treatments for ME/CFS.
And if you won't rise to the challenge, then expect the consequences: the certain loss of the respect of the ME/CFS community, possibly the end of your charities. ME sufferers may get brain fogged, exhausted, but they're not stupid.
To the community, I would ask each of you to consider: are you prepared to let the psychiatric lobby continue with what they are doing? Do you want the charities who claim to be representing you to collude with them? Are you prepared to continue to be told your illness is mental, and have CBT/GET forced upon you? If you're not, what do YOU think should be done to prevent this? What are YOU prepared to continue to do to prevent this?
Angela Kennedy
P.S. Any attempt at Angela-baiting will only reinforce the fears many right-thinking people in the community already have, that shooting the messenger is a displacement tactic, and will not deflect from the seriousness of the situation facing both AfME and the MEA. Plus, I will make it public.

From Charles Shepherd:

"The actions that Ms Bryant is/has been taking - detailed complaints to the Department of Trade and Industry, Charities Commission, and Department of Health; demands to have names and addresses of all current MEA members sent to her etc - are all designed to either severely disrupt our normal working timetable or bring about the collapse of the MEA. These are then combined with all kinds of unfounded personal attacks which people have great difficulty in making her retract - even when they are completely untrue (as I know from personal experience on several occasions).

I know that people have disagreements with some of the policies that the MEA have adopted either now or in the past - and this is perfectly understandable when dealing with a complex medical condition such as this. But is the way that Ms Bryant carries out her relentless and at times quite offensive internet campaign against certain individuals an acceptable way to deal with such disputes?

And would you find it acceptable if you were to become one of her targets?

Charles Shepherd
MEA trustee"



ME International

Posted at 10.7.04 by fnqsupport
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Monday, May 03, 2004
Reply to Lord Puttnam/AfME

From: Dr John H Greensmith
To: Scotsman
Sent: Thursday, April 29, 2004 9:20 AM
Subject: Re: Film Chief Blames over-work for Health Plight by Anita Singh (Scotsman, 27 April 2004)
Scotsman letters. Cc: Anita Singh, Showbusiness Editor; Lord David Puttnam.

There are many more celebrities and famous people, like Lord David Puttnam, with M.E. (Film Chief Blames over-work for Health Plight, Scotsman, 27 April 2004 ), than will publicly admit to it, for fear of affecting employment opportunities. Indeed, he has already had a glittering career and is well established for more success before he does so.

This secrecy distorts both the total statistics and the mix of types of people with M.E., which may affect public knowledge & awareness and, in turn, funding for research. (Incidentally, yuppie flu was never an accurate term because M.E. does not affect "mostly middle-class achievers" but both sexes, all ages and social classes, worldwide).

On the one hand, ordinary folk with M.E. will be pleased to hear David Puttnam air some of the familiar problems they can face: overwhelming exhaustion and muscle pain beyond the mere tiredness of other chronic fatigue states; ignorance, disbelief and derision from doctors and the general public; the isolation it brings.

On the other hand, they will be concerned at his overemphasis on psychological factors as the cause and recommendation of treatments intended for psychiatric illnesses.

David Puttnam may have had a busy life (as many other M.E. sufferers, but by no means all, have had) but it is questionable whether his (or their) life was so stressful that they couldn't cope and, further, that it caused M.E. David says he has depression but feeling justifiably fed up about loss of employment (or schooling for children), reduction in standard of living, isolation and fractured relationships, on top of the debilitating symptoms of M.E. is not the same as clinical depression, which may occur with no such causes, nor should it be treated in the same way.

Wealth, that comes with fame, may buy some comfort, even anonymity because there is no need to apply for benefits but it cannot buy a cure that does not, as yet, exist.

Ironically, after five years of cognitive behaviour therapy, supposed to help patients manage their illness more positively, David is still ill and now has the negative and erroneous view that it is, somehow, his fault.

Since the latest research, published to coincide with M.E. Awareness Day on 12th May, from the Troon-based 25% Group*, which represents the most severely affected people with M.E., shows that over 90% found the two most recommended treatments, cognitive behaviour therapy and graded exercise, at least unhelpful and a shocking 82% reported their condition worse after graded exercise treatment, it would seem prudent to have no treatment at all, other than rest, than one that does harm, pending further research into the more promising physiological and neurological causes of this illness.

Yours sincerely
Dr John H. Greensmith
drjohnh@greensmith53.freeserve.co.uk
Dr John H Greensmith
36a North Street Downend

Also see The Guardian and a reply to that article ME Support

ME International

Posted at 3.5.04 by fnqsupport
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Saturday, May 01, 2004
Lord Puttnam and AfME



There are a number of concerns raised by the David Puttnam interview in
today's Guardian Newspaper:

Lord Puttnam made a number of comments which may actually cause further
problems in how ME/CFS is perceived by the wider community. His most
worrying comment was regarding his apparent advocacy of 'cognitive therapy'
(which I presume is actually Cognitive Behavioural Therapy), in which he
states:
"It helped me understand the illness, but also the way in which I may have
been partially responsible for creating it."
Here Lord Puttnam appears to be advocating Cognitive Behavioural Therapy,
but, most appallingly, also blaming himself (at least partially) for an
organic neurological disease, which he himself acknowledges may be caused by
a virus. By association, here he is generalising his own, self-blaming
beliefs to all victims of ME/CFS. Later in the article he goes on to
describe himself as 'earnest and busy', and these qualities are linked to
his ME/CFS.
This is particularly unfortunate, as ME is known to afflict people of all
social classes, personalities, and abilities, whether driven, lazy or any of
the spectrum of character traits in the human species, despite the various,
furious and spurious attempts by the psychiatric lobby to discursively
construct an "ME personality".
This was primarily a highly personalised account of his own illness, by a
prominent personality who enjoys a high status and privilege. While Lord
Puttnam's status and privilege is not a point of criticism, what is of deep
concern was the lack of any political context of the disease of ME/CFS
within this article, even though Lord Puttnam is seen to be a person with
political interests (his concern for the 'kids of Wearside', for example,
documented in his interview.) The fact that Lord Puttnam is a patron of the
charity Action for ME, and had consented to be interviewed ONLY at their
request, makes the lack of political context in this interview particularly
remarkable.
Lord Puttnam has been made fully aware of the wide range of concerns about
the charity Action for ME, as detailed in the AFME Dossier:

Yet, to date, Lord Puttnam has chosen not to respond in any way to these
concerns.
My concerns are that Lord Puttnam appears, at best, completely unaware of
the serious political issues and social and material inequalities affecting
ME sufferers, and without political commitment to eradicating the injustices
affecting fellow sufferers. I am particularly worried that he appears, from
this interview, to buy into the psycho-social approach favoured by the
psychiatric lobby. Lord Puttnam may actually believe in a 'holistic'
approach to the illness, but he appears, astoundingly, to have a political
naiveté about the appalling distortion of the holistic approach to health
which has been wreaked by the psychiatric lobby in their endeavours to deny
the physical realities of ME/CFS, and culturally construct sufferers as
deviants instead.
It is not enough to 'raise awareness' of the disease, if the wrong
impressions about the disease are being given. Lord Puttnam's interview
today has given the wider community 'the wrong impression'. The specific
charities who continue to allow this 'wrong impression' to be given will
have to answer for this to the ME community.
Angela Kennedy
The ONECLICK Group

ME International

Posted at 1.5.04 by fnqsupport
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Saturday, April 24, 2004
Myalgic Encephalomyelitis

Subject: ME in Westminster

Source: UK House of Lords Date:
April 20, 2004
URL: http://www.publications.parliament.uk/pa/ld199697/ldhansrd/pdvn/lds04/text/40420w03.htm

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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

The Countess of Mar asked Her Majesty's Government:

Whether, in the light of their clarification that myalgic encephalomyelitis/ chronic fatigue syndrome is a neurological disease and not a psychiatric disorder, they will forward this information to the chief executives of all National Health Service healthcare trusts, to primary care trusts and to social services departments; and whether they will issue a press release to inform the general public and the media about the correct classification of the syndrome; and[HL2302]

What steps they have taken to inform the Presidents of the Royal College of Psychiatrists and the Royal College of Paediatricians and Child Health that those of their documents which describe chronic fatigue syndrome as a mental health disorder or list the syndrome under the heading "Support for children with mental problems" are not in accord with the Government's confirmation that myalgic encephalomyelitis/chronic fatigue syndrome is a neurological disease.[HL2303]


Lord Warner:

The Department of Health did not say that myalgic encephalomyelitis/chronic fatigue syndrome is a neurological disease. What we did, with the help of the World Health Organisation and WHO Collaborating Centre, was clear up some confusion around terminology in the second edition of the WHO Guide to Mental Health and Neurology in Primary Care.

In our present state of knowledge, chronic fatigue syndrome remains medically unexplained with various associated risk factors, and with variable symptoms, including some neurological, cardiovascular, digestive and psychological symptoms.

Our policy remains as stated in the Government response to the Independent Working Group's report in 2002. Myalgic encephalomyelitis/chronic fatigue syndrome is a debilitating and distressing condition affecting many people. It is a chronic illness and health and social care professionals should manage it as such.

The Royal College of Psychiatrists and the Royal College of Paediatricians and Child Health are independent organisations and the Department of Health is not involved in the publication of their documents. Questions on the content of their publications need to be taken up with the organisations and authors involved.

--------(c) 2004 Parliamentary copyright

___________________________________________________________________________________
As seen above the offering of Lord Warner who seems to have - once again - got his venerable knickers in a nasty knot. As I am sure that readers will recall, Lord Warner is the Health Minister who had to apologise in public for having misled the government over the mal classification of ME/CFS.

Please see Lord Warner's public apology here:
http://listserv.nodak.edu/scripts/wa.exe?A2=ind0402B&L=co-cure&P=R3109#

In his latest statement Lord Warner says above:

"The Department of Health did not say that myalgic encephalomyelitis/chronic fatigue syndrome is a neurological disease. What we did, with the help of the World Health Organisation and WHO Collaborating Centre, was clear up some confusion around terminology in the second edition of the WHO Guide to Mental Health and Neurology in Primary Care."

Er...hello….. Lord Warner? Earth to language semantics sleight of hand calling.....

The WHO recognises that ME/CFS is a neurological disease and classified as such under ICD.10 G93.3. Lord Warner confirms that the UK government accepts this classification and terminology.

Q. So how can Lord Warner recognise and accept the WHO classification and terminology of ME/CFS ICD.10 G93.3 as a neurological disease and yet at the same time seem to reject it when this is the classification and terminology that his government adopts?

A. With great difficulty.

Let's get this straight if we may. ME/CFS is a neurological disease as classified by the WHO under ICD.10 G93.3. The UK government accepts this classification. No matter how much wriggling goes on by Lord Warner, the psychiatric lobby and selected of the ME/CFS charities - namely Action for ME and the Myalgic Encephalopathy Association - this is the fact of the matter.

That's politics and vested interests in action for you. Time and again. Language semantics applied to the very ill. Disgraceful.

Jane Bryant
2004-04-23
THE ONE CLICK GROUP

ME International


Posted at 24.4.04 by fnqsupport
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Wednesday, April 07, 2004
Reality Check at the UK Department of Health

Time for a Reality Check at the UK Department of Health?

Margaret Williams

3rd April 2004

In response to a letter about myalgic encephalomyelitis (ME) sent to the Secretary of State for Health (Dr John Reid), a reply dated 31st March 2004 was sent from the Department of Health on his behalf and was signed by Karen Nicolayson from "Research and Development". On the issue of whether ME/CFS is a physical or psychological disorder, the reply stated: "The Department of Health is neutral on this issue".

A look at information previously provided by the Department of Health is revealing because it shows that the above statement is at variance with what is on the public record.

1.. ME was recognised as a physical disorder on 27th November 1987 (see Hansard (House of Commons) for 27th November 1987, column / page 353).

2.. In an undated begging letter shortly after this (distributed under the auspices of the UK ME Association) signed by Professor James Mowbray (Professor of Immunpathology at St Mary's Medical School, London), he wrote "In November 1987 ME was recognised as an organic disorder by the Department of Health. I know the feelings of frustration and anxiety felt by ME sufferers. If you will help, I know research is the best way to find the answers".

3.. In 1988 there was an Early Day Motion (EDM) on ME in the House of Commons; it stated: "That this House strongly condemns the Yorkshire Television programme 'Where there's life' broadcast by the Independent Broadcast Association on Wednesday 8th June 1988 on the illness myalgic encephalomyelitis: agrees that the programme was based on inadequate and ill-informed research: questions the motive of the programme: concludes that such a programme debases the reputation of Broadcasting and betrayed the thousands of sufferers throughout the country who suffer from the terrible illness, Myalgic Encephalomyelitis". One of the signatories to that EDM was Dr John Reid (now Secretary of State for Health).

4.. The ME Sufferers' Bill was presented to the House of Commons by Jimmy Hood MP on 23rd February 1988 and passed its first reading unopposed. The second reading was on 15th April 1988. The Bill asked for an annual report to Parliament: "It shall be the duty of the Secretary of State (for Health) in every year to lay before each House of Parliament a report on the progress that has been made in investigating the causes, effects, incidence and treatment of the illness known as ME". Hansard (House of Commons) for 23rd February 1988 at columns 167-168 records "There is no doubt that ME is an organic disorder. The sufferers are denied proper recognition, misdiagnosed, vilified, ridiculed and driven to great depths of despair".

5.. In one of her published diatribes on ME sufferers, journalist Caroline Richmond (the founder of HealthWatch), stated: "Myalgic encephalomyelitis is the first and indeed the only disease legally recognised in Britain, thanks to a private member's Bill passed in 1988" (Myalgic Encephalomyelitis, Princess Aurora, and the wandering womb. BMJ 1989:298:1295-1296).

6.. On 20th July 1989, Dr Rachel Jenkins, a Principal Medical Officer at the Department of Health (now Professor Jenkins of the Institute of Psychiatry WHO Collaborating Centre) wrote in a letter "If one reads through the historical literature of this syndrome, it is clear that there is substantial evidence that ME is an infective disorder. That is not to say that there may not be psychological consequences of the viral infection due to the presence of the virus in brain tissue. Furthermore, hysteria should always be diagnosed on positive signs of its presence, not on the absence of positive tests for physical disorders".

7.. On 5th June 1991 the UK Attendance Allowance Board Secretariat at The Adelphi, 1-11 John Adam Street, London WC2N 6HT (which works in close liaison with the Department of Health) sent a letter signed on behalf of Mrs CV Dowse that confirmed "Recent research indicates that ME must be a physical reaction to some type of virus infection".

8.. In a letter dated 13th March 1992 to James Pawsey MP (ref: POH (3) 2484/200), in his capacity as Parliamentary Under Secretary of State for Health, Stephen Dorrell MP set out the official view of the Department of Health on ME: referring to the Disability Handbook produced by the Disability Living Allowance Board, Mr Dorrell stated "The Handbook recognises that in some persons with ME there is evidence of persisting viral infections in muscles, with some evidence of muscle damage. Hence, a physical cause for ME is recognised".

9.. In a letter dated 15th March 1992, this exact view was repeated by the late Nicholas Ridley MP, who wrote to a constituent that "The Disability Living Allowance Board recognises that in some persons with ME there is evidence of persisting viral infections in muscles, with some evidence of muscle damage. Hence, a physical cause for ME is recognised".

10.. On 18th January 1996, the official view of the Department of Health was set out in a letter to Geoffrey Clifton-Brown MP (ref: POH (6) 4139/192) in terms: "The Government accepts that ME/CFS can follow a post-viral infection". This letter was signed by Baroness (Julia) Cumberlege in her capacity as Parliamentary Under Secretary of State for Health.

11.. In the British Library Current Awareness Topics Update for March 2000 is listed (on page 6) the following: Social Security Ruling, SSR 99-2p; titles II and XVI; evaluating cases involving chronic fatigue syndrome (CFS). Fed Regist 1999 Apr 30;64(83);23380-4: "In accordance with 20 CFR 402.35(b)(1), the Commissioner of Social Security gives notice of Social Security Ruling SSR 99-2p. This Ruling clarifies disability policy for the evaluation and adjudication of disability claims involving Chronic Fatigue Syndrome (CFS). This Ruling explains that, when it is accompanied by appropriate medical signs or laboratory findings, CFS is a medically determinable impairment that can be the basis for a finding of "disability". This Ruling ensures that all adjudicators will use the same policies and procedures in evaluating disability claims involving CFS, and provides a consolidated statement of these policies and procedures".

12.. This was reported in the Disability Rights Bulletin, Summer 2000 in the following terms: "In assessing DLA higher rate mobility component for people with ME, recent guidance advises decision makers to assume in the vast majority of cases that the claimant has a physical disablement. The Commissioner, in CDLA/2822/99, held that an award of the higher rate mobility component can be made on the basis of the physical element of the condition. Guidance (DMG Memo Vol 10-3/00) advises decision makers that, in the vast majority of claims, if a doctor says the claimant has ME or CFS then that can be taken as an opinion that they have a physical disablement".

13.. A letter dated 30th May 2001 from the Department of Health signed by Linda Percival of the Health Services Directorate (ref: TO 2001 / 15353) states "To improve services for people with long-term illnesses, the Government recently announced a National Services Framework (NSF). The NSF will have a particular focus on the needs of people with neurological disease. It is very likely that chronic conditions such as ME/CFS will be included". (For the record, when he was made aware of this, Chris Clark, CEO of Action for ME and at the time a member of the CMO's "independent" Working Group on "CFS/ME", claimed he would be totally amazed if this were true).

From the above, it can be seen that the Department of Health and its associated official bodies are not "neutral" about ME/CFS as claimed on 31st March 2004 on behalf of Secretary of State Dr John Reid. What can be clearly seen is that either the Department of Health does not know what it is doing from one day to the next or, on no good evidence, it has allowed itself to be overly influenced by the psychiatric lobby. In my opinion, this makes their present unquestioning acceptance of the Wessely School's expediently constructed psychiatric paradigm all the more culpable, because although people are justified in relying implicitly on these documents from official bodies quoted above, they are being badly let down when they attempt to do so.

It is certainly the case that the present Parliamentary Under Secretary of State for Community Care at the Department of Health, Dr Stephen Ladyman MP, has grossly misled both MPs and the public: it was he who by letter dated 7th October 2003 (ref: PO 1036444) stated in support of Professor Wessely's personal view that "The WHO ICD-10 classifies CFS in two places; as neurasthenia / Fatigue Syndrome on the mental health chapter (F48.0) and as Postviral Fatigue Syndrome / Benign Myalgic Encephalomyelitis in the neurology chapter (G93.3). The WHO has essentially put the same condition in both places". The international ME/CFS community must now be aware that the Health Minister, Lord Warner, had to admit in his letter of 11th February 2004 to the Countess of Mar that this was erroneous: even the letter of 31st March 2004 from Karen Nicolayson concedes this: "I confirm that the World Health Organisation (WHO), the WHO Collaborating Centre and the Department of Health have now agreed a position on the classification of CFS/ME (and it) has been indexed to the neurology chapter".

In view of what the Department of Health has previously stated about ME/CFS, is it not inconsistent for it now to claim in the same letter that it is "neutral" about ME/CFS, yet it accepts ME/CFS as a neurological disorder?

ME International

Posted at 7.4.04 by fnqsupport
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Tuesday, April 06, 2004
Myalgic Encephalomyelitis UK Scandal?

Official Complaint Against The MEA Lodged With The Department Of Health UK

An official complaint has been lodged today with the Department of Health UK in regard to the ME/CFS charity the Myalgic Encephalopathy Association (MEA).

It has recently been announced that the MEA is to join the Department of Health Steering Group for NHS services in regard to the £8.5m for services provided for people suffering from ME/CFS whilst refusing to act with the transparency and accountability as required by the Charity Commission for England and Wales regarding its finances. Despite repeated and legitimate requests in regard to the solvency or insolvency of this charity, the MEA refuses to provide the information required.

Steps will now be taken at the highest levels.

Jane Bryant
THE ONE CLICK GROUP
4 April 2004

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

Letter to the Department of Health UK

4 April 2004

Department of Health

Wellington House

135 – 155 Waterloo Road

London SE1 8UG

Official Complaint – Myalgic Encephalopathy Association

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

We are writing to you today to lodge an official complaint against this ME/CFS charity, the Myalgic Encephalopathy Association (MEA).

Complaints against this charity have already been lodged with both The Charity Commission for England and Wales and the Insolvency Service. Copies of the respective letter and fax both dated 2nd April 2004 sent to the Charity Commission for England and Wales and The Insolvency Service are attached for your perusal.

What has prompted this official complaint now lodged with yourselves is the fact that it has been announced that the MEA is to join the Steering Group for NHS services in regard to the £8.5m for services provided for people suffering from ME/CFS whilst refusing to act with the transparency and accountability required by the Charity Commission for England and Wales regarding their finances. This is of serious concern.

This MEA charity is refusing to provide its members with the necessary financial information that will show as to whether this charity is solvent or not as at the 31st December 2003. This is despite repeated requests for this information from its members. If the Trustees of this charity are still allowing it to trade whilst in the knowledge that it is insolvent, this is a criminal act and needs to be investigated by your department as a matter of urgency. We require this issue to be resolved with immediate effect.

This complaint is being lodged with your department by email and a hard copy of this complaint will also be despatched to you by Royal Mail forthwith.

We would ask you please to respond to the concerns of the members of this MEA charity and the wider ME/CFS community without delay.

Many thanks.

Yours sincerely

Jane Bryant

Cc. The Countess of Mar, House of Lords

ME International

Posted at 6.4.04 by fnqsupport
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Tuesday, March 30, 2004
Myalgic Encephalomyelitis AfME more problems

Concepts of Accountability

On the 11th January 2002 The Chief Medical Officer's Working Group Report on ME/CFS was published in the UK.

See: http://www.dh.gov.uk/assetRoot/04/06/49/45/04064945.pdf

For some considerable time BEFORE the report was published, the WHO Collaborating Centre Kings College (the Wessely School) had CFS (with ME subsumed under the CFS umbrella) erroneously reclassified as a mental disorder contrary to WHO Headquarters dicta and international consensus.

It is under this climate and these conditions that the CMO's Working Group Report was produced.

Prior to the start of the three years of deliberation that took place before the production of this report, it was demanded that Members of the Working Group sign the Official Secrets Act. This highly unreasonable demand in regard to deliberations of a disease was subsequently dropped. Nonetheless, secrecy was the watchword of these proceedings.

The Concepts of Accountability (COA) document written by Emeritus Professor Malcolm Hooper with contributions from the ME/CFS community was written at that time. COA became a government restricted policy document and was unable to be published anywhere.

It is the case that as a direct result of the CMO's Working Group Report, we now have the introduction of the new ME/CFS centres in the UK that are proffering the psychosocial treatments of APT/CBT/GET and the psychosocial PACE/FINE trials for sufferers of the neurological disease ME/CFS ICD-10 G93.3. These psychosocial initiatives are being actively supported by the UK charity Action for ME (AfME).

Because of these most serious issues that are highly detrimental for all sufferers of the neurological disease ME/CFS ICD-10 G93.3 in the UK, the ME/CFS community UK now elects to publish the COA document.

See: http://www.bryantpr.plus.com/CONCEPTS%20OF%20ACCOUNTABILITY.pdf

The ME/CFS community UK believes that the prevailing culture that protects physicians from being held personally accountable is no longer tenable, because it means that the system of silence ensures that the beliefs and actions of doctors that need to be challenged are not challenged and that this is potentially harmful to vulnerable patients.

Jane Bryant
The One Click Prostest

ME International

Posted at 30.3.04 by fnqsupport
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Monday, March 15, 2004
ME/CFIDS/CFS/FM UK more


THIS IS A STATEMENT OF PUBLIC INTEREST

Conflict of Interest : Dr Charles Shepherd, Trustee of the UK ME Association


A Conflict of Interest is defined as: "a situation when someone, such as a lawyer or public official, has competing professional or personal obligations or personal or financial interests that would make it difficult to fulfil his duties fairly."
I am in regular contact by various means with many members of the ME/CFS community all over the world. We have increasing concerns over the Conflict of Interest that has arisen as a result of the renaming of the UK ME Association to the "Myalgic Encephalopathy Association".
Like several other associations worldwide, the ME Association now goes under the name of an illness that has no World Health Organisation category. This presents dangers not only for the ME Association but possibly for other ME/CFS organisations in the US and elsewhere, in that any illness with no official categorisation is open to abuse, and/or to inappropriate and damaging treatment.
As used by the World Health Organisation, the term ME is listed in full (along with Chronic Fatigue Syndrome) as "Myalgic Encephalomyelitis" under category ICD 10 G93.3 - a neurological categorisation. The term "Myalgic Encephalopathy" is not recognised by the WHO and therefore has no categorisation.
Herewith arises the Conflict of Interest which so concerns us in the UK.
This suggested term for the illness is being actively and publicly promoted by Dr Charles Shepherd of the UK ME Association. Dr Shepherd is not an ME/CFS specialist, he is a general practioner. He lists various scientific justifications for the position he has adopted. However, internationally respected ME/CFS experts such as Dr Byron Hyde and Dr Elizabeth Dowsett disagree strongly with him, also with scientific justification. The Canadian Criteria consensus panel disagree also.
Since there is potential danger in jumping the gun and pre-emptively adopting a term that has no categorisation by the World Health Organisation (and which could if adopted by the WHO be categorised under F14 - mental illness) why should there be such a drive to promote it in a propaganda blitz such as is happening now in the UK?
The entry on the UK Charities Commission Register of Charities officially lists the ME Association's new name as THE MYALGIC ENCEPHALOPATHY ASSOCIATION. Their Objects as registered with the Commission also contain it.
Therefore the MEA no longer conforms either to the World Health Organisation's listing of the illness, or even to that of the UK Government. Our Health Minister Lord Warner recently and unequivocally referred to the illness by its WHO term: "Myalgic Encephalomyelitis".
One must now seriously question whether the main motivation behind Dr Shepherd's increasingly anxious promotion of the new term is this: If the MEA is to have any credibility at all after its ruthless attempt to single-handedly force this new term into public use, Dr Shepherd has to win the argument.
Such a Conflict of Interest throws doubt on a Witness Statement in any court of law. When Dr Shepherd gives medical reasons for his promotion of a new term for ME/CFS, he ignores other medical information supplied by ME/CFS experts Dr Byron Hyde and Dr Elizabeth Dowsett and also the information in the Canadian Criteria in the Journal of Chronic Fatigue Syndrome. This fact in itself should alert us to the presence of the Conflict of Interest.
To summarise:
Under Dr Shepherd's medical leadership, the name of the MEA itself was changed FROM the designation of the illness used by the WHO to one of Dr Shepherd's own personal choosing. The MEA members voted for it, since they trusted Dr Shepherd.
The ME Association is now in a quandary. It has no option but to promote this new term for the illness.
It is locked into promoting a term not used by the World Health Organisation or the UK Government and which, therefore, carries serious dangers for ME/CFS patients if it should ever be adopted. Categorisation could be influenced by the psychiatric lobby who so recently tried to get away with listing ME/CFS as a mental illness and has had to back down.
Dr Shepherd is actively trying to get the MEA's new term for the illness into use by our Department of Health and by the medical establishment. Are we to think that these factors are completely unrelated and that he, as an MEA Trustee, is not influenced by the MEA's need to justify its name?
IMPLICATIONS
In political circles, if such a Conflict of Interest arises, it has to be publicly declared in any debate, so that any hidden influences are revealed. If a Conflict of Interest arises amongst the Trustees of a Charity, the Trustee concerned has to withdraw from any debate concerning that issue.
Should Dr Shepherd now withdraw from any public discussion of this matter? Despite publicly announcing the new name of the MEA, he has, to our knowledge, never declared openly this obvious Conflict of Interest. In such a situation, how can we accept his medical arguments as being without bias?
The ME/CFS community needs to seriously consider this matter. This debate is NOT about what might or might not be a good term for the illness in the future. It is a debate over an official categorisation that protects patients and about the integrity of the information we are being fed.

Jane Bryant
The One Click Group

Posted at 15.3.04 by fnqsupport
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Tuesday, March 09, 2004
ME/CFS/CFIDS Scandal UK


Shame & Disgust (An open Comment)
The following was sent to me anon
The new West Midlands 'Centre of Excellence' for ME/CFS.

"I needed something to cheer me up this evening, our new clinic opened today and not only was it a shambles but the ME/CFS consultant told a patient that there was no such thing as ME. That CBT and GET can cure everyone. I feel that our committee have nearly killed ourselves at meetings over the last three years for nothing."

This is indeed disgusting and the shame lies with the so called consultant who should be named and the matter brought to the attention of the MRC with a request that they look into this, or we may as well throw the £8.2 million down the drain if this is the best that suffers can expect.
I shall be sending this to Prof George Radda and Elizabeth Mitchell at the MRC, anyone else wishing to do so their e mails are :
george.radda@headoffice.mrc.ac.uk
elizabeth.mitchell@headoffice.mrc.ac.uk
Trev CAME


ME International

Posted at 9.3.04 by fnqsupport
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Friday, March 05, 2004
ME/CFIDS/CFS/FM UK Scandal


The following was sent anon
The new West Midlands 'Centre of Excellence' for ME/CFS.

"I needed something to cheer me up this evening, our new clinic opened today and not only was it a shambles but the ME/CFS consultant told a patient that there was no such thing as ME. That CBT and GET can cure everyone. I feel that our committee have nearly killed ourselves at meetings over the last three years for nothing."

This is indeed disgusting and the shame lies with the so called consultant who should be named and the matter brought to the attention of the MRC with a request that they look into this, or we may as well throw the £8.2 million down the drain if this is the best that suffers can expect. I shall be sending this to Prof George Radda and Elizabeth Mitchell at the MRC, anyone else wishing to do so their e mails are :
george.radda@headoffice.mrc.ac.uk
elizabeth.mitchell@headoffice.mrc.ac.uk

ME International

Posted at 5.3.04 by fnqsupport
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