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

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

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

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

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

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

This has been an extremely difficult post to write.

Over the last few days, vicious abuse has been laid at the door of myself and my young ME sufferer son. Out on the internet, by personal email and by phone. To the extent that we were forced to live under siege conditions in our home for a few days.

This persecution has been spectacularly obscene because this abuse has not been thrown at us by the psychiatric hegemony or the doctors and the individuals that collude and assist them as one might expect and is par for the activist course. This feeding frenzy at our expense has been carried out by a handful of the ME/CFS community itself – some of whom are notorious for this very type of activity in the past - for whom so much proactive action at considerable cost has been carried out.

When people behave in this way, not only do they damage the individuals that they attack and force all proactive work on the part of said individuals to cease, but also they damage the cause.

The brunt of this extensive abuse seems to have revolved around three factors: The publication of The AfME Dossier 2004, my writing style and the fact that I am a woman and the carer of a young boy age thirteen who has been forced to live the majority of the last two and a half years of his life mostly behind four walls because he suffers from ME/CFS.

Let me ask you this. Were the carers of AIDS sufferers so maligned when they assisted in carrying out the most successful change of hearts and minds disease campaign ever known in history? With the funding of research and treatment of this disease that ensued as a result? Were they castigated and was it said that since these carers did not suffer from AIDS themselves, then their contributions were therefore invalid and unwelcome? The answer is NO. The AIDS community welcomed the carers with open arms, as do cancer sufferers, those with leukaemia and any other serious disease that you care to name.

What is it about certain elements of the ME/CFS community that they dare to denigrate, abuse and behave in this way towards others?

I have lived every hour of the day, 24/7 with my son for the last two and a half years whilst I have watched him suffer and have cared for him. Whilst my own life and career have been ruined as a result of ME/CFS. This matters not one jot however because I care for my boy and I have done everything in my power to be with him whilst he goes through this. He should expect nothing less of me. This is my job as his Mum.

I have also had to put up with extraordinary treatment at the hands of certain elements of the medical profession. With my son as a minor, I have had to fight his corner for him time again when I have refused the notoriously damaging treatments of CBT/GET on his behalf that have time and again shown to damage sufferers of the neurological illness ME/CFS. Baseless accusations time without number from many quarters have been also been levied at my head – as they have against every single parent of an ME/CFS sufferer child in one way or another – that the fact that my son suffers from ME/CFS is all down to me. That I created this illness in him. That this is my entire fault.

Have any of you got any idea of precisely just how painful this is? How difficult this is to counter? How some elements of the ME/CFS community have the sheer unkindness to behave as badly as they have towards my son and myself leaves me entirely incredulous and deeply saddened. How dare you do this to us? By what remit or mandate?

It is of absolutely no import to me as to whether people either like or dislike the way that I professionally use words and string them together. The fact that some feel empowered to sit in judgement over a writing style when they themselves do very little that is positive except to use what up time they have for denigration rather than proactive action, is a matter for them and frankly dignifies no further comment.

What *has* mattered are the attacks on The AfME Dossier 2004 that was written by me with valuable contributions from thirty-eight members of the ME/CFS community and that went through fifteen drafts in all prior to publication.

The first draft of The AfME Dossier 2004 was submitted to colleagues for view on the 13th November 2003. The final publication of the Dossier took place on the 29th January 2004. This represented three months of solid hard work inclusive of endless research both on the internet and in the real world, visits and interviews with the Charity Commission and the obtaining of formal statements from this organisation, literally hundreds of telephone calls, many letters and emails sent and so on; in short, the concentrated effort that is required to produce an investigative report on the AfME charity that has disenfranchised its members since 1986. And all this was carried out at my own financial expense that I can ill afford.

The fact that certain individuals have chosen to attack an important piece of work carried out with, for and by the ME/CFS community itself says a great deal about said community.

It highlights most clearly that that this community is in part a hate- filled arena. That it is clearly much easier for selected elements of this community to attack its own members rather than seek to work towards overturning the injustice and mal practice that has been carried out on ME/CFS sufferers in the UK and elsewhere in the world for so long.

The effects of all this is that whereas I should have been concentrating on pushing the Dossier forward to opinion formers nationwide, I have been unable to work proactively.

It is also unfortunately the situation that the media has witnessed this bloodletting spectacle and feeding frenzy that has been carried out at my expense on the internet. I will leave you to draw your own conclusions as to what the media reaction has been. To say that it is unfavourable is a considerable understatement.

It is also the case that when the psychiatric lobby and its adherents witness such damaging antics as these carried out by the selected few, they feel able to reaffirm their belief that the psychosocial treatments on offer in the UK are absolutely what is required and apply for further funding from their respective governments.

One other unfortunate domino effect from the feeding frenzy that has gone on is that people within our ME/CFS community who have the ability, qualifications and training to assist with the cause will hesitate in the future to make a positive and proactive contribution for fear that they will be vilified and persecuted in turn.

This has been a horrible time for Ben and myself. Horrible to endure and horrible to witness

NEXT STEPS

My first reaction to this concentrated abuse campaign carried out by the few was to close the One Click Protest Group entirely. To delete it and its contents from the internet. I hesitated because an action such as this would give the psychiatric hegemony and selected of the UK charities that have done and continue to do so much damage, immense satisfaction.

There have now been many emails received worldwide requesting, nay pleading, with me not to do this. And so I have listened. But I will never again put my son and myself in such a vulnerable position.

Henceforth, the One Click Protest Group will change. It will carry primarily Information, News, ME/CFS Developments and suggested Actions. There are many other internet sites where sufferers can hurt each other and cause damage if they wish; One Click will not be one of them.

The One Click Protest Group will now be structured in the form of a newspaper if you like. The Editors will be Angela Kennedy and myself. All contributions made by the members will be welcome and will be subject to review as in any campaigning organisation/news outlet.

The One Click Protest Group Action Plan (Post No. 1945) will continue to be carried out

THE ONE CLICK PROTEST GROUP WEBSITE

I had hoped within a few weeks to construct the One Click Protest Group website. This would have given ease of access to our campaign worldwide. The website would also have the capacity and potential to carry out any activist campaigns agreed and developed by the ME/CFS community worldwide.

Unfortunately the assistance of the One Click Technical Director (age 13) is needed for this project and due to the abuse received over the last few days, he is currently refusing to assist. And frankly who can blame him? Certainly not me. Website construction will now have to wait.

CONCLUSION

I would like to thank Angela Kennedy for the wonderful job that she has done in recent months on behalf of the ME/CFS community. The tireless work that she has undertaken both in public and behind the scenes. And for the thankless task that she has undertaken in recent days in her attempt to rebut the constant abuse laid at my door and also her own. For her sound and cogent advice in relation to the abuse, for advising me not to look at it any more, not to read it and therefore not to rebut because she knew that if I did, I would quit.

A global round of applause for Angela Kennedy please. Without the assistance of Angela Kennedy, One Click would now be dead.

Let us hope that the ME/CFS activist future is something we can collectively be proud of.

Thank you

Jane Bryant
London UK
February 2004

Lord Warner clarifies WHO Classification DH

Department of Health

From the Parliamentary
Under Secretary of State The Lord Warner

Richmond House
79 Whitehall London
SW1 A 2NS
Tel: 020 7210 3000

11 FEB 2004


Countess of Mar House
of Lords London SW1A
OPW


Debate on Myalgic Encephalomyelitis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


During this important debate on 22nd January you raised points about the WHO classification of CFS/ME and the position of blood donors with this condition. I also promised to send details of the new centres clinical champions and local teams to noble Lords who spoke in the debate which I have done in a separate letter.

May I apologise for the delay in writing to you. I was unfortunately out of the country for a week on Ministerial business. I also wanted to ensure that we investigated this matter thoroughly before responding to you.

Since the debate the WHO, the WHO Collaborating Centre and the Department of Health have now agreed a position on the classification of CFS/ME:


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

The classification ICD-10 however, does not allow for this complexity and hence currently classifies fatigue states in the mental health chapter and post viral fatigue syndrome in the neurological chapter. Latterly, chronic fatigue syrldrome -a term that was not invented when ICD-10 was produced -has been indexed to the neurology chapter. Although ideally, ICD-10 aims for mutually exclusive categories and subcategories, in practice, one clinician may label a particular symptom complex as chronic fatigue syndrome while another may call the same condition neurasthenia or chronic fatigue. It is inevitable, therefore, that some overlap exists in the statistical data collected according to ICD-1 O.


The UK accepts lCD-1O, and therefore after it was pointed out that the relatively new term chronic fatigue syndrome has been indexed to the neurology chapter, corresponding adjustments were made to the web version of the first edition of the guidelines, and an erratum note has been placed on the RSM website.


The second edition of the WHO Guide to Mental Health and Neurology in Primary care will only have one ICD-10 code for CFS -this is G93.3.

In the debate I said that "ICD-1 0 classifies CFS in two places:
as neurasthenia in the mental health chapter, F48.0; and as myalgic encephalomyelitis in the neurology chapter, G93.3."

The Department accepts that it might have been clearer to say that chronic fatigue syndrome is indexed to the neurology chapter and fatigue states to the mental health chapter but that, in practice, some overlap exists in the statistical data collected according to ICD-10 due to the practice of clinicians. I hope that this clarifies matters


We have also checked with the National Blood Service on the points you made about about thE~ status  of donors with CFS/ME. They have provided the following information:

The NBS guidelines on donor selection on ME refer to those on
Post Viral Fatigue syndrome:

The current rule is: Discretionary (which means that a decision has to be made on the individual potential donor and their medical condition at the time) and the guidance is: defer from blood donation until recovery.

The underlying logic is that this condition is still of undefined aetiology, possibly viral, and therefore NBS cannot accept the risk of possible transmission by blood. There is no evidence either way and such evidence is impossible to obtain, so "common sense" medical judgement applies.

The deferral is not a lifetime ban but since the condition is very variable and sometimes prolonged, it could become such in any particular case. Sometimes, with donor per-mission, the NBS check with the GP.

It should be remembered that donation must not jeopardise the health of the donor. It is not known what effect taking 470ml of blood from someone with ME could have on them

Most donor interviews are carried out by health care professionals (nurses/ doctors) an(j, in spite of intense training, there is inevitably some variation in the application of the rules, as every donor is different and every health care professional has had different personal experiences.

On the whole NBS manage a reasonably uniform set of deferral and exclusions. NBS carry out audits on this from time to time as they do not wish to turn away anyone who wishes to donate without good reason for so doing nor do they wish to accept anyone whose donation may not be as safe as possible.

I have copied this letter to all those who participated in the debate and to the House library.

I have also received your letter suggesting that we meet. My office will contact you to arrange this.


NORMAN WARNER


DH
Department of Health

AfME  -  Names/Addresses
Of The Trustees, Company Information
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Herewith the names and addresses of the AfME
Trustees as of the AfME Reports and Accounts,
March 2002.

I  would suggest that as the ME/CFS Community,
you make your views known to these people.

A copy of THE AFME DOSSIER 2004 has been posted
to the Trustees .

Messrs. Clark and Golding will receive their copy by email.

Chris Clark - Chief Executive Officer
AfME
73 Watling Street
London
EC4M 9BL
Tel: 020 7329 2299
Fax: 020 7329 3600
Email: chris@afme.org.uk

Richard Evans - AfME Company Secretary
77 Sunte Avenue
Lindfield
West Sussex RH16 2AB

Fiona Agombar
Stemps Land
Stone
Tenterden
Kent TN30 7JG

George Armstrong
Morello Cotage
Lower Rockhampton
Dorchester
Dorset DT2 8PZ

Revd. Richard Buckley
Ste Croix
Coryate Close
Higher Odcombe
Yeovil BA22 8UJ

Louise Fish
7 Manor Court
Manor Drive
Surbiton
Surrey KT5 8NE

Claire Francis
13 Argyll Road
London W8 7DA

Tony Golding
9 Priory Avenue
Bedford Park
London W4 1TX
Roma Grant
108A Grove Lane
London SE5 8BJ

Helen Obrien
Abbot House
Ferndown Close
Guildford
Surrey GU1 2DN

Robert Quittenton
Cliff Hall Hotel
16 Crescent Road
Shanklin
Isle of Wight PO37 6DJ

Ian Shaw
37 Snaresbrook Drive
Stanmore
Middlesex HA7 4QN

Patricia Shipley
106 The Mall
Southgate
London N14 6LP

Patricia Taylor
Millstone House
Norwell
Newark
Nottinghamshire NG23 6JN

Ondine Upton
13 Streatley Road
London NW6 7LJ


ACTION FOR ME (AfME) - COMPANY INFORMATION

Founding President - Claire Francis MBE
Vice Presidents - Martin Arber, Sue Friday
Patrons - Lord Bragg, Julie Christie, Claire Francis MBE, Lord Puttnam CBE
Principal Medical Adviser - Professor Anthony Pinching
Secretary - Nick Farrar
AUDITORS
Hele Kergozou
Lilac Cottage
The Street
Draycott
Somerset BS27 3TH

BANKERS
Royal Bank of Scotland
Birmingham Colmore
Row Branch
79-83 Colmore Row
Birmingham B3 2AP

LEGAL ADVISER
A.J. Lutley
Springfield
Rookery Hill
Ashtead Park
Ashtead
Surrey KT21 1HY

REGISTERED OFFICE
73 Watling Street
London EC4M 9BL

REGISTERED NUMBER
1036419


ONECLICK

 

Carli Barry - 8th Feb 1974 - 8th February 2001 - devastating effects of the current situation

I met Sheila Barry at the Skewed book launch.  I cried over her speech.  And I understood.

Respect Sheila Barry.   Respect, understanding and codolences from me and mine. All that there are. 
 
All our love

Jane and Ben xxx

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

From Sheila Barry

Carli Barry - 8th Feb 1974 - 8th February 2001 - devastating effects of the current situation

It is three years since Carli died, by her own choice, on her 27th birthday.   We still await the inquest

Many thanks to those of you who have sent messages

She was a very talented artist, being able to work equally well with paint, copper and words. She wrote articles for TYMES TRUST under the name of Illyana – they were very well received

Her very moving poem `Still Friends', which she wrote when her best friend deserted her (a sad fact of life for ME sufferers) won First Prize in Afme's Poetry competition in 2002

It has recently been set to music  by Trev Williams, the very talented brother of Zoe and is now available on a CD.

Carli's ME was so much better shortly before her death. In fact she was better than she had been for many years.   There were a few reasons which I feel led her to take this action.  

However, the main reason I believe is  outlined in the words  below which I spoke at the launch of SKEWED in December 2003.

" The first thing I would like to say is that I am not accustomed to public speaking.   I have never spoken at such an event as this. 

You will have heard, or you will hear, from people who are very qualified to speak here - I regard myself as an ordinary mother but then nothing is ordinary if you have an ME sufferer in the family.  So why have I travelled down from York to speak at this book launch.  I am here to tell you of the devastating effect the situation outlined in this book, has on the lives of ME sufferers.

 Skewed clearly outlines the reasons why many of  those suffering from ME feel alone, isolated and have little hope for  the future.

I personally regard psychiatry as a growth industry.  The number of conditions identified as mental illness has grown tremendously in recent years.  MS and Parkinson's, among others, were earlier identified as psychiatric illnesses and recently I read that `shyness' has been classified as a psychiatric condition. How do they arrive at these decisions.   Psychiatrists classify a condition when a number of them are able to agree a criteria.  They have no diagnostic tests.    It is simply a matter of opinion.

At present there are no diagnostic tests for ME and psychiatrists are determined to have it classified as a mental illness. They have no tests – it is simply their opinion. ME sufferers, and especially their carers, as the sufferers are too ill, must ensure that this does not happen.

I recently attended a meeting  of  the  Advisory committee on Pesticides concerning the  alternatives to pesticides . – Chairman said  that alternatives would be too expensive. How long will it be before it is realised that the continued use of pesticides is having a detrimental effect on the lives of so many . It is said that cheaper food is produced but at what cost.  How much longer will the dangers of the chemicals to which we are all constantly exposed , be covered up by those who have a financial interest in the matter.

There has been consultation on banning crop spraying close to houses and schools and I discovered that it is the local councils who are among the worst offenders on the use  of pesticides.  They are used in parks and schools, so young children are  constantly being exposed to the dangers. There is an increase in so many illnesses in children which  would appear to many, to relate to chemical exposure. ;  

 In his book, Martin highlights  how the government, the chemical industry and the insurance industry are doing everything possible to deny any connection.  The Goverment cannot afford to  admit  it – to do so would result in untold claims for compensation. But after  Mad Cow Disease and the foot and mouth crisis – does anyone now believe anything that the Government says on this matter?

What has driven me to attend this book launch.

My daughter,   had been an ME sufferer for more than 10 years.  She died, by her own choice , on her 27th birthday.  She walked out of her flat in the middle of the night. It was the first time she had been out alone for years.   She took an overdose.   It was 9 days before her body was found by her partner  - 250 yards from her flat and 25 feet from the place the police had parked their cars when they had said that they were carrying out a through search for her.  They have since been forced to admit that they did not search that area. We didn't – as we believed them.  The Police were alerted 2-and-a-half hours after she left the flat and took the overdose,  so there is every possibility that she would be alive today if they had acted in a more efficient manner.

It was nearly 3 years ago and we still await the inquest.  I must say that  in some way I felt a sense of   relief..  She was no longer suffering and in constant pain.   Any parent will know how difficult it is to see a child in so much pain and to be unable to do anything to help.

In fact, shortly before she chose to die, Carli's ME was much better.  She was able to get to the toilet unaided and even move around  the flat for no reason other than for the joy of being able to move and do what, we able bodied people, take for granted.

She was considerably  better but in no way well enough to return to work.  She had in the past experienced major problems with the Benefits Agency and had been treated in such a horrendous manner she had said that she would never be able to apply for benefits again.

Applying for benefits for an invisible illness, with no diagnostic test is hell.   The result largely depends on the beliefs of the doctor sent to examine you – a game of Russian roulette.

It makes planning your life impossible.  My daughter needed her benefits to maintain her flat and her independence.

Her first application for DLA was turned down;  - the second resulted in Mobility at High rate and Care at lower.

.She was for most of the time bed bound, unable to sit herself up and  totally dependent on her partner.

The third application was completely rejected. It took 18 months to get to Tribunal during which time she had to live with the thought that if her benefits were not reinstated, she would no longer be able to maintain her flat. Her condition deteriorated as a result of the stress.  She was too ill to attend the Tribunal but she was awarded  the Care element of DLA for 3 years.  However, although she was wheelchair bound, she was not awarded the Mobility element, as the doctor believed her condition was `all in her mind'. She was too ill to take the matter further and to do so could have resulted in the Care element being withdrawn.

As she had been awarded Care for three years she had a couple of years free from the constant stress of filling in forms for an illness with ever changing symptoms.  Her health improved considerably as she was able to concentrate on her health instead of constantly filling in forms on which her benefits relied.  As the time got closer  for her  to re-apply she was adamant that she could never face the stress again.  Her action meant that she never had to.

I believe that the actions of the psychiatric lobby to have ME classified as aa a psychiatric illness and to prevent  research into the cause, and a diagnostic test were the major reason that my daughter chose to end her life. 

Shortly after her death,  I was told that she was the third ME sufferer in our area who had taken similar action.    There seemed to be little information on this subject that many people prefer to ignore.  I decided to attempt to set up a register of those ME sufferers in UK who had ended their life. I also requested information from any sufferers who had felt suicidal.

The response, I am sorry to say was overwhelming.  I was contacted by so many people who felt that they did not want to live for another 2 or 3 decades with such a terrible illness, and with no hope of a cure. The reading was harrowing.

They talk of the isolation, the lack of understanding by the medical profession and the difficulty of applying for benefits. Those too severely affected to be able to leave their homes are left with no support and no treatment.

I would like to read a few extracts from the mails I received

At this point I read out extracts from  the `suicide reigister'

These people are in a state of despair.  I do not  believe that they are depressed – they are simply taking a realistic approach to their situation

ME sufferers and their carers must take whatever action is necessary to ensure that money is made available for research into the physical cause of this illness and for a diagnostic test to be made available.

I feel that only a mad man would say that the illness so many thousands over the world are suffering – with similar symptoms is `all in the mind'…..but then I have read that `most psychiatrists are mad'…. And having in fact worked with one in the past – I do believe that there's a lot of truth in that statement!

If in some small way my daughter's death has made a difference – I will not feel that she has died in   vain.   
   
Thanks to Martin for producing this book …." 

Reference:

Details of the new book by Martin J Walker - "SKEWED: Psychiatric hegemony and the manufacture of mental illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome" - can be found at the MERGE website http://www.meresearch.org.uk/.

Quote:

"....These people are in a state of despair.  I do not  believe that they are depressed ­ they are simply taking a realistic approach to their situation...."