"The financial implications in terms of pensions and compensation for which governments and business could be called to account are massive. Every subterfuge: legislation, confiscated or missing private and official records, the Official Secrets Act, the "D Notice" mechanism forbidding public disclosure and legal gymnastics, has been employed. A key to this manipulation and deception has been to attribute physical effects to mental disorders. This cannot, of course, explain away serious physical disabilities, a mounting death rate or widespread birth and associated physical abnormalities. It does explain the significant lack of publicity!"
(A constituent writes...)
Dear Donald Anderson - MP Swansea East, (and Chairman, Foreign Affairs Select Committee)
You may remember I wrote to you back in July about CFS-ME being misclassified as a mental disorder within the 1st edition of the 'WHO Guide to Mental Health in Primary Care'. I asked for your assistance in obtaining factual accuracy by having Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (or CFS-ME) removed from the 'Guide to Mental Health in Primary Care'.
I wish to thank you (and also your assistant Grace Trotman) for your help on the matter, and for subsequently forwarding me both responses from Minister of State, John Hutton MP on behalf of the Department of Health. Although, unfortunately, John Hutton seemed to have wrongfully assumed, in both his responses, that the WHO Collaborating Centre for Research and Training for Mental Health, Institute of Psychiatry, Kings College, London, carries the sanctions of the WHO Headquarters in Geneva, when in actual fact they do not.
Indeed, Dr B Saraceno, Director of the Department of Mental Health at the WHO (Geneva), has confirmed in writing the classifications of neurasthenia, fatigue syndrome, postviral fatigue syndrome and myalgic encephalomyelitis in the following terms: "Let me state clearly that the World Health Organisation has not changed its position on these disorders since the publication of the International Classification of Diseases, 10th edition, in 1992 and versions of it during later years. Postviral fatigue syndrome remains under diseases of the nervous system as G93.3 (and) ME is included within this category. It is possible that one of the several WHO Collaborating Centres in the United Kingdom presented a view that is at variance with WHO’s position". See :- http://www.meactionuk.org.uk/Mar_Szmukler_Correspondence.htm
John Hutton has therefore failed to comprehend the exact nature of my letter. Fortunately though, the Institute of psychiatry did. You therefore may be interested to know that Professor Rachel Jenkins, Director of the WHO Collaborating Centre for Mental Health Research and Training at the Institute of Psychiatry, has prepared an erratum slip for the remaining copies of the Guide confirming M.E. is coded as G93.3 in Ch VI, Diseases of the Nervous System with the 1994 index to ICD10 connecting CFS to G93.3. This can be read on the RSM Press publishers website, found at :- http://www.rsmpress.co.uk/bkwho.htm
This latest intervention by Rachel Jenkins confirms the 'WHO Guide to Mental Health in Primary Care' issued throughout the UK - has misclassified CFS-ME under Mental and Behavioural Disorders, coded F48.0 - a category from which ME / Chronic Fatigue Syndrome is expressly excluded by the World Health Organisation and the World Health Assembly. Therefore despite the reassurances from John Hutton, it is plain to see, without any doubt whatsoever, that the UK Collaborating Centre has been in direct contravention of the WHO’s own classification, and yet Collaborating Centres are not permitted to change classifications without the approval of the World Health Assembly.
In John Hutton's second response he mentions a forthcoming 2nd edition of the "Guide" due out soon, where I am reliably informed CFS-ME will be coded under both 'neurological G93.3' and 'F48 psychiatric', with the distinction likely to be based on a viral or non viral onset - thus condemning all those with chemical exposure (e.g. Organophosphates as their particular trigger) to the psychiatric classification. Should such a dual classification appear in the forthcoming 2nd Guide, this would again be in defiance of the World Health Assembly and of the WHO ICD classification: on 28 June 2001 the WHO itself confirmed that such a dual classification of the same condition would be (quote) "unacceptable".
You may also be interested to know that the Guide was supported financially by the NHS Research and Development Programme, and yet it has created an acknowledged anomaly with the full International Statistical Classification of Diseases and related Health Problems (ICD-10), as confirmed in writing by Steven Harrison, Head of Corporate Affairs and Governance at the NHS Information Authority, even though, adherence to the World Health Organisation ICD-10 classification of diseases is mandatory in the UK. It is this anomaly the NHS has been trying to clarify with Professor Jenkins since May of this year when it was brought to light that the Mental Health Minimum Data Set (MHMDS) Data Manual, found on the NHSIA website has also been misclassifying CFS as a mental disorder due to having used the Guide as reference. This manual can be read at :- http://www.nhsia.nhs.uk/mentalhealth/dataset/documents/datamanV2.doc
As my MP, and as a member of the All Party Parliamentary Group on ME, I urge you to take action on this matter before the imminent publication of the 2nd edition of the Guide. You will appreciate that in order to avoid the perpetuation of gravely misleading misinformation in the forthcoming 2nd edition of the Guide which is understood to be due around December, and to which the Department of Health has contributed £60,000, this important matter must be addressed as a priority. I therefore ask if you will pursue this request for clarification at the highest level, including the Chief Medical Officer, Professor Sir Liam Donaldson; Tony Wright MP, Chair of the All Party Parliamentary Group on ME; Professor Rachel Jenkins, Director of the WHO Collaborating Centre for Mental Health Research and Training at the Institute of Psychiatry; and Steven Harrison, Head of Corporate Affairs and Governance at the NHS Information Authority.
It would seem that this wrongful classification has in fact misinformed many medical/health professionals and departments up and down the country, and at the expense of sufferers, particularly the severely affected I might add. I say this because whilst funding is being provided for services and research, it is all being directed at psychological interventions, aka 'CFS services' and 'illness management'; entities which are both ineffective and inappropriate to the vast majority with ME and do not get to the heart of the problem. Not a single penny has been spent on investigating the underlying physical causes of ME. The bottom line is that, today, the government isn't funding any of these areas. It is 5 years since the CMO Group was formed; 20 months since it reported; but nothing has essentially changed as far as people with ME are concerned. I never had any faith in the CMO/MRC processes. I don't believe the types of treatment these reports recommend i.e. Graded Exercise/Cognitive Behavioural Therapy/Pacing-regimes (GE/CBT/Pacing) to be in the general interests of people with ME, and have often proven harmful. These processes were essentially smoke-screens - devices to deflect attention away from what primarily needs doing: getting public funding into ME Research, i.e. epidemiology, aetiology, and pathogenesis.
One such organisation mislead by this wrongful classification is our own GP training course held in Swansea. The Swansea MRCGP Course is the UK's largest preparatory course for the Membership examination of the Royal College of General Practitioners, and who (along with the Local Health Board) have chose not to answer emails from myself informing them of this wrongful classification, but instead continue to misinform doctors and other health workers into believing CFS-ME is a psychiatric disorder. See :- http://www.swansea-mrcgp.co.uk/
The Benefits Agency doctors (or EMPs) also appear to have been grossly misinformed, as I have been required to attend a Personal Capacity Assessment for Incapacity Benefit where ALL my physical symptoms were completely ignored, and I was subsequently judged fit for work, even though I can barely function some days and my physical symptoms are well documented and have been confirmed by a neurologist and gastroenterologist at Morriston Hospital. (I am also currently waiting for a MRI scan on my knees.) As a consequence of this 20 minute assessment, and more importantly the benefits agency doctors apparent ignorance, I have had all my benefits stopped and have therefore been without any money whatsoever for the last 7 weeks. As a direct consequence of this completely unnecessary benefits fiasco I am about to have my electricity and gas cut off, as I am unable to offer them any payment. I have also occurred other serious debt, the combined stress of which is having a detrimental effect on my health.
I do have the chance to appeal against this latest decision but I will be required to survive on a reduced level of Income Support of £43 per week (as appose to £87 per week Incapacity Benefit ) until such an appeal - which I am told may take over a year to come about. Judging from a recent experience where I have tried to appeal a Housing/Council Tax Benefit decision I have absolutely no confidence in the appeals system whatsoever. I am also both physically and mentally exhausted from jumping through hoops for the benefits agency for the last 4 months only to turned down at the end of it all, and with utter contempt it would seem. In fact since I contacted you back in July I have experienced a comedy of errors that is quite hard to believe, e.g. I had to reapply for Housing/Council Tax Benefit, only to be told they never received my application. I sent a second application via my Local District Housing Office (for proof of receipt) which I eventually had to appeal against and ask for backdating, but unfortunately with no success. I now have to pay a couple of hundred pound in rent and council tax areas as I have been deemed ineligible for Housing/Council Tax Benefit, even though my situation has not really changed for the last 3 years since being diagnosed, and, to make thing even more difficult for me I have now had my benefit entitlement halved.
Thankfully, a very helpful Local Authority Housing Officer from the Morriston District Housing Office, called Mark Davies has witnessed correspondence I have sent to Housing/Council Tax Benefits department that has been completely ignored, and then I have even been chastised by that same department for allegedly not contacting them, which in turn required me to appeal and ask for backdating of benefit but to no avail. Indeed, all that could go wrong with my 4 month fight with the various benefits agency departments has gone wrong. Mark Davies has witnessed this benefits nightmare, he can be contacted on :- Mark.Davies1@swansea.gov.uk
I can only assume that, either I am the unluckiest person in the whole country who has somehow managed to find all the incompetents working for various government department, or other sufferers are going through the same. Or perhaps I have quite simply been knobbled for making political waves via yourself; Tony Wright MP (Chair of the APPG); and via the British Medical Journal online rapid response where I have openly criticised Wessely et al on several occasions. For example - ref. the BMJ :- http://bmj.bmjjournals.com/cgi/eletters/327/7416/654?ck=nck#36877 Am I the only one suffering this bizarre and extremely stressful encounter with the 'Welfare State', or is it rife do you think ? I'll let you decide. Either way, I desperately need your help with sorting this matter out with the benefits agency once and for all. I honestly can not keep this up much longer without a worsening of my symptoms. What I am experiencing is tantamount to abuse. I am at the end of my tether.
Besides the effect this needless aggravation and subsequent stress is having on my health, I simply cannot afford to live on £43 per week for the next year or so, just because some doctor working for the benefits agency has been grossly misinformed about the nature of my illness - even though I showed him a letter from my GP confirming my symptoms. For example, apart from other heath problems, it has now been confirmed by colonoscopy by Mr T Brown, Consultant Surgeon in Morriston Hospital (and in writing from my GP) that I have an "Indeterminate Colitis which is mildly active involving the entire colon", i.e. "bleeding and inflammation of the colon with a large presence of mucus" which obviously causes me some continence problems. In fact I have until recently been receiving Disability Living Allowance because of this very problem, but have not been able to find the time or necessary help to reapply for DLA because I have been so busy trying to claim basic entitlements for the last 4 months, yet the Benefits Agency doctor (EMP) has declared in his report "there is no evidence of any condition that would cause continence problems". He has also (rather disturbingly) requested an IB113, that is normally required for people suffering severe mental illness - should I dare appeal his decision, therefore rendering me somewhat 'snookered' - as this will of course remain in my medical records. The problem I have with this is that is, if a doctor is mislead into thinking CFS-ME is a mental illness (as so many obviously are), then any physical symptoms presented will be regarded purely as psychosomatic, regardless of the facts...
Please can you intervene in this dreadful situation ? How on earth can these doctors be allowed to get away with this type of conduct ? This is not the first time I have experienced ignorant and contemptuous EMP's. My first experience was with a doctor sent out to assess me for DLA, which ended in me being invited to the House of Lords by Baroness Marsham of Ilton, President of DIAL UK, in their 'A Bitter Pill' campaign to give my account of the "unacceptable shortcomings in the conduct and attitude of these (SEMA) doctors", before a committee concerned with renewing the contract of Medical Services to the Benefits Agency. I would be more than happy to do the same given the opportunity.
I realise only to well that CFS-ME is a political hot potato with massive implication to the Chemical/Pharmaceutical Industry - this of course is because of its possible aetiology (e.g. vaccines and chemical exposure). Not forgetting the huge cost implications to the Insurance Industry. For further information on this see :- http://www.meactionuk.org.uk/UNUMProvident_Sharpe_and_CBT.htm and :- http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm I also realise the obvious overlap with Gulf War Syndrome may have an effect on how CFS-ME is officially classified, especially as the infamous Prof. Wessely is not only an advisor to the government, but also the Ministry of Defence and indeed NATO (whilst his wife, psychiatrist Dr Clare Garada, is a senior policy advisor to the Department of Health), and of course Prof. Wessely is heavily involved in CFS-ME and GWS.
I note the question you previously asked Mr Spellar, ref: Pooling of data in relation to GWS - "To what extent is that a matter not for individual Governments, but for NATO itself to lead?" ..and the key part of the response that followed: "Urgent discussions are taking place between NATO members to ascertain each country's position. The prime responsibility for delivering programmes at the sharp end will lie with national Governments. However, it is appropriate for discussions to take place at a NATO level to try to co-ordinate them." i.e. before any compensation payments are considered for the surviving Gulf war vets affected. Taken from :- http://www.parliament.the-stationery-office.co.uk/pa/cm200001/cmhansrd/vo010109/debtext/10109-08.htm This begs the question; How can the UK officially acknowledge CFS-ME as a distinct physical illness, and not GWS at the same time when they are virtually (if not exactly) the same illness ?
My GP has told me my illness is the same as GWS, as has a consultant at Morriston Hospital, who was so convinced he even asked me how long did I serve in the Gulf. Apparently he said he though he read it on my medical notes ? This being the same consultant who (for whatever reason) re-informed me (some months after my original diagnosis, and yet without examining me further) that my inflamed colon was to be referred to as Irritable Bowel Syndrome (a mental health problem), apparently using a diagnosis of exclusion. Even though: "Colitis is an inflammation of the colon, whereas in IBS, the colon is not inflamed" See :- http://www.nhsdirect.nhs.uk/en.asp?TopicID=270
Please read: 'OBFUSCATION, PREVARICATION - AND LIES', (quote) "The financial implications in terms of pensions and compensation for which governments and business could be called to account are massive. Every subterfuge: legislation, confiscated or missing private and official records, the Official Secrets Act, the "D Notice" mechanism forbidding public disclosure and legal gymnastics, has been employed. A key to this manipulation and deception has been to attribute physical effects to mental disorders. This cannot, of course, explain away serious physical disabilities, a mounting death rate or widespread birth and associated physical abnormalities. It does explain the significant lack of publicity!" Taken from :- http://www.alor.org/Britain/OnTargetBritainJune2003.htm ..and, "Victims of chemical/radiological poisoning are referred to the psychiatrist because the National Poisons Unit has stated “pollution does not exist"..."Genes in Gulf War veterans have been found with fragmented, reshuffled genes of chromosome 22Q11.2, which is required in antibody production. This gene damage can result from viruses or other cell stress from chemicals (like low doses of arsenic activating viruses), as found in ME & CFS. Mycoplasma has been found to cause punctate lesions in the left frontal lobe of the brain. Mycoplasma feeds on sterols in cells including red blood cells. The red blood cells then swell leading to poor circulation resulting in aches, pain and weakness. Chronic Fatigue Syndrome victims have revealed various biological markers including higher atypical lymphocytes, circulating immune complexes, raised IgG, novel low molecular weight 2-5A-binding protein, sleep changes, low folate, reduced bowel bifidobacteria and e-coli, neuroendocrine dysfunction (with low cortisol, low CRH and low ACTH,) & involvement of a chemical, or virus such as Epstein-Barr, Lyme Disease, Q-Fever, Parvovirus or HHV-6 (herpes) found in the most affected patients." :- http://www.countrydoctor.co.uk/precis/precis%20-%20pollution.htm
I would also like to know why Tony Wright MP has only invited those parties supportive of the CMO/MRC processes to recent APPG meetings ? He is aware that others (who represent the large majority with ME) have been critical of these processes, and that they have condemned what they stand for - notably, GE/CBT/Pacing. By denying them a voice he is effectively suppressing free speech and democracy. A case in point has been the 2002 Research into ME (RiME) Petition. Mr Wright said in 1999 it was important to him that those who suffer with ME and those who campaign on their behalf have their voices heard (Jan 1) and that it is up to each group to put forward submissions to the APPG for consideration (Feb 24). When RiME asked that their 16,114 Petition (calling for research into the physical causes of ME) be featured at an APPG meeting, he refused. He appears to be saying now it was refused on the grounds RiME asked. Is this a fair and objective way to run a Group ? Could you also please look into this ? You could also help by campaigning to get proper research into ME; i.e. epidemiology, aetiology, and pathogenesis; and by challenging what is currently being offered as an alternative to proper research - ref: so-called 'interventions' (GE/CBT/Pacing).
I am also very concerned ref. the role of the secretariat to the APPG. This role is performed by Action for ME (AfME). Mr Wright said that the role of the secretariat was purely administrative (24/2/99) and that two AfME officials were allowed to attend each meeting: one to take minutes, the other to observe only (22/11/02). Why then did he sit there and allow Chris Clark, Director of AfME, to make policy statements at the May 2003 meeting ? (Policy statements which endorsed the MRC Report on 'CFS-ME'.) Would you also look into this please ? I grew up thinking I lived in a representative democracy. I'm not so sure nowadays. It seems that policy is made and implemented by a few at the centre (the cabinet and senior civil servants) and that most MPs simply toe the line. Unfortunately many seem more concerned with promoting government policy than representing their own constituents.
As you see, I have a pretty good understanding of the political implications connected to CFS-ME, GWS (and indeed Autism, which my sister's son suffers from) and would therefore appreciate a frank response if at all possible. You may remember my Grandparents John and Vicky Lynch from Crwys Terrace, who, needles to say, (up until they both passed away a few years back) always had the utmost respect for you right throughout you extensive career as a Labour MP for Swansea East. I seem to have developed similar traits from both of them. e.g. my fight for entitlement that my Grandfather went through (albeit his was for a War Pension), and the determination to see it through no matter what, inherited from my Grandmother, and like them both, I too have always voted for you as my elected representative.
Will you help me with this benefits fiasco - brought about by the wrongful classification in the WHO Guide to Mental Health in Primary Care, and will you help the thousands of sufferers whose lives are being blighted by the somewhat perverted and unwanted efforts of Prof. Simon Wessely in his endeavour to reclassify CFS-ME as a mental illness - regardless of the facts ? Some of this has already been highlighted back in April 2002 by the noble Countess of Mar (herself a ME sufferer) when she rose to ask Her Majesty's Government what is their response to the report to the Chief Medical Officer of an independent working group on CFS-ME, January 2002. See :- http://www.parliament.the-stationery-office.co.uk/pa/ld199900/ldhansrd/pdvn/lds02/text/20416-19.htm (quote) "Simon Wessely has been relentless in his proposition that ME does not exist...As Nero fiddled while Rome burned, so the Wessely school fiddles the facts while people suffer and die...Children are removed from loving families and made wards of court and severe gagging orders are placed on parents."
Please help as much as you can ?
[Please Note: This letter has been CC'd to Andrew Davies, Swansea Labour AM - my Ethics Tutor, Swansea Collage, Access to Social Welfare 1996/97 ; Tony Write MP; Laura Jones, fellow sufferer and campaigner also from Swansea ; MEActionUK ;The 25% M.E. Group ; The Welsh Association of ME & CFS Support ; Swansea Benefit Enquiry Team ; Mark Davies, Morriston District Housing Office ; Swansea MRCGP Course ; Swansea Local Health Board ; The Editor of the South Wales Evening Post ; The Western Mail ; The Times ; Observer ; New Statesman ; Guardian ; Mail on Sunday ; Editor of Private Eye magazine ; The Mark Thomas Product ; and BBC Panorama.]
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