Responses from the DWP about the Department’s classification of ME/CFS

Quarry House, Leeds

On 18th July 2011 Professor Malcolm Hooper wrote to the Secretary of State at The Department for Work and Pensions (DWP) about an apparent discrepancy between two major Departments of State on the same medical issue, namely the different categorisations of ME/CFS, the Department of Health (DoH) classifying it as a neurological disorder and the DWP classifying it as a mental disorder (  The letter was copied to the Secretary of State for Health.

Whilst no acknowledgement was received from the DWP, on 11th August 2011 a reply was sent on behalf of the Secretary of State for Health, signed by Adam Butler of the DoH Customer Service Centre (reference TO00000632586), which said:

The Department of Health has always relied on the definition set out by the World Health Organization in its International Classification of Diseases (ICD) under ICD Code G93.3, subheading ‘other disorders of the brain’….You suggest that guidance used by decision-makers in the Department for Work and Pensions (DWP) is unsatisfactory.  The DWP’s Health and Benefits Division was responsible for drafting the guidance.  I note you have written directly to the DWP and hope you receive a helpful reply….I hope this clarifies the Department’s position”.

On 28th August 2011 Professor Hooper responded to the letter from the DoH and a copy was sent to the Secretary of State at the DWP ( whom a response had still not been received.

However, it seems that on 27th July 2011 the DWP did send a snailmail letter to Professor Hooper which he did not receive: on 28th September 2011 telephone contact was made directly with the Ministerial Correspondence Manager at the DWP, who kindly emailed a copy of the unsigned letter that was on the DWP’s file.

That letter made no attempt to address the substance of Professor Hooper’s letter; it was sent by someone in the DoH Correspondence Team (refererence TO/11/26695) and it said:

Thank you for your recent correspondence. Government Ministers receive a large volume of correspondence and they are unable to respond personally on every occasion….The Government is looking at a wide variety of issues relating to benefits and pensions.  Ministers believe that reform is necessary in a number of areas, and on 16 February they presented the Welfare Reform Bill to Parliament….Ministers do welcome all views, and I would like to thank you for your comments”.

During the telephone conversation on 28th September 2011 with the Ministerial Correspondence Manager he volunteered that it was not an acceptable response.  When asked for the name of the person who had signed it, the Ministerial Correspondence Manager confirmed that there was no signature, nor was there the person’s printed name, nor the name of a team manager on it, even though the new Permanent Secretary has made it a requirement that all correspondence must bear both the printed name of the signatory and the printed name of the relevant team manager.

In a curious twist, a snailmail letter dated 13th September 2011 was subsequently received by Professor Hooper; it bore an illegible signature, no printed names and a completely different reference (TO/11/32085); the Ministerial Correspondence Manager confirmed that, inexplicably, it was not on the DWP’s tracking system and he could not trace it as it had not been saved into the DWP’s electronic database. 

It was, however, an important letter, so a scanned image was duly sent to the Ministerial Correspondence Manager, who was unable to identify the signatory.

The letter of 13th September 2001 that was missing from the official DWP file referred incorrectly to “Myalgic Encephalitis” and it failed to address key issues in Professor Hooper’s original letter.  It did, however state the following:

“I can confirm that the Department for Work and Pensions does not classify CFS/ME as a mental health disorder”.

That is a useful statement from the DWP and, quoting the reference TO/11/32085, can be cited by those with ME/CFS embroiled in appeals against refusal of their State and/or insurance benefits.

However, the reasoning given for the apparent categorisation of ME/CFS as a mental disorder in the DWP’s Guidance for HMRC appeared to be little more than a face-saving exercise:

The Incapacity Reference Guide has a flag against both CFS and ME to alert the decision maker to the fact that a proportion of people with CFS/ME have mental health symptoms.  The reason why some conditions are flagged as having a mental health component is because people with mental health conditions are recognised as being potentially vulnerable and therefore appropriate safeguards can be put into place during their claim to benefit.  These safeguards include not automatically rejecting their claim to benefit should they fail to return the benefit related questionnaire”.

Professor Hooper found this explanation wholly unsatisfactory and a reply dated 28th September 2011 was sent by email:

It is incontrovertible that the HMRC Incapacity Reference Guide does classify ME/CFS as a mental disorder, so the alleged explanation in the attached letter (the one that is not on your system) is unacceptable, not least because there is no similar asterisk alongside other classified neurological disorders such as multiple sclerosis, sufferers from which might also be ‘vulnerable’ to not returning their benefits-related questionnaire.  I look forward to hearing from you, as this matter is in urgent need of clarification”.

No response was received, so on Monday 10th October 2011 email contact was again made with the Ministerial Correspondence Manager at the DWP: “Professor Hooper was wondering if you had made any progress on this matter?”, to which a reply was sent that same day (under the reference TO/11/26695, not under TO/11/32085): “I’m waiting for policy colleagues to provide the substance of a response.  They should be getting back to me by close today, so hopefully you/Professor Hooper should have a reply by the end of the week”.

Once again, nothing was received by Professor Hooper, so on 28th October 2011 a further reminder was sent by email to the Ministerial Correspondence Manager at the DWP, who responded on 31stOctober 2011 saying that a letter dated 12th October had been sent by snailmail to Professor Hooper (which he once again did not receive). An electronic copy was attached which said:

I undertook to respond further and apologise for the delay in doing so.  I am sorry that we used the wrong name for the condition in the previous letter.  With regard to the classification of CFS/ME, we would like to emphasise that the entitlement to benefit does not depend on the condition itself, the underlying cause or how it is classified, but on the disabling effects of the condition(s) present.  The Department therefore firmly reject the view that the HMRC reference guide classifies ME/CFS as a mental disorder. The flag/asterisk appears against CFS/ME because there is evidence that the majority of people with CFS/ME have symptoms that affect mental function and is a genuine attempt to protect the interests of people with CFS/ME….The reason why no flag is set against MS is because, although associated with depression, there is evidence that the incidence of depression is less than that in CFS/ME.  As explained previously, this ensures people with CFS/ME currently do not have their benefit disallowed should they fail to return their questionnaire and removal of the flag could be seen as a retrograde step”.

For the avoidance of doubt, the DWP is incorrect in stating that incidence of depression is less in MS than in ME:  there is evidence to show that rates of depression are no higher in ME/CFS than in other chronic medical conditions (Shanks MF and Ho‐Yen DO, British Journal of Psychiatry 1995:166:798‐801); indeed, the rates of overall psychiatric disorders in ME/CFS are no higher than general community estimates (Hickie I et al. British Journal of Psychiatry 1990:156:534‐540).

Once again, key issues in Professor Hooper’s letter were simply ignored. There was no acknowledgement of the fact that the WHO classifies ME/CFS as a neurological disorder in ICD-10, nor was there any undertaking that all departments of the DWP (and hence HMRC) would, as Professor Hooper requested, be notified of the requirement to adhere to this mandatory classification.

Asterisks in the HMRC Reference Guide are appended only to disorders that are stated in the Guide to be unequivocal mental disorders including, for instance, alcohol and substance abuse, eating disorders, hysteria, neurasthenia, overdose, paranoia, personality disorder, psychosis and schizophrenia, yet the same list also includes CFS, ME and postviral fatigue syndrome.

Of note is the fact that “memory impairment” and “memory problems” such as may occur after traumatic brain injury or in Alzheimer’s disease are not flagged as mental health disorders yet, following the logic set out in the DWP letters, it is precisely those problems which could cause clients (formerly known as patients) suffering from such memory impairment to fail to return the benefits assessment form within the allotted time-scale, yet the DWP sees no need to safeguard their benefits.

Moreover Atos, the international information technology services company that — using computerised tick-box score-points — works for the DWP in assessing entitlement to State benefits is definitely training its staff that ME/CFS is a mental health disorder (, another issue that was not addressed by the DWP.

Indeed, the DWP Medical Services Training and Development on Chronic Fatigue Syndrome Guidelines are clear: “Most cases of chronic fatigue (sic) are attributable to abnormal illness behaviour….In fact, most patients with CFS will also meet the criteria for a current psychiatric disorder” (

A further point that remains unaddressed by the DWP is that according to Atos’ own guidelines, if there is any neurological problem, such patients must be assessed by a doctor and not by a nurse or a physiotherapist, therefore everyone with a diagnosis of ME/CFS must be assessed by a qualified doctor, otherwise the entitlement assessment could be deemed null and void (

Perhaps the All Party Parliamentary Group on ME (APPGME), or even the two patients’ charities (the ME Association or Action for ME) could take up these unaddressed issues with the DWP – it is, after all, their job to represent the best interests of those with ME/CFS.

They might also wish to point out to the DWP that the Norwegian Government has apologised to patients with ME/CFS for not having provided the necessary and proper health services for them.  The Deputy Director General of the Norwegian Directorate of Health recently made the following statement: “I think that we have not cared for people with ME to a great enough extent.  I think it is correct to say that we have not established proper health care services for these people, and I regret that”  (

It may also be appropriate to bring to the attention of the DWP the fact that Norwegian oncologists are treating Norwegian ME/CFS patients with a widely-used drug for lymphoma and autoimmune disorders and that one of those oncologists is on record affirming that in many patients, ME/CFS is “a very serious and debilitating disease” and that an “autoimmune component is probable” (Co-Cure RES: 31 October 2011). 

Indeed, it was in 1995 that the devastating effects were accurately described at a US Congressional briefing by Professor Mark Loveless, Head of the AIDS and (ME)CFS clinic at Oregon Health Sciences University, who said that an ME/CFS patient “feels effectively the same every day as an AIDS patient feels two weeks before death” – the only difference being that ME/CFS symptoms can go on for decades until ultimately the body gives up the struggle to survive.  As another US researcher has demonstrated, people die from ME/CFS and on average they die 20 years earlier (Causes of Death Among Patients with Chronic Fatigue Syndrome. Jason L et al. Healthcare for Women International: 2006:27:615-626).

This should be compared with the assertions of Wessely School psychiatrists who refer to ME/CFS as a “pseudo-disease” (Occup Med 1997:47:4:217-227) and whose views about ME/CFS have informed UK Government policy, for example:

“The vehemence with which many patients insist that their illness is medical rather than psychiatric has become one of the hallmarks of the condition….Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the “reality” of their condition (and who) are in this sense undeserving of treatment….Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service” (ME. What do we know  — real physical illness or all in the mind? Lecture given in October 1999 by Michael Sharpe, hosted by the University of Strathclyde).

When might people with ME/CFS in the UK expect a similar apology from their Government as received by Norwegians with the same disorder?

20 thoughts on “Responses from the DWP about the Department’s classification of ME/CFS

  1. Angela Mitchell on Facebook says:

    I recall Professor hooper vehemently defending the plight of the Gulf War Veteran’s and has extensive knowledge of ME/CFS from his studies of these ex soldiers who developed these neurological conditions after supposed exposure to toxins during the Gulf War. I trust his expertise explicitly and his quest for ME/CFS to be recognised as a neurological condition is admirable.

  2. Joe Kane on Facebook says:

    Prof Hooper is ace.
    He’s been a constant thorn in the side of the “functional” Simon Wessely School of Pyschiatry.

    The Simon Wessely School of Pyschiatry is the same group of British medical professionals who are largely responsible for the human rights atrocities of the “functional” Work Capability Assessment designed to remove entitlement to sickness and disability welfare benefits and to effectively disappear the chronically sick and disabled.

    The ideas behind the WCA were prototyped and pioneered on ME and ME sufferers by the Wessely School over the past couple of decades. Wessely is also responsible for disappearing Gulf War Syndrome and GWS veterans too.

    These same same psychiatric medics also turn up on the books of the DWP as advisors on welfare reform, and are also on the same DWP committees as Unum and Atos advisors.

    Psychiatrists, of course, know nothing about physical disease and disability so who best then to invent spurious notions about work being good for the sick and disabled, and that many sick and disabled are really just malingering benefit scroungers, and their illness and disability is really just in their own heads.

  3. Joe Kane on Facebook says:

    Just to say, Psychiatrist Wessley disappeared Gulf War Syndrome veterans and their physical disease(s) using roughly the following ruse.

    After a war, all soldiers complain about stuff wrong with them. GWS vets complained a bit more than usual, therefore, statistically speaking their complaints and the fact they are a small group are an anomaly and can therefore be safely discounted as insignificant.

    Given the fact you could also say the same thing about the rest of the population as a whole, that people complain all the time about health problems but that a small group of people complain more than most (ie sick people) therefore nobody in the population is really sick, and those that are can be accounted for as a normal part of a statistical spectrum.

    Needless to say, such mendacious psuedo-medical reasoning was adopted by a British Government department of state, the Ministry of Defence, in order to give it an excuse to withhold MOD pensions from the GWS veterans. Aftre all if the GWS illness is in their heads and isn’t real, as Psychiatrist Wessely claims (as he also claims about ME about ME sufferers too) then there is nothing physically wrong with these ex-soliders and they are just malingerers really.

    I’m sure you’ll see where some of the DWP’s welfare reforms are coming from when you read some of the details of Prof Wesselys’ CV and that of his colleagues in the British NHS psychiatry profession.

  4. Angela Mitchell on Facebook says:

    I have had first hand experience of Wessley and his opinions since the mid nineties when he became the authority on Gulf War Illness (NOT). My ex and I were part of the first get together of the Gulf War Veteran’s.Association. In one instance friends in England were being followed by MI5 and got their homes raided as they tried to gather evidence of the prevalence of Gulf War Illness. That’s how scared the government were (Conservatives yet again) on evidence pointing to a cluster of illness in soldiers during the first Gulf War including ME and CFS.

  5. Joe Kane on Facebook says:

    ME sufferers don’t don’t even use his proper name Angela. They just call him the weasel. Everybody knows who you’re refering to. He’s vile beyond belief. He’s human vermin making a career out of keeping sick patients in pain, suffering and misery. Deliberately scheming ways to deprive them of proper medical research, proper medical treatment, pensions, health insurance and sickness welfare benefits. There’s a special place in hell for him and his fellow medical abusing pyschiatric parasite colleagues .

  6. Joe Kane on Facebook says:

    The struggles of GWS veterans is also the same struggle as ME sufferers are involved in. We’re one and the same.
    XMRV Global Action Fb, for instance, posts many GWS articles up.

    Just in passing, if you haven’t already come across it already Angela, you might find this interesting. It is posted on the same website where many of Prof Hooper’s get published, ME Action UK –

    Observations on Professor Simon Wessely’s evidence to Lord Lloyd’s
    Public Inquiry into Gulf War Illnesses
    Eileen Marshall and Margaret Williams
    28th August 2004's_evidence_to_Lord_Lloyd_Inquiry.htm

  7. Joe Kane on Facebook says:

    Here is an excerpt fom the end of the Eileen Marshall and Margaret Williams article.

    This reads like a condensed version of the the current ESA and WCA welfare reforms – disease and disability denial – blaming the patients – claiming patients are are fit enough to work but don’t want to and just need to be put in the right frame of mind (ie WRAG) – sick patients being denied and demeaned by medical assessment panels stuffed with doctors – on and on and on.

    Excerpt –
    Finally, it seems pertinent to quote briefly from the submission of Professor Malcolm Hooper to the Inquiry in relation to Wessely’s work on Gulf War illnesses:

    “Regrettably I have come to view the whole issue of Gulf War Syndrome / Illness as representing an orchestrated and comprehensive attempt to construct an understanding of Gulf War Syndrome as a psychiatric and psychological dysfunction commonly found in soldiers returning from the battlefield. Official funding has been largely committed to establishing this biopsychosocial model of the illness. The design of (Wessely’s) research studies and the interpretation of the data has been slanted to support this understanding of Gulf War Syndrome”.

    “There is, in my view, no doubt that in many official circles the idea that it is all in the mind is something that has been common currency and it has been encouraged”.

    “Then I look at the work that has come out of the King’s College Unit, the Gulf War Illness Unit, under Professor Wessely. They are just not prepared to engage with all the evidence and this is one of my major criticisms of their work”.

    “What happened to these lads was different from other soldiers in other wars, and the answer is that they were exposed to all these toxins in what I describe as the most toxic war in western military history”.

    ” (Wessely’s) paper is a disgraceful paper, a shameful paper which talks about the prevalence of Gulf War veterans who believe they have Gulf War Syndrome. That is something that I find utterly and totally unacceptable”.

    “This is just telling people ‘You have got a false belief system. We will change it for you and we will put you in the right frame of mind to engage with your illness. Wessely’s name is on that paper, so it is all coming from the same origin”.

    Discussing the reliance upon Wessely’s work by the Medical Assessment Panel, Hooper said in evidence “The Medical Assessment Panel has dismissed and demeaned people over and over again and upset them very much”.

    “ I have asked for registers to be assembled of Gulf War veterans. How many of them have got lymphoma? How many have osteoporosis? There is no record of these conditions. (How many have got) motor neurone disease – we do not know”.

    “The thing I feel most strongly about is that there should be careful clinical investigations of sick Gulf War veterans. That is not being done to anything like the correct extent”.

  8. Angela Mitchell on Facebook says:

    Wessely, in my view, killed a lot of ex soldiers by his off hand nonchalant way, that he is always right. I know many who committed suicide from getting a diagnosis of psychiatric origin from Wessely and his cohorts. Even though they had physical, obvious symptoms to me, their War Pensions were taken away or not given at all. The silent number of men who died not from war but from a jumped up psychiatrist, is one prayer I make on Armistice Day every year as they are never remembered, only made to feel disgraced that they killed themselves. That’s what Wessely is trying yet again, only on a massive scale. Could he be compared as evil, in my opinion, yes, on a par with Hitler…..

  9. Joe Kane on Facebook says:

    That’s so sad Angela.

    The third most common form of death amongst ME sufferers is suicide – they can’t take any more physical suffering and pain, nor the loneliness as their social life shrinks to practically nothing because they are incapacitated by their awful disease, on top of which is the constant establishment denial they have anything physical wrong with them.

    This is what all Britian’s chronically diseased and disabled patients now face as the Wessely School psychiatric nostrums and their biopsychosocial psycho-babble is rolled-out and implemented as public policy, not in the NHS, but in the DWP.

    Just like GWS vets, ME sufferers are given psychaitric diagnosis, called CFS, a psychiatric/psychological malady or condition invented mostly by Wessely. Significantly the only medical trial the DWP has ever given money towards was the recent psychiatric PACE trial study, whose results came out in March, aimed at proving the efficacy of using psychiatric GET-CBT in the treatment ME sufferers. It was a spectacular failure. Needless to say, leading authors of PACE can all be found to be directly or indirectly influential in DWP welfare reforms.

    Basically GET and CBT (Graded Exercise Therapy – Cognitive Behaviour Therapy) can be boiled down to “just get out and exercies” and “cheer up and pull yourself together”. In other words, they are old wives tales and with about as much scientific medical validity.

    You can see how the partially funded DWP psychiatric PACE medical trial translates into how the DWP is now treating the long-term chronically ill, through its WRAG nostrums, and also in the way DWP propaganda claims it is no longer going to leave the long-term ill and disabled to be written off on benefits. The sick and disabled are going to be forced, through DWP intervention, to pull themselves together and forced to motivate themselves, wether they like it or not because, ultimately, its good for them.

  10. Joe Kane on Facebook says:

    Here are a few more articles about our old pals, Unum, the DWP and the biopsychosocial bullshitters of the Wessely School of Psychaitry.

    UNUM Provident, Dr Mike Sharpe and Cognitive Behavioural Therapy: information which the MRC might wish to consider
    by Eileen Marshall and Margaret Williams
    ME Action UK
    12 Apr 2003

    Unum Provident, CBT and ME (again)
    by Eileen Marshall and Margaret Williams
    ME Action UK
    12 Oct 2007

    Prof Malcolm Hooper, Eileen Marshall and Margaret Williams
    ME Action UK
    Sept 2007

  11. bridgetdprice says:

    I have ME, I also have a mental disorder. I can not say I noticed any ‘protective measures’ on behalf of DWP. In fact without the help of the Samaritans and your good selves I would have gone under.

  12. Angela Mitchell on Facebook says:

    I have a few plastic boxes of Gulf War stuff in my loft that go back to the 1990’s. I will look through it and see if there is any evidence we can use against this machine. I thought I had heard the last of Wessley but he has now got more power than I can recall back then.

  13. Angela Mitchell on Facebook says:

    I am even still surprised to see Prof Malcolm Hooper still fighting the machine. We left the fight as the stress got too much and my ex tried to kill himself. We thought we were being followed and were always looking over our shoulders and the raids in England lead to getting out of it as it seemed we were too small to make any difference against MI5 and the government.

  14. Joe Kane on Facebook says:

    Thanks for telling your story Angela.
    Any links to websites and Facebooks etc would be appreciated.

    I don’t know if you noticed but there was this recent piece of good medical news for GWS vets from medics in Hull – just to say the BBC article repeats the Wessely mantra that ME sufferers are subjected to “The syndrome is controversial with many medical experts refusing to accept that it exists” –

    Hull hospital pioneers Gulf War Syndrome treatment
    26 Aug 2011

  15. Angela Mitchell on Facebook says:

    Shaun Rusling was one of our friends from the beginning in your news article, Joe. I am so glad to hear this latest news. There are so many docs, experts, that I can recall who were looking into ME and CFS from here and the States in the 90’s. I will help as much as I can….be in touch when I get down to it.

  16. Joe Kane on Facebook says:

    Below is a recent Westminster parliamentray written question and answer on Gulf War Syndrome vets and war pensions.

    Basically the government couldn’t care less about the health and welfare of GWS vets, given it doesn’t keep proper records or statistics or keep track of them. Just like iytdoes with ME sufferers too. And just like it is now doing with the rest of the chronically sick and disabled patients of Britian after the DWP finds some excuse to deprive them of their entitlement to sickness and disability welfare benefits.

    The Wessely School of psychiatry model is now being rolled out by the DWP and applied to all the chronically diseased and disabled in the UK.

    Armed Forces: Pensions
    House of Lords
    16 Nov 2011

    The Countess of Mar –
    To ask Her Majesty’s Government how many veterans from the armed forces are in receipt of war pensions as a result of their service in the Gulf from 1990-91; and how many of these claimants list the chronic effects of organophosphate poisoning as one of their health conditions.

    Lord Astor of Hever (Parliamentary Under Secretary of State, Defence; Conservative) –
    The information requested is not held centrally and could be only provided at disproportionate cost.

    I can confirm that as at 31 March 2011, there were 4,930 veterans who had been deployed to the Gulf in 1990-91 in receipt of an ongoing war disablement pension. However, it is not possible to identify whether the condition(s) for which they are receiving their awards necessarily relate to their service at that time.

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