Replay Parliamentary debate on ME – 2 February 2011

Today’s debate on ME Research in Westminster Hall. Ian Swales, MP for Redcar, and Minister for Health Care Services Paul Burstow – with interventions from Annette Brooke MP, chairman of the All Party Parliamentary Group on ME, and James Wharton, MP for Stockton South. Mike Hancock MP was in the chair. The debate lasted for 30 minutes.

20 thoughts on “Replay Parliamentary debate on ME – 2 February 2011”

  1. Paul Burstow MP has got the following wrong.

    “Now on this point about defining the condition. The fact is, that until we have a strong clinical evidence base, we have to keep an open mind about whether this is one condition or a number of conditions with similar symptoms, but with different causes. And so the Department does, and will continue, for the time being, to follow the World Health Organisation convention in how we describe and refer to this. And that is, to call it, CFS/ME. That’s the World Health Organisation definition. It’s not a specific term the Department of Health has alighted upon and no one else uses. It’s important that that is understood.”

    This needs correcting.

    The WHO did not create the term CFS/ME, the Department of Health and associated bodies did.

    ICD-10 does not specify whether, in indexing Chronic fatigue syndrome at G93.3, it views the term as a synonym to Postviral fatigue syndrome or to Benign myalgic encephalomyelitis. Nor does ICD-10 specify how it views the relationship between Postviral fatigue syndrome and Benign myalgic encephalomyelitis.

    CFS/ME does not appear anywhere in any WHO literature.

    1. Paul Burstow has clearly misled the Committee regarding the WHO definition and should take urgent steps to publicly correct his error.

      The fact that he made his point so forcefully (about his department’s “innocent” use of what he wrongly claimed to be the WHO definition) , just makes it so much worse.

      However, perhaps the ME Association could use this as an opportunity to call for the Committee to reconvene to hear his correction and apology and get some other MP’s to challenge the other things that he got wrong …… they’ve got plenty to go at.

    2. Just for my benefit JT – rather naive as you know 🙂

      It is NICE that defines ‘the illness’ as CFS/ME – yes?

      So Burstow should have said NICE and not WHO?

      Should have read through the statement they gave him to read and checked his facts then!

      1. It’s the MRC, NICE, Department of Health, NHS that all use CFS/ME. It was created in 2002 in the chief medical officers report.

        The CDC who created CFS have always said CFS is not ME.

        This is on the CDC website right now: “The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.”

        So if the Department of Health or any other publicly funded body, wants to talk about the neurological disease ME/CFS, they have to recognise the neurological and macular signs, which the Oxford definition excludes. This is the definition being used in the PACE, so how can it possibly be applied to people with the neurological disease ME/CFS???

  2. The funding call will focus on one or more of six priority areas identified by the MRC’s CFS/ME Expert Group in consultation with research leaders in related areas and representatives of two major CFS/ME charities:

    • Autonomic dysfunction (malfunction of the nervous system)
    • Cognitive symptoms
    • Fatigue
    • Immune dysregulation (e.g. through viral infection)
    • Pain
    • Sleep disorders

    According to Burstow, it is not Pain, but pain management. How is that about biomedical research into the cause?

  3. Paul Burstow lacked credibility from that point on. It really is poor show that he would come out with something as uninformed as this. I also found his mini-tangent on the ‘stigma’ of mental illness to be out of place – I mean what was his point exactly?! And his round dismissal of XMRV was a little concerning. Also, he is far too cosy with the NICE guidelines. Okay, he did emphasise ME is neurological, that is good, but it was kind of undone by the rest of his speech. As I said on Twitter, ten out of ten to Ian Swales, three out of ten to Paul Burstow. Ian really gets the issues of the illness, Paul – sadly – doesn’t.

    I haven’t watched it again, it’s not working properly at moment, but I’m pretty sure my first response would not change. I truly felt demoralised after the debate – though Ian Swales is a star & I thank him for his efforts to educate his colleagues.

  4. Could not agree more. Burstow has offended a great many people with that disgraceful comment, and should apologise.

    If they accept ME to be neurological and accept that it is categorised to the physical disease manual, not the mental health manual, then why has funding only ever gone on psychosocial research? Why is treatment only on psychosocial therapies with no evidence base?

    Burstow also comments on CBT. But CBT is a talking therapy, that aims to solve problems concerning dysfunctional emotions, behaviors and cognitions. Yet, they accept it is a physical disease. So they are playing games with everyone. CBT has no effect on ME.

    Note:
    This is not to say that people with ME don’t get reactive psychological problems like any of serious disease. Some do. And CBT is not counselling. It is based on the belief that the symptoms are cased by faulty thinking and behaviour, which it cannot be if it is classified as neurological.

    Ian was excellent! Burstow was truly ignorant and incapable of dealing with the very serious issues at hand.

    1. People are not complaining because they have prejudices about mental health conditions, but because the disease is classified as neurological. So why is the Department of Health claiming to recognise this classification, but then not dealing with ME/CFS that way? Burstow is out of order for claiming it is prejudice behind this very important point. I would suggest it is Burstow who may have his own prejudices about ME/CFS, and fails to grasp why it has been placed in a physical category by the WHO.

      Diagnosis is not by exclusion, certain symptoms are required depending on the definition used. Obviously not the Oxford definition (used in the PACE trial) as that excludes people with neurological conditions, and is referring to idiopathic choric fatigue or fatigue of a psychological origin. The latter inclusion would exclude people from the physical category. Therefore the Oxford definition would not be about the disease the Department of Health accepts as neurological.

      Burstow also confuses counselling with CBT, which are totally separate therapies. One for learning to manage a disease, the others that is based on you not having a physical disease. With faulty thinking, thoughts and feelings creating the symptoms. Yes, I know that people are desperately trying to now redefine CBT. But that’s what it is, and it is not counselling. Yes, they are trying to apply CBT to things like MS or AIDS, but not to treat those diseases. They are also not the only options offered to those diseases. Try that on those patients, and see how they will react.

      In one breath Burstow claims there could be multiple causes, and then states that CBT/GET can be used for all. Does he know what he meant to say?

      The majority of doctors will not stray from the NICE guidelines, for fear of being in trouble with the authorities. Thanks for banning tests that show abnormalities and banning treatments that have been shown to work. And what conversation between clinician and patient are you talking about. For most it is we have a clinic, we don’t have a clinic, who have CBT/GET and nothing else. Gee it’s nice to manage symptoms in bed 23hours a day. Wow!

      What is social recovery? What goals, if there are no treatments? How can being in bed 23 hours a day be a recovery? And you don’t prescribe a ‘treatment’. CBT/GET are not ‘treatments’ remember. Again, he insults people by saying they find it offensive. I find his ignorance offensive. Doesn’t he get that there is no way forward without treatments that work.

      The MRC expert group is also made up of people who do not agree nor adhere to the WHO classification of ME/CFS. Who use definitions that exclude those patients. But it’s ok because it’s the MRC that fund that research. Great! Any chance of an investigation into this?

      The only fractions in research are those who say it should not be classified as neurological and those who correctly say it is. The MRC backing the PACE trial is one of the former groups. Clearly this whole section of the speech is to try dismiss those who want biomedical research.

      When you say research is ongoing for XMRV (MRVs) do you mean in the USA. Thought the Department of Health had been mislead about methodologies and PCR. Well, at least more positive studies are on the way. I do wonder who will resign over this fiasco.

      Neurological alliance! Trying to hide us in a basket. If that’s the case how about you give ME/CFS half the funding MS gets in terms of research funding or how about some clinical trials with their treatments. They don’t know what causes MS, but like ME/CFS it is classified as a physical disease.

      PS
      Mental health disorders are biomedical disorders of the brain. But the Government will keep them where they are so that it’s cheap.

      1. Burstow’s comments about patients working with their GPs in order to personalise their care would be great if we were able to get the tests and treatments that we know could benefit us.

        Like many other people, I know full well what needs to be done to investigate my own case in the detail that is necessary to define the illness more clearly.

        However, there is little point in discussing the finer points of immune system dysfunction (or any of the other symptoms) with your GP if he / she isn’t able or willing to order the tests that could reveal the nature of the problem.

        Hence we are stuck in a contrived circle of inaction.

        Fine words and political rhetoric aren’t going to change that – only more biomedical research will.

        1. You are spot on, JT. I think Burstow was trying to *appear* to be saying the right thing in stating ME is neurological, but then a lot of the rest of what he said just really reflected that he is part of the same old, same old claptrap. He simply doesn’t get it, or doesn’t want to get it.

          Social recovery?! Exactly – what the heck is social recovery?! A therapy for shy people?

          Yes, Dionysus, patients working with their GPs is a lovely Utopian vision, but as JT says GPs have their hands tied by NICE. And sadly a lot of GPs remain woefully uneducated about ME (the farcical Gerada training video comes to mind). The 80s were a bleak time to be diagnosed – very hard to access info – but at least my GP – eventually! – referred me to a neurologist specialising in ME.

  5. ps. Just to clarify – I was referring to Burstow’s comment on CFS/ME and WHO…(Tony, any way you can have timestamps on comments, otherwise it gets confusing!).

  6. I’ll try to find a time stamp, NMJ.

    Thursday morning: Still looking. I’ll be speaking to our website tekkie about it in the next couple of days, if cannot do it myself.

  7. Interesting to note that the Minister now acknowledges that there isn’t an adequate clinical evidence base concerning this illness.

    That’s not what NICE claimed when they put together their clinical guidline No.53 and then mounted an outrageous defence of CG53 when they were taken to judicial review.

  8. Maybe – just maybe – someone might on this ocassion actually take the need away from sufferers to respond to Mr Burstows statement.

    I for one couldn’t even keep up with the ‘debate’ let alone make notes or quote paragraphs.

    And I thought a ‘debate’ was about people – more than two perhaps – well… debating!

    Not reading pre-prepared statements….[sigh]

  9. christine standing

    Thursday, 3rd February. 22:04

    I took a look at the Royal College of Psychiatrists website to see if I could find some clarification:

    http://www.rcpsych.ac.uk/mentalhealthinfoforall/problems/sleepproblems/tiredness.aspx

    M.E. and Chronic Fatigue Syndrome

    A small number of people suffer from severe and disabling tiredness that goes on for a long time and for which there is no clear cause. This is called Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS).

    For a diagnosis of CFS, you have to have:
    1. 6 months or more of medically unexplained tiredness that is:
    new – you haven’t always felt like this not associated with continuing effort
    reduces the amount you can do
    not relieved by rest.
    2. 4 or more of the following symptoms:
    sore throat
    tender lymph nodes
    muscle pain
    joint pain
    headache
    unrefreshing sleep
    tiredness after exercise that last more than 24 hours.
    3. No active physical disease or mental disorder that could be responsible for these symptoms. So, before a diagnosis of CFS is made, physical and psychological examinations (and physical investigations) are requited. You will also need an assessment of your mental state.

    Ah, so it’s tiredness and it has no ICD.

  10. HA!

    If anyone is still unsure, here are the main points about the World Health Organisation.

    ME, CFS, and PVFS are all at G93.3 Neurological. But the relationship between the three is not defined, and no where is the UK created term CFS/ME used.

    Fatigue syndrome is at F48.0. That is a mental health disorder.

    The Department of Health claim to recognise G93.3, but the definitions they use in research, through the MRC, and with the NICE guidelines, also include those who meet F48. Therefore they are in breach of the WHO classification system, that says you cannot place a disease in more than two rubrics. Consequently reserach is corrupted and of no quality.

  11. The following is from the Chief Medical Officer’s report 2002:

    http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4064945.pdf

    “Many terms have been used to encompass this condition or clinical entities within
    this disease spectrum. Currently, CFS and ME are classified as distinct illnesses in
    the World Health Organisation’s International Classification of Diseases. In recent
    years, CFS has been the preferred medical term for this disorder, or group of
    disorders, although the large majority of patients’ support organisations use the
    term ME.The term ME has been applied to the syndrome – or, according to some
    interpretations, a subset of it – and is widely used in the community. The Working
    Group is conscious that some patients, especially those who are severely affected,
    consider the use of the name CFS to be unrepresentative of their illness experience.

    The Working Group decided that the most important requirement concerning
    terminology is the need for patients and clinicians to agree a satisfactory term as a
    means of communication. A consensus on definitions and terminology is urgently
    needed. Although a resolution is beyond the scope of this report, discussions are
    underway in the USA with international input, which will, we hope, propose a
    long-term solution acceptable to all parties. While awaiting such a solution, the
    Working Group suggests that the composite term CFS/ME is used as an umbrella
    term and considered as one condition or a spectrum of disease for the purposes of
    this report. This approach is consistent with our original terms of reference and
    ensures as far as possible an inclusive approach to our review.
    Page 5”

    1. Thank you JT.

      I (We) were aware of that.

      As I suggested above – sorry was slowly working my way down – and on other sites and forums – Burstow made a mistake.

      NICE and not WHO!

      I think he was wrong yes but I didn’t take it personally.

      My MP asked me for feedback and it was one point that I made.

      One of the more important I felt was the ever-revolving call for recognition of ‘ME’.

      If the designation now is CFS/ME – whether one likes it or not and personally I couldn’t give a monkeys and don’t see what all the fuss is about – then let them direct research etc. here.

      They can then pigeon-hole each and every one of us once the research has led to better testing and clearer diagnoses.

      Heck you and I JT could even share the same clinical diagnosis!

      Brothers! ‘Ramsey’s Disease’ as ‘Parkinson’s’ and not something represented by two inadequate meaning words or even three if you are labelled CFS.

      1. You have totally missed my point.

        It’s not the term but the definition which I have stated is wrong. NICE and MRC use definitions that exclude neurological diseases or combine them with idiopathic chronic fatigue or fatigue of a psychological origin. That goes against the coding the Department of Health claims to accept, G93.3

        No one will get better testing or clearer diagnosis if they continue to do that.

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