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Peter White/Barts - comments on draft NICE guidelines - insight into their views

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Dec 15, 2009.

  1. Angela Kennedy

    Angela Kennedy *****

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    But you have been writing as if you DON'T understand this- conflating CRITICS of psychogenic explanations with PROPONENTS of psychogenic explanations. This is important, because of the way some of you are trying to trivialise and attack the fact that people on these forums are engaging in important critical analysis of a whole edifice (psychogenic explanations and related psychobabble), that won't go away just because you or others advocate putting the community's fingers in their ears and singing 'lalala' as the only way to deal with it!
  2. Angela Kennedy

    Angela Kennedy *****

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    I've checked my facts plenty thank you. You make the same points over and over again. In fact, by your logic, Margaret Williams' analysis of the words of the psychiatrists is itself engaging with the psychiatrists and to be stopped immediately!

    Check your logic, please. Because it matters that you understand what you are advocating, and its potentially catastrophic implications for this community (ignorance is best. Treat psychogenic explanation proponents like naughty children and ignore them, and they'll go away).
  3. Angela Kennedy

    Angela Kennedy *****

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    Including me dear, by critiquing psychogenic explanations for ME, rather like Margaret Williams does! I think you might be understanding me now...

    I'm posting this comment by biophile from another thread, who makes some extremely salient points (thank you biophile), in the hope that the issues will become clearer if they haven't already:

  4. Angela Kennedy

    Angela Kennedy *****

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    I'm sorry Enid, but you have got the wrong end of the stick. Ignore me if you like, but YOUR level of entrenched ignorance has caused a lot of problems here, especially for me.
  5. Angela Kennedy

    Angela Kennedy *****

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    Look, i don't want to play some silly game of tit-for-tat with you. I've actually tried initially to gently get you to understand that you might have the wrong end of the stick here. That didn't work, sadly. I'm shocked at your level of petulance and entrenched determination to misunderstanding. I know people disagree on these forums, and often it doesn't matter too much: but your inability to understand the issues here is, especially as shared by others, a potential disaster for the whole community, and is causing terrible trouble for me and the work I've been doing for ME/CFS advocacy for years. I don't want to be arguing the toss here- but I have no other option it would seem (apart from letting you and others carry on regardless in your determined ignorance, which is just not feasible, sadly.)

    But good grief! 'Have me up for misrepesentation'. What on earth are you talking about?
  6. Enid

    Enid Senior Member

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    You must be thick - you are already talking to converted here - everyone who has ME KNOWS the insidious hold the Psychos have in this illness. Against that we all fight. But you are not willing to understand that or apparently cannot see. This is my last post here - I am tired of your misrepresentation and insulting behaviour and inability to see the obvious.
  7. Angela Kennedy

    Angela Kennedy *****

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    Why have you deleted some of your posts here, Enid?
  8. Dolphin

    Dolphin Senior Member

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    Peter White presentation in Sweden 2009

    Peter White presentation in Sweden 2009

  9. oceanblue

    oceanblue Senior Member

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    Thanks, that's fascinating

    Robust estimate of minimum UK prevalence?
    Interesting. I didn't think the DWP had ever released info the numbert of IB cases of CFS. It certainly puts a floor on the number of CFS cases of 0.3%:
    IB requires minimum recent National Insurance contributions so some working age adults eg school leavers, those who have been unemployed for a while and those not working, but not "officially" unemployed will not be eligible for IB. These "inactive" people of working age include people who stay at home, students without a part-time job and those who retire early. Excluding these people from the working age population would give a higher prevalence rate for CFS.

    ETA: It looks like 20% of the working age population is not unemployted but is economically inactive, and only 28% of these are sick or disabled (see page 35 of this report). This would give an adjusted working age population (excluding the economically inactive who wouldn't qualify for IB if they got ill) of roughly 32 million and a rate of 0.37% of the relevant population on IB because of CFS. Coincidentally, this is the same as the the CMO's Working Group Report on CFS that estimated prevalence of 0.4% (did they have access to similar data?).

    These figures will exclude anyone who has CFS but is able to continue working, even in a part-time capacity.

    The biggest weakness with these figures is that the CFS is presumably self-reported by claimants. On the other hand, getting IB has always ben hard with CFS so it's likely that the vast majority of these cases have a medical diagnosis to back up their claims.

    There again, the true rate is 0% according to Rod Liddle.

    I think that's the first time I've noticed Peter White explicitly use the word biopsychosocial. And interesting to learn that GET is a biological approach.

    B Candy et al, 2004
    Conclusions: A brief intervention at the diagnosis of infectious mononucleosis is acceptable, and may help prevent the development of chronic fatigue. Definitive randomised controlled trials are required to test the intervention.
  10. Dolphin

    Dolphin Senior Member

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    Thanks for analysis, oceanblue.

    These were the first time I had seen IB figures, although had seen DLA figures before. However, I'm not in the UK so not as focused as others might be:
    This seems to me to be a very big gap, especially when one considers that there are economically inactive people who could also qualify for DLA. So it makes me a bit suspicious of the 118,000 figure.
  11. oceanblue

    oceanblue Senior Member

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    Interesting point. DLA has a much higher threshold than IB used to have so I don't think the figures are incompatible, though it is a big gap. I was once assessed for DLA when bedbound and the examining doctor concluded there was nothing wrong with me on the basis of my firm handshake. And I didn't even know I was eligible for DLA for the first 3 years of my illness.
  12. Dolphin

    Dolphin Senior Member

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  13. Marco

    Marco Old blackguard

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    This is essentially the core of the biopsychosocial model of ME/CFS. No physical abnormalities are found (the doctor cannot explain the symptoms), there is (by some accounts) high co-morbidity of depression, ergo self reported symptoms have no physical basis and arise as a consequence of mental distress.

    A classic case of a psychosomatic illness.

    Except 'psychosomatic' as used today is a corruption of the initial intent of those psychiatrists that first described the phenomenon.

    This paper is from the journal Biopsychosocial Medicine :


    Symptoms of somatization as a rapid screening tool for mitochondrial dysfunction in depression


    Far from a multitude of vague and varying symptoms being highly suggestive of a psychosomatic disorder as is often stated as an accepted fact in some quarters, somatic symptoms occurring in conjunction with depression is actually highly suggestive of a mitochondrial disorder.

    The authors suggest that a small subset of questions from the Karolinska Scales of Personality questionnaire can be used to effectively distinguish those patients whose depression, as well as somatic symptoms, are likely to have arisen from a mitochondrial disorder.

    Here are the six KSP questions used as the screening tool :

    If you have co-morbid depression and score two or more of these items as Applies Completely the authors suggest that you are likely to have a mitochondrial disorder.

    http://www.bpsmedicine.com/content/2/1/7


    Perhaps Peter White doesn't subscribe to 'Biopsychosocial Medicine'?
    Dolphin likes this.
  14. oceanblue

    oceanblue Senior Member

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    Thanks. It's interesting, but those samples are small and group membership may not be representative of the wider patient population (I suspect the vast majority are not in local groups, but maybe you have figures).

    There again:

    Looking at total data, there were about 3 million DLA claimants in 2008 compared with maye 2.8 million on IB in 2008. So even if people with CFS find it relatively harder to get DLA (which I suspect is the case), that wouldn't really explain the IB figure being 6x higher than the DLA figure. Do you know if Peter White quoted a source for his figures?
  15. Dolphin

    Dolphin Senior Member

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    I don't know if Peter White quoted a source.

    I agree members of local groups (or patient groups in general) may not be representative - for example, probably have the illness longer, older, more severely affected, etc.
    Also, only a fraction of people with the illness (by whatever estimate) are members of local or national organisations. I remember trying to make some extrapolation from the Shropshire figures - can't remember what I estimated! Think maybe 20,000.

    However, 118,000 seems a very big figure e.g. if look at Nacul et al., 2011 data.
    If it was an official figure, it would be useful to show the scale of the problem because, as you point out, there are various types of people e.g. those working, those ineligible, etc. who can't qualify.
  16. oceanblue

    oceanblue Senior Member

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    Thanks for all this info, it's been very informative.

    It would have been a really useful figure, but I fear that, perhaps not for the first time, PDW presented data that doesn't seem to quite stack up.
  17. Dolphin

    Dolphin Senior Member

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    Great find, Marco. And nice summary. And the biopsychosocial angle is interesting also.

    If you haven't already done so, it might be worth giving it its own thread to both highlight it and have a good discussion.
  18. currer

    currer Senior Member

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    Thanks for finding these figures on IB and DLA.

    When asked, the DOH has always refused to release the figures for people claiming benefit for this illness, saying they do not keep the statistics, which I always thought odd - they only have to count the claimant figures, which are kept by the DWP, and then think a bit.
    I am sure the DWP will tell the DOH the figures, if they ask nicely.

    I expect these figures are well known to the research institutes which study psychosocial medicine - eg the one at Cardiff University http://www.whywaitforever.com/dwpatosbusinessunum.html

    The benefits referred to here have been "reformed" away, but these figures tell us a lot.
    DLA is much harder to get than IB. IB could only be claimed if you have worked and paid stamps for two years prior to claiming, otherwise you get the disability supplement of Income support.

    Most ME sufferers of working age with a work background will get IB. So we can start with 118 000. The sickest of them will also get DLA. But DLA is a very difficult benefit to prove you qualify for, so only the sickest are likely to persist in their claim.

    Children who become ill at school, or young people who become ill at university, (a common time to develop ME) will not qualify for IB, but if VERY ill may get DLA.
    So 118 000 is an underestimate.

    Married women may not qualify for IB nor the retired sufferer.

    Many people with ME continue to work and do not show up on any of these figures.
    Many people with ME who do not work will be getting income support, as they will not qualify for incapacity benefit.

    So maybe 250, 000 sufferers in the UK is about right?

    If so, you realise why the DWP is so anxious to deny our illness, as this is a massive sickness burden in a working age population, and shows how costly ME probably is.

    Instead of agonising about the numbers claiming benefit, and trying to make it impossible for disabled people with chronic disease to claim benefits, our government should research the reasons why chronic conditions are increasing in the population - MS, lupus, ME.

    This is why I am so interested in the retroviral hypothesis, as there has to be some reason for these acquired conditions in previously healthy young people.
    The link above provides a quote to say that the rise in incapacity among the working age population has taken place "since the 1980s", and we know there was a huge rise in the numbers affected by ME in that decade.

    "21. It is known paradox that despite the vast advances in medical treatments in the later half of the 20th century that there is a huge increase in people who are considered too ill to work. This rise in incapacity has taken place from the 1980s onwards and is seen in all developed countries. It cannot be easily explained in medical terms. Clearly the increase in illness is a complex social and psychological problem and definitely not imaginary. The biopsychosocial model of disability not only explains this part of this phenomenon, but also suggest how best to manage it"

    ". The incidence of ME/CFS is rising alarmingly. In order of insurance costs, one of the major medical insurance companies (UNUM Provident) reported in 1993 that ME/CFS came second in the list of the five most expensive chronic conditions, being three places above AIDS. In August 2004 the same company issued a Press Release reporting a 4,000% (four thousand) increase in claims for symptom-based syndromes, including ME/CFS. No other disease category surpassed these rates of increase. UNUM's "CFS Management Plan" states: "UNUM stands to lose millions if we do not move quickly to address this increasing problem". The latest estimate (January 2007) of the economic impact of ME/CFS in the US is between $22-$28.6 billion annually; in Japan it is $10 billion annually."
  19. oceanblue

    oceanblue Senior Member

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    Hi currer,

    I agree with a lot of what you say but the huge difference between DLA and IB is still odd, given that in total there are more DLA claimants than IB ones, which tallies with the figures Dolphin gave for local groups. As I said in one of my posts, I can understand IB CFS claims being substantially higher than DLA CFS claims, but the 6x higher figure does make me suspicious: I think either the DLA or the IB figures cited by Peter White is probably unreliable.
  20. currer

    currer Senior Member

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    You could be right, ocean, it doesnt make much sense to me - except you must remember that DLA is claimed by those WHO WORK WITH A DISABILITY - eg those who are wheelchair bound but otherwise fit.

    Not all DLA claimants are sick, as PWME are sick. If you are born with a disability that impairs your mobility and adds to your living costs you can claim DLA. You may be quite fit, medically apart from lacking a leg!

    Many DLA claimants work full time, and are quite well enough to do so. They claim DLA because of EXTRA costs consequent on living with a disability. This is what DLA was created to compensate for.

    So many disabled people, not only those with sicknesss, claim DLA.

    It is useful to remember the distinction between the fit and unfit disabled. PWME are SICK and disabled in consequence, but many disabled are in fact fit, but physically impaired!

    So Peter White's figures could well be accurate.

    In fact our government no longer wishes to pay the costs associated with disability and is introducing "reform" to reduce the number of benefits available to compensate the disabled for the disadvantages of their disability.

    "We are all in this together" as our prime minister says, unless you are a financier.

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