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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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"Disease of the brain, not the mind, has no stigma" (Times, UK) - needs responses

Discussion in 'General ME/CFS News' started by Dolphin, Aug 2, 2011.

  1. Dolphin

    Dolphin Senior Member

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    I've done a quick search of the site and this doesn't seem to have been highlighted.

    Full text at: http://www.meassociation.org.uk/?p=7430

    An annoying article given that it is perfectly legitimate to criticise the Medical Research Council for how it has funded research in the field.

    E-mail: letters@thetimes.co.uk

    Somebody said most of letters today are between 50 and 250 words.

    This is the message one gets back when one submits a letter, for what it's worth:

  2. redo

    redo Senior Member

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    What keep amazing me with the medical world is how little dialogue friendly they are. Thanks for posting.
  3. floydguy

    floydguy Senior Member

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    "We do not open attachments for fear that they may contain a virus."

    And they think we have irrational fears of viruses! Have they not heard of Norton?
  4. eric_s

    eric_s Senior Member

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    While some of the things he says are true, like that there's not enough funding for research, which he even admits, it's just one more piece of spin and propaganda. Maybe it's true that for 2000 years phyisicians did not make the distinction between neurology and psychiatry, but it's also true that in those 2000 years people died from pneumonia, tuberculosis, etc., without much help available. If he wants to go back that's fine, but i rather don't :rolleyes:. It's quite ridiculous he wants to make it look as if the ME/CFS community had a disproportionally strong and present lobby. Basically we don't have any, i don't know the exact situation in the UK, but i guess it's the same like everywhere else.
    The UK's medical system really seems to be rotten to a good degree. That clique of people seems to be present in a lot of places, government institutions, medical journals, newspapers... Still the UK is probably also the country in Europe that produces the best research into ME/CFS (the other countries do almost nothing, it seems), but the bs is largely overshadowing it. As far as possible, i will really just ignore what these people say, not worth reading and getting angry over. It's like pollution... But i realize UK people have to deal with this.
  5. eric_s

    eric_s Senior Member

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    Lol, good one, really. They would take our blood, but not our attachments :D
  6. max

    max *****

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    superb work from Prof Hooper yet again - be even better if the media had the courage to print it so healthy 'subjects' could get the message.

    Eric, ......."As far as possible, i will really just ignore what these people say, not worth reading and getting angry over. It's like pollution... But i realize UK people have to deal with this.

    If the shrinks succeed in silencing our angry refusals to accept their doctrines, then Europe will be next - to quote the present dictatorship, "We're all in it together"

    max
  7. SOC

    SOC Moderator and Senior Member

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    ROTFLMAO!

    Good one, eric!
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I saw this coming. In fact, wouldn't be surprised that this was part of the plan. I do agree with some of his points that much of what is labeled psychiatric is actually neurological, I don't think psychological is. And then there is the "first cause".

    I knew when I saw the "it's not psychiatric, its biomedical" would end up being interpreted as "psychiatric is bad so we don't want it." For every person who has a family member with bi-polar, depression, schizophrenia or other psychiatric illness would take offense, as though ME patients don't want psychiatric because they think psychiatric is for bad people or people who can change themselves. To someone with one of those illnesses or a family member with those illnesses, it is offensive.

    The message, in my mind, should be that UK research is out of step with the biomedical research going on around the world, which either reflects an agenda or ignorance. CBT and GET have been shown to be woefully inadequate. They are looking at this illness with early 20th century ignorance, just as happened with MS and stomach ulcers. So government money is being wasted. They are scientific dinosaurs.

    JMHO

    Tina
  9. Snow Leopard

    Snow Leopard Senior Member

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    I believe what we mean when we say 'not psychiatric', is that it is not a mood/behavioural disorder. I think this is perhaps a point we need to clarify whenever this comes up in the media.
  10. Angela Kennedy

    Angela Kennedy *****

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    He's a professor of neurology and he still tries to conceptually conflate an abstract concept (the mind) associated with the verb of 'thinking', with an organ of the body.

    It's highly conceptually and scientifically sloppy- but he's not alone. A lot of proponents of psychogenic explanations, especially for this illness, are doing it.
  11. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    like Eugenics. Odd how the same kind of compassionless assholes support(ed) these kind of views, isn't it?
    Time for them to be compulsory tested for psychopathy and actual understanding of the Scientific Principle... ;)

  12. Enid

    Enid Senior Member

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    I find the description "disease of the brain" (not mind) quite offensive too - ME the disease affecting many systems including neurological.
  13. Dolphin

    Dolphin Senior Member

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    Somebody said letters should ideally be in quickly to the Times so best not to delay too much if this is your intention.
  14. Daisymay

    Daisymay Senior Member

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    Here is some information on Professor Blakemore's dealings with ME in the past:


    From Corporate Collusion,

    Professor Hooper et al September 2007, p62

    http://www.meactionuk.org.uk/Corporate_Collusion_2.htm


    Concern about the uncritical acceptance of the evidence for the alleged effectiveness of CBT/GET

    News reached the ME/CFS community that Professor Colin Blakemore, CEO of the MRC, regarded all the efforts to halt the PACE trials as water off a ducks back; that he was defending the MRC referees who had approved the PACE trials; that he took the view that CFS/ME was not his concern and that he was simply amused by the situation.

    The Countess of Mar was so concerned at the damaging and destructive influence of the Wessely School that she requested a meeting with Professor Blakemore. This took place at the House of Lords on 20th April 2004 and lasted for two hours. Earl (Freddie) Howe was also present. Both the Countess of Mar and Earl Howe were seasoned debaters in the House of Lords and both were profoundly disturbed at what occurred at that meeting, the outcome of which was fruitless.

    Professor Blakemore was accompanied by Elizabeth Mitchell of the MRC and she did most of the talking. It was apparent that as far as the MRC was concerned, Professor Wessely is greatly revered and what he says about CFS/ME will be accepted. It was also apparent that the MRCs mind had been made up and was firmly closed. There was to be no consideration of the biomedical evidence that proved Wessely et al to be wrong.

    On 10th May 2004, an article called Why wont they believe hes ill by Jerome Burne in The Independent quoted the Countess of Mar: A campaigner who has long opposed the purely psychiatric approach is scathing about the MRC trials. They are a farcical, cynical exercise and a huge waste of money the Countess of Mar said. The article continued: Whatever their findings, says Dr Vance Spence, Senior Research Fellow at the University of Dundee and a leading scientist in the field, they wont tell us anything useful about the best way to treat CFS/ME because they are not properly selecting patients with the disease. There is widespread concern about this .

    In a letter dated 11th May 2005, Professor Blakemore confidently claimed that the PACE trials were peer-reviewed and awarded funding on the basis of the excellence of the science.
  15. Daisymay

    Daisymay Senior Member

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    And some more info on Professor Blakemore's dealings with ME in the past:

    From Magical Medicine,

    Professor Hooper, February 2010, p291

    http://www.meactionuk.org.uk/magical-medicine.pdf


    Professor Colin Blakemore

    Formerly Professorial Fellow at Magdalen College and Waynflete Professor of Physiology at the University of Oxford, between 2003 2007 Professor Blakemore served as Chief Executive of the MRC and is now Professor of Neuroscience at Oxford. He is a Fellow of the Royal Society and the Academy of Medical Sciences, amongst many other prestigious institutions, and has received numerous awards. Together with Simon Wessely, Blakemore works with and for the Science Media Centre and with its sibling organisation Sense about Science.

    Soon after his appointment to the MRC, The Sunday Times published a leaked British Cabinet Office document that suggested Blakemore was deemed unsuitable for inclusion in the New Years Honours List because of his research on animals, whereupon he threatened to resign. He withdrew his intention after expressions of support for him from the Minister for Science, Lord (David) Sainsbury. As of 2007, Blakemore was the only MRC Chief Executive unrecognised by the British honours system. In 2003, a House of Commons Select Committee criticised Blakemore for his heavy handed lobbying of other members of the National Institute for Medical Research taskforce.

    An interview with him on BBC Radio 5 Live broadcast on 22nd February 2005 encapsulated the essence of the iatrogenic problem that for over two decades has compounded the suffering of those affected by ME/CFS in the UK. If Professor Blakemores pronouncements had been about any other officially classified neurological disorder but the one in question, he would surely have been pilloried by the media and the public.

    In the interview, Blakemore was asked why, after several years of promises, the Medical Research Council has so far failed to fund any biological research into the physiological issues surrounding ME/Chronic Fatigue Syndrome that is recognised by the World Health Organisation as being a disease of neurological origin? Thus far the MRC has been seen to do not a lot more than perpetuate the status quo of funding psychological interventions (that) do not address neurological, cardiological, immunological and other abnormalities highlighted in international research that so far has been ignored in the United Kingdom.

    In response, Blakemore said: I think to concentrate on this question of whether ME is thought to be a neurological or a psychological condition actually isnt going to get us far --- I mean, compare the situation with depression: depression is a brain condition but depression can be treated both by psychological approaches and by drugs, so I dont think we should look down our noses at psychological treatments. We accept that this is a real disease (but) we dont understand its basis. We need high quality proposals I think everyone would agree that they wouldnt want taxpayers money wasted on bad science however important the cause (Co-Cure ACT: Transcript of Radio 5 Live 23rd February 2005).

    In his justification of the MRCs position, Blakemore used the analogy of depression, but if he had used Parkinsons Disease or multiple sclerosis, the analogy does not work. Perhaps without realising it, Blakemore articulated that the MRC does not recognise ME as a proper neurological disorder.
    Blakemores assertion that there is no need to worry about whether or not the disorder is either psychological or neurological would seem not to be in accordance with the rigorous approach that is necessary for progress to be made in medical science. Did he really see no need to search vigorously for the cause of ME? If so, why does such an approach relate only to ME and not to all illnesses whose cause is as yet unknown, including cancer, multiple sclerosis and lupus? What is the purpose of the MRC if not to conduct research into illness that will provide understanding of (and result in treatment for) a disease?

    Certainly no-one wants taxpayers money wasted on bad science, yet that is exactly what many people believe is happening with the PACE Trial. In its magazine ME Essential (February 2005), the ME Associations Medical Advisor wrote: Now some bad news. The MRC made it clear that priority should be given to funding further behavioural interventions. The ME Association believes that the MRC research strategy is seriously flawed and has called for money to be spent on looking at the underlying physical causes of ME/CFS.

    The ME Association has been adamant that the PACE and FINE trials should be halted and on 22nd May 2004 posted the following on its website (which was printed in its magazine ME Essential in July 2004):

    The MEA calls for an immediate stop to the PACE and FINE trials
    A number of criticisms concerning the overall value of the PACE trial and the way in which it is going to be carried out have been made by the ME/CFS community. The ME Association believes that many of these criticisms are valid. We believe that the money being allocated to the PACE trial is a scandalous way of prioritising the very limited research funding that the MRC have decided to make available for ME/CFS, especially when no money whatsoever has so far been awarded for research into the underlying physical cause of the illness. We therefore believe that work on this trial should be brought to an immediate close and that the money should be held in reserve for research that is likely to be of real benefit to people with ME/CFS. We share the concerns being expressed relating to informed consent, particularly in relation to patients who are selected to take part in graded exercise therapy. The Chief Medical Officers Report (section 4.4.2.1) noted that 50% of ME/CFS patients reported that graded exercise therapy had made their condition worse, and we therefore believe that anyone volunteering to undertake graded exercise therapy must be made aware of these findings.

    The ME Association additionally called for all further work on the FINE trial to be halted, saying the MEA is not convinced by the evidence so far put forward in support of this approach.

    Blakemore, however, was unmoved. By letter dated 11th May 2005, he wrote to an independent ME researcher about the PACE and FINE Trials: I reiterate that the trials were peer reviewed and awarded funding on the basis of the excellence of the science."
  16. Enid

    Enid Senior Member

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    Thanks for bringing all the Prof Hooper and Margaret Williams information in here daisymay - it's good to see handily in one place.
  17. Dolphin

    Dolphin Senior Member

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    5 letters were published today: http://www.meassociation.org.uk/?p=7502 .
    Well done and thanks to everyone who wrote in - it can help encourage them to publish letters if they get quite a lot of messages.
  18. Enid

    Enid Senior Member

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    Going through all said and "Magical Medicine" I'm reminded of a description of SW as active in research into the borders between medicine and psychiatry - and PACE (supported by Blakemore) seems to fall into this category (CBT). Disease of the brain not of the mind carries no stigma seems to attempt to shift their position from "incorrect thinking" to a physical cause - brain disease. But ME is a multi-system disease in which neurological problems are just one. Sounds like a sop.

    From someone with a brain disease !
  19. valentinelynx

    valentinelynx Senior Member

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    Did you know...

    ...that the same Board covers both psychiatry and neurology in the U.S.? The American Board of Psychiatry and Neurology. Which means that in order to be "board certified" in either psychiatry or neurology in the U.S., you have to take the same exam. Which ought to mean that psychiatrists are well versed in neurology. I find this mingling of specialties curious, however, because in practice they are typically far far apart. Most likely, most psychiatrists cram the neurology stuff for the exam and then "mind flush" it, as they rarely actually use it. And, I'm sure that's the case for neurologists, who for the most part likely think the need to know the psych stuff is a ridiculous irritation. Too much of psychiatry is still gobbledygook leftover from the era of Freudian fantasy. Which is why, despite a personal interest I have in the mind, I could not specialize in psychiatry. Besides which, it would be too frustrating to try to help people with mental illness in a society that does not believe mental illness is worth treating (for example, minimal to no insurance coverage for mental illness).

    I have no idea how the specialties are structured in the U.K.
  20. Min

    Min Senior Member

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