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The MEA's response to DSM-5

Discussion in 'General ME/CFS News' started by pollycbr125, Apr 21, 2010.

  1. pollycbr125

    pollycbr125 Senior Member

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    hope nobody has already posted this i didnt see a thread so apologies if it has .

    just been on the MEA's facebook page they have posted this in response to the question What is the MEA's response to DSM-5?

    We sent this brief note to the consultation on February 22. It was written Dr Ellen Goudsmit and endorsed by the MEA:

    Due to the paucity of reliable and consistent data, the concept of chronic fatigue syndrome (CFS) should not be included in DSM-5 or a note of caution is required as, at the present time, no scientist can adequately judge whether symptoms are misattributed etc (eg Jason et al, 2005, Lane et al, 2003, McGarry et al 1994, Paul et al 1999). There is more evidence of pathology in subsets and without doing specialist tests, physicians cannot draw firm conclusions.

    Any reference to IBS is similarly unhelpful as the symptoms, like CFS, seem to have a multifactorial aetiology and, in the same way, one cannnot assess misattribution, 'anxiety' as opposed to valid concern, unless one does specialist tests to judge whether the 'anxiety' is justified. Some may have carcinoma of the bowel.

    CBT helps some patients, to a degree. The text re CBT goes beyond the evidence. Effect size statistics re CFS tend to be modest (Jason et al 2007, Price et al 2008).

    Refs:

    Jason, L.A., Corradi, K., Torres-Harding, S., Taylor R.R., & King, C. (2005). Chronic fatigue syndrome: the need for subtypes. Neuropsychology Review, 15, 29-58.

    Jason, LA., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, MG., Donalek, J et al. (2007) Non-pharmacologic interventions for CFS: A randomized trial. Journal of Clinical Psychology in Medical Settings, 14, 275-296.

    Lane, Lane, R.J.M., Soteriou, B.A., Zhang, H., & Archard, L.C. (2003). Enterovirus related metabolic myopathy: a postviral fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 74, 1382-1386.

    McGarry, F., Gow, J., & Behan, P.O. (1994). Enterovirus in the chronic fatigue syndrome. Annals of Internal Medicine, 120, 972-973.

    Paul, L., Wood, L., Behan, W.M.H., & Maclaren, W.M. (1999). Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome. European Journal of Neurology, 6, 63-69.

    Price, JR., Mitchell, E., Tidy, E., & Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews 2008; Issue 2. Art No.: CD001027. DOI: 10.1002/14651858.CD001027.pub2.

    http://www.facebook.com/group.php?gid=68630803256&ref=ts#!/topic.php?uid=68630803256&topic=14504
     
  2. starryeyes

    starryeyes Senior Member

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    And the first and second references are Leonard Jason? Oh my. This doesn't look good to me. :worried:
     
  3. Adam

    Adam

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    The bits I have bolded should not be overlooked.
     
  4. starryeyes

    starryeyes Senior Member

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    Adam, if I was a doctor reading that I would be under the impression that CBT may work for some of my CFS patients.
     
  5. Adam

    Adam

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    Sorry TeeJ. I think I see what you mean. Maybe I misread it. Or maybe its my rather vague post? I thought they were implying that becuase the text went beyond the evidence, they were overstating the case for CBT.

    Either way I expect our wonderful NHS psyche docs will manage to spin the results of any so called CBT evidence to show its supposed efficacy. See my IBS post in symptoms thread for further evidence of the NHS majic medicine approach to syndromes and all things they can't be arsed to treat.
     
  6. pollycbr125

    pollycbr125 Senior Member

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    ill be honest if this is the MEA's response i really dont know why they bothered .not exactly batting down the hatches and fighting our corner is it?
     
  7. valia

    valia Senior Member

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    Typical WET response from MEA they are fighting nothing other than to maintain their own position -
    sitting on the fence.
     
  8. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Hi pollycbr125

    One of the threads on DSM-5 and DSM-5 submissions is here, so might be best to hop over there as the MEA endorsed response has already been posted in that thread along with a number of others:

    http://www.forums.aboutmecfs.org/showthread.php?3062-DSM5-Ticket-back-to-Reevesville&p=72261


    In response to the question "Will you be putting it on the MEA website?"

    (it has been published via MEA Facebook following pressure to publish)

    Tony Britton, MEA Press and PR responded:

    "I don't intend to - I don't think it stands up on its news value or as propaganda."


    Ahem, Mr Britton - transparency, transparency, transparency?

    Neil Riley, Chair MEA Board of Trustees, told me in early March, in response to a request for clarification about whether and when the MEA intended to place a copy of the response by Dr Goudsmit that they are endorsing in the public domain:

    "We had not thought of publishing it and wanted to see what the final proposals for the revision of the DSM categories will be but I can confirm that the main arguement that was put forward was that CFS should be an exclusion."

    and

    "If a future draft mentions CFS, a formal response on behalf of the MEA is justified and will be published in full online."

    I was told in March, by Mr Riley, that a response was submitted on 11 February. This response, we are told, was submitted on 22 February.

    I have sent the following to Tony Britton CCd to the Chair and am waiting for a response:

    -----------------

    21 April

    Dear Tony,

    I note that the MEA has now published, in a Facebook Discussion thread, a copy of a response to the DSM-5 which it says it is endorsing.

    Since I have posted on Co-Cure and on my own sites in relation to the issue of whether the MEA intended submitting a response, could I ask for the following to be clarified, please, since I may need to amend the information already on my sites and I shall need the correct details for when I publish the response on my sites:


    I was told by Neil in March that the MEA had endorsed a response by Ellen Goudsmit that had been submitted of 11 February.

    Ellen Goudsmit posted on MEA Facebook Wall (in a thread that has since been removed) that she had submitted this response in a personal capacity.

    You have now published a response which states that it was:

    a) Submitted on 22 February.

    and

    b) "We sent this brief note to the consultation on February 22. It was written Dr Ellen Goudsmit and endorsed by the MEA"

    Could you clarify, please:

    1] Is this the same response that was submitted by Ellen Goudsmit in a personal capacity on 11 February (which the MEA said it was endorsing) or is it a further response?

    2] Has the response just published been written and submitted by Ellen Goudsmit in a personal capacity, but is being endorsed by the MEA?

    or

    has it been written by Ellen Goudsmit in her capacity as psychological adviser to the MEA and the MEA is endorsing it and has it has been submitted under the name of the MEA or under the name of Ellen Goudsmit?

    or on some other basis?

    3] Is the MEA going to publish this response which they are endorsing on the main MEA website?

    Many thanks,

    Suzy
     
  9. Min

    Min Guest

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    Oh dear,even AFME did more than this - they can hardly be bothered, can they?

    Thanks Suzy, you're doing a good job delving into and reporting on this vitally important matter.

    thanks polly too for posting this
     
  10. Gerwyn

    Gerwyn Guest

    I post this with some trepidation

    Shepherd brought with him different (but perhaps related) problems in that he is, on his own admission, an active member of HealthWatch, an organisation that has received funding from both Big Pharma and the medical insurance industry. Simon Wessely has had connections with HealthWatch since its inception in 1989; soon after the press launch, he was listed as one of its leading campaigners. In its literature, one of its clearly-stated aims is to oppose "diagnoses that are misleading or false, or that may encourage unnecessary treatment for non-existent diseases", and Wessely assiduously teaches that ME is a non-existent disease.

    Despite its vehement denials -- including intimidatory letters sent by its lawyers inexplicably refuting its own literature -- HealthWatch (which started life in 1989 as the Quackbusters Campaign Against Health Fraud) has an indisputable and documented track record of opposing alternative and complementary medicine and of promoting pharmaceutical interventions as the best way of ensuring public protection. It is a matter of record that patients with ME/CFS are unable to tolerate pharmaceutical interventions; given the lack of NHS care apart from psychotherapy, they not unnaturally turn to alternative and complementary practitioners in their efforts to find some relief from their distressing symptoms, so Shepherd's role in the ME Association has been controversial.

    In particular, it is difficult to understand Shepherd's strong opposition to advanced investigations for those with ME, notably nuclear imaging, immunological assays and testing for RNase L and other anti-viral pathways, all of which provide evidence of the biomedical nature of ME/CFS. On 17th July 2001 Shepherd wrote to the Chief Medical Officer confirming his opposition to such testing. People with ME/CFS have incredibly up-regulated interferon production (that is what the RNase activity literature is all about), so on what evidence does Shepherd (a part time private GP) oppose such testing, when internationally acclaimed ME/CFS experts - clinicians and academics alike - support it? In his notes of the ME Alliance meeting held on 20th January 2005, Shepherd wrote: "I'm now going to reorganise what I've written, especially in the 'call for research' section. We decided not to campaign on the issue of finding a diagnostic test".
     
  11. fingers

    fingers Senior Member

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    Simple fingers

    ...as opposed to Simple Simon.

    I apologise in advance for my very simplistic view among you very learned people.

    ME/CFS diagnosis is a black art, not a science.

    Therefore it seems inevitable that there will be a subset of those professionally or self-diagnosed who benefit from psychiatric approaches such as CBT, Lightning Process, or even GET.

    Personally, I don't have a problem with this as long as it is not then inferred that all those with a ME/CFS diagnosis can benefit similarly. If there are people who are "not living a life they love" (if I was Phil Parker's marketing manager I would change this to "Continually Feeling Shit"), and these people can "live a life they love" by doing the LP, CBT, GET etc., then that's wonderful for them.

    So, we can sort out a subset with these approaches, clearly identify the subsets, and move on to help the rest with retroviral research or whatever.

    Sorry, I did say it was simplistic.
     
  12. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    It has always been my understanding that Dr Shepherd did not complete his training to qualify for GP status.
     
  13. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Thank you, Min, but credit where credit's due - although I had been chasing the MEA since early March for (initially) a position statement on whether they intended submitting a response, then a copy of the submission they have endorsed, it was the persistence of another Facebook member who, despite repeated obfuscation, eventually extracted a copy out of the MEA.

    So kudos to him.
     
  14. starryeyes

    starryeyes Senior Member

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    Well put. :tear: I agree with your progonostications. I'll have to check that thread out.

    ME Agenda: That's amazing!
     
  15. starryeyes

    starryeyes Senior Member

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    That's brilliant fingers! And I'm a total believer of KISS - Keep It Simple Stupid :D
     
  16. fingers

    fingers Senior Member

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    Oxymoron

    That's the best one I've ever seen Teej......but :thumbsup:
     
  17. Gerwyn

    Gerwyn Guest

    aha that would explain a great deal
     
  18. fingers

    fingers Senior Member

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    [​IMG] Originally Posted by ME agenda [​IMG]
    It has always been my understanding that Dr Shepherd did not complete his training to qualify for GP status.


    Gerwyn, and by that you imply that he is intelligent, not arrogant, has an open mind, and might actually be worth engaging with?
     
  19. Gerwyn

    Gerwyn Guest

    Judging by his past inputs and my personal experience I would have to say no on all counts
     
  20. Cort

    Cort Phoenix Rising Founder

    Here's the ME Association - which I believe Dr. Shepherd is heavily associated with - Research Agenda

     

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