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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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A modest proposal

Discussion in 'Action Alerts and Advocacy' started by Levi, Mar 2, 2012.

?

What are you thoughts on the "modest proposal"?

Poll closed Apr 1, 2012.
  1. Levi, you are completely insane. Will not work.

    4 vote(s)
    66.7%
  2. Hmmm maybe possible with a few changes to it

    0 vote(s)
    0.0%
  3. Levi, you are inspired. Let's co-opt the psych lobby

    2 vote(s)
    33.3%
  1. Levi

    Levi Senior Member

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    With regard to the FITNET trial results, I have a modest proposal. Its serious, but will sound weird. I am putting up a poll for it. I will make it real short, and we can expand on it if there is interest. Here are the steps:

    1) Poll the top 10 ME/CFS MD doctors in the world based on a separate PR poll to determine the top 12 biomarkers for ME/CFS.

    2) Using those biomarkers, determine a cohort of 100 bonifide ME/CFS patients. A patient for the study will need 3 biomarkers, and a top 10 ME/CFS MD doctor diagnosis for selection.

    3) By random lot select 12 of the ME/CFS patients to be ME/CFS therapists. Train them to approximate the FITNET protocols. Pay them $50/hour for doing online therapy. Assign them a group of ME/CFS patients to do online CBT treatments to ME/CFS patients with similar "dosages" of therapy. Compare the results to FITNET and their controls.

    4) If the results are good, then lobby governmental organizations to require fully funded programs that use only bonifide ME/CFS patients who are well paid by these government programs to perform CBT services for other bonifide ME/CFS patients with a diagnosis and at least 3 biomarkers. Make the services free to these patients, and also offer them for free also to bonafide MS, Parkinson's and cancer patients. Make income from this progam exempt from disability earned income restrictions, at least up to a certain level, in order to encourage work from home and avoid a bureaucratic penalty.

    Or something like that. Point would be to co-opt the "psych lobby" system that is shaping up to milk insurers and taxpayers for large scale online CBT programs, and take the profit motive away from them. My guess is that someone who really "gets" ME/CFS will do a better job of online therapy than some net monkey in a back room following a script. And the ME/CFS patients could use work from home and extra money.
     
  2. Dolphin

    Dolphin Senior Member

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    The FITNET protocol is based on this:

    which can be read here: https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1009C&L=CO-CURE&P=R1774&I=-3

    I think it's a totally inappropriate program for "proper" ME/CFS or ME or whatever name people want to use for a condition that has an abnormal response to exercise.

    So I'm afraid I can't be excited by the idea.
     
    WillowJ likes this.
  3. Calathea

    Calathea Darkness therapy

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    How is this about eating children?!

    The patients wouldn't be qualified, and would be unreliable as workers due to illness. Also, bear in mind that many people totally fail to get Swift's A Modest Proposal, since a lot of people are really bad at detecting irony. My English teacher said that when she taught it in a previous school, half the class were horrified and the other half thought it was a really good idea. None of them spotted that it was a satire.

    However, we may be able to develop this idea into something else, and it's an intriguing place to start thinking.
     
  4. pamb

    pamb Senior Member

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    Edmonton, AB, Canada
    Just replied in the 'you are completely insane' category, but only due to the untrained and unreliable factor trying to use ME/CFS patients to provide support. I very much agree that I am horrified at the thought of they psych's getting a ton of insurance money to do this. I do believe some CBT can help anyone in a chronic situation to cope better but to suggest it can cure somethings like ME/CFS is ridiculous.

    Our only real hope I think is for the research into biomarkers to keep progressing as fast as it is now, so proper diagnosis can be made. All these silly studies get away with their conclusions due to a lack of correct definition - and I believe and pray that will end in the next couple of years. And yes, I am horrified at the thought of yet another 'couple of years' but at least there is very significant progress being made, something those suffering for 30 years have never seen before.
     
  5. Enid

    Enid Senior Member

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    Well I'd say stay happily with completely insane Levi (10 years ago from the psychos UK) - ofen wonder who is more intelectually lacking !!!.
     
  6. Esther12

    Esther12 Senior Member

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    Maybe they were joking and you didn't realise...
     
  7. Calathea

    Calathea Darkness therapy

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    Nope, she wasn't joking. A number of my friends in academia have had the same problem. It's a notorious text for being depressing to teach in that way, just as anyone teaching the Brontes tends to end up depressed at the number of young women who think that Rochester or Heathcliff are their Ideal Man. Don't rely on people to spot irony when it's waved in front of their little noses.
     
    Enid and ahimsa like this.
  8. DaiWelsh

    DaiWelsh

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    Irony on forums is such a fragile wee beastie :D
     
  9. Calathea

    Calathea Darkness therapy

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    Julian Barnes once said, "Irony may be defined as what people miss," but in such a way that I was never quite sure whether he was quoting someone else.

    I rather like "fragile wee beastie", it's a cute phrase.
     
    Enid likes this.
  10. Enid

    Enid Senior Member

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    If they are fragile weebeasties (now I cannot rise too easily) - seems they need help.
     
  11. WillowJ

    WillowJ Senior Member

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    I like the idea of taking away the funding from the (bio)psychosocial school... but we would need our own protocol, not the junk theories by the hostiles. "Think of yourself as an ex-patient" is likely to be damaging to us!

    We need "let's learn to pace ourselves and accept the fact that life is changed; don't put your life on hold while waiting to get better, but hold onto the hope that things will improve and cherish the belief that there is goodness".
     
    Dolphin likes this.

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