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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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Article: CFS Blogger Shows Up on the Biggest Blog Platform of All: the Huffington Post

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 1, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. urbantravels

    urbantravels disjecta membra

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    "Huffington," Cort.
     
  3. Cort

    Cort Phoenix Rising Founder

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    Jeez...I'm really adept at screwing up titles. Thanks
     
  4. Sasha

    Sasha Fine, thank you

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    I like the general tenor of his article but:

    Comments are possible on his article - I hope someone less exhausted and brainfogged than me tonight can tell him why it wasn't a rigorous study and why the article's conclusions about exercise are unjustified beyond a very limited context and positively dangerous for many of us.

    I have just dealt with two physiotherapists in the last two days, both of whom wanted to tell me about "an extremely interesting study on graded exercise therapy and ME" and both of whom I had to stop dead in their tracks and explain the difference between a genuine ME patient and the random grab-bag of tired people in the PACE trial. PACE is going to be a monkey on our backs and the more we can set the record straight in these early days, especially on somewhere like the Huffington Post, the better.

    I'm sorry I'm not well enough now to post coherently on his article - please of course be courteous to him if you do. He's a fellow, very sick PWC and he's doing his best. I just don't think he's aware of some of the detail and the political history of the PACE trial in the UK. On balance, I think his piece is very helpful to our cause.
     
  5. Cort

    Cort Phoenix Rising Founder

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    I know what you're saying. I would say that the thrust of the article is that it is not a way out - that it has in fact failed for him..but agree that some details were missing.
     
  6. Sasha

    Sasha Fine, thank you

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    Thanks - but I think the major detail is that the PACE trial may not have involved a single patient with ME!

    I need my Scotsman... :headache:
     
  7. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    You rang?
    *dances around in kilt, then keels over, knackered* :D
     
  8. Sasha

    Sasha Fine, thank you

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    Wow, that was like calling up a genie!:D
     
  9. Cort

    Cort Phoenix Rising Founder

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    I put this comment in:
     
  10. Sasha

    Sasha Fine, thank you

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    Thanks, Cort - that's really good to see up there.
     
  11. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    [video=youtube;84K6Zvvem-Y]http://www.youtube.com/watch?v=84K6Zvvem-Y[/video]

    ;)
     
  12. CBS

    CBS Senior Member

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    Cort, I thought that your comments were spot on. Now if I could only figure out how to sign into the HuffPo. I've tried with little success. The Klonopin probably isn't helping.

    Again, thanks for the great comment.
     
  13. Cort

    Cort Phoenix Rising Founder

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    Its not easy! You'd think HuffPo would have it down. I accessed through my Facebook site - which required me to add in my email address as well - on the right hand side. They do it a bit differently. thanks!
     
  14. urbantravels

    urbantravels disjecta membra

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    The other main criticism I would make of the piece - which of course I think is overall positive and will reach a HUGE audience - is that his ignorance of the substance of the PACE trial means he doesn't know that the CBT they were studying was the "evil CBT" (I think this is justinreilly's phrase and it seems to me like a good shorthand) - the kind where they tell you it IS all in your head, you need to overcome your fear of movement, etc.

    As I keep saying, not everything that comes in a box labeled "therapy" is the same, or is equally beneficial. (Heck, I don't think there are a lot of people around who know the difference between Cognitive Behavioral Therapy and other forms of therapy, such as the psychodynamic approach. Psychodynamic therapy is the kind that I get. But that's a separate issue.) This writer seems to be referring, NOT to the evil CBT used in the PACE trial, but the even-more-bogus evil "pacing" used in the trial. If you'll recall, that specially cooked-up version of pacing involved telling the patient they would NEVER get better and they just had to stay within their envelope for life - and that this extremely structured version of pacing, driven entirely by inflexible daily routines and not by the state of the patient's own body on a given day, was pretty much the opposite of the kind of "pacing" that many patients do to their benefit. The PACE trial sponsors deliberately invented an evil version of pacing in order to discredit the advocacy of "pacing" by patient groups. Part of the evil was including in the "pacing" therapy TELLING THE PATIENTS THEY WOULD NEVER IMPROVE.

    I have serious, serious questions about the ethics of a lot of this. My personal view is that a very delicate balance needs to be attained between realizing and accepting the limitations that we have on our lives *right now* and for the immediately foreseeable future, and learning to work within those limitations - and NOT giving up hope that things will get better in the future, that we might have better treatments or even a cure available sometime - soon? within our lifetimes? I don't think a therapist coming in and saying either "You're not really sick" OR "You're really sick and you're never going to get better" is beneficial - or ethical. Those are both really bad solutions and neither represents the best of what psychotherapy has to offer for us.
     
  15. Cort

    Cort Phoenix Rising Founder

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    Get your comment into the Huffpost Urban Travels. I didn't know there was any difference between the two until a few days ago. Personally I think you're spot on with the right way to do 'pacing' (My god somehow Dr. White has turned 'pacing' into a problematic area).
     
  16. Cort

    Cort Phoenix Rising Founder

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    As I noted this is a unique opportunity to get CFS some visibility with a talented writer who will be able to draw outside people into the CFS world. I've spoken with John and I can tell you he has a tale to tell and the man can write. Let's get him a hot spot on the Huffington post to tell his tale - let's get comments in there and lets hit up the article.

    Right now there are three featured stories on the Health Page and John's blog has more comments than one of them and it has more comments than any other the other featured blogs (it has 35) Let's blow them out of the frigging water! Let's get him on the Front page of Huff Post! :victory::victory:

    http://www.huffingtonpost.com/john-falk/chronic-fatigue-syndrome-_b_829651.html

    We can do it...
     
  17. johnwfalk

    johnwfalk

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    UrbanTravels - I am the blogger Cort is referring to. I love your post and your criticism of my blog (it's true I was wrong in my interpretation of the CBT). That said, I think it would highly benficial if you coudl paste your blog entry here on the Huffington site. I'd do it but not allowed. And if it meant so much to me I'd imagine it would be of great service to the readers. Best, John Falk
     
  18. johnwfalk

    johnwfalk

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    Thanks Cort.
     
  19. alex3619

    alex3619 Senior Member

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    Hi johnwfalk, congratulations on making a real impact. I intend to start following your blog and start commenting. Lets see if you can generate an even bigger impact with a little more attention from the ME/CFS community.

    I have had traditional CBT therapy and I confirm it is useful for stress management - but no more than that. However, in my opinion any way to reduce stress in CFS is good. The biopsychosocial model has several tenets, but at its core is the assertion that ME/CFS is a psychiatric condition.

    Bye, Alex
     
  20. LaurelW

    LaurelW Senior Member

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    John, thank you so much for your blog. We need to get as much publicity to change public opinion as we can. 99% of the people I talk to are still stuck in the "not a real disease" and "I must have that too" frames of mind. Massively frustrating when you're sick as a dog and can hardly go out of the house. You are doing us a real service and I really appreciate it.
    :victory::thumbsup::balloons:
     

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