Dr. Bateman answers IOM questions from the community: Part 1
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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. urbantravels

    urbantravels disjecta membra

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    Hi, johnwfalk! I did just post to the Huffpo. The word count constraints meant I couldn't make all my points - explaining what "pacing" means in general usage versus the kind of "evil pacing" specially invented for the PACE trial would just have taken way too many words. But I hope I got across the main point - that the kind of "CBT" practiced in the PACE trial was really a form of brainwashing to talk people out of the physical reality of their disease.

    There were so many bad, bad headlines and sound bites around the release of the PACE trial that it's just hard to know where to start, from "Psychotherapy And Exercise Reverse Chronic Fatigue Syndrome" to "taking it easy is the worst thing you can do" (i.e., the "evil pacing" wasn't real good for people - hello, it was specifically designed NOT to be.)

    The full text of the official CBT manuals for therapists and for participants in the PACE trials are available for download right here. They spell out in black and white what "disease model" they are using for ME/CFS. For much, much more than you probably ever wanted to know about the PACE trial and its many faults and weirdnesses, see this thread:

    http://forums.aboutmecfs.org/showth...-and-PACE-Trial-Protocol&highlight=pace trial

    I hope you'll stick around a while, there's plenty more to talk about!
     

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  2. Cort

    Cort Phoenix Rising Founder

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    Just saw your post Urbantravels - nice! John's blog has over 60 comments now -many of them really interesting. That's more than two of the featured stories :D. A very nice showcase for CFS. Let's keep them coming! ;)
     
  3. Sean

    Sean Senior Member

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    Knackered?

    As any true Scotsman knows, that is Celtic code for rolling-in-the-gutter, howling-at-the-moon, happily-marry-a-goat drunk.

    ;)
     
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    John, I tried to post but I also had problems. I have sent you a private message through this board. Thank you.

    Tina Tidmore
     
  5. Enid

    Enid Senior Member

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    "Sloppy medical profession" rings bells in these parts too. Either never heard of ME or do not not believe it an illness. Seem to recall a great teacher (medicine) telling his students that much he taught would have to be forgotten as science and discoveries moved forward. Great to see a new advocate on side Cort.
     
  6. Sasha

    Sasha Fine, thank you

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    A genie in a Tam O'Shanter... what were the odds...
     
  7. Sasha

    Sasha Fine, thank you

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    Thanks for coming on the forum, John, and for your article - it is very brave of you to come out publicly and we are in your debt.

    I've just posted a couple of comments about problems with the PACE trial in terms of defining CFS so broadly that who knows who's really in there, and the exclusion of severely ill patients. I agree we should all go to your article (here) and give it lots of traffic and comments. There are some interesting comments on there.
     
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Sean
    lol too tired to even think of doing that :p
    besides my idea of fun's more like a warm night or one with banked fire, sipping 18 year old McCallan-Glenlivet n' snuggling ;)
    (alas whisky I love is of course, insanely frikkin' expensive now, sigh, so I'll make do with a Glaayva hehe)

    Sasha
    och aye! dae ye know ken o' the Clan McKhan? settled in Persia 5,000 years ago! ;)
     
  9. pine108kell

    pine108kell Senior Member

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    I know it is old hat for us, but it is still remarkable to read people actually taking the time to write long comments on the blog suggesting that CFS can be conquered by changing our frame of mind. At least one, who claimed to have CFS, chastising those that are still ill for listening too much to other sick people and not having an open mind to getting well.

    I just cannot imagine what motivates people to write this trash. It is easy to think it is just evil, but I think they must constantly require a sense of superiority. What else?
     
  10. urbantravels

    urbantravels disjecta membra

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    I think you're absolutely right, pine - it's because people need to reassure themselves that they are superior beings and can ward off mysterious diseases by their better-disciplined minds. Or something.

    I call it the Big Fear - for most of human history diseases have killed off huge numbers of us - and people have adopted all kinds of magic charms and spells and attempts at gaining divine favor to avert the plague of the moment. I don't think we've gotten much less superstitious in this so-called rational age; there are still lots of folks around who subscribe to beliefs that "positive thinking" and "right attitudes" can avert disease - and not just the poorly understood diseases like ours. But we're especially vulnerable to this kind of voodoo thinking because the cause of our disease isn't understood, and when you think about it that's the scariest thing of all. People really *need* something to blame us for, so they don't have to contemplate the possibility that what has befallen us could befall anyone.

    I think the vast majority of the comments on the Huffpo have been very positive and really very few that haul out the old "if only you wanted to get better/deal with your psychological issues you could recover" medicine show. I have spoken my mind to one such individual already. As for the people promoting chi energy fields and olive leaf extract and what-not, who always show up to such discussions sooner or later, I think they are highly deserving of being ignored.
     
  11. Cort

    Cort Phoenix Rising Founder

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    167 comments! Still on the Front page of the Health Section - blowing the vast majority of other blogs away :victory:
     
  12. taniaaust1

    taniaaust1

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    Johnwfalk.. thank you for that great article. Well done!

    (I would of commented in the huffington but dont have any accounts at any of those places to sign into it on).
     
  13. Leslie

    Leslie

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    I appreciate any information that gets out there, however, just one comment, Huff Post does not connect to "mainstream" to me. Sorry.
     
  14. WillowJ

    WillowJ Senior Member

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    lol, that's true--Huff Po is a niche market for sure. ;)

    But like you said it's nice to have any outlet for good info about our disease. John Falk has done a brave thing, and many PWME have helped filled the comments section with good information. :thumbsup:
     

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