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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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Another good article by Sonia Poulton (daily) mailonline

Discussion in 'General ME/CFS News' started by maryb, Sep 20, 2012.

  1. Sasha

    Sasha Fine, thank you

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    Hi Alex - that was me. :)

    I've posted similar comments about that gap in the market on journalists' blogs when the ME story comes up but so far, no one has bitten. These days, I don't think papers have the funding to do proper investigative journalism and just sit at their desks and trawl the internet for five minutes instead. Ironically, the Daily Mail has more resources than most and so other papers often just parrot what they see in the Mail. They can have an influence for good or bad beyond their immediate readership for that reason.
     
    alex3619 and currer like this.
  2. Sasha

    Sasha Fine, thank you

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    My comment and everyone else's sat in moderation for ages and then all appeared at once - I don't think they check often and then do a big batch. Hope all your comments get through!
     
  3. Sasha

    Sasha Fine, thank you

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    A
    Additional comments now up on both the Hanlon and Poulton blog.

    I've only read the new Hanlon ones - there's a very good one by a Peter Wachtel from Oz encouraging him to talk to scientists.
     
  4. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Sasha likes this.
  5. user9876

    user9876 Senior Member

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    There are some hints on her twitter feed. Pretty sure there was another bit but cann't find it now I think it might have been deleted

    Dapper Dan @redfoxcountry
    @SoniaPoulton Simon Wessely? I haven't a clue. Was he having a go?
    Expand

    3h [​IMG] Sonia Poulton@SoniaPoulton
    @redfoxcountry But it was a definitive marker of thorn-in-establisment side impact.

    Hide conversation
     
  6. biophile

    biophile Places I'd rather be.

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    It was also posted by Wildaisy on the other forum:

    http://www.mecfsforums.com/index.php/topic,13497.msg141622.html#msg141622

    How would Wessely even know that GET and the underlying rationale is safe when there has been little if any evidence of compliance or increased activity from patients in clinical trials?

    For a prime example, it seems that GET was relatively safe in the PACE Trial because patients did not really have to increase activity if they did not feel like it, and the threshold for harm was high enough so that even moderate relapses lasting less than 4 weeks were ignored. Also, AFAIK, there was an effort to make sure the patients attended sessions and the therapist kept true to the manuals, but no evidence of compliance in the sense that patients actually increased activity. The dismal walking test scores and lack of returning to gainful employment suggests they did not. Evidence from other CBT trials (which also encourages graded increases in activity) has even refuted objective increases in physical activity, but PACE suspiciously chose to drop actigraphy as an outcome measure.

    At best, it can be said that it is relatively (depending on the threshold for harm) "safe" to gently encourage broadly-defined CFS patients to gradually increase activity but allow them to refuse to do so. After about two decades of hype, there is no convincing evidence to support the claim that graded increases in overall activity is safe for ME/CFS. This is a best case scenario from clinical trials, real world consequences are more grim.
     
    Bob likes this.
  7. currer

    currer Senior Member

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    I thought Wessely claimed to have left the ME field long ago.
     
    Enid, SOC and Glynis Steele like this.
  8. maryb

    maryb iherb code TAK122

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    Sonia quote "I have pointed out to him that I am extremely busy at the moment but I will be back in touch"
    This made my blinking year, how many people around him don't suck up to this very flawed individual.
     
    redrachel76, Min and Valentijn like this.
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    LOL, yes ;) a skilled riposte'!
    But I kind of preffer something far less refined, like, oh....

    "How do you manage to use a phone, with your head so far up your ass?
    Have you learned to use your tongue to dial the numbers?" :p
     
  10. Sasha

    Sasha Fine, thank you

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    Just been having a look at Sonia Poulton's previous blogs on other topics and she's posted recently on a number of disability issues, including sticking the boot into the WCA:

    http://poultonblog.dailymail.co.uk/...up-for-our-sick-and-disabled-mr-miliband.html

    It's interesting that that had 2 comments and she's already up to 124 on her ME post. Michael Hanlon similarly rarely gets comments.

    I think that commenting on blogs when ME is mentioned is important. It encourages journalists (a) to keep tackling the subject and, I hope (b) to tackle it responsibly because they will become aware, if they're not already, that they're talking about real, live people who will engage with them if their facts are wrong.
     
    Bob, currer and SOC like this.

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