1. To read the 'News in Brief' post for w/c 9th Sept then click here.
    Dismiss Notice

CORRESPONDENCE The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al (2019) Sharpe, Goldsmith & Chalder

Discussion in 'PsychoSocial ME/CFS Research' started by Cheshire, Mar 15, 2019.

  1. Three Chord Monty

    Three Chord Monty Established Member (Voting Rights)

    Messages:
    77
    Likes Received:
    651
  2. large donner

    large donner Senior Member (Voting Rights)

    Messages:
    1,011
    Likes Received:
    8,365
    Its laughable that Vogt has to quote tabloid newspapers as his truth linking to the Reuters nonsense whilst just ignoring scientific facts and trying to dispute them with actual evidence.

    Scientist: Why do you believe that?

    Vogt: ITS IN THE BLOODY DAILY MAIL!!
     
    Last edited: Mar 15, 2019
    MEMarge, Alison Orr, Atle and 14 others like this.
  3. Three Chord Monty

    Three Chord Monty Established Member (Voting Rights)

    Messages:
    77
    Likes Received:
    651
    I guess he didn't realize that Laws wasn't the the editor...:emoji_smirk:
     
    Barry, Simone, JohnTheJack and 3 others like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    2,278
    Likes Received:
    18,426
    Location:
    Canada
    I mean, he keeps insisting his research is on CFS and that it's different from ME (then turns around and says it's the same but whatever). Might as well make sure this is understood in the context of guidelines on ME. A primary research insists that it should not apply to ME. This seems relevant when this research is a central pillar to the current guidelines.

    Actually, this merits being taken further. They really do say that. And the opposite. And everything in between. So it's quite critical to settle on what it means, what the NICE guidelines are for, whether it is officially the same (some people say is not a valid argument) and how can research on CFS (though actually idiopathic chronic fatigue) should apply to ME when the researchers insist it is not the same (though it depends when you ask them) and isn't even the defining symptom of ME.

    Because maybe I'm a stickler for the scientific method, but it's really important for science to be consistent. This seems really important for the NICE committee because this thing is all over the place, vague and ambiguous, which are definitely not good traits for clinical guidelines.
     
    Hutan, Barry, Robert 1973 and 18 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    2,278
    Likes Received:
    18,426
    Location:
    Canada
    LOL

    You can just imagine the tinfoil gears working in Vogt's mind, trying to understand if Laws is *gasp* one of them! "Can there possibly be any flaw in this ideological model? No, impossible, inconceivable. It must be the world that is wrong. The model is perfect, a diamond in the rough."

    I wonder if he's seeing ME activists in his room right now. Under the floor? Under the bed? Waiting behind his front door? Maybe we got to the cat and it's just waiting to make him trip and fall!
     
    Atle, Pechius, chrisb and 5 others like this.
  6. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    4,807
    Likes Received:
    31,614
    upload_2019-3-15_22-23-48.png

    And as I always feel obliged to mention ...
    upload_2019-3-15_22-20-41.png

    ... the PACE manuals, which their response emphasises were very thorough, tends to suggest a degree of discrepancy within the PACE camp.
     
    MEMarge, Hutan, Atle and 23 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,352
    Likes Received:
    28,372
    Location:
    UK
    Trudie Chalders account of the history, does not even mention ME, even though 'In the summer of '89...' that is what it was called in the UK.
    'Chronic fatigue syndrome' was barely known and not officially used as a 'replacement' name until 1996 in the UK. The Fukuda diagnostic criteria were not published until 1994.

    This was the diagnostic criteria for a study published in 1990
    "Diagnostic criteria
    The diagnosis of ME was made by a neurologist(LJF) and was based on all of the following
    symptoms being present for over six months (mean duration of illness was 60 months)
    following a febrile illness:
    persistent or relapsing debilitating fatigue, myalgia which increases following exercise,
    poor concentration and memory."
    https://jnnp.bmj.com/content/jnnp/53/3/247.full.pdf

    So what exactly were they researching back then if it wasn't ME (or Post Viral fatigue syndrome)?

    Plus how can we forget this headline:
    "If my team’s research on ME is rejected, the patients will suffer"
    Peter White

    they need to make up their minds and stop constantly trying to rewrite history to justify their actions.
     
    MEMarge, Hutan, Atle and 17 others like this.
  8. Peter

    Peter Senior Member (Voting Rights)

    Messages:
    150
    Likes Received:
    1,191
    Why is he so ravingly mad, this Vogt-guy? Why does this true activist on a crusade for pseudoscience bother so much. At least for a decade now he refuses to discuss any of the obvious problem and flaws at the ME-field, but still is some kind of representative standing up for science? It’s only politics and it harms patients.

    The fact is this guy didn’t manage tinnitus at all for a while. He was lousy, cathastophizing constantly, having a whole lot of wrong illness beliefs. Then he eventually figured it out and got better, learnt to live with this thing that can be annoying but not that much more.

    He himself finally “saw the light”, so to speak. Good for him. Then I would say that ME-patients in general do manage way bigger challenges, have done it for long, but they are still horribly ill. That’s a fact. We can’t solve ME like Vogt solves he’s tinnitus.

    But for weird reasons, he uses he’s completely different personal anecdote to what, I dont know? Push pseudoscience, maybe just for strange personal respons, who knows? Hard to figure out this guy, but he’s clearly a pitty and very angry man.
     
    MEMarge, Alison Orr, Barry and 14 others like this.
  9. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    2,023
    Likes Received:
    13,676
    It's interesting to note that the three authors of that paper quoted were at the National Hospital, Queen Square. Isn't that where SW was.
     
    MEMarge, Barry, ukxmrv and 5 others like this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,352
    Likes Received:
    28,372
    Location:
    UK
    Yes, apparently it was these neurologists who got him into ME in the first place.
    Well known interview:
    https://www.spectator.co.uk/2011/08/mind-the-gap-3/

    eta: note that paper was published three years after Wessely started at the hospital.
     
    Last edited: Mar 16, 2019
    MEMarge, Hutan, Barry and 7 others like this.
  11. Andy

    Andy Committee Member & Outreach

    Messages:
    7,294
    Likes Received:
    53,895
    Location:
    Hampshire, UK
    https://questioning-answers.blogspo...ial-for-chronic-fatigue-syndrome-a-reply.html
     
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,352
    Likes Received:
    28,372
    Location:
    UK
    "Recovery. As per other discussions (see here), most people would characterise recovery as a complete remission of symptoms and/or return to typical functioning. If you're not going to use this description, don't use the word recovery. Use something else instead. Indeed, use 'partial remission' or 'improvement' if you need to but don't call anything less than the complete remission of symptoms 'recovery'."
     
    MEMarge, Barry, Snow Leopard and 20 others like this.
  13. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    969
    Likes Received:
    10,126
    Location:
    Mid-Wales
    MEMarge, Hutan, Robert 1973 and 8 others like this.
  14. Three Chord Monty

    Three Chord Monty Established Member (Voting Rights)

    Messages:
    77
    Likes Received:
    651
    I don't know..."CFS" may not have been well known, but it was only three years from the US CDC Holmes criteria to Sharpe's Oxford criteria. I can't remember where or when but I have heard that either Wessely, people in his orbit, or both, were in touch with Stephen Straus (and perhaps others, say someone like Peter Manu) going back to the late 1980s. I have no idea if there's any documentation on that but it's fairly plausible there was correspondence. Wessely's paper on ME and Neurasthenia (Old wine) was published early 1990, so written some time in 1989, mentions 'chronic fatigue' liberally, and briefly references Holmes. So...I'd doubt that someone like Chalder could plausibly claim that she came into the field with "CFS" established to the point where she wouldn't even mention ME--that's ridiculous. However, while it may have been only in select academic/psych circles, I do think they can claim they were using the term for some 30 years now.
     
    Sean, Sly Saint, Dolphin and 5 others like this.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,352
    Likes Received:
    28,372
    Location:
    UK
    quite.
    Doing a bit more of the transcript and just popped back with this one:
    we don't stand a chance as long as this stuff is being preached to medical students.

    something for the NICE guidelines folk
    @Keela Too @adambeyoncelowe @Jonathan Edwards
     
    Last edited: Mar 16, 2019
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    1,615
    Likes Received:
    8,002
    Here's their paper:

     
    MEMarge, Barry, Robert 1973 and 7 others like this.
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,352
    Likes Received:
    28,372
    Location:
    UK
    Last bit of Chalder for today (still not finished) and very relevant here as it is about the PACE trial.
    note she finally mentions ME but there was no previous explanation of what M.E. is or how it relates to CFS.

    there is more but that's quite enough for me for today.

    eta: that last line by Chalder actually shows their overall intent which goes back to the Gov and Insurance companies being so keen to adopt the BPS model in the first place.
    https://www.s4me.info/threads/government-and-insurance-companies-establishing-the-bps-model.2319/
     
    Last edited: Mar 17, 2019
  18. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    1,692
    Likes Received:
    14,028
    The term CFS was in use in Australia no later than 1988/89, because that was when I was diagnosed. It was also being used in the media here.
     
    MEMarge, Barry, alex3619 and 3 others like this.
  19. Carolyn Wilshire

    Carolyn Wilshire Established Member (Voting Rights)

    Messages:
    82
    Likes Received:
    1,960
    We were actually invited to write a reply to this, which Tom Kindlon and I did. I'm surprised it hasn't come out at the same time as the Sharpe response. This is very distressing, as obviously, its much better to be able to reply at the same time. Hopefully, because the journal is fully online, the reply can be linked as soon as its released.

    There was some confusion about the process we were supposed to follow. We were invited to reply, and send the manuscript to the editor via email, which we did. It was reviewed and we were asked to make a few small changes. I was then told the plan had changed, and the Sharpe piece and our reply would now be published as separate pieces. I was asked to resubmit my reply via the online portal (the usual way to submit a new article). I wonder whether what they meant is that it would also go through the review process - hence the delay?

    I see absolutely no reason why I shouldn't share the reply with you all now. Heres a pdf. As soon as I get a chance, I'll reformat it into a prettier version and update the file here.

    Moderators note: the file can only be accessed by forum members.
     

    Attached Files:

    Last edited by a moderator: Mar 17, 2019
    MEMarge, Alison Orr, lycaena and 53 others like this.
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,352
    Likes Received:
    28,372
    Location:
    UK
    "Clearly, it is not appropriate to loosen the definition of recovery simply
    because things did not go as expected based on previous studies. Researchers need to be open to the
    possibility that their results may not align with previous findings, nor with their own
    preconceptions. That is the whole point of a trial. Otherwise, the enterprise ceases to be genuinely informative, and becomes an exercise in belief confirmation."
     
    MEMarge, lycaena, Hutan and 25 others like this.

Share This Page