1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

Discussion in 'General ME/CFS news' started by Daisymay, Oct 16, 2018.

  1. Daisymay

    Daisymay Senior Member (Voting Rights)

    Messages:
    682
    Professor Hooper’s peer-review comments were written to indicate the accurate situation that now obtains concerning the PACE trial raw data. People can judge for themselves if his comments were accepted by the BMJ by looking at their updated version of “Best Practice on CFS” released in September 2018. ( https://bestpractice.bmj.com/topics/en-gb/277/ )


    http://www.margaretwilliams.me/2018/hooper-review-bmj-best-practice-on-cfs.pdf

    A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

    Professor Malcolm Hooper 24th June 2018


    NOTE: I was asked by the BMJ Section Editor (BMJ Best Practice and BMJ Learning) to provide a peer review of Professor James Baraniuk’s document on “CFS”, to which I agreed. My comments below relate to the version sent to me. In my opinion, it indicated how dangerous the medical education programme about ME/CFS is in the UK. This was borne out by my face-to-face discussion with Professor Baraniuk himself on 1st June 2018 in London: he confirmed to me that his original report had already been sent by the BMJ to other referees and that he had received 156 comments which he was instructed had to be incorporated in his report. It was plainly obvious that those comments had been included in the version sent to me. Professor Baraniuk assured me that I should go ahead and respond as I wished, so it seems he knew his report was not as he intended it to be. In telephone discussions with the BMJ Section Editor, it was stressed to me that the BMJ had to have (quote) “equality”.
     
    Ash, bobbler, Peter Trewhitt and 18 others like this.
  2. Sbag

    Sbag Senior Member (Voting Rights)

    Messages:
    419
    Cracking critique!
     
  3. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Woah BMJ really taking the piss with Baraniuk there - makes me wonder if he considered taking his name off it. When it was published it was obviously a weird hotch potch with some reasonable bits and other dodgy stuff.
     
  4. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,263
    This needs to be widely disseminated.
    I am considering sending to my GP.
     
    Peter Trewhitt likes this.
  5. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
    UK
    Much as I appreciate the effort that clearly went into this, I think that at 18 pages, this is only likely to be read by the ultra-keen and therefore not the ideal advocacy document.
     
  6. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    7 pages (of actual review material) of an extremely well thought through review, shows just what a mess it was that he had to review.

    Now that is as succinct and legible a summing up of that aspect you could hope for I think.

    Excellent review!
     
  7. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
    UK
    His review comments continue in what I now see is a long appendix but anyone faced with this is going to think they've got to read a review 18 pages long. I think a brief contents list with page numbers would help.
     
  8. Trish

    Trish Moderator Staff Member

    Messages:
    51,890
    Location:
    UK
    It is largely good, and very worrying that the best practice document is so wrong.

    But this part concerns me:

    As I understand it we do not have evidence that ME/CFS is always and only a post enteroviral or post vaccination disease. Many of us fit all the definitions including CCC, yet our ME started after a different type of infection. I am concerned at this narrowing of the possible causes of ME.

    I am also concerned that his list of biological evidence is not all fully replicated and accurate. Overstating the case may lead to dismissal of his arguments.

    However, he is right about this:

     
    alktipping, bobbler, Sean and 20 others like this.
  9. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    2,734
    Under "peer reviewers" there are Disclosures. Of course, only Hooper has disclosures... :rolleyes:
     
  10. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    2,855
    Location:
    betwixt and between
    In skim-only mode, but just saw that on the BMJ Best Practice website presenting Baraniuk's summary both the IOM Report (2015) and the CDC‘s recommendations on "Symptoms and Diagnosis" are linked as "guidelines" on the right side. In the category "resources" the guideline section is only accessible with subscription, though.

    Also, the "patients‘ leaflets" linked on the right side, one on "Chronic Fatigue Syndrome" and one on "Depression in Adults", are only accessible with subscription.

    Could anyone who has access to "BMJ Best Practice" give us some information about the guidelines, patient leaflets and "evidence" presented as "resources" for "Best Practice" for "CFS/ME"? (documents' titles, authors?)

    Edit: Just realized that this thread's topic is Hooper's review, not the BMJ Best Practice content per se, so I'll copy my post on the thread "Sources of online information for medical professionals".

    Edit 2: correct link to the other thread
     
    Last edited: Jan 30, 2019
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,990
  12. John Mac

    John Mac Senior Member (Voting Rights)

    Messages:
    905
  13. Sean

    Sean Moderator Staff Member

    Messages:
    7,046
    Location:
    Australia
    Documents like this really should not be behind a paywall.
     
    alktipping, Hutan, Simone and 6 others like this.
  14. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
    4,256
    Location:
    Aotearoa New Zealand
    Notwithstanding Charles Shepherd's comments I think this is pretty good on a moderately quick skim through the PDF. It's a fairly long document, though about half are references. That probably means it's only going to be read by a professional invested in the area. I doubt most GPs would get far through it, but I may be wrong.

    The sections on possible causes etc seem fine — lots of biological findings and theories, but we don't yet know. I enclose one subsection in treatments —

    The section on CBT skates the line a bit, but seems adequately NICE-compliant in terms of being supportive not curative.
     
    RedFox, Peter Trewhitt, Kitty and 4 others like this.
  15. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,204
    it blurs over how in the strong difference of opinion, what clinicians and patients “now” agree on is that patients and their advocates/ most charities were right all along. The word harm is used without acknowledgement that that “harm” extends to accounting for why many of the patients who are house and bedbound are so.
     
    Last edited: Jan 17, 2024
    alktipping, bobbler, Hutan and 12 others like this.
  16. Trish

    Trish Moderator Staff Member

    Messages:
    51,890
    Location:
    UK
    This makes the Cochrane 2019 review much better than it is. It's seriously flawed.

    This in particular is seriously harmful misinformation. GET is bad for everyone regardless of severity levels. We all get PEM and can detriorate long term with GET.
     
    alktipping, bobbler, Hutan and 14 others like this.
  17. Sean

    Sean Moderator Staff Member

    Messages:
    7,046
    Location:
    Australia
    Although previous randomised controlled trials (RCTs) have reported benefits to structured GET in the management of ME/CFS,...

    If anything, the body of studies on GET from the psycho-behavioural club are characterised by their persistent lack of adequate control.

    They have also not reported any practical meaningful benefits.

    Many patients and clinicians now favour an alternative approach to managing activity levels in ME/CFS, referred to as ‘energy management’ or ‘pacing’, which involves carefully planning activities...

    Yeah, ha ha. Good one.

    These guys just don't get it yet, do they.
     
    alktipping, Hutan, Solstice and 9 others like this.
  18. Trish

    Trish Moderator Staff Member

    Messages:
    51,890
    Location:
    UK
    I don't like that description of pacing. as 'carefully planning activities to avoid overexertion (PEM)'. PEM is not overexertion, it's a consequence of overexertion. And however carefully we plan, the key is symptom contingent pacing, not plan contingent pacing. Also we can't plan completely, as exertion thresholds are not fixed.
    Also whatever we do is 'energy management' whether we do it by resting all the time or over exerting too much. So it's about doing what we can to avoid triggering PEM too often and too severely. Everyone in the world does 'energy management' and for most people it's fine however they choose to manage their energy. The difference for pwME is that if we don't manage it by restricting activity, we get much sicker.
     
    Ash, alktipping, bobbler and 17 others like this.
  19. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Agree @Trish wherever GET is mentioned the risk of significant worsening of severity must also be mentioned. Shorter term worsening for most if not all but the long term worsening is a huge impact for people.
     
    alktipping, Hutan, Solstice and 10 others like this.
  20. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    5,062
    Location:
    UK
    It's also a bit slippery, because 'activities' really means entire existence.

    It's good that professionals are now using activity where they'd once have used exercise, but in a sentence like this, it still manages to convey a sense of voluntary activity. It wouldn't make anyone think that planning might involve not eating fresh salad because you haven't the energy to chew it.
     
    Ash, alktipping, bobbler and 14 others like this.

Share This Page