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Blog: The Science Bit by Brian Hughes

Discussion in 'General ME/CFS news' started by Kalliope, Oct 14, 2020.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Science Bit All Aboard the Long COIVD gravy train

    Quote:
    Swiss Re Group, “one of the world’s leading providers of reinsurance and insurance,” recently hosted a virtual Expert Forum on “secondary” impacts of COVID. As would be expected, the insurance industry is especially interested in the financial implications of this new disease. The programme covered many of the biophysical sequelae of COVID, as well as its knock-on impact on population mental health and the effects of lockdown-related treatment delays. Many of the slide presentations are now online.
     
    Louie41, Shinygleamy, Anna H and 11 others like this.
  2. Andy

    Andy Committee Member

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    Another quote,

    "As extensively covered in this blog, the UK gravy train directing thousands of British ME/CFS patients to meritless psychological therapies has recently begun to slow down — after NICE published new draft treatment guidlines rejecting such practices as CBT, GET, and the so-called “Lightning Process.” It is set to grind to a complete halt next August.

    But just as the ME/CFS gravy train begins to apply its brakes, lo and behold, the Long COVID Express pulls into the station. Choo choo!"
     
    Louie41, Amw66, Shinygleamy and 16 others like this.
  3. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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  4. Trish

    Trish Moderator Staff Member

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    Anna H, Louie41, Hutan and 12 others like this.
  5. boolybooly

    boolybooly Senior Member (Voting Rights)

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    Nice one Brian :)
     
  6. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    2,648
    Yea refusing to release the data --- until the outcome of the court case (which followed the FOI hearing) --- doesn't really fit with the data being OK/understandable mistake.
     
  7. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    10,280
    Great article. :thumbup:

    I would like to focus a little on the case histories used by Sharpe. We know that sexism in medicine is fairly firmly entrenched. Those of us who have been through the UK benefits system know how the most trivial details can be twisted as evidence to be used against you, while evidence that is truthful & accurate can be ignored. So let's look at the case histories.

    1. The female

    It doesn't mention whether she has a partner. If she doesn't then she has an added burden of being a single parent. This makes it highly unlikely she will be getting the opportunity to rest & relax as needed.

    If she does, then the chances are the couple needed both salaries to cover the bills and they are now under financial pressure. This means if she was able to afford a few hours of childcare here and there that's gone. As will other potentially labour saving treats like a takeaway once a week, a cleaner and so on.

    So, even though off work, the chances are this woman is having to do as much as if she were at work.


    The case history doesn't tell us how old the woman is. That's important because many women will start going through perimenopause as young as the early 40s. The symptoms can be vague and ill defined and can often start out as hormone imbalance. Hormone imbalance can cause all sorts of symptoms from headaches, increased frequency and severity of migraines, heavier than normal periods, periods that can last slightly longer than usual and leading to anaemia. In turn anaemia can cause breathlessness, palpitations, increased headaches and so on.

    This is also a point in a female's life where other issues can develop such as hypothyroidism.

    Note the lack of detail in the case history about ruling out any other causes of these symptoms.

    2. The male

    We aren't told his marital status not whether he has children. We are told about his job title.

    His job is one where, even if he is solely responsible for childcare, he will be able to afford childcare. He will most likely be covered by a generous package by his employer so money worries are less likely to be an issue.

    Apparently, he states he is unable to work but, at the time when he says he is unable to work he was apparently well enough to go abroad on a diving break (not something one is likely to do is suffering from any breathing difficulties). If I were an investigator for the DWP I would find that interesting.

    In addition, it has come to light via twitter that during this period this patient was also going for 5km runs, while also claiming that he suffered from a condition that causes intolerance to exercise.

    The case history simply notes that this patient recovered with rehabilitation.



    Neither case history is complete. If applying for benefits the male would almost certainly find himself under investigation & probably surveillance.

    The conclusion recovered with rehabilitation tells us that if the patient is well enough to take scuba diving holidays and go on 5km runs while at the same time suffering from an illness that causes exercise intolerance they are likely to recover with rehabilitation. Especially when they are then also rewarded with grant money to research the rehabilitation therapy that allegedly worked for them.

    If I worked for Swiss Re I think I would be annoyed to have paid good money for such a presentation. At best it's a piece of fluff. At worst it could end up costing me an awful lot of money one day as it gives a wholly misleading picture. I would be mindful of the fines UNUM had to pay in the past.
     
  8. Andy

    Andy Committee Member

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    Location:
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    Some psychiatrists still not getting it

    Steven Lubet, a law professor at Northwestern University, has written a powerful piece over at Social Science Space, responding to the awful Op-Ed on Long COVID that appeared the other week in the Wall Street Journal. He doesn’t hold back:

    It would be mistaken to suppose that disdain for patients is an actual requirement of psychiatric training in North America, but you would have good reason to wonder about it after reading a recent op-ed in the Wall Street Journal by Dr. Jeremy Devine, a psychiatry resident at McMaster University in Canada.

    Devine is just one of a number of critics who’ve recently seen fit to troll the entire Long COVID patient community by dismissing them as hysterics. He claims that their ongoing symptoms are actually nothing more than the “invention of vocal patient activist groups” who, as Lubet puts it, “have irrationally chosen to deny their need for psychiatric care.”

    https://thesciencebit.net/2021/04/09/some-psychiatrists-still-not-getting-it/
     
    Anna H, Louie41, mango and 16 others like this.
  9. Andy

    Andy Committee Member

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    "Our response to that controversial study on CBT outcomes in chronic fatigue has now been formally published

    As you read here in February, David Tuller and I attempted to respond to an alarming research paper that appeared in a recent issue of the Journal of the Royal Society of Medicine.

    The paper they had published had purported to show evidence that cognitive behavioural therapy leads to symptom improvements in patients with chronic fatigue. We wrote a response detailing the study’s serious methodological flaws and the highly misleading way in which its results had been presented. We even showed that key statistical statements in the paper’s Abstract were factually inaccurate. Despite this, the Journal of the Royal Society of Medicine saw fit to reject our submission without providing any reason. Even though our manuscript met all the journal’s guidelines, the editor chose to not even allow it be reviewed for publication.

    Undeterred, we proceeded to submit to another journal, the Journal of Health Psychology. There it underwent formal review, arising from which we were required to make some changes. Ultimately our revisions were deemed satisfactory and our paper was accepted."

    https://thesciencebit.net/2021/04/1...onic-fatigue-has-now-been-formally-published/

    [The original paper was discussed here, Cognitive Behavioural Therapy for chronic fatigue and CFS: outcomes from a specialist clinic in the UK (2020) Adamson, Wessely, Chalder]
     
    Last edited by a moderator: Apr 11, 2021
    Anna H, Louie41, mango and 19 others like this.
  10. Barry

    Barry Senior Member (Voting Rights)

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    "In our view, to ask a student to serve as peer reviewer for a paper produced by senior professors of their own college places them in an impossible position, and is highly inappropriate."

    In the list of things (such a long list) that should be noted if there is ever a public enquiry, this surely has to count as a key indicator of the mindset behind these people. It is a deeply immoral, deeply unprofessional, wilful attempt at facilitating bias within a research paper. Even if the student was fully on board with doing a review, that does not exonerate the authors from allowing it, let alone almost certainly inducing it.
     
    Louie41, mango, Snowdrop and 17 others like this.
  11. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Time to flatten the curve of shoddy COVID scholarship
    (Article also touches upon NICE, Guardian articles, Garner)

    quote:
    A global pandemic should challenge us to apply rigorous thinking to help solve the world’s problems. It should not be seen as a sexy topic that can be commandeered into your next colour-by-numbers survey study, an opportunity to advertise your therapeutic indispensibility, or a cheap way to add topical lustre to your academic CV.

    It’s truly time we flattened the curve of shoddy COVID science.
     
    alktipping, Louie41, Kirsten and 20 others like this.
  12. Sean

    Sean Moderator Staff Member

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    Whatever was wrong with him, it wasn't ME as I know it.
     
  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Science Bit "The problem may well be that some of our treatments are too evidence based"

    quote:

    Colleagues on the Science For ME forum drew my attention to this little gem of a passage — removed from the internet just last month, but preserved for posterity by the Wayback Machine — which had been posted by an esteemed psychology professor on the website of an illustrious UK university (emphasis added, but original typos preserved):

    Much has been made of the fact that when badly “administered”, Cognitive Behavioural Therapy can be less than helpful in the management of Chronic Fatigue Syndrome…there was a recent patient conducted survey which showed a high degree of dissatisfaction with implementation of this treatment. However, we professionals would like to minimise this finding, we cannot ignore the fact that there is a very real problem…

    The problem may well be that some of our treatments are too evidence based. Thoroughly convinced as were are by the evidence, we all too easily fall into a repetitive giving of advice…What this fails to address as an approach, are the very real reasons why a client may be sceptical or anxious; their wariness of yet more professional advice…


    Stop right there — too evidence-based, you say?
     
    alktipping, Louie41, Anna H and 20 others like this.
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    While literally describing belief.
    This is belief, literally the opposite of evidence. Because this is all a con, people merely expressing confidence that this works is what gives the illusion that it does. It's a Big lie. All because they are thoroughly convinced. It's quite amazing to literally describe belief while intending to speak of evidence and either being oblivious or indifferent to it. The Dunning-Kruger effect is seriously at its maximum wherever psychology creeps into medicine, there's probably some word for how incredibly ironic this is, but I don't know it.
     
    Anna H, alktipping, Louie41 and 10 others like this.
  15. Trish

    Trish Moderator Staff Member

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    I have just read the whole article that quote comes from. It's by Vincent Deary. It doesn't sound like he has a clue about ME/CFS. He's talking about helping people who are not coping with other aspects of their lives and who are fatigued by it all, and once you have their lives sorted out and get them thinking positive, you can then get them doing their GET and recovering. Patronising crap.
     
    Samuel, Anna H, alktipping and 20 others like this.
  16. Barry

    Barry Senior Member (Voting Rights)

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    What a twisted and delusional world these people live in. It sure as heck is nothing to do with science. Forever exposing to the world how unfit for purpose they are. Let's hope real professionals might now be more prepared to see these sham scientists for what they are.
     
  17. JemPD

    JemPD Senior Member (Voting Rights)

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    I think that article deserves it's own thread. It is very revealing. There's a few things i'd like to say about it but i dont want to pollute this thread & I havent the energy to start a new thread (figure out which forum, do the links, explain what it is etc).....

    just as an aside...Isnt it weird how selective cognitive function is?. It will let me do some things which sound like they'd be really difficult but are actually accessible to me, & yet other things that i think i 'ought' to be able to do just seem really cryptic/opaque & wont come to heel.
     
  18. CRG

    CRG Senior Member (Voting Rights)

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  19. Trish

    Trish Moderator Staff Member

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    alktipping, Louie41, EzzieD and 9 others like this.
  20. Hutan

    Hutan Moderator Staff Member

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