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Unexplained post-acute infection syndromes, 2021, Choutka, Iwasaki, Hornig et al

Discussion in ''Conditions related to ME/CFS' news and research' started by rvallee, May 18, 2022.

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  1. rvallee

    rvallee Senior Member (Voting Rights)

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    It's a legitimate pet peeve of mine as a programmer, frankly an affront on my expertise to have a system that literally both inputs garbage data while also filtering out useful data, it may be the lossiest information system I have ever seen, I would never agree to pretend it's reliable. Health records are filled with garbage data in a way that few databases are.

    From an information science perspective, it's a complete disaster. Like applying JPEG compression 10x and somehow insisting it looks the exact same as the original. The delusion is strong here.
     
    rvallee, May 25, 2022
    #21
    SNT Gatchaman, janice, Hutan and 5 others like this.
  2. bobbler

    bobbler Senior Member (Voting Rights)

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    It seems the equivalent to if a Starbucks were to do research claiming that the names on its cups put into a database mean something (as a made up example "10% of our customers are called tall guy or Karen") about the customers rather than the staff.
     
    bobbler, May 26, 2022
    #22
    alktipping, hibiscuswahine and Peter Trewhitt like this.
  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    Here glandular fever tests are positive or negative. Serology is not done. EBV is more common but CMV also causes glandular fever.
     
    Amw66, May 26, 2022
    #23
    alktipping, hibiscuswahine, Peter Trewhitt and 1 other person like this.
  4. Hutan

    Hutan Moderator Staff Member

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    I like that the title of this paper includes the word 'Unexplained' - it feels like standing up to the proponents of MUS and saying 'yes, these post-acute infections syndromes are unexplained, and yes, they do represent a significant health care burden. So, how about we start doing some biomedical research and sort out what is going on?'

    I thought this was a good description of the disease that I have. 'Disproportionate fatigue' is a great phrase, and I think 'flu-like symptoms' deserves to be near the top of the list, as it is.

    Yes
    I'm not so keen on that. I think the evidence for the disease itself causing mood swings and depression is weak and problematic. I think the evidence has to be strong before labelling someone as irritable or moody, because a person with that label will have a much harder time standing up for themselves and effecting change. For example, if someone has become intolerant to noise, asking for quiet may be taken as irritability, or if a person desperately needs to lie down and is prevented from doing so, that may also be taken as irritability if others don't understand the urgency. If a person, with ME/CFS or not, is in pain, they may express irritation due to the difficulty of tolerating their situation. There isn't a lot of clinical merit in labelling the person as irritable though - what is needed is pain relief.

    It would have been good to see the 'disproportionate fatigue' symptom used here rather than 'chronic fatigue that is not received by sleep or rest', because, as many of us have said before, at least some of the fatigue is relieved by sleep and rest. PEM usually resolves back to baseline following a period of rest.
     
    Hutan, May 27, 2022
    #24
    alktipping, Milo, Wonko and 9 others like this.
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Norwegian news site for research, forskning.no had a good article about the study with a couple of referrals to ME as well.

    Vi vet altfor lite om langvarige plager etter infeksjoner, mener forskere
    We know far too little about long-term ailments after infections, researchers says

    quotes:
    Although Choutka and colleagues believe we know far too little, there are studies that draw the contours of what researchers call post-acute infectious syndromes (PAIS).

    It is striking, for example, that these syndromes have a number of common features.

    Typical symptoms are fatigue, cognitive problems, flu-like symptoms, pain, sleep problems and intolerance to exertion.

    This overlaps a lot with the symptoms in patients with ME, also called chronic fatigue syndrome, the researchers write.

    ...

    There is a lot of work left here, the researchers write.

    They call for more basic biomedical research, in addition to more studies to arrive at good diagnostic criteria and a larger overview of how many are actually affected by post-acute infectious syndromes.

    A good start is probably to take hold of the work that has been done at ME, write Choutka and co.

    The results from there may set the direction for future research and treatment.
     
    Kalliope, May 31, 2022
    #25
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  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Mady Hornig on Twitter about the article:
     
    Kalliope, May 31, 2022
    #26
    Hutan, alktipping, Wyva and 5 others like this.
  7. Cheshire

    Cheshire Moderator Staff Member

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    A comprehensive sum up of this paper has just been published in French, on le Vidal website.
    Le Vidal is a review of all the medication used in France (indication, side effects etc...) and is a tool used by the vast majority of GPs.
    Vidal article.

    And here is a thread made by the author of the article, Stéphane Korsia-Meffre, a well respected scientific writer:

    He explains that he's known ME activists for a long time, whom he met during the time he was an AIDS activist:

    I can't believe that such an article is published in such a media. This is amazing.
     
    Cheshire, Jun 3, 2022
    #27
    Snow Leopard, NelliePledge, Lilas and 6 others like this.
  8. Trish

    Trish Moderator Staff Member

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    Trish, Jan 10, 2023
    #28
    Hutan and Peter Trewhitt like this.
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