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  1. rvallee

    Research news from Bhupesh Prusty

    It's a general theory behind all of it. It would explain why not only so many viruses but some bacteria as well lead to a similar state of chronic illness, with some of a pathogen's characteristics but an underlying sickness response as well. It could even explain why things like major bodily...
  2. rvallee

    Research news from Bhupesh Prusty

    My impression is that he is pursuing something that could be promising and doesn't want to give false hope if it's a waste of time? We really need a formalized always-on patient engagement process for this. Research on ME cannot progress much without patient input and although this is a way...
  3. rvallee

    UK: Physios for ME

    It's problematic because it's been weaponized in the BPS/MUS model. And because brushing one's teeth does not qualify as a "boom" and yet it is used in that sense in the MUS model. Might as well describe one very drunk guy with a bent-out-of-shape rake as an invading army armed to the teeth with...
  4. rvallee

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Continuing with the RCGP document: Psychosocial medicine is on the way:
  5. rvallee

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I don't know who to tell this to but this needs all alarms blaring red, fast and LOUD. People will get hurt by this. People will likely die by this. It's an absolute disaster. Maybe I read it wrong. But it looks like the worst possible thing anyone could have come up with.
  6. rvallee

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    "Rehabilitation" advice coming from the RCGP is just as dreaded as anticipated, literally the BPS/PACE/MUS model: https://www.rcpjournals.org/content/clinmedicine/early/2020/06/08/clinmed.2020-0353 https://www.rcpjournals.org/content/clinmedicine/early/2020/06/08/clinmed.2020-0353.full.pdf...
  7. rvallee

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I saw a few, they are rough estimates, nothing reliable so haven't bookmarked them. Just a rough figure.
  8. rvallee

    Predicting GP visits: A multinomial logistic regression investigating GP visits amongst a cohort of UK patients living with ME: Walsh et al June 2020

    Not really hard to see the problem here. Discriminate against a disease? Bad for patients. It's a fairly simple cause and effect. MS patients fared just as poorly as we did before MS was adequately explained and formalized in medical practice along with a dedicated specialty that simply began to...
  9. rvallee

    Bias due to a lack of blinding: a discussion

    As some wise guy said, if they didn't do that, then nobody would recover. And it's true, nobody actually recovers because of their interventions. At best some recover naturally and now that information gets lost. That information likely involves our immune system, but we won't know until we...
  10. rvallee

    A general thread on the PACE trial!

    Wessely blatantly lied here, said at most there was one change to the main Lancet paper. There were many fundamental changes. He should know, he wrote the damn manual and was a center lead. In secrecy. Because reasons.
  11. rvallee

    A general thread on the PACE trial!

    The metaphor works best because a cruise ship has a planned destination from the start and does not deviate from it, in fact the destination is the only guaranteed thing, as sometimes itinerary will change a bit, say because of weather, but the destination is already negotiated in a contract and...
  12. rvallee

    Rehabilitation for motor functional neurological disorder: a follow-up study of 185 patients, 2020, Theuer et al

    That conclusion has nothing to do with... anything. It's a wish. "Beneficial" is not an end point. And yeah the 30 days is seriously weird and suggests nothing in this thing can be taken at face value, it's just not serious work.
  13. rvallee

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    :banghead: Yes, tens of millions of cases is definitely rare. Barely more than a handful.
  14. rvallee

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Early estimates I have seen was 1 in 20 but saw more recent ones at 1 in 10. Nothing reliable yet, it's especially hard given we don't even know the true number of actual cases. And that number likely includes other complications from lung or kidney damage, clots, etc.
  15. rvallee

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Those are definitively prevalent in the acute phase of COVID. I don't know about other viruses but in some COVID cases they are the main or even the only symptoms. It probably depends on where the virus lands. I've seen a few cases where loss of smell was the only notable symptom, probably held...
  16. rvallee

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I think a few have been done, Chalder I think, but none that are fit for purpose, they always restrict the options to those they favor and selectively report. This needs a real patient engagement process. Frankly this is something we will probably have to do ourselves in the long run, defining...
  17. rvallee

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Major kudos to Millions Missing France. Doing outstanding work lately. Many of you won't really see it but there is lots of discussion in French twitter, especially with the hashtags #ApresJ20 #ApresJ60 (#AfterD20-60), and this account is very active handing out guidance and support, especially...
  18. rvallee

    EXPLORER study: Exploring treatments for younger children with CFS/ME - Amberly Brigden, Esther Crawley

    Just doing the same 3 things in a loop, never progressing an inch, and still always getting funded for doing the same 3 things in a loop, going strong over a century at this point, of the same 3 things in a loop that always find nothing but somehow always support the need to continue to do the...
  19. rvallee

    The care of younger children (5–11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’, 2020, Crawley

    That will only happen when rubbish like the BPS ideology, behavioral manipulation and gaslighting of sick people and charlatans like Crawley get the hell out of the way and this complex problem is finally in the hands of people willing and able to help along with adequate resources and support...
  20. rvallee

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Clicking on the link they used, no warning that the review is problematic and under, uh, review. This is very... problematic. As is the "Published 21 May, 2020", makes the conclusions look brand new and refreshed. And the substance, of course, very problematic. Ah, you have to click on "Read...
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