1. Guest, the 'News in Brief' for the week beginning 1st August 2022 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

U.K. trial Rehabilitation exercise and psychological support after Covid 19 infection (REGAIN) Warwick University

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Kalliope, Dec 11, 2020.

  1. Andy

    Andy Committee Member

    Messages:
    17,067
    Location:
    Hampshire, UK
  2. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    9,039
    Location:
    Canada
    They are blatantly lying about the "other studies" that showed benefits from exercise. No such studies exist, they conclude no impact on overall health, the only noticeable thing was slightly improved performance by some on the limited tests used to measure performance, like 6MWT, not controlled to whether this performance was gained at the expense of normal activities, which: duh.

    Straight up lying to justify a study that has no merit and will eat 1/4 of the pennies dedicated to a public health crisis, especially as they dare claim this is not about increasing performance, rather about improving overall health, which is precisely what the very limited number of studies they use to justify this, 3 by my count but they don't even dare cite them, showed. No basis for why this is necessary, it only aims to "encourage" people to do various activities, as if people with LC are just confused people who can't figure out how to... do activities. I can't even understand the thought process here, it's too irrational.

    The very same has been shown by ongoing LC rehabilitation programs. If the patients do nothing else, they may slightly increase their performance on a very limited test, at the expense of other activities, but it has no impact on ability to function or any measurable benefit.

    Lying about health care matters. Absurd. But the NICE guidance on LC guarantees it and so the first year of LC research just has to be fully wasted repeating the same failures all over again, for the same reasons. And one thing I noted is that most, if not all, the physicians who have LC have mentioned they tried GET. Even experiencing it, it made sense to them that even though deconditioning does not explain any of this, it should work.
     
    DokaGirl, lycaena, Arnie Pye and 4 others like this.
  3. Andy

    Andy Committee Member

    Messages:
    17,067
    Location:
    Hampshire, UK
    Update from @PhysiosforME

    REGAIN trial for Long Covid
    https://www.physiosforme.com/post/regain-trial-for-long-covid?postId=6000594ec7b36300185f8797
     
  4. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    2,363
    Location:
    betwixt and between
    Thank you @PhysiosforME .

    Apologies if I missed it but has the trial at that point been altered to include robust (objective outcomes) as primary endpoints?

    If I remember correctly, the first trial protocol didn't include objective outcomes at primary endpoints.
     
    DokaGirl, MEMarge, Michelle and 3 others like this.
  5. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    287
  6. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    9,986
    Location:
    UK West Midlands
    There’s constructive engagement and then there’s having a meeting for the sake of appearances let’s hope these researchers are just slow on further communicating and not stonewalling.
     
  7. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    287
    Hmmmmmmmmm
    We shall see
     
    DokaGirl, Michelle, ukxmrv and 7 others like this.
  8. kilfinnan

    kilfinnan Established Member (Voting Rights)

    Messages:
    47
    Location:
    Lochmaben
    As a long suffering lay person, I find this disgusting. It's outrageous that these people are given funding time and again. Funding for support after Covid!

    They are just a pick and mix of the interchangeable!

    http://wrap.warwick.ac.uk/view/divisions/wrin/2019.default.html

    They're stealing money for their childish anacronyms. The whole thing is rigged and it's very disheartening. Thank you for all your effort.
     
    Last edited: Jan 19, 2021
    DokaGirl, MEMarge, EzzieD and 4 others like this.
  9. Andy

    Andy Committee Member

    Messages:
    17,067
    Location:
    Hampshire, UK
    DokaGirl, Michelle, Sean and 6 others like this.
  10. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    287
    DokaGirl, Michelle, Sean and 4 others like this.
  11. Andy

    Andy Committee Member

    Messages:
    17,067
    Location:
    Hampshire, UK
    Trial By Error: Can Someone Please Slap a Warning Label on this Exercise-and-Rehab Long Covid Study?

    "I’ve been writing for a while about the rush to treat long Covid patients with the outdated and debunked approach long applied to ME/CFS. A major effort to demonstrate that an exercise program can lead to “recovery” from long Covid, sponsored by the University of Warwick and funded with £1.200,000 from the UK’s National Institute for Health Research, is currently recruiting. It goes without saying that the REGAIN study is seriously flawed–as we have come to expect from this type of research."

    https://www.virology.ws/2022/03/30/...-on-this-exercise-and-rehab-long-covid-study/
     
  12. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    5,209
    Last edited: Mar 31, 2022
  13. Midnattsol

    Midnattsol Moderator Staff Member

    Messages:
    2,304
    "Evidence based weight management program" and a waitlist control of people who want to participate. Anyone care to guess if someone who wants to follow a weight loss program with what looks like higher than normal amount of follow up will feel better than people who want to do the same but receives "usual care" instead? :rolleyes:

    "Evidence based weight loss" is also rather dubious, there are tons of these diets depending on how much evidence (and the quality of said evidence) you're ok with. Calorie counting? Very low calorie diets based on powder meals? Low carb? Ketogenic? Alternate day fasting? Plant based?

    Many diet plans (and dietary guidelines around the world) also include exercise.
     
    DokaGirl, Amw66, NelliePledge and 4 others like this.
  14. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    9,039
    Location:
    Canada
    Meanwhile, in real life, the most common problem I see on the issue of food is being able to eat enough and losing too much weight as a result. People have to try radical dietary changes without any support from professionals. They struggle to keep food down, while some face the difficulty of being unable to eat either because they can't even sit up, or because it massively raises their heart rate.

    And then of course there are those who are struggling to eat because they have had no income for too long and cannot find any support.

    I am significantly underweight. Not to the point where it's a problem but it's easy to find evidence that this is utterly foolish and pointless.
     
    rainy, DokaGirl, Art Vandelay and 3 others like this.
  15. Joan Crawford

    Joan Crawford Senior Member (Voting Rights)

    Messages:
    366
    Location:
    Warton, Carnforth, Lancs, UK
    I've emailed the REGAIN team, politely naturally, to ask a few questions and alert them to some criticisms and publications.

    I'll let you know if I get a wee response
     
    DokaGirl, EzzieD, Kirsten and 11 others like this.
  16. Midnattsol

    Midnattsol Moderator Staff Member

    Messages:
    2,304
    This!

    Why is there not a study looking at the prevalence of this? Makes me so sad/frustrated. If I didn't have someone who can cook for me on bad days my intake would drop too much on days it really shouldn't.
     
  17. Andy

    Andy Committee Member

    Messages:
    17,067
    Location:
    Hampshire, UK
    Trial By Error: More on the REGAIN Trial for Long Covid Patients

    "I wrote recently about the problematic REGAIN study from the University of Warwick, which is testing an exercise-and-psychological-rehab program as a treatment for long Covid patients. Unfortunately, neither the protocol nor the participant information sheet, to which participants are referred during the consenting process, mentions the core ME/CFS symptom of post-exertional malaise (PEM), which has also been reported in long Covid.

    The FAQ does mention PEM. However, since patients are not required to read the FAQ, there is no guarantee that those currently enrolling in this study will know or have heard anything about this potential risk. Moreover, the FAQ suggests that PEM likely impacts only a “small set” of long Covid patients but provides no evidence to back up this claim. In fact, surveys have indicated that many long Covid patients experience PEM—not just a “small set” of them."

    https://www.virology.ws/2022/04/08/trial-by-error-more-on-the-regain-trial-for-long-covid-patients/
     
    Amw66, DokaGirl, EzzieD and 8 others like this.
  18. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    2,890
    To paraphrase, the researchers are saying little is known about LC, but there are no "Serious Adverse Events" expected by putting study subjects through GET and CBT.

    This seems to violate the precautionary principle, which those in emergency settings use: make sure it's safe before you proceed.

    The researchers appear to be confident that no harm will come to the participants, even though knowledge about this disease is in its infancy.

    Again, circular explanations: no harm will come to you, because I say no harm will come to you.

    Already dismissing LC as psychological?

    What about neurological and cardiological findings that show evidence of physical problems? What about PEM?

    Here we go again.
     
    Art Vandelay, Sean, rvallee and 6 others like this.

Share This Page