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Possibility of ME or PVFS after COVID-19, Long Covid

Discussion in 'Epidemics (including Covid-19)' started by Hip, Jan 21, 2020.

  1. Sean

    Sean Senior Member (Voting Rights)

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    I doubt any other health system is doing too well either.
     
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  2. Sean

    Sean Senior Member (Voting Rights)

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    This.

    It is not fatigue in any normal sense. It is an extremely high cost to physiological activity of any kind, including base metabolism. We are starting from way below par before we even exceed base metabolism.

    It is a pathological load of some kind on the body. I suspect almost everything we have seen so far is just the consequences of the otherwise normal physiology trying to adapt to that.

    I am not convinced the primary answer lies in the energy systems of the body, except maybe as clues to further back up the causal chain.
     
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  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    At least some are sounding warning shots
     
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  4. Trish

    Trish Moderator Staff Member

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    That's a very good article.
     
  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    In three hours:
     
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  6. rvallee

    rvallee Senior Member (Voting Rights)

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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    It's a damn shame this isn't studied in general. One of the main consequences of psychosomatic ideology is that it turns the people closest to you against you, or makes them go away in a time of greatest need.

     
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  8. Dakota15

    Dakota15 Established Member (Voting Rights)

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    Sharing this event/dialogue from last week that contains a fair amount of ME discussion (the Q&A part with the researchers & clinicians begins around the 39 minute mark). Features Dr. Levine, Dr. Lipkin, Dr. Oved Amitay from Solve



    Anecdote from Dr. Lipkin:"The field of ME/CFS has made enormous strides over the past several years. What we've learned is that it is not a single disease. There are many different disorders that present with similar phenomenon. The same thing is likely to be true with Long COVID.The question will be how do these all converge through the final common pathways, to result in this disorder that we receive as fatigue, cognitive dysfunction, and some of the other phenomena that you hear people describe.

    We are very concerned that in the process of investing in Long COVID, without adequate attention to ME/CFS in parallel, that opportunities to identify the triggers in Long COVID, ME/CFS, Gulf War Illness, similar kind of conditions, may be missed.What I think in terms of what we need to do now, and I would encourage anybody involved in this call to pursue this, is to look at the ME/CFS literature very carefully because I think you will find clues there that may be helpful in unraveling in what's going on in Long COVID. And I think these fields can converge and we can enlighten one another."

    More for Lipkin: "...there are biomarkers for ME/CFS. We have had a preliminary look at some patients with Long COVID and they seem to be consistent. It's not the sort of thing I would promote at this point [2-Day CPET...?]....this is a plea for those of you who would like to see these kinds of discoveries expedited, please do access the ME/CFS resources that we have. There are NIH funded centers who would eagerly partner to sort these as rapidly as we can."

    From Dr. Levine:"I think the silver lining will be that finally we will find some recognition for ME that we've been seeking for years. We don't have a place at the table so to speak and so I'm hoping that this and other activist groups will help support and bring us more to the forefront so that we can bridge the gap and learn more about these complex diseases"

    More from Levine: "there are some emerging biomarkers that our centers have determined to be reasonably reproducible and that separate people with ME from age and gendered matched normal people. As Ian referred to, particularly in the microbiome and certain cytokine abnormalities, we've definitely found differences within the group."
     
    Last edited: Oct 28, 2021
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  9. Sean

    Sean Senior Member (Voting Rights)

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    It is unbelievable cruelty. :mad::mad::mad:
     
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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    A victory for ME sufferers could be a victory for women and those with Long Covid

    https://joannab.substack.com/p/a-victory-for-me-sufferers-could
     
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  11. Kalliope

    Kalliope Senior Member (Voting Rights)

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    This refers to the NICE guidelines, but as dr. Asad Khan brings in the aspect of Long Covid in his tweets, I figured this was the best thread. Interesting, but not surprising, what he's saying about silent colleagues who have worried about linking ME to Long Covid and the reason why. I hope he's right in that some are now shifting.

     
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  12. Hutan

    Hutan Moderator Staff Member

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  13. rvallee

    rvallee Senior Member (Voting Rights)

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    It turns out that ideology is a very bad basis to make public health decisions. In order to avoid children getting Long Covid, thinking it's anxiety, they argued making sure as many would be infected, the cause of it. There really needs to be a sort of media campaign equivalent to "this is your brain on drugs" but instead it's ideology. Sniffing glue is nothing compared to this.

     
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    It also turns out that building a clinical model on the basis of an ideology is also a very lousy way to do public health. Who knew? Somehow, very few people in medicine. I think that's a problem. I would readily suggest this is a serious problem.

    Tweet because of author and paywalled. And as is tradition the satisfaction numbers are wildly inflated, since too many patients are good patients who don't complain and want to credit people for trying, even if it's completely wrong.

     
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  15. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    The full article can be accessed here.

    Money quote:

    These long covid clinics were always going to be Potemkim villages. We could have told them that (and we did).

    They're not even bothering to pretend in Australia. Apparently those with LC are being dismissed or being advised to go to the existing private clinics that have been scamming ME patients for decades for GET and CBT.
     
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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I haven't got any figures, but judging by the number of job ads for staff for ME/CFS clinics that are now also LC clinics it's a similar picture here. Quite how they are going to handle the removal of GET and CBT (curative) remains to be seen.
    https://www.s4me.info/threads/me-cfs-services-in-the-united-kingdom.5625/page-14#post-383891
     
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  17. Dakota15

    Dakota15 Established Member (Voting Rights)

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    I have received confirmation that Dr. Lucinda Bateman, part of the US ME/CFS Clinician Coalition, will be a part of the University of Utah's RECOVER Initiative efforts to study Long COVID.

    https://healthcare.utah.edu/publicaffairs/news/2021/10/hess-metz-grants.php

    After reaching out to a University of Utah MD affiliated with the project, they sent me "The Bateman Horne team is part of our RECOVER initiative in Utah and we apologize that was not clear in the announcement. You are absolutely right, Dr. Bateman is an amazing clinician and resource for this work."

    Just wanted to share.
     
  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Dr. Amy Small was interviewed in the last episode of the podcast Talking General Practice.
    The interview begins at 11.45 minutes into the podcast.

    She talks about her infection with Covid-19 and developing Long Covid. Then of how she improved with dietary changes (like cutting out sugar), osteopathy, beta blockers etc. She says she received advice from ME patients.

    Talks about POTS.
    Also talks quite a bit about pacing and explains what it entails.

    She then talks about how she envisions how GPs in the long run can follow up LC patients, but with access to multi disciplinary teams and tests in a hospital setting.

    She regarded herself as fully recovered. Full time job and able to exercise a lot. But unfortunately she relapsed after the booster vaccine. She is now back on medication and is pacing "back to health".

    Towards the end she says we have to look at the ME community. That they called themselves the millions missing and that's really what they are. That there is so much to learn from them and strength to gain from their experience.

    This is the time to change. If we can get this right for Long Covid patients, we can get it right for other conditions. We can't keep ignoring chronic disease.

    https://www.gponline.com/podcast-industrial-action-living-long-covid/article/1732305
     
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  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have sympathy for someone ho has developed Post Covid problems and a medical professional may have useful insight from experiencing an illness but their conclusions are not necessarily entirely helpful.

    The ida of a GP managing a problem with help from a multidisciplinary tam sounds like the same bad old days approach. Everyone in this seems just to look at it from their business angle. To get anywhere useful e need specialist physicians who can develop evidence-based care. I am not sure hat a GP has to offer.
     
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  20. Trish

    Trish Moderator Staff Member

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    Sick notes and sympathy if you're lucky. Antidepressants, referrals to IAPT, advice to exercise and no sick notes if you're not.
     
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