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

Discussion in 'Long Covid news' started by Hip, Jan 21, 2020.

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  1. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
    262
    Location:
    England
    Very sorry to hear of this experience @Shinygleamy.
    Would agree with everything @Kirsten has said. It is absolutely not the case that CFS or ME are no longer being diagnosed - you are totally within your right to get a second opinion and choose never to see that GP again. Hope the benefits claim is successful - always such a difficult process, doctors adding to that stress through their own ignorance and prejudice is unacceptable, if their is any capacity to submit a complaint I would, but also completely understand if that is just beyond what your family or brother are capable of right now

    Yes it is, but the Welsh government set up an agreement with NICE that they would also use their guidelines. So NICE guidelines officially apply to England and Wales, and unofficially have a significant impact on the healthcare systems of Scotland (to the extent that Scottish government health bodies are waiting on the NICE update before doing anything new themselves) and Northern Ireland and to a lesser extent other countries around the world.
    Or at least that's my understanding of the sitch, if there's anything in there that someone can see is incorrect please do say.
     
  2. Amw66

    Amw66 Senior Member (Voting Rights)

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    No
    Usually NICE is followed , but not necessarily.
    Separate health system.
     
  3. Wits_End

    Wits_End Senior Member (Voting Rights)

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    1,322
    Location:
    UK London
    "Capable of", or actually do transmit? Transmit, or merely emit? As someone's pointed out before, if they're simply emitting then many of them will be doing so at 2-3-4 feet from the ground, where they're less likely to be inhaled by an adult of average height. Sounds almost as though they're "Teflon-coated" in some way and the virus is just "bouncing off" them? Are they just "reflecting" the virions back out again, or are they even replicating them and/or splitting them into smaller particles, so to speak?

    Sorry, I've probably been reading far too much science fiction ...
     
    alktipping, Invisible Woman and Kitty like this.
  4. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,674
    Location:
    UK
    Irrelevant to my point/question.

    Children seemingly contain many more viirons than adults (who it is suggested they infect at roughly double the rate adults do).

    They typically show no symptoms, no obvious evidence of immune activation, which probably explains the above.

    What stops the virus?

    Viruses are simple things, they seem to keep replicating until they can no longer do so - at least this is the public picture presented.

    This is, to my understanding, one of the main reasons we even have an immune system, as without some form of opposition viruses will cause so much damage that we die.

    So with no obvious immune activation, and high viral loads, what stops the virus from killing them?

    Does the same mechanism also work in adults, in addition to the antibody driven immune system? Does this explain how come many adults seem to recover but not have significant, or even detectable, antibody levels?

    Shouldn't someone be 'researching' this?

    Why hasn't anyone in the media jumped up and down asking such a blindly obvious thing?

    Or is my understanding of how the immune system works less than literally everyone else?
     
    Last edited: Aug 10, 2020
  5. Daisybell

    Daisybell Senior Member (Voting Rights)

    Messages:
    2,628
    Location:
    New Zealand
    I say that my ME came on after parvovirus. A colleague at work caught parvovirus some time after I did, and she died from myocarditis....
     
  6. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    Is she arguing that strokes, pulmonary embolisms and cardiac damage are characteristic of a majority of post covid syndrome? There clearly are such cases and categorisation will no doubt be difficult. But what about the other cases?
     
    alktipping, sebaaa, Michelle and 6 others like this.
  7. Ebb Tide

    Ebb Tide Senior Member (Voting Rights)

    Messages:
    245
    Although now back in Scotland, I was living in England when a virus triggered my relapse in 2017 after an extended remission.

    The GP (senior partner in the practice, supervised GP trainees) put 'viral illness' on my 'Fit Notes' for the first 4 months. At 4 and half months it was changed to 'Post-Viral Fatigue' and so it remained until my last note before leaving work nearly 11 months post-onset.

    Both my workplace's Occupational Health doctor (7 months post onset)and the Cardiologist I saw privately(8 months post onset) re my POTS made a CFS diagnosis, & asked appropriate questions re PEM, sleep and cognitive problems.

    So not just Scotland.
     
  8. Andy

    Andy Committee Member

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    21,810
    Location:
    Hampshire, UK
    alktipping, Gecko, sebaaa and 10 others like this.
  9. Trish

    Trish Moderator Staff Member

    Messages:
    51,871
    Location:
    UK
    Well for the sake of post covid patients, I hope they aren't being sent to the service run by Chalder and co. They still do CBT based on false illness beliefs and increasing exercise and are oblivious to the harm they are doing and lack of success of their treatment, if their latest publication is a fair representation of their thinking.
     
    alktipping, Wits_End, Gecko and 14 others like this.
  10. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    Oh.

    I never thought of that as an upside - current ME/CFS services too busy to push harm on ME patients.

    Just as long as people don't start.demanding more services. The last thing we need is more of the same.
     
  11. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,674
    Location:
    UK
    My understanding is that whilst they may be 'oversubscribed' that this is simply because they shut almost all of them when it emerged that many people didn't want them and wouldn't use them, at least past the first couple of visits.

    The remaining ones, e.g. my local one, is in the middle of nowhere, only accessible by car - so far from ideal for anyone who's beyond 'mild', or with cognitive issues (one of the required symptoms to attend lol), or who doesn't have someone able and happy to run them around and sit waiting for hours in a car park.

    It might as well be on top of a mountain in Switzerland for all the good it would do me, even if they, y'know, actually operated under a more 'enlightened' philosophy.
     
    alktipping, MEMarge, MeSci and 6 others like this.
  12. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    The only basis that would be worth anyone’s while is if there was a genuine overhaul of their approach. Of course there’s likely to be some degree of revamping IF the ME guidelines change next year. The battle after the guidelines will be over the manual. And the one after that will be how the manual is put into practice.

    Meanwhile it would be interesting to see how these long Covid patients were handled given the NICE statement about GET. I can just hear “we don’t do GET anymore, at least not based on PACE so we don’t need to change anything.” But I wouldn’t wish it on anyone without informed consent due to the risks.
     
    Last edited: Aug 10, 2020
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  13. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Headbangingly frustrating.

    All this time, effort and energy, the main burden being on the very ill and their carers, to try to stop what is essentially a sham treatment that hurts more people than it helps.

    Except where therapists fly under the radar and do what's needed to help the individual (& I can't hold it against them), who then believe they've undergone a treatment that hdlped. Except it wasn't that treatment but the therapist can't say that.

    If even half the energy and hardship had gone towards properly conducted and rigorous research we might be in an entirely different place by now.

    :banghead::banghead::banghead::banghead::banghead:
     
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  14. JellyBabyKid

    JellyBabyKid Senior Member (Voting Rights)

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    179
    Update: I have had a lovely email from the New Scientist. They don't tend to report on project launches, preferring to report on results. They have made a note to keep an eye on this project.
     
  15. Andy

    Andy Committee Member

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    21,810
    Location:
    Hampshire, UK
    Great work, thank you. :thumbup:
     
  16. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Last edited by a moderator: Aug 11, 2020
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  17. Andy

    Andy Committee Member

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    21,810
    Location:
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    Podcast. I've not listened to it.
    https://www.theguardian.com/news/au...haul-why-are-some-patients-not-getting-better
     
    EzzieD, sebaaa, Michelle and 8 others like this.
  18. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Scotland was well on the way to using the CC for ME until they received a letter from the head of the neurologists in Scotland who said that neurologists would not use the diagnosis and a letter form the head of the GPs saying they would not use the diagnosis either (Can't remember the exact organisations)

    Completely coincidentally that would be Michael Sharpe and Clare Gerada.

    It astounds me when they say that children don't infect adults because they are too low to the ground! Have they never spent any time round children? My experience is that they crawl all over you, hang round your neck, want picked up, poke their fingers in your nose, ears and mouth and give you big sloppy kisses.

    Phased onset ME is a very good description. For many of us there was an initial infection but then things got worse with other infections and life events over the years. (One reason I am afraid of covid taking away the abilities I have left.)

    It is not a big leap to thinking that many gradual onset cases were from a mild infection. Ramsay felt that subclinical infections could cause ME.

    I don't know if the science is valid or not but we might not notice we have infection if there are none of the consequences of an activated immune system such as fever and so on. But if there is not a strong immune response then the virus can get places where the immune system can't detect it. I have seen people talking about covid speculating that the virus is hiding from the immune system in the nervous system and the testicles.
     
  19. mango

    mango Senior Member (Voting Rights)

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    2,505
    Shinygleamy, Kitty, sebaaa and 6 others like this.
  20. rvallee

    rvallee Senior Member (Voting Rights)

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    Location:
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