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New Video: Long Covid, Post Viral Fatigue Syndrome and ME/CFS

Discussion in 'Resources for Health Professionals' started by Adam pwme, May 20, 2021.

  1. Adam pwme

    Adam pwme Senior Member (Voting Rights)

  2. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Nearly 1 in 7 people with COVID-19 have symptoms lasting 3 months or longer. Over a million people are thought to have Long COVID in the UK [1]. These people are often young, previously healthy, and had relatively mild symptoms at onset [2]. Long COVID covers a large and diverse group of patients in terms of clinical presentation, severity, fluctuation, and causal factors [3]. Research suggests Long COVID may be up to four different syndromes which some patients might be experiencing simultaneously [4].

    “If you look anecdotally there is no question that there are a considerable number of individuals who have a post-viral syndrome” [5]. Research that monitored people over time found that many people with Post Viral Fatigue Syndrome recover within a year of the initial infection [6].

    In a small minority of cases patients can go on to develop ME/CFS, a complex multi system disease often triggered by a virus or infection [7]. Preliminary research into Long COVID suggests there are many overlaps with ME/CFS [8]. A significant number of people with Long COVID could meet the diagnostic criteria for ME/CFS [9].

    The hallmark symptom of ME/CFS is that even minimal exertion can cause a flare in symptoms and a reduction in physical capability (a crash) that can last for days, weeks or even months. In a large survey of Long COVID patients a high proportion reported that they experience Post Exertional Malaise and suffered relapses after activity [10].

    It is vital that researchers and clinicians who treat and study Long COVID patients understand ME/CFS diagnostic criteria and management advice [11]. For over 20 years ME/CFS patients have been recommended Graded Exercise Therapy a controversial treatment where physical activity is gradually increased over time. Patient surveys consistently report that Graded Exercise Therapy makes over 50% of patients with ME/CFS worse. Some never recover [12]. After an extensive 3 year review, NICE dropped Graded Exercise Therapy from their draft guidelines for ME/CFS because of improved standards for evidence and concerns about harm [13].

    A growing number of patients with Long COVID are experiencing adverse effects from exercise therapy [14]. Physiotherapy that might work for one group of Long COVID patients may end up worsening another. The challenge is to identify those who experience Post Exertional Malaise and avoid worsening the condition [15].

    To help manage their energy and avoid Post Exertional Maliase patients should practice Symptom Contingent Pacing because activities are driven by symptoms and are not fixed or gradually increased [16]. Both physical and mental activities should be carried out in small manageable chunks with a period of rest or relaxation in between. Approaches that utilize wearable heart rate monitors may also be effective [16].

    [1] https://www.ons.gov.uk/peoplepopula...coronaviruscovid19infectionintheuk/1april2021
    [2] https://www.theguardian.com/comment...virus-long-haulers-infectious-disease-testing
    [3] https://meassociation.org.uk/2020/0...he-management-of-post-covid-fatigue-syndromes
    [4] https://www.bmj.com/content/371/bmj.m3981
    [5] https://meassociation.org.uk/2020/0...ay-discussion-as-the-covid-19-crisis-deepens/
    [6] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1569956/
    [7] Physios for ME - PVF, PVFS and ME YouTube Video (8 mins 50)
    [8] https://www.mdpi.com/1648-9144/57/5/418
    [9] https://www.medscape.com/viewarticle/948223
    [10] https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2
    [11] https://www.meaction.net/2020/06/26/post-covid-research-clinical-care-must-include-me-cfs/
    [12] https://meassociation.org.uk/2017/0...e-least-negative-reactions-02-september-2017/
    [13] https://www.nice.org.uk/guidance/indevelopment/gid-ng10091
    [14] https://www.jospt.org/doi/10.2519/jospt.2021.0106
    [15] https://www.csp.org.uk/frontline/article/we-answer-your-questions
    [16] https://www.physiosforme.com/pacing
    Michelle, Louie41, Graham and 15 others like this.
  3. Hutan

    Hutan Moderator Staff Member

    Wonderful. I'm so impressed with your work @Adam pwme. You have managed to get across some complicated ideas very well. I hope the video is viewed widely.
    Louie41, Graham, Missense and 16 others like this.
  4. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Thanks Hutan. Much appreciated
    Louie41, Graham, sebaaa and 7 others like this.
  5. MEMarge

    MEMarge Senior Member (Voting Rights)

    Absolutely brilliant @Adam pwme, you have real skills compiling these videos. I will be sharing.
    Louie41, Graham, Missense and 8 others like this.
  6. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Thanks MEMarge that's nice to hear.
    Louie41, Graham, Andy and 5 others like this.
  7. Florence

    Florence Established Member (Voting Rights)

    What a great video @Adam pwme . Thank you for making it.
    Louie41, Graham, Andy and 4 others like this.
  8. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Thanks Florence
    Louie41, Graham, Andy and 3 others like this.
  9. Wyva

    Wyva Senior Member (Voting Rights)

    @Adam pwme Congrats, I think your video is quite a success because it has even made it into the Hungarian long covid Facebook group, with a very detailed summary of the content for those who can't speak English. (I had nothing to do with it, it was the admin of the LC group who worked on the summary.) :)
    ukxmrv, Louie41, Graham and 9 others like this.
  10. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Oh wow, thanks for letting me know . I've been worried about how it would go down with the LC community as there has been some pushback about the connections to ME.
    Louie41, Graham, Hutan and 6 others like this.
  11. Trish

    Trish Moderator Staff Member

    As ever I think you get it spot on, @Adam pwme. Very well done and thank you.
    Louie41, Graham, Hutan and 4 others like this.
  12. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Thanks Trish that's good to hear
    Louie41, Graham, Hutan and 2 others like this.
  13. Sisyphus

    Sisyphus Senior Member (Voting Rights)

    @Adam pwme

    If the long-term effect cohort is really one out of every seven who is infected, or even one out of every seven who showed significant symptoms, there should be millions upon millions of newly debilitated people.

    Due to the large number of cases which were mild and did not seek treatment and those which were not tested, a reasonable estimate is that the UK and the USA have already had well over a third of the population catch and clear the virus. In ballpark figures that’s about 5% who should now have long Covid. Does that square with the number of people who are either out on disability, or have sought (not psych-oops!) treatment for post viral syndrome?

    The new virus is remarkably well adapted to transmission between humans and to infecting multiple tissues in us, so it’s quite possible it has unusual effects. But I’m not convinced that one in seven are going on to long-term disability similar to what we have.

    PS Thanks for posting that video With an extensive list of references. That must’ve taken hours and hours.
    Last edited: May 22, 2021
    Michelle, Louie41, Graham and 2 others like this.
  14. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    I'm not sure tbh . The ONS figures seemed the most reliable. I think they took people who have LC as 3 months. Based on the studies of other post viral conditions and early LC reports most people will probably improve over time, and many will recover. So I don't think the 1 in 7 will be on long term disability, my hunch is only a minority of the 1 in 7 will develop ME.

    We need more research.
    Michelle, Louie41, Andy and 8 others like this.
  15. Kalliope

    Kalliope Senior Member (Voting Rights)

    Tweets from a lung doctor about the video:

    This is a very helpful video explaining the difference between post viral fatigue and ME/CFS. Important for HCPs treating #longcovid to understand the difference. The key - listen to your patient, don’t recommend treatment that will make them worse.

    Wish I’d known about this 3 months ago, I was in the mindset of pushing my daughter to do some exercise so she didn’t lose fitness or muscle mass. School plus walking there and back (no PE) caused bad relapse. Had no idea how detrimental it would be :(

    There’s a lot of work to do to raise awareness. I am so sorry it’s taken thousands of health professionals (or their family members) to develop ME/CFS before this condition has been ‘seen’. I will do my best to help be the change.

    oldtimer, Michelle, Louie41 and 11 others like this.
  16. Graham

    Graham Senior Member (Voting Rights)

    Clear, concise and can't think of a clever word beginning with "c" to say that it was- paced just about perfectly. I'd certainly put it on my Facebook page if I could. Remind me at the end of July!
    MEMarge, Michelle, Louie41 and 5 others like this.
  17. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Thanks Graham :)
    MEMarge, Graham, Louie41 and 3 others like this.

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