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

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leokitten said:
I’ve wondered if ME doctors would do a trial of drugs like pentoxifylline or cilostazol (normally for peripheral artery disease), especially pentoxifylline as it has some potent anti-inflammatory and immunodulating properties. They are both generic and cheap drugs too.
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I'm not convinced either will treat the problem that I'm thinking of very well, since they are fairly non-specific.
 
chrisb said:
I have every sympathy with those GP's who have lost their jobs. Many of us will recall the difficulties in which they will find themselves. Prof Delaney needs to recognise that people other than GP's will be similarly affected.
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Hopefully he will revise his old books because Delaney has authored a book with this:

Psychological interventions for non‐ulcer dyspepsia, by: Shelly Soo, Paul Moayyedi, Jonathan J Deeks, Brendan Delaney
Patients with functional medical conditions may suffer from psychiatric disorders and CBT has been found to be effective in the treatment of patients with unexplained physical symptoms and chronic fatigue syndrome. Stress management or behavioural therapies have also been beneficial in irritable bowel syndrome and peptic ulcer disease.
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CBT has not, in fact, been found to be effective for anything related to CFS or any similar condition. Truly nothing beats the experience of living illness to understand it. But if medicine genuinely cannot do this then the whole social contract needs to change here. 100% chance that without Marshall, peptic ulcers would be a "functional" GI disorder. And no one seems bothered by this. Amazing.
 
Almost a year in and everyone is still anchored on "rehabilitation" with exercise. No one is learning a damn thing. It should work and it must work and so it will be made to work. So many similar programs have been attempted already with no success, that information is clearly not being shared. Better repeat the same mistake hundreds of times in parallel just to be sure, that's how you escalate commitment.



And of course trying the wrong thing for the wrong reasons gets you a bunch of "brilliant!" and "fantastic!" praise from the echo chamber. Why? Who knows. Apparently medicine is so all-in on merging with alternative medicine that just trying is all that counts. Just try, try anything, it's all about attitude anyway. :banghead::wtf:

Edit: at least some are paying attention and sharing their observations:

 
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How has there still not been a follow-up study on the SARS survivors yet? It's been less than 20 years, most are probably still alive. How much work would that even require? The data would be skewed for those hospitalized but that's what we have to work with. The chances that there were no mild cases that did not require hospitalization is unlikely, no reason to think it was that radically different from Covid.

Lots of people are referring to them and I see many comments in the LC community that most "recovered" by 12-24 months. Just as recovered as long haulers are, we know the definition is invalid. So what happened to them? I'm sure many would be happy to answer that.

This is really basic stuff and yet no one seems to be thinking about it. I don't get it, it's even super cheap to do.
 
I had a search but I don't think this has been posted.

Preprint: Characterising long-term covid-19: a rapid living systematic review, 2020, Michelen et al
Objective To understand the frequency, profile, and duration of persistent symptoms of covid-19 and to update this understanding as new evidence emerges.

Design A living systematic review produced in response to the rapidly evolving evidence base for ‘long covid’.

Data sources Medline and CINAHL (EBSCO), Global Health (Ovid), WHO Global Research Database on covid-19, LitCOVID, and Google Scholar to 28th September 2020.

Study selection Studies reporting long-term symptoms and complications among people with confirmed or suspected covid-19, both in those previously hospitalised and those never hospitalised. Only studies incorporating over 100 participants qualified for data extraction and were assessed for risk of bias. Results were analysed using descriptive statistics.

Quality assessment Risk of bias was assessed using a quality assessment checklist for prevalence studies.

Results Twenty-eight studies qualified for data extraction; 16 of these were cohort studies, ten cross-sectional, and two large case series. The analysis included 9,442 adults with covid-19 from 13 countries. The longest mean follow-up period was 111 (SD: 11) days post-hospital discharge. A wide range of systemic, cardiopulmonary, gastrointestinal, neurological, and psychosocial symptoms was reported, of which the most common were breathlessness, fatigue, smell and taste disturbance, and anxiety. Persistent symptoms were described across both previously hospitalised and non-hospitalised populations. The quality of evidence was low, with a high risk of bias and heterogeneity in prevalence. The incorporated studies demonstrated limited external validity, a lack of control subjects, and inconsistent data collection methods. Few studies were conducted in primary care, no studies focused solely on children, and no studies were set in low- and middle-income countries.

Conclusion Our findings suggest that ‘long covid’ is a complex, heterogeneous condition; however, the limited evidence base currently precludes a precise definition of its symptoms and prevalence. There is a clear need for robust, controlled, prospective cohort studies, including different at-risk populations and settings, incorporating appropriate investigations, collected and recorded in a standardised way.
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https://www.medrxiv.org/content/10.1101/2020.12.08.20246025v1.full-text
 
Andy said:
I had a search but I don't think this has been posted.

Preprint: Characterising long-term covid-19: a rapid living systematic review, 2020, Michelen et al

https://www.medrxiv.org/content/10.1101/2020.12.08.20246025v1.full-text
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Only one mention of CFS:

Indeed, the NIHR has suggested that post-acute covid-19 may include any of several distinct clinical syndromes including: a post-intensive care syndrome, chronic fatigue syndrome, long-term covid-19 syndrome and disease from SARS-CoV-2 inflicted organ damage. [12]
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I recognise Claire Hastie and Jake C. Suett from the UK. The latter is a medical doctor. Both took part in the parliamentary group meeting where they were keen to keep long Covid separate from ME or CFS.
 
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rvallee said:
Long Covid page on Physio-pedia. No idea how big physio-pedia is within the profession but pretty decent overview. Appears to have been written by the physios who make up this group: https://twitter.com/LongCOVIDPhysio.

https://physio-pedia.com/Long_COVID
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Kalliope said:
Seems to be quite big. Physiopedia presents themselves on Twitter with: UK registered charity. The largest physiotherapy resource in the world
They have 47K followers on Twitter and 79K on Facebook.
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Since the editors of this Long Covid page seem to have a reasonably good understanding of ME I went looking to see what Physiopedia had on ME/CFS. Lets put it this way: let's hope none of their tens of thousands of followers find this page any time soon. If there are any physiotherapists or physical therapists (requirement to become an editor) here with spare energy, it really could do with some work, it's a random mash up of the good, the bad and the ugly.

https://physio-pedia.com/Myalgic_Encephalomyelitis/Chronic_Fatigue_Syndrome
 
Ravn said:
Since the editors of this Long Covid page seem to have a reasonably good understanding of ME I went looking to see what Physiopedia had on ME/CFS. Lets put it this way: let's hope none of their tens of thousands of followers find this page any time soon. If there are any physiotherapists or physical therapists (requirement to become an editor) here with spare energy, it really could do with some work, it's a random mash up of the good, the bad and the ugly.

https://physio-pedia.com/Myalgic_Encephalomyelitis/Chronic_Fatigue_Syndrome
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@PhysiosforME
 
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