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

I know this is getting off topic, but a description of pentoxifylline properties:

Here is a description of the mechanisms of action https://www.ncbi.nlm.nih.gov/books/NBK559096/

Given it’s anti-inflammatory and immunomodulating properties it also improves red blood cell deformability and blood viscosity. Ron Davis and co published that paper on reduced blood cell deformability in ME/CFS

Red blood cell deformability is diminished in patients with Chronic Fatigue Syndrome

@Jonathan Edwards what do you think about pentoxifylline?

 

Pentoxifylline has been around since about 1980 and has always had a reputation for being a drug that does a little bit of everything and a lot of nothing. It has been handed out in desperations to millions of people over the years. If it had any major role in something like ME someone would have noticed thirty years ago.

 

Does cold water immersion have merit as treatment for poor microcirculation?

 

Cold therapy was a thing for a while in ME. I did it myself, though not the standard version. I am not sure why we didn't hear more. I am guessing that most docs who were using it were not using it in properly designed clinical trials.

 

Is the Polish group affiliated to Karl Morten not doing some form of cold water therapy ?

 

They wanted to try cryotherapy (sitting inside a very cold and dry freezer, essentially) but I'm not sure that they got anywhere with it.

 

Metro UK: What is long Covid? Why some people aren’t recovering from coronavirus

 

I'm not convinced either will treat the problem that I'm thinking of very well, since they are fairly non-specific.

 

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

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.

https://twitter.com/user/status/1346514078236340231


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.

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

https://twitter.com/user/status/1346883999394885633

 

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

https://www.medrxiv.org/content/10.1101/2020.12.08.20246025v1.full-text

 

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]
—-
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.

 

https://twitter.com/user/status/1346860805749415936


https://twitter.com/user/status/1347175465077846026

 

https://twitter.com/user/status/1347152558087925762


https://twitter.com/user/status/1347206885804535814


More on this thread:
George Monbiot: UK journalist and environmentalist, writing about ME/CFS and long covid.

 

https://www.clinicaltrialsarena.com/news/company-news/aim-doses-first-patient/

 

Safe to say that links were definitely given. Well done.

 

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

 

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.

 

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