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

That made me cry, my lovely life vanished in 2002, it really was so very lovely. I do hope that for you Paul, and all the thousands of other long haulers, that it turns out to be the former

 

https://twitter.com/user/status/1302222561426710533

 

In between he also says something like: “I know a doctor who went back to work at 4 months to prove to himself he didn’t have chronic fatigue”.
He says it disapprovingly. Reading between the lines, it sounds like it didn’t go well but I didn’t listen to any more.
Exact transcript:

 

Meanwhile nearly all the rehabilitation programs are obsessed with exercising people back into help, "stimulating" them, "motivating" them. Without any consideration for the possibility that it may be wrong, all based on the assumptions that patients "should" recover with this help (though if they don't clearly the treatment can't be blamed, no, all power, no responsibility, this is the serious adult way to do things, obviously).

I really want people to state their hypotheses and/or assumptions on this, because there is no basis for them. Many COVID-19 patients had a very mild illness, some were even largely asymptomatic, many basically did the exercise-back-to-health thing on their own, like most of us with ME did, because it's freaking common sense. So why? Why is the assumption that exercise is the answer when it has nothing at all to do with the problem? You have to be bed-bound for at least a few days, if not weeks, in order to be genuinely deconditioned. Especially true with people who are fitness enthusiasts. I've lost track of how many accounts I've read of people who basically run marathons per week or bike hundreds of km just for fun.

Because this requires a serious system-wide reexamination of how medical evidence comes about. That something this ridiculous is subject to so much misplaced obsession reflects deep problems in how medicine thinks. Just generally thinks, not specifically about this but in general. It took literally every single step in a decades-long process to completely fail to arrive at this. This is not normal. Failure is not supposed to be an acceptable norm and infinite tolerance for catastrophic failure is just about the worst thing a field of expertise can do.

And for this, most of the blame lay directly at the feet of some of the most prestigious institutions: KCL, The Lancet, Cochrane, BMJ, Oxford university, the NHS along with many national medical authorities and various appendages of medical evidence like Mayo clinic, UpToDate, the CDC and NIH and so many more. This was not fringe peripheral failure, it was central failure. Not bad actors, a bad system all-around.

 

https://twitter.com/user/status/1302303619807666176

https://twitter.com/user/status/1302310058550792193

 

Are they stuck on the myth that exercise 'improves and boosts the immune system" along with a healthy diet? Because it doesn't when you're ill or healthy.

 

I don't think so. Every time I read those comments they seem more aligned with the idea of a mix of deconditioning mixed with some depression, so pretty much literally the PACE model.

I have seen comments saying it could prevent those who haven't been infected, with the optimizing the immune system thingy, but for rehabilitation it's always the deconditioning/motivation bit.

 

I haven't stopped my daily reading of the COVID19Positive sub-reddit (and its more recent long-haulers dedicated one) and although it's less interesting because most of the discussion moved to Facebook groups, which I avoid, there are still some interesting threads.

Like this one. Really looking forward to the updated Body Politic report, the first one still remains the single best piece of research on the topic so far, but this gives some insight into those who are pretty much at the 6 months mark and who "should" have recovered, according to people who don't know what they're talking about anyway.

Code:

https://old.reddit.com/r/covidlonghaulers/comments/in0ywi/day_177anyone_out_there_this_long/

 

I've seen both, particularly with moderate exercise.

 

I'm just thinking that deconditioning might not be one global unit. In other words cardio deconditioning will be different from muscle wasting in terms of how long that takes both to decondition and recover. There doesn't seem to be a lot of consensus on how long deconditioning takes although when I looked it seemed to be months rather than days for any measurement of note to change. This would be for a normal healthy person.

It's getting so tiresome to see so-called 'experts' spout opinions like they are facts because they support notions that bolster a preferred ideology.

Close observation is important. Accepting the interpretation of the person experiencing what is observed is not happening because psychiatry thinks everybody is making things up. Except for them of course. Which brings us to the question . . . can you get PEM from too much eyeball rolling.

 

Physical deconditioning follows a logarithmic type trend (with a fractional base) where the "equilibrium" level of conditioning is based on the weekly intensity peaks (muscle strength or cardiovascular demand). The initial deconditioning does occur fairly quickly, within a few weeks but slows down as the body adjusts to the new level of activity. Severe deconditioning only occurs when the individual is entirely bed bound and does not spend any time sitting/standing. If healthy and not severely deconditioned, the prior level of fitness can be regained relatively quickly too. Sedentary participants (mostly healthy) doing modest cardiovascular training can increase their VO2Max by 10% in a month for example.

 

Who is going to be the one to tell Paul that his failure to recover is due to his pre-existing psychological vulnerability? It's there. In black and white. Who could cast doubt on research funded by the US Army Chemical Corps?

 

The Icelandic newspaper Visir had an article yesterday about post covid-19 and possible connection to ME:

"This is a multifaceted disease whose common symptom is excessive fatigue, but there are a number of other symptoms that appear. I do not think I trust myself to discuss the connection with it yet, but on the other hand there are certain indications that there may be a connection between them, so it is clear that covid is much more than the usual flu, as perhaps many were planning earlier in the beginning, "said Pétur Magnússon, CEO of Reykjalundur.

(Reykjalundur is a rehabilitation center)
...

The chairman of the ME association says that there are examples of people who became infected with the corona virus having contacted the association due to chronic fatigue.
"People are waking up to the fact that they may get ME disease following Covid19," said Guðrún Sæmundsdóttir, chairman of the ME association.

Dæmi um að fólk sé óvinnufært vegna síþreytu eftir kórónuveirusmit
Google translation: Examples of people being unable to work due to chronic fatigue after corona illness

 

There's another issue here too. If we were all deconditioned we be at a certain level of ability all the time. I know for a fact that I'm not deconditioned or even unfit because my ability to move varies wildly; one day I can walk for ten minutes with no problem then hit a bad patch with the m.e and struggle to walk for a minute, then suddenly a week later walk better again. Deconditioning and fitness level does not explain this phenomena.

 

This is such a good point that had never occured to me! I will use that next time sb wants to un-decondition me.

 

The intersection of medical problems with socioeconomic factors is not exactly a shining spot. Maybe that will motivate that change but... historically... big ooooof.

 

For the first 15 years of my illness, before I knew anything about ME and did not realise that other people did not struggle the way I did when I did them, I was fitter than many of my contemporaries. I did brisk walking for an hour every day at least, much of it uphill. I cut the grass, did all the cooking, cleaned the house, washed windows and played with the kids. By 9 o'clock I was often paralysed and blind and some days I could not move to get out of bed but I had been told I had migraine and I never associated these attacks with what I had done the day before.

I was neither deconditioned or sedentary.

I'm afraid that this common sense view has been twisted and used against us. "If ME patients are able to feel better at some times, they could feel better all the time if they wanted to" so it must be emotional not physical.

The BPS have their cake and eat it.