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

I get this on a lot of nights when I go to bed, it feels as if the blood pressure in my arms is markedly different from that in the rest of me.

It can become very intense if ignored.

It does happen at other times but when in bed, trying to get to sleep, it's much more difficult to deal with, and get to sleep.

It's the main reason I have to take painkillers.

(It's noticeable now, sitting up on the sofa, but in this position it largely doesn't interfere with what I am trying to do.)

 

It would definitely give useful data. However, if it wasn't part of her initial plans, it might add a lot to the costs.
Anyway, I don't think I will get involved in passing on specific suggestions to her, at least at this stage. I think you are on Twitter, so you could always reply to her under her tweet that mentioned me.

 

@Wonko does it feel like there are rubber bands wrapped around your arms?

 

Not noticeably no.

It's more like enough blood doesn't get through my shoulders, leading to low pressure in my arms - buzzing, a type of pins and needles I suppose, initially just in my palms and fingertips. constriction around the top of my biceps, altered sensation from there upwards to my shoulders that after a few minutes is perceived as pain - there's more but that's the basics.

It starts with the buzzing in my fingers/palm, and an 'odd' sensation in my shoulders, and escalates.

 

https://twitter.com/user/status/1262439844099301377

 

i'm impatiently waiting for "the moment" when the medical world consider the obvious,
and realise they've been abusing patients (not just us), and MUST reduce their own bias.

and i'm crying for all the lost lives, and abuse, we have all endured.

 

https://twitter.com/user/status/1262773414550482945

 

but presumably your tests show that you are 'free' of the virus. The same as when I had some virus followed by pneumonia; ie the tests were negative, the x-ray was clear, and yet I was still having symptoms (not just 'fatigue') months later and subsequently diagnosed with PVFS. Which is exactly how acute onset ME develops.

 

Thanks to @Njc36 we have managed to get a section in the World Confederation for Physical Therapy briefing paper on rehabilitation and the role of physiotherapy - see page 7
https://www.wcpt.org/sites/wcpt.org...COVID19-Briefing-paper-2-Rehab-PT-May2020.pdf

 

I’ve had glandular fever, my ME got much worse after that. This is something else. Too soon to say it’s ‘post’ about a totally new virus or to compare to other ‘old’ viruses. And in what way our bodies will be chronically affected and when (if). The most common symptom (and damage to) is from the lungs.

 

Some of the accounts of post covid-19 patients and their flare-ups/relapses remind me of ME. It will be interesting to see if they recover completely after six months. If not, it might be that they, like us, have permanent post infection complications, PEM - exertion bringing on a repeated worsening of symptoms.

Their symptoms are related to the type of infection with covid-19. If they end up with PEM- ME experience, I find that interesting in that it would explain how those of us with ME can have some different symptoms to each others experience due to the type of infection or causative experience that caused the onset of their ME but are still experiencing PEM?

I haven't read all this thread so please excuse me if I am way of beam of what has already been discussed.

 

Being as cynical as possible:

With examples of post-viral fatigue it seems that most go on to eventually recover, while some do not. A potentially disadvantage (for us) of people adopting a label like PVFS/ME/CFS early on is that we could then be flooded with anecdotal reports about how doing [whatever they were doing at the time] led to recovery from PVFS/ME/CFS.

Hopefully those suffering long lasting symptoms from COVID-19 will be particularly likely to go on to recover, but given the problems surrounding PVFS/ME/CFS research, I can see that almost any outcome could end up being viewed in a way that causes problems for other PVFS/ME/CFS patients. We know that some less than impressive people with a history of spin are now getting funding for researching this area.

 

I'm concerned about this too. Like pre covid when so many people say "I had ME for 4mnths/1yr after 'X', but then they took more vitamins/did more exercise/pushed themselves/went cold water swimming/various woo practices.... and so clearly that is the cure for it. When the most likely thing is that it was self limiting anyway.
I hope all these suffering people will recover, but now it's been linked to ME/CFS, what will happen to us as a result of them recovering, when they do.

 

Is this exertion in the physical sense only, or exertion in the ME sense, e.g. holding a conversation, watching TV, trying to do a puzzle as well?

 

"The most notable thing for me is that everybody is noting that protracted COVID symptoms are exacerbated by exertion. These symptoms include chest pain, breathlessness, sore throat, muscle aches, dizziness, fatigue, increased temperature, malaise, and a whole range of others".

Sounds like post viral syndrome. Why is this notable? PVS can last for months.

 

FWIW:

https://blogs.bmj.com/bmj/2020/05/19/paul-garner-covid-19-and-fatigue-a-game-of-snakes-and-ladders/

 

Critical patients with COVID 19 exhibit a marked reduction of CD3 CD4 and CD8 lymphocytes as well as an increase in IL-6 and IL-8.
https://www.nature.com/articles/s41586-020-2355-0_reference.pdf

So have I and a virologist wasn't too concerned about it. My ratios were increased.

 

If abnormalities found in ME/CFS are found in clearly defined (post-)Covid-19 patients, that could be convincing for some people in the medical and scientific communities.

 

https://twitter.com/user/status/1263190964836974593

https://www.youtube.com/watch?v=0FxkRrTAZ2k