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

Which video? I admit I am not reading/watching/listening to each link now.

 

I suppose the interesting question is, who, or what, has informed Alwan's opinions about ME? Could the ME "experts" at Southampton have contributed to the formulation of her ideas on the subject? It would tell us something significant if they did. To whom has she spoken, or what has she read?

Clearly post covid is a "post viral syndrome". It covers a spectrum of disorders. One part of the spectrum seems difficult to distinguish from "post viral fatigue syndrome", which is what some, or many, of us were diagnosed as having. So what precisely is her objection?

 

From your post #1902. The tweet has a link attached with a video.

 

I feel like I have leprosy after reading how they view ME.

 

Thanks for replying. I can't see post numbers when I read messages online on my phone, so I'm guessing others can't either so here is the message:
https://www.s4me.info/threads/possi...covid-19-long-covid.14074/page-96#post-291349
It looks to me like an audio link rather than a video link so I'm still confused I'm afraid

 

@Dolphin

My apologies, yes it is an audio link (not video).

https://www.bbc.co.uk/sounds/play/m000mzms

 

https://twitter.com/user/status/1311234777299791873

https://twitter.com/user/status/1311284736028016640

https://twitter.com/user/status/1311316397184745472

Encouraging to get a re-Tweet from Jane Garvey (presenter of BBC Woman’s Hour):
https://twitter.com/user/status/1311317170366959617

 

Yes, I think long-covid sufferers are going to need a history lesson on ME and psychiatry.

 

The Radio 4 link led me to Alwan's original blog, from which some understanding can be gained.

What is now becoming clear is that mortality is not the only adverse outcome of this infection and our surveillance systems must keep up and reflect that. I am advocating for precise case definitions for covid-19 morbidity that reflect the degree of severity of infection and allow us to measure moderate and long term health and wellbeing outcomes. At this stage of the pandemic, it is vital that we accurately measure and count all degrees of infection, not only in research cohorts, but as part of population-based routine surveillance systems. This includes people like me who were not tested at the time of their initial infection. Death is not the only thing to count in this pandemic, we must count lives changed. We still know very little about covid-19, but we do know that we cannot fight what we do not measure.
https://blogs.bmj.com/bmj/2020/07/28/nisreen-a-alwan-what-exactly-is-mild-covid-19/

That seems to end with a simple fallacy. It is perfectly possible to fight what one does not measure. It is merely more difficult to know whether one is winning. But, as Robert McNamara found, you have first to know what it is important to count. He said "Count what is important, do not make important what you can count", but may have lost the war from relying on body counts. He supposedly thought them all that mattered.

It looks as though Alwan wishes to make important what she thinks might be countable. That may have limited importance. It seems unlikely to be helpful.

And good luck with accurate measurement of all degrees of infection.

 

I have heard a lot of people in the ME/CFS community over the years we need to know exactly how many people have it. I don’t feel it’s a priority and it is going to be hard anyway to be accurate without easy diagnostic tests and where at the milder end, things are not very clear cut.

Also accurate prevalence figures can be lower as well as higher than existing figures. Lower figures don’t necessarily help.

 

I looked up lymphadenopathy and it mentions night sweats and enlarged spleen as well as the tender nodes. I get the night sweats but I also get a pain that feels as if there is not enough room under my ribs that I am beginning to wonder is an enlarged spleen.

To be fair my GP did blood tests for the night sweats and enlarged nodes, but they came back normal. I have come to conclude that our tests are normal because we do not get them done when the symptoms are showing.

Something, possible a demand for ATP that can't be met at that moment, causes symptoms but when the demand goes everything works normally so the tests say nothing is wrong.

It happens with cars so it could happen to us!

I wonder if that will happen with covid.

 

I've seen many anecdotal reports but nothing formal. It is however reported. But then again so is exertion intolerance and most medical authorities are still clueless about it so not a surprised they'd miss something seemingly trivial (I assume?).

 

Same. I've read thousands of accounts of ME over the years. I've read thousands of post-COVID over the last few months.

No doubt in my mind. There is additional stuff particularly to COVID but the overlap is no less than 90% and ME likely explains most of the severe symptoms for most of the patients.

 

The implication seemed to be that it is excessive rest that causes ME. So, basically the exact opposite of reality. Missed it by the whole field.

 

Kind of hard to recognize a lion when this is how it has been described to you:



Although that's probably not fair, that is 10x closer to a lion than the BPS version of CFS is to ME.

 

To get an idea of the perception of long Covid in the general public, one of the studies got a lot of attention on the worldnews sub-reddit.

There is some healthy respect for the most part, even some appropriate respect for how serious ME is, or at least "post-viral fatigue". Some dismissive attitudes but not too much. There is usually some outright denial but haven't seen much there.

90 percent of coronavirus patients experience side effects after recovery, study finds : worldnews

 

Plus ça change...

https://twitter.com/user/status/1311226331473096707


The abuse of language is one of my personal pet peeves in this. There is no shared understanding without a shared vocabulary and there can be no shared vocabulary with people who use language as a weapon in a statutory setting they fully control and intend to abuse.

As for whole-body shutdown... it's often called partial paralysis. Very difficult to describe. Again, basic vocabulary failure. So much basic vocabulary failure.

 

Reminder that this is the person who wrote this:
https://twitter.com/user/status/1292186331330891776


If she was just a random patient on the Internet, I probably wouldn't bring it up.
But she co-authored this preprint:

https://wellcomeopenresearch.org/articles/5-224

 

A colleague of mine had the rather useful phrase 'has an inflated idea of their own importance'.