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The video is so eerily reminiscent of my experience. The women at the end says that she doesn't like telling people how she's feeling on any particular day because she doesn't want to disappoint herself or others when they ask how she's doing.:emoji_rolling_eyes: I eventually stopped telling everyone how I felt because they wanted me to get better . . . soon.
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?
 
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.
 
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 think I saw “lymphadenopathy” at one stage.

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.
 
ah. I understood the doctor differently. He was concerned about this turning into something chronic, as that is more difficult for doctors to "untangle", but I did not get the impression that he meant it came down to lack of exercise. It did seem to me that this doctor had understood some basic key aspects.
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.
 
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?
Kind of hard to recognize a lion when this is how it has been described to you:

5pgr4hxkrz221.jpg


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



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.
 
Plus ça change...


Reminder that this is the person who wrote this:


If she was just a random patient on the Internet, I probably wouldn't bring it up.
But she co-authored this preprint:
Why the Patient-Made Term 'Long Covid' is needed [version 1; peer review: awaiting peer review]
Elisa Perego1, Felicity Callard , Laurie Stras , Barbara Melville-Jóhannesson4, Rachel Pope , Nisreen A. Alwan
https://wellcomeopenresearch.org/articles/5-224
 
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