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yup. he did a good job! and there should be another big long-Covid and ME/CFS story in US this weekend. (not by me.) As seemed likely in the spring, the pandemic has brought new attention to ME/CFS.
That's in addition to the NYT magazine article?

https://www.nytimes.com/2021/01/21/magazine/covid-aftereffects.html

Despite the tense used to describe the failure, at times suggesting it was in the past, it's very well-researched.

Edit: looks like it is. Excellent article!
 
very long and many good bits; here's one
Rowe told me he is concerned that the health care workers who will be involved in the long-haulers’ rehabilitations won’t know what ME/CFS specialists have learned. He frets that physicians aren’t aware, for example, that too much physical exertion can drastically worsen symptoms. And he worries about the historical tendency to see the condition as psychological in nature.

That thinking led to an overemphasis on treatments like cognitive behavioral therapy or graded exercise therapy, he says, which have largely been abandoned as cure-alls for ME/CFS in the United States, but not without first doing great harm to patients. “It’s going to be extremely important not to make the mistakes that were made in the early ’90s,” he said at the meeting. As he put it to me: “I’m concerned that people haven’t learned the lessons of the past 25 years.”
 
January 28.



https://emergency.cdc.gov/coca/calls/2021/callinfo_012821.asp

For some people, the effects of COVID-19 can last well beyond the immediate illness. Patients and clinicians across the United States are reporting long-term effects of COVID-19, commonly referred to as long COVID. Symptoms may include cognitive difficulties, fatigue, and shortness of breath. In some patients, critical illness from COVID-19 may be the cause of persistent symptoms, but many patients with long-term effects had mild or asymptomatic acute COVID-19 infection. During this COCA Call, presenters will share their firsthand experiences with treating long COVID, focusing on the pulmonary, neurologic, and psychological aspects. They will also describe their experiences with establishing clinics that provide care for patients with these long-term effects.

Target audience is medical professionals.
 

Really good. Mother and 14 year old daughter both have long Covid and belong to a support group (presumably on line) for families with children with long covid. Not enough research or recognition of long Covid in children, GP's sending them away saying it's anxiety.
Then Nigel Speight talking about similarities to ME and the importance of pacing and not pushing the child to get back to activity.

Also a bit about the mother and daughter doing dietary treatments, but mainly recommending rest.
 
I have mentioned before that my husband had PVS after flu in the days before we knew anything about ME and never had any suspicion we could have the same illness. It was completely different in character to anything I had experienced.

Basically he was constantly exhausted, pale, and ill looking with no neurological problems though his thinking was muddy because of fatigue. Despite having to struggle to work he just started to pick up after about 9 months.

He had none of the variability of symptoms that was a cardinal sign of ME where he felt fine one day then collapsed the next. PEM is probably the most prominent of these variable things but most of my symptoms fluctuate.

My own belief is that a carful history from a competent, informed doctor could differentiate the 2 fairly soon after onset. Once we have a test I am sure that will be true.

PVS is a different disease from ME though it is possible for PVS to mask the symptoms of ME for the first few months if you have both. Like being exhausted after a viral illness but feeling better except you are left with asthma or coeliac disease.

There are plenty of anecdotal reports of people having the variability and cardinal signs that also recover at some point. There are also anecdotal reports of people with ME who didn’t have this in the beginning and had a pretty mild initial PVFS course only to get ME.

I don’t think there is any evidence to date that suggests to us subsets who are going to recover or not based on clinical presentation and time course other than the longer it goes on the lower the chances get.
 
feedback threads but wasn’t well enough.

I often wonder to what extent self-limiting PVF or PVFS from which people eventually recover overlaps with ME/CFS. Are they different degrees of the same thing? To what extent does appropriate management prevent PVF from becoming ME/CFS? Or is ME/CFS something altogether different, from which people don’t recover whatever approach they take. Or are there two or more types of ME/CFS – one which can result from wrong management of PVFS (from which long term recovery may or may not be possible) and one (or more) which is altogether different and can’t be reversed with any type of management? Or might they start off as the same thing and then some other factor or factors determine whether it becomes permanent ME?

We just don’t know enough to help us with these answers. I’ve wondered the same, like to me “self-limiting” does it mean no matter what management or lack thereof or what activity the person does will they still recover eventually no matter what? And for pwME no matter what we could’ve done early on would it have been hopeless?

Based on what I’ve read and seen, in scientific papers and anecdotal reports, I don’t think there are any differences in clinical presentation between those with PVFS who recover and those who don’t (ME/CFS) to suggest we would know ahead of time what’s going to happen to people. Maybe only the length of time it’s gone on without improving is suggestive of the probability of recovery.
 
Moved post responding to NYT article

I really hope that the Mount Sinai post covid center turns into a post-viral illness or ME/CFS center.

The article was very good exposure for us, especially to be front page (cover?) of NYT Magazine.

I think made a bit too much of theories, research and treatments that are only preliminary findings or not that useful in the case of treatments (like LDN, or saying that SFN can be treated).
 
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Developing services for long COVID: lessons from a study of wounded healers

Emma Ladds, Alex Rushforth, Sietse Wieringa, Sharon Taylor, Clare Rayner, Laiba Husain and Trisha Greenhalgh

https://www.rcpjournals.org/content/clinmedicine/21/1/59

Apparently, learning lessons does not involve learning lessons, even stubbornly rejecting that there are any lessons to learn from anything but this unique experience that has no comparables. Somehow. This is why we can't have nice things. Lots of navel-gazing but ultimately this could be an ME paper and not much would be different. Even when facing the same disbelief, they have to frame their disbelief as somehow different.

At least this confirms what people suspected:
Trisha Greenhalgh is currently sitting on the oversight group for the long COVID guideline at the National Institute for Health and Care Excellence
 
The demographic split could be due to long covid and ME/CFS intending to capture different things. Long covid just means "didn't recover quickly from covid 19", whereas ME/CFS attempts to define a disease.

They are presumably the chance that someone will have long covid, by gender.
 
The demographic split could be due to long covid and ME/CFS intending to capture different things. Long covid just means "didn't recover quickly from covid 19", whereas ME/CFS attempts to define a disease.

They are presumably the chance that someone will have long covid, by gender.
I'm doubtless missing something obvious, but given all the age groups are non-overlapping, why don't they total to 100%? And why do the two genders not total to 100%?
 
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