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

[Dx Revision Watch]

Page 27 today's TIMES print edition.

Online (reg required):

https://thetimes.co.uk/article/covid-is-not-the-only-killer-i-should-know-v3kd7s05x

Covid is not the only killer — I should know

Let the vulnerable shield and the rest go free before missed cancers (as mine might have been) and lost jobs ruin more lives

Libby Purves, Monday October 19 2020

'...Rather there is chin-stroking about the globally tiny minority whose weariness lasts some time after recovery and is fashionably defined - before any rigorous analysis - as "long Covid".'

Where to start?

 

[rvallee]

https://news.sky.com/story/long-covid-the-debilitating-after-effects-of-coronavirus-12104961

I didn't know Dr Strain, but his claim that for CFS "most patients go on to lead very normal lives but they have to be wary that if they have a relapse they have to go back into the programme we run" seems difficult to support.

He replied. Not convincingly. No idea where that number comes from, it's probably based on idiopathic chronic fatigue.

 

[rvallee]

The BMJ - Long covid could be four different syndromes, review suggests

A team of researchers and doctors reviewed current evidence and interviewed post-hospitalised and non-hospitalised patients and reported that long covid did not seem to fit as one syndrome. They suggested that people experiencing long term effects of covid-19 may have different syndromes such as post-intensive care syndrome, post-viral fatigue syndrome, and long term covid syndrome.

Response: https://www.bmj.com/content/371/bmj.m3981/rr-0

Dear Editor

Although as a doctor-patient with long covid I am grateful for anything which raises the profile of this condition, this approach however raises some concerns.

This is a new virus. There is a lot we don't yet know about the mechanism of organ damage and how to diagnose it.

Also, post-viral fatigue is not, I think we can all now agree, a psychological problem. It is rather an under researched complication of viral illness with massive overlaps with dysautonomia and MCAS.

It is perfectly possible post-covid to have a scarred myocardium from myocarditis, ongoing fatigue and other classic long covid symptoms.

So, I think this division into four groups is worse than unhelpful, I think it's dangerous as it reduces curiosity and attempts to give comfortable and familiar, although meaningless, labels to those with, for example, predominant fatigue.

Instead we need to keep fighting to understand why this virus does what it does, and in so doing, we will surely unlock much of what has previously been labeled as CFS, MCAS and Dysautonomia. This pandemic is an opportunity to understand both this virus and post-viral conditions in general. Let's keep an open and curious mind.

Unfortunately not all do agree as otherwise their career will be over and there will be many legal repercussions. This is not a done deal. people will have to push for this, until then it will stand in the way.

 

[Kalliope]

He replied. Not convincingly. No idea where that number comes from, it's probably based on idiopathic chronic fatigue.

Also

 

[rvallee]

Also

Honestly this comes across as someone who wants to do better but is hindered by the mass of confusion brought by BPS fanatics, who tend to adopt a language that leaves no room for the fact that they are perfect and we are wrong. They don't show any contrition and he seems sincere in that.

But this definition of ME and CFS is just plain wrong, roughly the idea espoused by Lloyd of a spectrum of fatigue and ignores all other symptoms. There is a spectrum but not on those definitions. Ugh. I doubt he would be as confused had it not been for the domination of the CBT/GET paradigm. Without a test, it's all so difficult to really know.

Maybe he can be nudged the right way by fellow professionals? We need a bat-signal for @PhysiosforME, you must be so busy these days!

 

[Dolphin]

Honestly this comes across as someone who wants to do better but is hindered by the mass of confusion brought by BPS fanatics, who tend to adopt a language that leaves no room for the fact that they are perfect and we are wrong. They don't show any contrition and he seems sincere in that.

But this definition of ME and CFS is just plain wrong, roughly the idea espoused by Lloyd of a spectrum of fatigue and ignores all other symptoms. There is a spectrum but not on those definitions. Ugh. I doubt he would be as confused had it not been for the domination of the CBT/GET paradigm. Without a test, it's all so difficult to really know.

Some patients think something like this.
Also with strict criteria for ME, such as used in the International Consensus Primer, I think it's going to largely pick up people who are more severely affected on average.

 

[rvallee]

Interesting discussion over "rehabilitation" from Long Covid. Not entirely sure what "post-viral routine" means (it's later specified as standard care, which is nothing so...?) but the responses are encouraging in seeing the message getting through not to force patients to push through. It seems to suggest that rehabilitation is not a strategy for PVFS, which is actual significant progress.

If there's a critical mass of physical therapists who simply refuse to do GET when referred to by a GP, this is one good way to get the message across general practice that it's simply wrong. I'm not so convinced about how it can effectively be managed without medical recognition, sick notes and disability, however.

Discussion just started so there should be more replies over time but already many responses. You're rocking this, @PhysiosforME!

 

[PhysiosforME]

Interesting discussion over "rehabilitation" from Long Covid. Not entirely sure what "post-viral routine" means (it's later specified as standard care, which is nothing so...?) but the responses are encouraging in seeing the message getting through not to force patients to push through. It seems to suggest that rehabilitation is not a strategy for PVFS, which is actual significant progress.

If there's a critical mass of physical therapists who simply refuse to do GET when referred to by a GP, this is one good way to get the message across general practice that it's simply wrong. I'm not so convinced about how it can effectively be managed without medical recognition, sick notes and disability, however.

Discussion just started so there should be more replies over time but already many responses. You're rocking this, @PhysiosforME!

thank you - we tried to get the message out there! A few others were name checking us as well so fingers crossed making some progress

 

[PhysiosforME]

Honestly this comes across as someone who wants to do better but is hindered by the mass of confusion brought by BPS fanatics, who tend to adopt a language that leaves no room for the fact that they are perfect and we are wrong. They don't show any contrition and he seems sincere in that.

But this definition of ME and CFS is just plain wrong, roughly the idea espoused by Lloyd of a spectrum of fatigue and ignores all other symptoms. There is a spectrum but not on those definitions. Ugh. I doubt he would be as confused had it not been for the domination of the CBT/GET paradigm. Without a test, it's all so difficult to really know.

Maybe he can be nudged the right way by fellow professionals? We need a bat-signal for @PhysiosforME, you must be so busy these days!

I love this!

 

[NelliePledge]

Posts from this thread have been moved to new threads:

U.K. National Institute of Health Research review Living with COVID-19

USA National Institute of Health post covid management guidelines

 

[Tom Kindlon]

 

[Tom Kindlon]

 

[Andy]

Confirmed cases of coronavirus have recently surpassed 40 million globally, with deaths exceeding one million. Undoubtedly miserable statistics, but one thing they do illustrate is that the vast majority of those who fall ill with COVID-19 go on to make a recovery. As the pandemic rolls on, however, it’s becoming clear that this isn’t always as straight forward as it sounds. Enter: Long COVID, the name medics are giving to the curious cases in which coronavirus patients – usually those who suffered with a mild or moderate case of the bug – just don’t seem to get better.

If estimates made by the COVID Tracker app are accurate, it’s believed that around 12% of UK coronavirus patients suffer symptoms for longer than 30 days. One in 200 report the effects of the virus lasting for more than 90 days. Six months after the pandemic took grip in the UK, I spoke to four young women who are still battling with their symptoms, to find out more about the debilitating condition that’s even puzzling the experts.

https://www.cosmopolitan.com/uk/body/health/a34412641/long-covid/

 

[rvallee]

(Probably paywalled. I was only able to read the whole article from the Twitter link, will post the tweet below.)


These Doctors Have Long-Term Covid. Now They’re Pushing for Better Care.

https://www.wsj.com/articles/these-...-pushing-for-better-care-11603144474?mod=e2tw

Physicians hit hard by Covid are turning to support groups and calling attention to the illness’s long-term effects; ‘this has absolutely changed my perspective’

When she went to see a pulmonologist in April, he said it was likely anxiety and suggested she try Xanax.

“I said, ‘I don’t think so, I’m a psychiatrist,’” says Dr. Weinstein, a 42-year-old in Ardsley, N.Y., who ran the New York City Marathon as recently as 2018.

One of the most frustrating experiences of long-haul patients is finding medical care: Doctors sometimes dismiss their symptoms or have no idea how to treat them. For doctors themselves who have long-term symptoms, the experience has been eye-opening.

“This has absolutely changed my perspective as I reflect on what I’ve dealt with,” says Jeffrey Siegelman, a 40-year-old associate professor of emergency medicine at Emory University School of Medicine in Atlanta. He got Covid in early August and still has profound fatigue and frequent heart palpitations.

“I think about the patients I see who come in with symptoms that are very real and I can’t find any objective data to point me to a certain diagnosis,” says Dr. Siegelman. “In the emergency department you often discharge these patients to follow up with their primary care. I’m sure it’s easy for patients like that to feel that they’ve been brushed off. Very much what I needed was validation even if there couldn’t be a cure. I think I’ll be much more sensitive to that going forward.”

Funny story about that: primary care does the same. Predictably, outcomes are extremely bad. To be fair, who knew that abandoning sick people could be bad? Besides the very massive evidence from decades of this being common practice, of course.

Dr. Suett says many doctors have had challenging experiences getting care themselves. “I can definitely see why it must be a nightmare for patients with these types of conditions because if it’s hard to show proof of how ill you’re feeling. It’s very challenging,” he says.

She says she still has a lot of fatigue, gets bad headaches and has muscle aches. She can’t exercise the way she used to and has recurrent sore throat and some brain fog. “Multitasking is something that I prized myself on before Covid and now it’s much more challenging,” she says.

Still waiting for exertion intolerance, or any other valid frame of, to be recognized...

“We were there cheering each other on,” she says. “It was a lot of encouragement, a lot of exchanging of information. More importantly it was a safe space that we knew we were not going to get gaslighted or dismissed.”

Usually "a taste of one's own medicine" is not meant to be literal. But, yes, medical gaslighting is absolutely horrible and incompatible with the Hippocratic oath. It needs to end. The entire practice of "psychosomatic medicine" has no place in modern medicine, it is an anachronistic aberration from before modern science, modern medical practice and the germ theory of disease. Enough. Let's move on and give post-infectious illness the serious attention it needs: AIDS-level funding until there are tangible results. Now. Not next year. NOW.

(Don't read the comments)

 

[rvallee]

Trump Said Don’t Let COVID Dominate Your Life. These Millennials Don’t Know If They Will Ever Get Better.

https://www.buzzfeednews.com/articl...covid-dominate-your-life-long-haulers-respond

Over the past three months, BuzzFeed News has spoken with more than 100 of these long-haulers as they searched for help and recognition. In the beginning, many said they felt very much alone, finding solace in online support groups. As doctors learned more about the virus, it became apparent that the narrative that the coronavirus largely bypassed young, active people was not entirely true. Many previously healthy long-haulers describe a common set of symptoms: fatigue, recurring headaches and fevers, trouble breathing, and a persistent "brain fog" that makes it difficult to remember things or focus.

Doesn't add much to what we already know but from 100 interviews these give a good overview of the Long Covid experience.

 

[Kalliope]

Trial by Error by David Tuller: Some Thoughts on Long-Covid, ME/CFS and MUS

Both MUS and ME/CFS are likely to become prominent points of discussion and contention as the number of long-Covid cases rises. Many specialists will want to grab slices of the long-Covid pie–whether or not it is warranted by the science. More and more journalists will likely be covering these issues–sometimes responsibly, sometimes not. This could all end up being a mess, although research arising out of long-Covid might very well shed light on mechanisms behind ME/CFS and MUS as well.

 

[Esther12]

Trial by Error by David Tuller: Some Thoughts on Long-Covid, ME/CFS and MUS

Both MUS and ME/CFS are likely to become prominent points of discussion and contention as the number of long-Covid cases rises. Many specialists will want to grab slices of the long-Covid pie–whether or not it is warranted by the science. More and more journalists will likely be covering these issues–sometimes responsibly, sometimes not. This could all end up being a mess, although research arising out of long-Covid might very well shed light on mechanisms behind ME/CFS and MUS as well.

Some of that from @dave30th seems too strong to me, eg:

According to the unproven and delusional hypothesis, patients suffered solely from deconditioning and an unhelpful or dysfunctional conviction that they had an organic illness.

While I don't think it's good to use 'delusional' there, that also just doesn't sound right to me. Where was that hypothesis for PACE laid out? I can't think of a quote from PACE that is so strong.

 

[Milo]

MSNBC had 2 COVID-19 clips segments of interest tonight. one pertained to the UK clinical trial opabout inoculating 90 young adults (18-30) with COVID and trialling vaccines and treatments on them. The trial is set to start in January but seemingly there are ethical concerns now, since there are no approved treatments for COVID and there is a risk of death.

The second segment pertained to Long-COVID and here is the recording:

 

[Snow Leopard]

MSNBC had 2 COVID-19 clips segments of interest tonight. one pertained to the UK clinical trial opabout inoculating 90 young adults (18-30) with COVID and trialling vaccines and treatments on them. The trial is set to start in January but seemingly there are ethical concerns now, since there are no approved treatments for COVID and there is a risk of death.

The second segment pertained to Long-COVID and here is the recording:

I hope they are well compensated, because...

 

[Colin]

https://www.cosmopolitan.com/uk/body/health/a34412641/long-covid/

If estimates made by the COVID Tracker app are accurate, it’s believed that around 12% of UK coronavirus patients suffer symptoms for longer than 30 days. One in 200 report the effects of the virus lasting for more than 90 days. Six months after the pandemic took grip in the UK, I spoke to four young women who are still battling with their symptoms, to find out more about the debilitating condition that’s even puzzling the experts.

Is there an element of bait-and-switch here? While I accept that there is a greater percentage of women and girls who do suffer from ME/CFS-like illnesses, and that that is plausibly explained by there being an auto-immune component to them, the specific mechanism is, obviously, not clear and the numbers are also far from clear. Yet in this report, after not giving the breakdown by sex from the stats they were working from, Cosmopolitan then blithely presents four women as a represntative sample. Sure, it's a women's mag and they also select attractive, young women, but it is almost the norm in media reports to interview women rather than men. No doubt there is a strong element of self-selection there, men being more wary of what publicity might do to their lives, and the Long CoVID phenomenon has thrown up a number of interesting exceptions to this rule; but does it also apply to the raw stats?

That app survey is a very good opportunity to get a dataset that might be less affected by the problem of self-selection that biases even surveys. Here in Queensland, I am quite sure that plenty of men have removed themselves from showing up in what ME/CFS statistics that there are by simply killing themselves. And plenty more evade the statistics in other ways. And even that app survey would have its own problems but it should be worth following. Meanwhile, I suggest that cultivating a greater awareness of ME/CFS being given a feminine face is still necessary to avoid the old pitfall of being dismissed as merely a bunch of hysterical women. That sexism hasn't gone away. On both sides.