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

https://twitter.com/user/status/1344420643773800448

I have mixed feelings about this given how she seems to have been trying a lot of the time to keep long Covid separate from ME/CFS.

 

Don't understand that. Why are the feelings mixed?

 

I assume some part of it is being repeatedly told "it's normal with age". Even though it obviously isn't, but it makes "sense" if one does not question the fact that plenty of people aged 60+ are fit and active and were not necessarily so for their entire lives. A healthy person can become fit all the way to their 70's, and beyond for some. Someone in their 20's will not buy that and seek help no matter how "rousing" the "rassurances" of their physicians are that all of this is perfectly "normal".

 

Integrate yourself elsewhere, Randy.

 

There is discussion of ME on page 4. Verghese and Rasmussen. Continues on page 5. Rasmussen said this.

 

https://twitter.com/user/status/1344686562882285574

https://twitter.com/user/status/1344687066341404674

 

Really getting to the point where the difference between the /r/covidlonghaulers and /r/cfs subs on Reddit is volume and recency bias, at most. Otherwise the contents are pretty much the same.

All of this could have been avoided. It was all predictable.

 

I agree. Contrary to many predictions, there are surprisingly few long-haulers reporting lung or heart damage even after they have undergone extensive testing.

Many are being diagnosed with POTS (although that seems to depend on them having a doctor who knows anything about it) and some are even receiving an ME/CFS diagnosis now that they have been ill beyond six months.

 

This supposedly alternative approach is pretty much the same as the treatment recommended to GPs in Australia by the mainstream RACGP for patients with long covid. For example:

It is typical for doctors in Australia to blame "lifestyle and behavioural factors" for causing and perpetuating ME/CFS. I've been told many times that going to bed very late at night and sleeping for much of the morning is at least, in part, a cause of my symptoms.

Firstly I'm not sure how an altered sleep schedule can cause symptoms like sore, swollen lymph nodes for example. Moreover, the possibility that insomnia may simply be a symptom of my illness rather than the cause of it doesn't seem to have occurred to these geniuses.

But then, I'm not a doctor, so what would I know?

 

Was unsure which thread to put this in, but here's an update from the JAX ME/CFS team by Derya Unutmaz and Courtney Gunter for the new year.


We look forward to the coming year for generating novel findings about ME/CFS, as well as how COVID-19 is connected to this devastating disease.
...

We have recently made some exciting changes to our immune profiling panels to add additional analyses, and have begun our immune profiling experiments on our samples. Our collaborations with the Cornell and Columbia ME/CFS Centers are also running at full speed, and we are hoping to begin an additional collaboration soon with the Bateman Horne Center to collect samples from patients who previously had COVID-19, and have since been experiencing ME/CFS-like symptoms, or “long-COVID.”

Happy New Year from the JAX ME/CFS Team!

 

There was always a preponderance of health professionals who got ME. It was often repeated that healthcare workers and school staff were common victims because they were faced with infections so often. It made no difference to how ME was viewed.

There may be a difference now in that it was harder for patients to do anything meaningful to publize ME or demand change because they were simply too ill. Nowadays I am writing this on a laptop sitting in my recliner while still wearing nightclothes as I can either do this or get dressed.

Times may be changing.

 

https://twitter.com/user/status/1344745406895443968

 

https://twitter.com/user/status/1345034628621606913

 

Interestingly, it shows one big flaw in how disease-first medicine works: since there is a disease state that can be shown, the symptoms are associated with it, because there is no "better" explanation. Even though there is no reason to assume those injuries, and they are real and demonstrable and serious, are the cause of those symptoms. So how many common symptoms are misattributed to disease this way? This simplistic thinking is very dangerous and self-defeating.

 

Awful. In the first years I often felt like I was well on the way to getting better, only to relapse again.

 

Apologies if this has been posted elsewhere.
I found it on Twitter

https://www.healthcarehubris.com/an-ill-equipped-nhs-for-long-covid

 

At least the relapsing-remitting course will be captured. But it really sucks that it has to happen while we are watching it happen and no one pays attention to what we are saying because it's negative to point out bad things. Yes, it's gloomy. But, no, it doesn't change the facts, let alone outcomes, to be "scared" of something bad. It will happen no matter what and in fact being aware and prepared for it is how to minimize harm, if only that were a thing people were concerned about.

This is becoming a pretty dominant theme in the long haulers forums, people relapsing months after. Same on Twitter, including from some of the more defiant ME doubters. It's interesting to see the patterns, though. This kind of fluctuations happen early and through the course of the illness, some people feel better for days and then it comes back. But now the same is happening with longer cycles. There is so much information underneath this but no one is paying attention to it, only the surface, no depth.

I had 3 significant remissions. The 2nd one was the closest to a full, something like 85% back for almost 2 years. All this is stuff we know from personal experience but no one has ever recorded it in a way that can be analyzed, even in hindsight. Everything's been shredded and burned to ashes, the information may as well have fallen into a black hole. We can't even show this is the case for ME because no one has ever done the kind of in-depth study that can accomplish this. What a waste of millions of human lives.

A system unable to learn from mistakes is guaranteed to repeat them over and over again. And that system is very angry that people keep pointing out the mistakes. Lots of huffing and puffing ahead about how this is scaremongering, even though it is actually severely underplayed because everyone seems to assume it will magically resolve itself with time. It worked with us, after all. Problem resolved, many people do say. They don't hear about us anymore, they say. This was a fad back then, but it isn't now. Out of sight, out of mind.

 

This is a late reply but that idiom - "in its infancy" - struck me, too.

That "infant" is at least 35-40 years old! (probably even older!)

 

BBC Covid-19: The similarities between 'long Covid and ME

Interview with Gary Campion who has suffered from ME for six years.
He says "It's like looking in a mirror for us".

Joan McParland from the Hope for ME and Fibro group says she's been contacted by post-Covid patients.

"Their stories are identical to my own - a viral onset and exhaustion, post-exertion malaise, nausea, pain, dizziness and non-recovery, and getting worse as they fight their way through these symptoms," she said.

Dr. Charles Shepherd from the ME Association says demand for support from the charity has steadily been increasing.

Occupational therapist Lorraine Henry from a ME/CFS programme says she sees similarities, both in terms of management and symptoms.
Article also mentions the removal of CBT/GET by NICE.

It had recommended using cognitive behavioural therapy and graded exercise therapy (GET) to help ME patients but many people say this can make their condition worse.

NICE is now consulting on new guidance which says GET should no longer be used as a standard treatment for ME.

The Scottish government has already revised its advice for GPs on the treatment of ME and CFS and campaigners are calling for the same to happen in Northern Ireland.