Possibility of ME or PVFS after COVID-19, Long Covid

I was listening to TWIV #645 and about 3:45 into the podcast Vincent Racaniello says that he recently spoke with Ian Lipkin (who had Covid back in the March timeframe) and asked him if he had any lingering symptoms and Dr. Lipkin said that "I am always exhausted“.

 

All too familiar. This could all have been avoided, had it not been happening for decades with the same outcomes.


Coronavirus ‘long-haulers’ are losing their jobs, say patients

https://www.thetimes.co.uk/edition/...-are-losing-their-jobs-say-patients-zxlpv2fpf

That weird suggestion would imply that many people have undiagnosed conditions. Which, presenting like this, would explicitly not be diagnosed as they would be in the MUS/BPS/FND void of doom. Either that or medicine makes A LOT of mistakes, which is ironically true.

There's totally an app for that. No services. Just an app. Because maybe it's something else. Maybe it's the wind. Maybe you're just a type A personality. Maybe you think too much. Maybe you don't think at all. Maybe this. Maybe that. Ghosts. Demons. COSMIC RAYS. Just go away, OK?

It's a common trope in sci-fi to make androids sort of crash by making them think about an unsolvable paradigm. Clearly, humans crash on those, too. All you need is ideology and the brain turns to pudding.

 

Perhaps failure to test was a strategic decision.

 

This was just posted to a UK-based list I’m on. I haven’t watched the programmer myself
—-
Channel 4 news programme this evening emphasised exercise being good for people recovering from Covid-19. Much of the film shown is from the national velodrome of Wales in Newport.

For coronavirus patients who have been treated in hospital, being discharged is often not the end of their ordeal.

Especially for the thousands of people who have been critically ill and ventilated, many of them needing extensive rehabilitation.

At the national velodrome of Wales in Newport, a new service has been launched to help people through their physical and psychological recovery.

It is also enabling survivors to share their experiences with others going through the same process.

https://www.channel4.com/news/new-service-launched-in-newport-to-help-covid-patients-recover

More of this report here -

 

What could possibly go wrong....

 

... if only there were some other illness with a long list of all the things that go wrong, both in patients and the medical system ...

 

An Open Letter to the COVID-19 Long Hauler Community From a Person with ME/CFS
by Cort Johnson | Jul 24, 2020
https://www.healthrising.org/blog/2020/07/24/open-letter-covid-19-long-hauler-me-cfs/

 

And yet another 'covid long-hauler' with classic ME symptoms:

 

–––––––––

Thread reader version:

https://threadreaderapp.com/thread/1287525539859910657.html

 

Also not sure if this is the best place either for this link, but I liked this piece by Dr Shepherd on the issues around comparisons between long haul Covid and ME

https://meassociation.org.uk/2020/07/update-post-covid-fatigue-post-long-covid-syndromes-and-me-cfs/

 

The Wall Street Journal:
Suffering From Covid for Month - and Battling Murky Test Results Too

The article is paywalled, but seems Mady Hornig and Paul Garner were interviewed

 

World Neurology - The Official Newsletter Of The World Federation Of Neurology - has an article by Avindra Nath and B. Jeanne Billioux titled: Long-Haul COVID.

Many of these symptoms overlap with those of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The cause of ME/CFS remains unknown despite decades of research of the syndrome. Many of these patients similarly report a viral infection as a trigger, but since they come to our attention months and years after symptom onset, it is impossible to know what may have triggered the symptoms.

Long-Haul COVID thus represents as excellent opportunity to study the pathophysiology of ME/CFS that may have broader implications.

Article begins at page 1 and continues at page 3:
https://wfneurology.org/private/downloads/dmOeL3cfAVtVLhXhvm1Rnw/wn_jun_jul_20.pdf

 

A large German newspaper dedicates page 3 to a personal story about a friend with ME. Potential association of Covid 19 sequelae with ME only marginally mentioned in the text, but prominently in the caption:

First it was a scratchy throat. Soon Nora could barely stand up, could barely speak. There's no cure. But with Corona, maybe more cases soon.

Google translate:
Chronic fatigue syndrome: How an illness made my friend disappear

Code:

https://twitter.com/Tagesspiegel/status/1287972901023625218

https://www.tagesspiegel.de/gesells...ine-freundin-verschwinden-liess/26042084.html

Edited to fix Twitter link.

 

It's a great article, and finally with a good picture (not some tired yuppie in front of a laptop.

 

I think it's this one but not much meat to it:

"The key is to take these patients seriously". Indeed it should be. Unfortunately, medicine is designed for the opposite and to give up at the first hint of adversity.

 

Yes, I think you're right, but I wonder if there might be more?

 

Yeah, I wonder too. There are no quotes from Garner or Hornig in it.

 

@dave30th re when the TC interview was done, it must have been quite early on as her hair is ginger.

But by the time she did this other one in july
https://www.s4me.info/threads/cogni...20-goldstein-chalder.15251/page-4#post-273682
she is completely grey.

(Date & time: Monday July 13th, 1pm – 1.30pm

Title: “From OCD to FND”: the multiple facets of Cognitive Behavioural Therapy)
https://maudsleylearning.com/archived-webinars/