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

Post to my Facebook page:
"i got a response from the Center for Solutions for MEcfs saying ' we certainly appreciate the potential for the development of MEcfs-post-covid-19 infection and we are working on multiple fronts researching this.'"

 

This one is courtesy of the Daily Telegraph:

http://www.msn.com/en-gb/news/coron...for-months/ar-BB14pDLq?li=BBoPRmx&ocid=ASUDHP

 

https://twitter.com/user/status/1263718595571462144

 

Article (includes quotes from Jen Brea, Karl Morten, Lucinda Bateman, Maureen Hanson)


https://www.bustle.com/p/mecfs-diagnoses-could-rise-after-coronavirus-researchers-suggest-22897345

 

A first step being to use adequate language for it. Fatigue isn't appropriate. We don't call a car a steering wheel just because most cars have one. And actually since fatigue isn't even necessary it would be like calling cars a spoiler or clutch or whatever else is common but not universal on cars.

I don't know how this kind of conversation happens in medicine but the language used today will impact all future efforts, short-, medium- and long-term. In this case the impact will be strongly negative by injecting confusion into an already complex topic. It's clear that the use of fatigue is causing massive confusion when it is not the problem people are dealing with and it's not even necessary. Everyone experiencing struggles with the same confusion, it's maddening.

Chronic post-infectious illness? Something like that. I think it's important to distinguish infectious from viral because even though viruses seem to be the most common infectious trigger it also includes bacteria and other parasites. Clearly there will be sub-types but it's important to at least get the supercategory right this time.

 

From:Royal College of Occupational Therapists



https://www.rcot.co.uk/recovering-covid-19-post-viral-fatigue-and-conserving-energy

 

They are talking about fatigue/exhaustion as symptoms, no? Not as a name for a disease. If they claim to have exhaustion and fatigue, I believe them.

 

https://twitter.com/user/status/1264114899854200834

 

https://www.healthrising.org/blog/2020/05/22/covid-19-omf-chronic-fatigue-syndrome-study/

 

Simply calling it post-viral fatigue will confuse the crap out of people and likely do more harm than good. It really seems too much to ask for basic competence.

 

"Belgian pandemic expert Peter Piot helped discover the Ebola virus, and is currently advising the EU on the COVID-19 pandemic. He is also a survivor of the disease, and found it much worse than he had expected."

https://www.spiegel.de/internationa...vid-19-a-92cdf795-3378-44c8-b565-3294596e410c

 

This one?

https://www.spiegel.de/internationa...vid-19-a-92cdf795-3378-44c8-b565-3294596e410c

(German version here, if anyone wants it, but it looks as though it's subscriber-only)
https://www.spiegel.de/wissenschaft...eweint-a-00000000-0002-0001-0000-000171037357

 

This mentions CFS briefly a few times.

https://www.jpma.org.pk/supplement-article-details/476

DOI: https://doi.org/10.5455/JPMA.32

 

Yup – it even led to Prof Garner saying early on that he didn't have post-viral fatigue, because the name isn't in any way descriptive of the condition.

Using a name like post-viral syndrome could potentially help. The lack of specificity might signpost people to the fact that there's a whole list of possible symptoms, not just one.

 

And very telling that in COVID forums they basically say the exact same thing ME advocates have been saying all along, to the effect of "I don't feel fatigued I feel sick". I'm not saying it could confuse people, it already is confusing the crap out of people, things are FUBAR. And I've seen many comments saying something like "I hope this really is just CFS and what remains is just the fatigue and not all the symptoms", thinking it must be different than what they're dealing it if it's just fatigue remaining and not more of less the same symptoms remaining chronically.

Seriously gigantic messy failure that does not have anything comparable anywhere in any other field of science, the most pathetic failure in a field already filled to the brim with catastrophic failures. And then there are decades of very strongly voiced warnings saying exactly that would be the end result of fabricating this fake-ass syndrome of one symptom that isn't even the main symptom.

 

I can't copy/quote it for some reason but in @Dolphin 's post #375 I notice they've slipped Chronic Fatigue Syndrome in under Psychiatric Complications for probable long term complications

Nothing like accuracy. Literally nothing like it.

 

the correct name (WHO) is Postviral fatigue syndrome

https://dxrevisionwatch.com/2018/08...ation-of-pvfs-me-and-cfs-for-icd-11-part-one/

but as with CFS being shortened to chronic fatigue, PVFS is also incorrectly abbreviated to post-viral fatigue. Obviously one being the name of the condition and the other being a symptom.

So, often in these articles it is not always clear which they are referring to and as the bPS lot like to mix the two on a regular basis, they have become almost synonymous.

Yet another reason(if we needed one) to ditch CFS and get rid of the 'fatigue' in PVFS as long as they are both listed alongside ME.

 

And how on earth does Femoral head necrosis become a "Neuropsychiatric complication", for that matter?