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

piece in Washington Post by Julie Reymeher, Jen Brea and Brian Vastag
https://www.washingtonpost.com/heal...rfTML57KY&mc_cid=a292066a60&mc_eid=7dd94a557c

 

https://twitter.com/user/status/1321605412244901891

https://twitter.com/user/status/1321606820386000896

 

"A small but growing body of research suggests as many as one in 10 people who get COVID-19 may fall into the long-hauler category".

I don't think that's accurate. That would be a lot of people with long COVID!

 

It seems that currently long covid is applied to anyone who doesn't recover in the officially approved time - so say a month, any longer and they have 'long covid'. As far as I am aware many people are recovering (at least apparently) within 3 months - so covid, then a post viral period, then recovered, these are probably, hopefully, the bulk of long covid people.

The ones who take longer, or who so far haven't recovered, would seem to be a fraction of that 10%.

I really don't want 10%, or even 1% of people who catch covid (which will probably be everyone eventually) ending up with something which has a symptom pattern and duration similar to what I have.

 

https://twitter.com/user/status/1321614646143602688

https://twitter.com/user/status/1321614942747926529

 

News Wise - Nova Southeastern University Researchers Receive $4 Million From CDC for 'COVID Long Hauler's' Study

“With our long-standing research into ME/Chronic Fatigue Syndrome, we’ve been selected by the Centers for Disease Control and Prevention to begin researching these symptoms in COVID-19 patients,” said Nancy Klimas, M.D. “Because the symptoms are so similar – joint and muscle pain, severe fatigue and memory and cognitive issues – to Chronic Fatigue Syndrome, NSU is uniquely positioned to study this emerging development in the pandemic.”

 

https://elemental.medium.com/the-latest-scientific-theories-around-covid-19-brain-fog-6a7c76d7a060

THE NUANCE
The Latest Scientific Theories Around Covid-19 Brain Fog
Experts say the immune system’s reaction to SARS-CoV-2 could shift brain activity in ways that disrupt sleep-wake cycles
Markham Heid
3 hours ago

Quotes from research by Natalie Lambert, PhD and Leonard Jason.

 

Haven't seen it myself.

https://twitter.com/user/status/1321750077044592641

 

Financial Times - Long Covid casts a lasting shadow over workers

Interview with Paul Garner. Also with a woman who suffers from long covid and says:

“I am feeling more than a little abandoned,” she says. “Long Covid wasn’t a thing when a lot of the planning was being done . . . I fear we are being missed. I seem to be deemed to be an acceptable casualty of the pandemic. It feels like the equivalent of leaving the occasional injured soldier behind because they are just too much bother.”

 

Me neither now..
But I could access it when I clicked from Paul Garner's tweet

https://twitter.com/user/status/1321774602721333250


ME was not mentioned specifically, but it was a good article.

 

Having read the article, my "socially unacceptable" response to this :

is that it would have been so much better for everyone if the people who got Long Covid were
a) mostly male and b) in their 20s and 30s.

Male illness is always considered to be more "real" than female illness therefore is more deserving of treatment and research, and having lots of people becoming sick in the prime of life might actually have prompted some more research and funding for that reason. By the time people are 45 they are often considered to be past it.

I know there is a lot of talk on the subject of "What is causing Long Covid and how can we treat it", but I suspect the BPS bunch will fight tooth and nail to stay on top of the pile over treatment options, and I suspect that interest will wane in finding out more about it unless there are results quite quickly, so CBT and GET will continue to hold sway.

The other possibility that has crossed my mind is that Long Covid in women will be assumed to be malingering and a mental illness, but in men will be taken seriously, just as happened in MS in the past. After all, many doctors now accept that endometriosis is "real", but they still classify "chronic pelvic pain" as an MUS and articles like this one can get published :

https://www.theguardian.com/comment...e-get-endometriosis-or-does-endo-make-you-mad

Sorry, I know my cynicism is showing.

Moderator note: This post has been copied and the following discussion of gender issues in medicine and health has been moved to this thread.

 

https://www.cdc.gov/me-cfs/
https://twitter.com/user/status/1321910140426162176

https://twitter.com/user/status/1321916883784945665

 

‘Long-Haulers’ Have Fought Through Months Of COVID-19 Symptoms. GW Just Launched A Clinic To Help Them

https://dcist.com/story/20/10/28/covid-long-term-symptoms-dc-md-va-gw-recovery-clinic-launches/

The only mention of ME/CFS or post-viral illness:

I’m sceptical.

 

In Google's (or whatever's) search box, type (without the quotes) "site:ft.com" and then (in quotes) a suitably distinctive quote from the text - and hit Search. That should do it.

 

Apparently Ed Yong mentioned ME in his latest talk. (Have't listened to it myself yet)

https://twitter.com/user/status/1321943334462623748

https://twitter.com/user/status/1322088360194809856

 

Royal Society

Urgent need for more research to understand Long Covid
28 October 2020

https://royalsociety.org/news/2020/10/urgent-need-to-understand-long-covid/

Long Covid may impose a significant health burden worldwide, according to a new report (PDF) by the Royal Society’s SET-C (Science in Emergencies Tasking: COVID-19) group.

The Long Covid: what is it, and what is needed? report (PDF) concludes that urgent data gathering and more research is needed to better understand who is at risk and why and what the long term impacts might be.

Professor Charles Bangham, Chair of Immunology at Imperial College London and an author of the SET-C report, said: “At the moment we do not even know enough to define what Long Covid is, but it is clear that it can have a severely disabling effect on people of any age. We have to act now to get a better understanding of this condition and raise awareness of the potential threat, particularly for younger people who may believe that Covid is not a threat to them.”

The report highlights the wide ranging and persistent or recurrent symptoms reported by individuals and anecdotal evidence of Long Covid affecting all ages from the very young (under 10 years of age) to the elderly. It calls for rapid progress in establishing large-scale cohort studies with international coordination and collaboration...


Report (23 October 2020)

Long Covid: what is it, and what is needed?

https://royalsociety.org/-/media/policy/projects/set-c/set-c-long-covid.pdf

This paper is provided to SAGE and UKRI to raise awareness of the emerging syndrome that has become known as Long Covid, among both the public, the medical profession and politicians and to promote investigation of the predisposing factors, the clinical features and the pathogenesis of the condition, in order to lead to better diagnosis and clinical management.

The Royal Society identifies questions that need urgent attention in clinical and laboratory research. This paper is a pre-print and has not been subject to formal peer-review.

[PDF attached to post]