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

don't know if this has already been posted
ECHAlliance member Joan McParland gives a patients view on Myalgic Encephalomyelitis: What do we need to know, while expecting a rise in cases post Covid-19?
4th May 2020

full article here
https://echalliance.com/myalgic-enc...hile-expecting-a-rise-in-cases-post-covid-19/

 

I saw this posted somewhere.

https://irishmed.wordpress.com/2020/05/12/the-coronavirus-crisis-8-post-cv-illness

 

Haven't been able to follow this thread closely, just wanted to mention that the Lam et al. 2009 study that found that 27.1% of their SARS cohort "met the modified 1994 Centers for Disease Control and Prevention criteria for chronic fatigue syndrome", probably didn't do a thorough clinical examination as the criteria required. The authors write:

From epidemiologic studies, we know that around 80% who meet the criteria based on questionnaire screening (CFS-like illness), turn out to not have CFS when they receive a thorough clinical examination. The other SARS study that is frequently quoted by Moldofsky & Patcai also didn't assess CFS criteria, they simply noted that the symptoms seen in their small cohort of 22 SARS patients reminded them of CFS. So I think it's still unclear whether the first and second SARS coronavirus will lead to an increased risk of ME/CFS.

 

Copied post - discussion of this study continues here
JOGO Health Launches COVID-19 Chronic Fatigue Syndrome Study May 2020

https://www.prnewswire.com/news-rel...chronic-fatigue-syndrome-study-301058714.html

 

It was Peter Piot of LSHTM. He told the Guardian: "I constantly felt exhausted, while normally I’m always buzzing with energy. It wasn’t just fatigue, but complete exhaustion; I’ll never forget that feeling. I had to be hospitalised, although I tested negative for the virus in the meantime. This is also typical for Covid-19: the virus disappears, but its consequences linger for weeks."

Perhaps Cure ME, also at LSHTM, could explain to Prof. Piot that in M.E., "complete exhaustion" lingers not "for weeks" but for months, years and decades.

 

Disappointing that CBT and GET recommended near the end. If they can be removed from the next NICE guidelines, they should probably be mentioned fewer times in general articles.

 

Press release:
RESEARCHERS SAY COVID-19 WILL LEAD TO SURGE IN CHRONIC ILLNESS, ME SUFFERERS SPEAK OUT.
https://www.meaction.net/2020/05/10...rge-in-chronic-illness-me-sufferers-speak-out

Researchers Expect COVID-19 will Cause Surge of Chronic Illness, including ME
<https://www.meaction.net/2020/05/10...l-cause-surge-of-chronic-illness-including-me>

 

(Not important at all)
From a medical Twitter chat today on the after effects of covid-19:
https://twitter.com/user/status/1260669111677353988

https://twitter.com/user/status/1260671740025454592

Groan. He is a retired doctor from Scotland

 

What about fairies? Cosmic dragons? Karma:Thetans ratio? Humour imbalance? Planetary alignment? Wait, that last one is a bad example it's actually testable.

Later admits it's untestable so what's even the point in suggesting what's been obsessively promoted for decades to massive institutional failure? It's basically the main focus of the BPS model so it's been suggested plenty.

Blaming the patient never goes out of fashion. Literally the only remaining barbaric practice of its kind anywhere outside of hostile politics and it has a prominent place at the heart of life sciences. Good grief the mediocrity of this ideology never ceases to disgust me.

 

Given the high disease burden on some ethnic minority groups, are you sure you wouldn't like to rephrase this question?

The type of jobs people do, their housing, the quality of food they have access to, plus how genetic components affect immune systems and response to infection are more pertinent than whether the person has a sunny disposition or not.

Or perhaps he's suggesting the elderly have poor outcomes because of their mindset. Despite the fact they've clearly managed to survive all sorts of life crisis so far.

Perhaps he feels those with underlying conditions have a rougher time with covid because of their attitude? Yet many people with serious underlying conditions manage to work full time, raise families and contribute to society.

Could he be suggesting the mentally ill have poorer outcomes? Many of those with mental health conditions still manage to live fairly normal lives despite the burden of mental ill health. Those with severe mental health conditions are much more likely to be at risk because of lack of proper support and extreme poverty.

There are all sorts of valid reasons some bear a higher burden in this pandemic than others. Interesting how some always want to sit in judgement of those who suffer ill fortune or ill health through no fault of their own. Perhaps they're throwbacks to the dark ages and they think sitting in judgement will protect them from bad luck?

Edit - just in case I was breaching forum rules

 

The Guardian has a corona virus article today that includes an interview with Garner

Since his piece was published, Garner has received emails and tearful phone calls from grateful readers who thought they were going mad. “I’m a public health person,” he says. “The virus is certainly causing lots of immunological changes in the body, lots of strange pathology that we don’t yet understand. This is a novel disease. And an outrageous one. The textbooks haven’t been written.”

Prof. Tim Spector of King's College London says:
“These people may be going back to work and not performing at the top of their game,” Spector says. “There is a whole other side to the virus which has not had attention because of the idea that ‘if you are not dead you are fine.’”

The article ends with:
Meanwhile Covid “long-termers” have been comparing notes via a Slack support group. It has #60plus-days and #30plus-days chat groups. The dominant feeling is relief that others are in the same grim situation, and that their health problems are not imaginary

https://www.theguardian.com/world/2...advent-calendar-covid-19-symptoms-paul-garner

Copied to the Paul Garner thread

 

From ME Action's Jaime Seltzer.

Article: https://www.meaction.net/2020/05/15/citizen-science-highlights-non-recovery-in-covid-19-patients/
Report from Body Politic COVID-19 Support Group: https://docs.google.com/document/d/1KmLkOArlJem-PArnBMbSp-S_E3OozD47UzvRG4qM5Yk

 

What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey, by Patient-Led Research Team

https://docs.google.com/document/u/0/d/1KmLkOArlJem-PArnBMbSp-S_E3OozD47UzvRG4qM5Yk/

Bear in mind that the sample is hugely skewed towards people who are experiencing prolonged COVID symptoms.

 

I think CDC (and other health orgs) need to reconsider their definition of recovery. (Comment not strictly limited to COVID19.)

 

I don't think people who use "post viral fatigue syndrome" necessarily believe the virus is definitely gone but simply that the symptoms followed after (post) a virus.

And indeed, in the Oxford criteria, there is a subgroup for "postinfectious fatigue syndrome" (admittedly not the same term as postviral fatigue syndrome): "This is a subtype of CFS which either follows an infection or is associated with a current infection".

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf

Also, there hasn't been a huge push from the medical profession in general up to now to separate the groups of patients into separate categories based on the initial infection that triggered the syndrome. Generally it's the medical profession that have bundled them altogether.

 

If ME/CFS/post-viral fatigue syndrome isn't mentioned in discussions about post-Covid symptoms and impairments, then connections could easily not be made about possible similarities and learning points (e.g. about the problems with the BPS approach).

Also we could easily get forgotten. This is possibly a once-in-a-lifetime opportunity for us. It looks like billions this year and maybe tens of billions in the coming years could be spent on COVID-19 research.

 

We've developed some information that we are hoping to get used to help physios start thinking about PVFS and ME if involved in post COVID rehab https://www.physiosforme.com/covid-19
We are also finding that people are interested in hearing about ME on the back of COVID so we are trying our best to spread the word! I'll post if/when we have anything else to share on this

 

This might not be the right thread to bring this up in, but it might be interesting to see how samples from "post-Covid" patients with ME-like symptoms respond when they're run by the nanoneedle.