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

https://twitter.com/user/status/1380244279751290884


Apparently Sharpe re-tweeted it so it's probably going to be bad. But we'll see.

Definitely not a good look at the comment above showing ignorance that ME is commonly relapsing-remitting, meaning no knowledge of PEM. Then again is there any research at all that studied this? Feels like something massive that has been overlooked, it's common knowledge for those familiar with the disease and yet there is basically no evidence to point to.

Discussion of this program has been moved to this thread:
Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

 

They bent over backwards not to mention M.E./CFS. There were questions asked about it that were voted to the top but never asked. Brian Cox seemed to try to steer it that way at one point but the medical panel appeared to deliberately stay well clear. Disappointing.

 

Code:

https://twitter.com/guardian/status/1380397640861487106

 

CytoDyn’s COVID-19 Long-Hauler’s Trial Closed as Enrollment Exceeds Goals

https://www.globenewswire.com/fr/ne...Trial-Closed-as-Enrollment-Exceeds-Goals.html

 

Merged post
"
ARE you suffering from long Covid? How is it affecting your life? Are you receiving the help you need.

Or have you had long Covid and recovered?

We would like to hear your stories and share them with readers.

Almost one in seven people who test positive for Covid-19 are still suffering symptoms three months later, according to new UK figures.

The largest study of its kind on long Covid from the Office for National Statistics (ONS), found people with coronavirus are significantly more likely than the general population to report ongoing issues, which can include muscle pain and fatigue."

https://www.yorkpress.co.uk/news/19219012.suffering-long-covid-please-share-story/

 

Preprint · April 2021

Post Covid-19 Neurology syndrome – a long-term study

Christiyan Naydenov1*, Iordanka Argirova2, Theodora Manolova1, Pavlina Parusheva3, Lachezar Manchev1, Liliya Pekova4

1-Department of Neurology in Medical faculty of Trakia university, Bulgaria
2-Clinic of Neurology in UMHAT Prof.St.Kirkovich, Bulgaria
3-Clinic of Infection Diseases in UMHAT Prof.St.Kirkovich, Bulgaria
4-Department of Infection Diseases in Medical faculty of Trakia university, Bulgaria

*- Corresponding author. E-mail adress: christiyan_naydenov@abv.bg

ABSTRACT: At the recent time, the scientific data is daily updating with information for Post Covid-19 complications. Our team decided to research what is the Post Covid-19 Neurology Syndrome (PCNS) among patients who passed through our practice for the last couple of months. More and more are people who are complaining of symptoms like fatigue, insomnia, anxiety, headache, vertigo, depression and memory loss.

KEY WORDS: Post Covid-19 Neurology Syndrome, PCNS, Covid-19.

https://www.researchgate.net/profil...d-19-Neurology-syndrome-a-long-term-study.pdf

 

https://twitter.com/user/status/1377938926997024770

 

https://www.msn.com/en-ie/health/me...-for-a-medical-card/ar-BB1fsLAg?ocid=msedgdhp

I don't think this person understands the Irish system. The medical card is generally reserved for people who satisfy means test criteria. Similarly, Disability Allowance is a means-tested payment.

 

I've not watched this but I have my doubts that their 'insights' amount to much.

 

Well that has got be worth a Nobel Prize surely?!?!?

 

I don't think this will be a surprise to anybody here.

"There’s a narrative trying to limit #LongCovid description to only fatigue or fatigue+ cognitive/mood symptoms. That’s not correct for many people with LC. Chest symptoms predominate too, including chest pain, tightness, heaviness, breathlessness & palpitations among lots others."

"It affects multiple organ systems in the body & from what we know so far rarely presents as one or two symptoms. This is important because proposed solutions must take account of that & not oversimplify. You have to properly investigate with tests/imaging before proposing them."

 

In addition, fatigue isn't only one symptom either.

It's just a category for many symptoms, and it's important to assess and distinguish the different symtoms.

I think it's not comparable to pain in that respect.

Same with cognitive difficulties. And all those different symptoms can range from very mild to very severe and very disabling.

See for example this thread for fatigue in MS:
https://www.s4me.info/threads/objec...gue-and-fatiguability.4241/page-2#post-277737

E.g. motor fatigability and muscle fatigability can manifest themselves as a kind of paralysis.

 

CNN: For many sufferers of long Covid, proving they are sick is a big part of the battle

Quotes:
Dr. Manoj Sivan, an associate clinical professor and consultant at University of Leeds, was one of the first physicians to start writing about Covid long haulers last spring. As a rehabilitation medicine expert, he knew previous epidemics of SARS and MERS left some patients suffering with post-viral syndromes a long time after the epidemics were declared to be over. He was seeing the same patterns with the coronavirus.

.....

Dr. Nisreen Alwan, an associate professor of public health at the University of Southampton, said the mobilization of long Covid patients through social media helped speed up the recognition of the condition as a serious problem.

"We are definitely in a better place now, because more people know about it, more doctors and healthcare professionals know about it, but it's important to say that there's still a lot of variation in how much people are recognized and whether they are believed or not, because we haven't got a universal standard definition of what long Covid is," she said.

.....

"We have an enormous amount of people who have been off sick for a year, they are young people, mainly they are of working age, most seem to have been completely healthy before and suddenly they cannot work," she said. "Even if they get better, what we're finding is that people have relapses, they go back, they want to go back and then exertion, either of the brain or the body can seem to trigger a relapse," she said.

(Last quote is from dr. Clare Rayner, a retired occupational health physician and long Covid patient)

 

Like you, I was disappointed. In trying to take part in the interactive aspect of the lecture, I missed a lot of what was said, so have since watched it again. It has been edited and the word ME is not spoken at all now. The word cloud created by over 1,400 viewers, 83% of whom either have Long Covid or know someone who has it, did contain “Similar to ME”.

Is it better that nothing is said about ME rather than something the BPS pressure group have contrived? My heart sinks when I suspect that the damage done to public perception of people with ME by this group’s distortions has influenced discussion of LC which might benefit from our input.

That said, there was acknowledgement that the large amount of funding expected for research into LC is likely to benefit “other chronic illnesses”. Nice of them to think of us, however vaguely.

 

Der Standard: Long Covid: Die Krankheit nach der Krankheit

It was not possible to get a link to a google translation of the whole article, but here are google translated parts where ME is mentioned:

Even months after their illness, the patients whom Stingl looks after in his practice are too exhausted to read a book or clear the dishwasher. "Many are young and had a mild course," says Stingl. "Today they suffer from leaden exhaustion, which is often exacerbated by everyday exertions." However, her condition cannot be explained by organ damage, psychiatric diagnoses or the physical stress caused by an intensive stay.

Rather, their symptoms resemble a clinical picture that is already known to medicine: the so-called chronic fatigue syndrome (CFS). "The fact that such symptoms can be triggered by a viral effect is nothing new," says Stingl, who specializes in the treatment of CFS. Scientists suspect that the symptoms are caused by an excessive immune reaction with an unknown cause.

...

As in the case of CFS, Stingl's Long Covid patients get worse when they activate their bodies too much. Rest breaks then no longer bring any improvement. That is also the reason why classic rehab programs in the case of Long Covid often do not lead to a sufficient improvement in the state of health. On the contrary: many patients feel worse afterwards.

 

REUTERS The faces in the fog of 'long COVID'

There's no mention of ME in the article.

Quote:

“I feel like my 91-year-old mother physically,” says Dominguez, a mother-of-two and a social worker specialising in disabilities, who has been on medical leave since November.

A recent survey by the Spanish Society of General and Family Physicians (SEMG) - which interviewed 2,120 people of whom 1,834 had symptoms compatible with the disease - found the typical profile of a post-COVID syndrome patient was a 43-year-old woman with 36 symptoms on average.

While severe COVID-19 infections are more frequent in men, long-haul COVID seems to affect women more - they accounted for around 80% of the cases in the SEMG study.

Eight women, and two men, spoke to Reuters about their experience of long-COVID, and sat with a photographer for portraits shot through a “fog” of blue plastic to visualise how the condition made them feel.

 

So good to see this important issue covered in TIME. Excellent advocacy once again from Wilhelmina Jenkins!

TIME: Black Women Fighting For Recognition as Long COVID Patients

Quotes:
It took five years of chronic pain, nausea, fuzzy thoughts and a cruel mixture of fatigue and insomnia for Wilhelmina Jenkins to be diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). But even after she received that diagnosis, in 1988, she faced her fair share of doubters—not because her symptoms didn’t meet the bar for diagnosis, but because she is Black.

At that time, researchers mistakenly thought ME/CFS, a syndrome that sometimes follows a viral illness and leads to long-term pain, fatigue and other symptoms that can last decades, primarily affected upper-class white women. It was pejoratively labeled “yuppie flu,” and many doctors believed it to be psychosomatic.

....

When COVID-19 hit last year, and case clusters began popping up in Black communities, Jenkins, now 71, braced herself for another fight. She knew that, since ME/CFS can follow viral illnesses, COVID-19 could be a mass trigger. She also knew that, particularly in communities of color, many patients would have no idea why they weren’t getting better after a couple weeks. “I knew they were not going to be reached,” she says.

She ended up being right on both counts.

 

Maybe should tag her? @Wilhelmina Jenkins