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

Worth reading the replies:

https://twitter.com/user/status/1337567893999927297


The answer is a resounding: YES.

 

Apologies if this was previously posted here:
https://twitter.com/user/status/1337818408440705024

 

https://twitter.com/user/status/1337615872496529408

 

https://twitter.com/user/status/1337720879510401024

 

https://twitter.com/user/status/1337751902621057025

 

Coping is such a euphemism but ok. Coping to me means still being able to live much of your pre-ME life though with more management and some difficulty. Losing most everything isn’t coping it’s subjugation.

 

It's so beautiful to see those interactions. What a sea change from even a year ago.

I was a bit unsure about the Stop Rest Pace campaign since it's very direct and prescriptive, with ME still in a place where our advice is taken but with a lot of hesitation, people still hope this isn't ME. But it's the physios who are using it the most. Incredible difference it all makes.

Sad that it takes so many people to suffer this for change to happen but I doubt it would have happened any other way.

 

Maybe there's a better thread for this but it suggests a possible mechanism for long-term symptoms that seems to reflect prior ME research. Obligatory: in mice.


Diverse Functional Autoantibodies in Patients with COVID-19

https://www.medrxiv.org/content/10.1101/2020.12.10.20247205v2

https://twitter.com/user/status/1337574470878449665


https://twitter.com/user/status/1337829320434331648

 

Things will never be as bad again as they were while the psychiatrists with their ideas were in charge. That experiment is over.

ME/CFS is getting a lot more respect now on social media. More funding and research interest should follow.

 

Some information from research in France on Long Covid. Nothing ground-breaking but it aligns with early data, which is always useful. Lots of data and stats. More interest on neurological than is typical, which is very nice. Some discussion of ME, not bad overall. A national study, named COCOLATE, has been officially launched. The 20-40 peak is maintained, which is REALLY interesting considering it has been consistent for ME.

Article: https://www.lejdd.fr/Societe/Sante/...-sur-les-formes-longues-de-la-maladie-4011338.
Translation: https://translate.google.com/transl...-sur-les-formes-longues-de-la-maladie-4011338.

Alternative URL from The Conversation: https://theconversation.com/covid-1...it-on-des-formes-longues-de-la-maladie-142929.

Thread:

https://twitter.com/user/status/1337693205073113089


Some emphasis that this is not psychological, which is unfortunately necessary. Not much awareness of dysautonomia.

 

From the article above:

During the persistent phase or relapses, the symptoms observed could differ from those which had initially appeared. The most predominant of them was fatigue. Often extreme (asthenia), this forced a large part of the patients to interrupt their work again which they had been able to resume after the disease. This asthenia was often increased by the slightest exertion, both physical and intellectual.

 

They keep associating long covid with ME because of fatigue but that is all wrong. If the BPS crew had not introduced CFS with its 6 months of fatigue before diagnosis it would be clearer to see the association.

ME never had a requirement for fatigue and certainly not 6 months of it before diagnosis. It happened when people became ill during different epidemics then discovered that either they did not recover or they thought they were better then kept relapsing. They had neurological symptoms and problems in many other body systems but especially were made worse by exercise.

Many experienced fatigue but with what we know now that was most likely payback for exertion. Fatiguability where you are fine then suddenly stop is common as it is in the convalescence for many viral illnesses.

Oh and it was not considered hysteria for many years.

Being starved of research money means the mechanism for disease is not known but the idea that it is another name for the symptom of fatigue has to be soundly stamped out.

Personally, I was able to walk miles for years after I became ill though I could not run or play sports, probably because it never caused me to reach my anaerobic threshold.

 

COVID-19 Symptoms: Longitudinal Evolution and Persistence in Outpatient Settings

https://www.acpjournals.org/doi/10.7326/M20-5926

Ooof on the bolded part.

 

Mostly to keep a record of as many sources covering the issue, as there are now too many news reports to bother keeping track of, this weekly post on the long covid sub-reddit is a convenient recap, with 32 articles this week: Covid Long Haulers News and Articles Roundup (Week of 12/5-12/12).

 

https://twitter.com/user/status/1338227830866534402


https://twitter.com/user/status/1338191428468531201

 

https://www.theguardian.com/science...may-be-driving-severe-covid-cases-study-shows

'Autoantibodies' may be driving severe Covid cases, study shows
Scientists find aberrant immune system in patients with virus could also be cause of ‘long Covid’

 

How to manage post-viral fatigue after COVID-19

https://www.rcot.co.uk/node/3540

@PhysiosforME , you probably have seen this but just in case.

 

Code:

https://youtu.be/wZ_ipmf0s-Q

https://www.youtube.com/watch?v=wZ_ipmf0s-Q

 

If ME had never been degraded down to the single symptom of fatigue there would not be the diagnostic confusion. CFS was invented by people called "lumpers" who saw fatigue as a spectrum where ME was just at the extreme end (as opposed to "splitters" who saw everything as a different disease)

ME is like MS in that fatigue is important to the individual but does not define the disease.

Before I had every heard of ME my husband took a bad post viral and he was ill for almost a year. It never occurred to us that he might have the same illness I had. Dr Ramsay said that someone who feels fatigued all the time without the variability of symptoms over time that are part of ME is unlikely to have it.

There may well be a middle section of overlap where people with PVS go on to develop ME, but I believe that it should be possible to diagnose ME after a few weeks. ME may be curable with rest in the early days so there might be some confusion there but when a diagnostic test is found or even a proper understanding of what ME actually does to the body there will be no need for months of delay.

The multisystem damage with neurological involvement is there from the beginning.

 

The Atlantic - How Science Beat the Virus - And what it lost in the process - Ed Yong

From chapter 4:

Even after the COVID‑19 pandemic, the fruits of the pivot will leave us better equipped for our long and intensifying war against harmful viruses. The last time a virus caused this much devastation—the flu pandemic of 1918—scientists were only just learning about viruses, and spent time looking for a bacterial culprit. This one is different. With so many scientists observing intently as a virus wreaks its horrible work upon millions of bodies, the world is learning lessons that could change the way we think about these pathogens forevermore.

Consider the long-term consequences of viral infections. Years after the original SARS virus hit Hong Kong in 2003, about a quarter of survivors still had myalgic encephalomyelitis—a chronic illness whose symptoms, such as extreme fatigue and brain fogs, can worsen dramatically after mild exertion. ME cases are thought to be linked to viral infections, and clusters sometimes follow big outbreaks. So when SARS‑CoV‑2 started spreading, people with ME were unsurprised to hear that tens of thousands of COVID‑19 “long-haulers” were experiencing incapacitating symptoms that rolled on for months. “Everyone in my community has been thinking about this since the start of the pandemic,” says Jennifer Brea, the executive director of the advocacy group #MEAction.

ME and sister illnesses such as dysautonomia, fibromyalgia, and mast cell activation syndrome have long been neglected, their symptoms dismissed as imaginary or psychiatric. Research is poorly funded, so few scientists study them. Little is known about how to prevent and treat them. This negligence has left COVID‑19 long-haulers with few answers or options, and they initially endured the same dismissal as the larger ME community. But their sheer numbers have forced a degree of recognition. They started researching, cataloging their own symptoms. They gained audiences with the NIH and the World Health Organization. Patients who are themselves experts in infectious disease or public health published their stories in top journals. “Long COVID” is being taken seriously, and Brea hopes it might drag all post-infection illnesses into the spotlight. ME never experienced a pivot. COVID‑19 might inadvertently create one.

ETA:
Anthony Fauci hopes so. His career was defined by HIV, and in 2019 he said in a paper he co-wrote that “the collateral advantages of” studying HIV “have been profound.” Research into HIV/AIDS revolutionized our understanding of the immune system and how diseases subvert it. It produced techniques for developing antiviral drugs that led to treatments for hepatitis C. Inactivated versions of HIV have been used to treat cancers and genetic disorders. From one disease came a cascade of benefits. COVID‑19 will be no different. Fauci had personally seen cases of prolonged symptoms after other viral infections, but “I didn’t really have a good scientific handle on it,” he told me. Such cases are hard to study, because it’s usually impossible to identify the instigating pathogen. But COVID‑19 has created “the most unusual situation imaginable,” Fauci said—a massive cohort of people with long-haul symptoms that are almost certainly caused by one known virus. “It’s an opportunity we cannot lose,” he said.