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

To be honest, I don't think that VeryWell Health article is particularly well-written. It says it is fact-checked but then there are sentences like this in it:

In 2020, the most pervading symptom documented by long-haulers was fatigue. In 2021, a study by the World Health Organization (WHO) showed that Epstein-Barr Virus (EBV), the virus behind mononucleosis, was reactivating in long-haulers, and could be a source of that fatigue.5​

It wasn't the WHO, it was an org called World Organization, which looks more like an environmental thing than anything else.
I also think that was the only such study that tried to connect long covid to EBV reactivation. That was last summer and we haven't really heard much about this since.

The description of PEM is not the best:

ME/CFS, for example, shares three of the most common symptoms as long COVID: brain fog, fatigue, and post-exertional malaise (PEM), which is when a patient’s symptoms worsen after activity. ​

Also, statements like this:

Throughout the next year, we will be seeing more insight into the pathophysiology of COVID-19. Microbiologists like Amy Proal, PhD, a microbiologist at the PolyBio Research Foundation, and Eric Topol, MD, the founder and director of the Scripps Research Translational Institute, have made many strides in advancing our knowledge of long COVID, and are important scientists to follow both in the clinical sphere and online for updates.​

 

https://twitter.com/user/status/1483909434028044293

 

https://twitter.com/user/status/1484209544788160521

 

I am not sure what Binita Kane is wanting. She says:

We need a mechanism for rapid small scale testing of new drugs/ therapies in different cohorts, fast tracked ethics approval and rapid review, analysis, publication, adoption and spread. RCTs are important but can’t be the whole answer when millions are suffering (3/4)

But we have the mechanism and it works - that's how dexamethasone got identified, how the vaccines got approved. Anything faster would have been exposing people to treatments mostly more likely to do harm than good. In a pilot dose response study typically 80% of patients get the wrong dose. Unless such early studies are done with maximum rigour you go on exposing most people to the wrong dose. The great majority of drug therapies that have been tried have not worked but have had adverse effects. RCT's are not the whole answer for sure, but that is because there are other well worked out steps beforehand - and everyone should know what they are and how to use them.

I am left wondering what the motivation for the set of tweets was really.

 

This group proposes that the molecular basis of long covid is sustained inflammation in the olfactory system with inflammatory responses in the brain (my summary).
https://twitter.com/user/status/1484125754359263235

 

In fact we had the mechanism front having the pandemic at all - which China used to good effect - restrict travel, test, trace and isolate. And once they get started viruses are not that easy to treat.

 

I wasn't aware of prior reports that hamsters were experiencing long covid. Who knew??

 

The question of whether vaccines can cause Long Covid-like illness seems to be a very interesting one, with a preliminary yes. Research from the NIH. The ridiculous insistence to downplay all vaccine reactions, out of belief in "mass hysteria" of all things, has probably done as much harm as the Lancet-Wakefield paper did, just unseen as it happens in thousands of small incidents that leave people distrustful of people gaslighting their reality.

Thread:

https://twitter.com/user/status/1484268870768627712


And an article from Science magazine:

In rare cases, coronavirus vaccines may cause Long Covid–like symptoms
https://www.science.org/content/art...avirus-vaccines-may-cause-long-covid-symptoms

 

And a long perspective article from Avindra Nath (NIH lead researcher on the ME initiative) regarding neurological symptoms in Long Covid.

You're never going to guess: it's probably neuroinflammation. What a shocking surprise.


Nervous system consequences of COVID-19
https://www.science.org/doi/10.1126/science.abm2052

Since early in the COVID-19 pandemic, patients have described lingering syndromes following acute infection, now called Long Covid. These syndromes often include predominant neurologic and psychiatric symptoms, such as difficulty with memory, concentration, and ability to accomplish everyday tasks, frequent headaches, alterations in skin sensation, autonomic dysfunction, intractable fatigue, and in severe cases, delusions and paranoia. Many people who experience neurologic symptoms that linger after acute COVID-19 are less than 50 years old and were healthy and active prior to infection. Notably, the majority were never hospitalized during their acute COVID-19 illness, reflecting mild initial disease. Many of the symptoms experienced by individuals with Long Covid are similar to those of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is also considered to be a postinfectious syndrome caused by a variety of infectious agents. Because the pathophysiology of ME/CFS is poorly understood and there are no effective disease-modifying therapies available, it is likely that the study of Long Covid may benefit ME/CFS patients as well. There is also overlap in symptoms of post–Lyme disease, suggesting that there may be common host susceptibility factors that underlie these illnesses.​

 

"

I don't think it suggests that at all, at least it wouldn't rise to the top of my list, and it certainly wouldn't be noted in such a singular fashion bringing up the rear (inconspicuously?).

Also, post-Lyme disease seems somewhat dated, or is he making a statement of some sort? That little political skirmish was fought five or ten years ago, and my understanding is no one at the NIH or CDC could prove Lyme was gone from infected patients, so it couldn't be said factually "post-Lyme". The more or less political compromise was post-treatment Lyme disease syndrome. To me, that still seems pregnant with unwarranted assumptions, but hey, I'll take it. It would seem this guy does not, and I'd love to know what he knows.

What I find particularly disconcerting is "...suggesting that there may be common host susceptibility factors that underlie these illnesses." To me this feels uncomfortably like patient-blaming.

I can think of several simpler and to me more likely explanations to explain any overlap in diseases. First and foremost: They all involve infections, arguably persistent infections, but at the very least they started with infections within most of their respective communities (ME/CFS being an exception sometimes, but I'd argue most cases evolve from an infection here, too).

They generate similar symptoms frequently. Many diseases do, which is why clinicians embrace the whole differential diagnosis ritual.

Also, each is characterized by inadequate diagnostics. Trying to get diagnosed seralogically for ME/CFS, LC or late stage Lyme can be a shitstorm of underperformance.

And let's not forget that two of the the three have a long history beset with politics and being pressured by vested interests to remain questionable (LC is the newcomer on the block; but it is already beginning to sense the side-long medical glances)

Common host susceptibility factors. They're human?

 

Agreed. Genes might prove to be the determining factor. Certainly they have in channelopathies, at least so far, and there is some overlap in symptoms with us there as well.

But for a large swath of patients with LC, ME/CFS, and late stage Lyme, there is a clear jumping off platform that is infectious. So to me tying the three together with "common host susceptibility factors" may prove correct - but it seems like such an incredible leap to get there once you squarely examine: a)the histories of the diseases and how the patient communities have been treated, and continue to be treated; b) who stands to benefit from an ongoing infectious pathology NOT being acknowledged; and c) diagnostics for many diseases suck - we frequently have been told otherwise, but there's enough data out there that it really isn't a secret anymore.

Genetics might prove to be the culprit. But I'd clean up the other areas I mentioned before I'd close the door on them. Yes, we can do things concurrently, and we should. Problem is, there will be plenty of forces pulling us to do what they want, and history isn't good to us when it comes to research priorities or execution.

 

While patients with longcovid (and those of us with ME) are desperate for a treatment it would be best to do intensive research into the biology of what is happening. Once the deficits are identified we will be much closer to working out what will help.

Longcovid and ME are likely to be more than one problem or single diseases with more than one presentation so it is important to know what needs treated. A drug for POTS may work really well for some people but if it makes someone with drug sensitivities ill or is given to someone who can't metabolise it because of some damage done by covid it may seem less effective than it actually is.

 

It might have triggered Guillain-Barré syndrome? There was a very small percentage from the J&J jab. People have also developed GBS after receiving the flu shot.

 

I've read that it's being referred to as autoimmune-lyme.

 

Vox: "How to spot the signs of long Covid — and what to do next"

Some quotes:

“Many people who have had Covid and who haven’t recovered are starting to look very much like ME/CFS patients,” says Lucinda Bateman, founder and medical director of the Bateman Horne Center, and an expert in the diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."

As is often the case with long Covid, ME/CFS is characterized by chronic, debilitating symptoms such as fatigue, pain, and cognitive dysfunction — and ME/CFS often persists at least six months. The cause of ME/CFS is not well understood, but it’s thought to possibly be triggered by a virus or another kind of infection. Bateman and other experts have been studying the parallels between long Covid and ME/CFS, hoping that this will give them a better understanding of both conditions."

"Bateman’s advice for long Covid patients is similar to the advice given to people with ME/CFS: “The first thing is to be very patient and give your body a chance to heal. Slow down. Don’t get in a push-crash cycle of pushing yourself, crashing, pushing, crashing. We tell people to pace their activity, meaning try to do the right amount of activity every day that doesn’t escalate your symptoms but keeps you moving.”

"Pacing yourself is easier said than done for most people; still, making an effort to slow down and listen to your body while you’re healing can go a long way. Bateman notes that brain fog is a symptom that tends to get worse in ME/CFS patients when they’re pushed beyond their limits physically and mentally, so taking care of yourself as best as possible could help. Getting enough sleep is a crucial — yet often elusive — part of that."

 

I'm 100% certain pwME will not present micro-clots.

 

Yes, that is a prominent theory, prominent in a couple of ways including who promotes it, and its underpinning logic. It may be correct. In mainstream Lyme circles (some of the manistreamist, so to speak) it's been a sort of Holy Grail to swat away any persistence arguments.

But it remains unproven. Irrefutable proof for some sort of residual immune dysfunction is as elusive as nailing down viable spirochetes - after any kind of treatment - as a cause for persisting symptoms.

 

Heal?? She discusses with ME/CFS people giving their bodies a chance to heal? What % of this community heals?

 

(not sure if already posted, mentions ME/CFS researcher Dr. VanElzakker)

NBC: ‘Worst Hell You Could Ever Imagine': Study Hopes to Shed Light on Long-Haul COVID"

"Dr. Michael VanElzakker is the scientist leading a new study, looking to analyze if the brain can shed some light on what causes some people to keep dealing with symptoms so long after diagnosis. He notes that the brains of those suffering long-haul COVID look different than those who are not."

"I think a lot of us knew there would be long-term consequences," VanElzakker said.

"We are interested in doing brain scans of people who have ongoing symptoms of fatigue or trouble concentrating to understand if there is inflammation in parts of the brain," VanElzakker said.

"The hope is that we can help people recover like they are used to recovering from a cold or flu, get them back to a normal baseline," VanElzakker said. "If we can understand the mechanisms that are driving the symptoms, then hopefully, we can help them be better."

"It is an awful human tragedy. It is scientifically interesting for sure, it is sort of a new frontier, so there is an excitement with the hope that we can figure out what is happening to people and hopefully help them recover," he said.