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

The problem too is that everyone with long COVID is still in their first year of the post viral syndrome stage. My ME symptoms and overall experience were so different in the first year than the years that followed, and it feels so completely different now than it did then. The disease evolves and changes. It makes for a false comparison unless you ask people with viral triggered ME in their first year to compare it to long COVID in the first year.

 

Loud and clear. I did not have significant fatigue until years later. Before and in that time I did have mild fatigue but absolutely nothing that compares. And even then it never was a defining symptom, hence why comparisons to "chronic fatigue" completely fail.

But it is telling, that in a scientific paper they choose to separate two highly similar conditions, a question of major importance and deserving of careful consideration, because of... feelings. Even literally stating so. Just that. Feelings. And this passed peer review. Frankly peer review in medicine is a complete joke. Strict in some aspects but on others anything goes.

So have we now entered the era of feelings-based medicine? Not that it's new but that it's becoming a norm. Let's skip real trials and just go with the feelings of self-proclaimed experts, is something currently actually argued in a major medical journal. That's feelings. Because that's also about the argument given in the NICE LC guidelines as well, they felt ME was out of scope. Because feelings. None argued, or even stated. It just feels out of scope because it feels out of scope and nobody wants the stink of "chronic fatigue" so let's... leave us mistreated, I guess? Yeah that oughta solve everything. Let's keep the conditions in place that led to COVID long haulers to be dismissed the usual way yet again, guaranteeing its continuation in the future if there's ever the tiniest hint of a feeling that it's different.

Not only is medicine regressing, the regression is accelerating. At least in the chronic illness space. Acute medicine is doing amazing. Oh, chronic medicine, why can't you be more like acute medicine, competent, responsive AND scientific?

 

The Wall Street Journal - Experimental Drugs Aim to Treat Long-Haul Covid Patients

Leronlimab, a monoclonal antibody administered through subcutaneous injections, was developed as an HIV drug. When the pandemic hit, the company shifted to Covid-19. The same receptor that allows HIV to enter cells is also important in regulating immune cells; som doctors believe long-term Covid symptoms are caused by the immune system going haywire.
...
"We are hopeful we can control the neuroinflammation in the brain which we think causes a lot of these problems with autonomic dysfunction, fatigue, brain fog," says Dr. Kelly.
...
Organicell, a Miami-based biotechnology company, is looking at testing Zofin, an experimental drug tested for chronic obstructive pulmonary disease, or COPD, on long Covid patients. Zofin uses nanoparticles to reduce inflammation and microRNA to target different genes.
...
Some doctors believe that some long-haul Covid patients are suffering from myalgic encephalomyelitis/chronic fatigue syndrome, a post-viral condition. AIM ImmunoTech, an Ocala, Fla., biotechnology company, recently got approval to expand its ongoing clinical trial for CFS to include Covid patients who have chronic fatigue-like symptoms, says Tom Equels, CEO of the company. The company is treating patients with Ampligen, an experimental antiviral drug administered as an IV infusion.

 

Sometimes I wish there was a "Really like" button.

 

That might sound impressive to investors but I believe the trial is just open label, uncontrolled clinical care with maybe 100 (?) patients. My guess is not many long haulers will take part.

 

it's funny how this keeps coming up as an explanation for symptoms like brainfog, and yet one of the main objections by some to using ME as a name was because they said there was no neuroinflammation.

How are they now able to say it's what is causing the problems for covid-19 patients?

 

Australian study finds COVID-19 'long haulers' suffer symptoms months after coronavirus infection

https://www.abc.net.au/news/2020-12-23/long-term-effects-of-covid-study-in-medical-journal/13007498


Not much new but posting because:

The longer our BPS overlords and their enablers dig in their heels and their nonsense remains perceived wisdom, in places like NICE and Cochrane the inaptly named Up-to-date or Mayo, the more people will continue to be hurt by ignorance. Because for most of those, especially things like the Cochrane review on exercise, all the framing is on fatigue. These people do have fatigue, therefore it applies.

At least now the second part, the payback, is acknowledged. Only in this specific case, though. Why for them and never for us? Who the hell knows, when you pick and choose evidence nothing matters. That's about the smallest bit of progress that can possibly be made, a quantum packet of begrudging progress.

 

The Mysterious Link Between COVID-19 and Sleep

https://www.theatlantic.com/health/archive/2020/12/covid-19-sleep-pandemic-zzzz/617454/

Missed this because the focus seemed to be only on sleep but it has some good bits:

Glad some people are finally seeing this pattern. About damn time.

I would say discriminated is more accurate than stigmatized but still, good to see it clearly.

 

It's getting weird living in a world in which those 2 things are true:

1. Medical professionals reject the ME name because there is no evidence of neuroinflammation
2. A sober look at the evidence, detached from the manufactured controversy, almost always leads to the conclusion of: wow this really looks a lot like neuroinflammation if only we could confirm the evidence

No guarantee it's that. It's just that it really looks a lot like the best possible explanation. Which was always the basis. Hence the incessant requests for decades to study this.

Amazing doublethink. Different context, I guess, going from disbelief over how our symptoms, insisting they can't possibly be real and therefore not worth looking, over accepting it is believable in this case because the symptoms are at least somewhat believed.

 

I am not aware of this ever being a sober look orbiting detached. It is just chucking out another buzzword. I think the situation is clear - there is no evidence of brain inflammation. And the clinical picture does not even suggest it.

I am not sure there is so much doublethink here as different people wanting to prove different beliefs.

 

Because that's what he 'believes and "thinks" is occuring:

 

Then lots of neurologists are throwing buzzwords, independently. Which may be true, but I've lost count of neurologists saying they suspect this is the most likely cause. If it's wrong it's wrong, it's just the contradiction of this being often stated as a promising hypothesis when looking at similar cases while being soundly rejected as being possible at all with us that is comical. Very similar to the odd conflict of there being multiple post-XXX syndromes but somehow the idea of there being a post-infectious illness phenomenon being silly. Weird twisted logic.

There's no convincing evidence yet that leads to a credible cause. There usually isn't until there is, though. Pretty much by definition, the explanation of the cause here will defy medical science and have no evidence, if it didn't we'd already know about it.

 

High rate of persistent symptoms up to 4 months after community and hospital-managed SARS-CoV-2 infection

https://www.mja.com.au/journal/2020...ter-community-and-hospital-managed-sars-cov-2

In Australia. Pre-print.

 

This was covered in Australian news and:

https://twitter.com/user/status/1341530923137810432

 

https://twitter.com/user/status/1341824182963884032

 

Haven't watched, 28 min. Will try tonight. From Germany.

https://www.youtube.com/watch?v=VGzxmxhVJ9w

 

Looked liked yet another annoying rehabilitation study at first

https://twitter.com/user/status/1341409610004131842


But upon closer look it seems like they adapted to feedback and understood that figuring out why rehabilitation is not happening is more important than trying to mash it into shape.

https://twitter.com/user/status/1341409614823342081


Even took material from the ME clinicians coalition, I think the first sighting I have seen in the wild. Encouraging, they seem to understand PEM well enough to provide a safe study.

https://twitter.com/user/status/1341409621546835968


https://twitter.com/user/status/1341726037441441792


Local researchers from Quebec City so I pointed them in the direction of Moreau's team. Fingers crossed.

 

Neurological Manifestations of COVID-19 Feature T Cell Exhaustion and Dedifferentiated Monocytes in Cerebrospinal Fluid

https://www.cell.com/immunity/fulltext/S1074-7613(20)30539-2

One thing that's been noted is that severe patients, in the ICU severity sense, experience more numerous and more intense neurological symptoms. Another thing is one notable factor in Long Covid appears to be number of symptoms at onset, especially neurological. Many arrows pointing in the same direction.

 

Good work rvallee!

 

https://nsuworks.nova.edu/grant_awards/24/
https://twitter.com/user/status/1341925393457180672