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

My guess would be it's slang for original.

 

My feeling is that Collins is not the problem and that there is extreme hostility within the NIH, from certain individuals. Like in the uk if you go near ME say goodbye to your career.

 

Scientists set out to connect the dots on long COVID

"Too many have died from COVID-19, but fortunately many have recovered, most without the need for hospitalization. Yet many recoverees are plagued by often life-derailing symptoms such as breathing problems, deep fatigue, joint pain, ‘brain fog’ and heart palpitations. Long COVID will affect, and already is affecting, millions of people and needs to be taken seriously, says Adrian Hayday, an immunologist at the Francis Crick Institute. Data are still emerging, says Karolinska Institute researcher Petter Brodin, but to a first approximation it appears that 70–80% of people experiencing severe acute reactions to COVID-19 are men, whereas women comprise 70–80% of those suffering from long COVID. The average age of long-haul patients is 40, says neuroimmunologist Avi Nath, who is intramural clinical director of the National Institute for Neurological Disorders and Stroke (NINDS) at the US National Institutes of Health (NIH). “They are in the most productive phases of their lives.”"

https://www.nature.com/articles/s41592-021-01145-z

[Contains a passing mention of ME]

 

The journalist Vivien Marx has tweeted a thread about the article, including links to three podcasts that she made with those interviewed in the article (haven't heard them myself yet)

 

There's a transcript of the podcasts. After a quick skim it seems that it's only in the podcast with dr. Avindra Nath that ME is mentioned. He also talked among other things about exercise intolerance in Long Covid. Here's link to podcast episode and transcript.

Quote:
And I've talked to a lot of people now after the first phase, a month later, they were developing all these symptoms, I followed up with them. And some are getting better. Not everybody has gotten better. But, you know, more and more time lapses, more and more people do spontaneously keep getting better to some degree. So that is really there. Now, do they get better to the degree where they can resume their normal activities, that varies from individual to individual But yes, there is a little bit of hope in that regard.

Vivien: Some people with long-COVID say that they feel better when they receive the vaccination against SARS-CoV-2 the virus that causes COVID-19.

Avi Nath 9:45

It's an interesting phenomenon. The thing is, this is known to occur in other diseases. Patients with ME/CFS or Chronic fatigue syndrome, they will also tell you they got the flu vaccine or something, they actually got better. But what they will also tell you, it doesn't last that long. Yeah. So about a month or something or whatever. And then it comes back. If they have undergo surgery or something, they'll feel better for a little while.

 

He made a weird comment about how it affects school performance in kids. What an odd thing to focus on. He really doesn't get it at all, the severity and totality of how much it disrupts life. Very disappointing, though unsurprising.

But to dare claim that they are doing a lot is sheer dishonesty. Sounds like something he likes to tell people at parties. This was not an investigative hearing, it was friendly chit-chat about misbehaving children, or something of similar importance. Zero urgency or appreciation of what they did to us.

 

French study on LC patients. Used text analysis for free-form reporting of symptoms by 492 patients. Identified PEM without asking for it or knowing what it is. Doesn't add much we didn't know but yet more confirmation.

Thread by a research in French but gonna be lazy and use someone's translation:
https://twitter.com/user/status/1387776638704922636


Paper:

Development and validation of the long covid symptom and impact tools, a set of patient-reported instruments constructed from patients’ lived experience

Open access: https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciab352/6252414

 

One of the weirdest things in all of this disaster is how precisely and effectively everything is lined up to guarantee the worst possible outcomes. Whether it's ME or LC or whatever, this is exactly how to achieve the maximum harm and the absolute worst possible outcomes for everyone.

It's a really fine-tuned machine, truly the best at being the worst. But of course if you never look back and assume you are infallible, that's the only possible outcome.

As the NHS teaches and uses in clinical practice, I guess the bastards don't want to get better. Not my words, this is effectively NHS policy and a widespread medical belief. Turns out relying on beliefs and fraudulent mediocre research is a bad idea. Who knew?


Long Covid: NHS staff 'pressured' to go back to work

https://www.bbc.com/news/uk-wales-56909635

 

It appears that the CDC will produce guidelines for LC, possibly recognizing the overlap with ME, before they produce guidelines on ME, a process that started... what, 3 years ago?

https://twitter.com/user/status/1388269183176167433

 

oh hells the political parties are talking about counselling and wellness . i guess a lot of nhs staff are going to learn the hard way about how their services are being dragged into the dark ages .

 

Coyne has some good comments re exactly this

 

Medical News Today: Long COVID and children: The unseen casualties of COVID-19

https://www.medicalnewstoday.com/articles/long-covid-and-children-the-unseen-casualties-of-covid-19

Quite a long article, focusing a bit more on personal experiences (coming from the moms who mostly get blown off by doctors). Here are some parts I liked or found interesting (chronic fatigue syndrome is mentioned once or twice):

 

The mother of a child patient is clearly and obviously more informed on the condition than the doctors they consult and others interviewed for this piece, literally recommending the very thing that makes patients worse, showing they are unable to learn from experience. Hell, the child probably is. The doctors sure know a whole lot more about what it isn't, but they know nothing about what it is, have a completely distorted perception of reality.

Medicine's failure to address chronic illness and its explosion in Long Covid is probably the single biggest boost to the alternative medicine industry ever, and a boon for anti-science propagandists. So many people will have lost any trust in medicine and they have every reason to. The implications of this are massive and no doubt have a significant effect on vaccination rates. Certainly not as much as propaganda but those impacts will remain for decades to come.

It's a pretty regular topic in LC forums, people are shocked and outraged that something this barbaric still exists. Medical professionals massively underestimate the impact of losing people's trust in their profession, they don't seem to think that it matters at all, and of course they never examine the possibility so they can't even find out. They can only know this by listening, which if they did they wouldn't be doing. Ideological echo chambers are an undeniable cause of Dunning-Kruger effect, even in the best circumstances.

 

Continuing on the topic above of LC children being gaslighted. Irony is truly the eternal force of our universe if it just keeps getting killed every day and yet is still around.

Is it their perspectives that need to be heard? Or a wild misinterpretation of those perspectives?


Long COVID in children: the perspectives of parents and children need to be heard
Frances Simpson, Carolyn Chew-Graham and Amali Lokugamage

https://bjgp.org/content/71/706/216.long

And they have people like Chew-Graham to blame for this. As in really they should blame the hell out of them, personally and directly. How in the world does it make sense for someone to essentially "study" her own failures and seemingly fail to recognize this. The mind truly boggles.

Straight from the mouth of someone who has been marketing elaborate narratives of the very same thing for years along with colleagues who have been doing the same for decades. And as if what people want is "narratives". Good grief the hubris.

This is like a prominent HIV denier doing HIV research without skipping a beat or feeling any need to justify this complete reversal. People can be weird like that but how is no one bothered by that? Seriously? Makes sense since no one actualy pays attention to the substance but still...

 

I dont know if this has been covered but this looks like the right thread to mention that Dr William Weir has expressed an opinion on longcovid as ME.

https://meassociation.org.uk/wp-con...ome-and-MECFS-by-Dr-William-Weir-09.09.20.pdf

However if one reads the opinion it is clear that he believes ME is an inappropriate immune response without ongoing pathogenic cause.

This is speculative and in my case definitely not true, as I have empirical evidence of recurring virus diagnosed by visible lesions and repeat PCR which I consider conclusive and indisputable evidence my own illness (diagnosed as ME /CFIDS) involves ongoing active viruses. From what I understand I am not alone but this kind of condition may represent only a subgroup of all PWME. It is possible that other PWME may have different kinds of ME.

IMHO I dont believe the perspective he expressed is evidence based and because of my evidence I (constructively) dispute this view and urge caution in making any such assumptions and instead we should regard this as an hypothesis which needs testing, in accord with the scientific method.

 

I've had ME for 30 years. Sudden viral onset and PVFS for 5 years or so. Started improving with no noticeable viruses for 6 years after that. After taking immune modulators in 2001 and relapsing (reactivating HHV6 and EBV), I continue to have reactivations for the last 20 years.

I've had PCR testing when I felt 'viral', but the tests come back negative for several viruses. I also get visible lesions but don't make appt's with my doctor to get tested. and she wouldn't do for me anyways.

I don't think I have 'ongoing viruses' despite reactivations. It's more complex than that, and I feel that my immune system is not keeping them in check. Taking antivirals for years is not going to 'fix' the problem, it can possibly make things worse long term according to Dr. Ron Davis.

My lymphocyte phenotype indicates my CD4, CD8 etc are all below normal range and not functioning properly.