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

Some tweets from a long Twitter thread by a UK GP

 

NIH has just held a call for the “Recover” project (https://recovercovid.org/) regarding their announcement today of a $470M project to build a study population of tens of thousands of enrolled patients:
https://www.nih.gov/news-events/new...s-support-research-long-term-effects-covid-19

I’m not sure if this money is part of the 1.15B or separate.

Emily Taylor spoke very well on behalf of the Long Covid Alliance. They are working with the NIH to represent the long covid and ME patient voice in designing study protocols. The long covid alliance is built of mostly ME patients groups so we can feel very well represented, along with long covid advocates like Body Politic. https://longcovidalliance.org/

They are saying they hope to have trials within a year to 18 months.

 

https://www.irishexaminer.com/news/arid-40698590.html

 

Not vague it's just people like him are too.....to understand something that isn't a number, and too ....... to figure out how to make it a, valid, number.

 

https://www.telegraph.co.uk/news/20...suffering-long-covid-might-not-actually-have/
Paywalled

 

No mention of ME, but an interesting article.

Inews Scientists are only beginning to understand why coronavirus symptoms can linger for months

Quotes:

Many people suffering from long Covid feel worse than patients with advanced lung cancer, according to the first major study to quantify the impact of the condition on people’s lives.

The average score on the standard EQ-5D-VAS “quality of life” test among 800 long Covid patients at 15 NHS trusts was worse than for most people with cancer, including some of the most advanced stages of lung cancer, according to University College London (UCL).

The study found that patients were “severely impaired” in performing everyday tasks such as working, shopping and looking after their children.

Professor Elizabeth Murray, who is overseeing their treatment as part of the Living with Covid Recovery programme, says: “It was a real wake-up moment.”

...

“Some people are still ill after the first wave – but that is the minority. The fundamental message that clinicians are giving to patients is that they should expect to get better. We don’t know when, but they should expect to get better. A lot of people are getting better between six, nine, 12 months – and we do expect people who are still not better at 12 months to get better eventually.”

“Not that progression is likely always to be one-way, so patients should hang in there and try not to become too disheartened if symptoms get better and then worse – which is easier said than done.

“It remains a very fluctuating course of disease. It’s not linear. People don’t go from being ‘very poorly’ to ‘less poorly’ to ‘not poorly’ to ‘better’. They go up and down like mad. But overall the trajectory is that they get better eventually.”

 

That all seems quite good apart from the omission of the last four words..."except when they don't".

 

Dr. Charles Shepherd has commented the article on Facebook:

- "This is a long and fairly comprehensive review of Long Covid
But there's nothing really new and it's very disappointing to see no acknowledgement whatsoever of the important clinical and pathological overlaps between Long Covid and ME/CFS
I'm amazed that the growing number of virologists who are looking at the link with reactivated herpes virus infections such as Epstein-Barr virus (the glandular fever virus) don't appear to realise that there has been lots of research in this area in ME/CFS, including the recent sub-grouping study from the ME Biobank (which is funded by the MEA Ramsay Research Fund)

Full comment here

 

Is that an admission of having been asleep at the wheel?

 

Long Covid less common than feared - ONS study
dreadful article on BBC website repeating this message with a lot of comments (mostly not good)
https://www.bbc.co.uk/news/health-58584558

 

Deepti Gurdasani (from twitter bio: Senior Lecturer @QMUL Epidemiology, statistical genetics, machine learning) has a critical thread about the article and study here:
https://threadreaderapp.com/thread/1438780287958257664.html

ETA: Corrected link

 

I know. Another BBC article misrepresenting bad news as good. Presumably they just repeat what spin sheet they are given. At the end of the article the BBC's Head of Statistics gives a token bit of qualification to prove he read the ONS study.
I read it last night. It had the results of 3 studies and the range of 3% to 14% depended on what questions they asked . The lowest percentage was achieved by defining long covid with a narrow list of symptoms. Significantly this did not include brain fog nor specifically fatigue. The highest percentage was when they allowed respondents to self identify their own symptoms of long covid which presumably would have included brain fog, fatigue and others
So a long way to go before we can get the bunting out and the ONS recognized this, making it clear that there were lots of known unknowns (as the lord of semantics once said). The BBC didn't

 

I can't read the Telegraph article because monthly limit but what do they mean by "normal bouts of illness"? Sounds a lot like "illness works in mysterious ways". There is obviously no such thing as a background of spontaneous illness, there is nothing "normal" about illness. What is with the normalization of illness? I don't understand why it's argued as perfectly normal and OK, not even worth the trouble, for people to be severely ill on a regular basis. Who decided that this is "normal"? This will look so ridiculous to future generations.

If they mean other illnesses caused by pathogens, then that needs a lot of explanation about how evidence supports those claims, especially given the data on other infections having dropped ~99% because of hygiene measures. Because as part of the explanation is the idea that such illness, like a cold or flu or maybe a bit of food poisoning, is always short, hence why most long haulers were initially told that it's impossible for a viral-triggered illness to last more than 2 weeks and therefore it couldn't be that. If they mean something else, this needs even more explanation, because it's otherwise either ex nihilo illness, or they mean psychosomatic but can't actually voice it because it's an obviously absurd claim.

In the category of "extraordinary claims", this one goes to 11. It needs extraordinary evidence while being supported by none. But if health and medicine can't escape from being politicized it's hard to see that we can ever get out of this without a massive scientific breakthrough coming out by pure chance, this is total system dysfunction.

 

I don't think there is anything we could have done to make people understand how this plays out, it has to be experienced in full long enough for it to sink in. Even while living it it's unbelievable, simply too hard to accept that medicine may be this dysfunctional and politicized. Even for physicians.

https://twitter.com/user/status/1438619432654344194

https://twitter.com/user/status/1438886939172687876

 

I was confused by this too.

I too have not read the article, but unless they are referring to very occasional seasonal viruses, the only situations I know of where individuals regularly have frequent bouts of illnesses is where their is an underlying health condition such as an immune disorder of some sort, ME/CFS, or even speculatively Long Covid.

 

It's just embarrassing that 18+ months into this, medicine is so glued in place that we are still seeing the very same articles as from the very beginning, just more and longer. Still interviewing individual patients and reporting stories of neglect, failure and suffering, with the odd physician saying the exact same things as in the beginning, apparently not much bothered by the complete lack of significant progress. This is the biggest faceplant in the history of expertise given the excess of warning going back decades, and explicitly voiced in our case.

In related musings, it's amazing that thousands of people effectively predicted this major event and no one seems to care to speak to them or recognize this basic facts. Everyone hates Cassandras. It almost sends the message that it's better to be wrong for the longest possible time than being right in advance. Zero awareness in this article that this is not at all new.


The Backstory: Long COVID causes fatigue, pain. Here's what long-haulers want you to know.
https://www.usatoday.com/story/opin...onths-longer-what-you-should-know/8334774002/

 

Some weird discussions happening over the latest ONS data and people nitpicking reasons to interpret data one way or another depending on what version of reality they prefer. In unrelated matters, this is what put me off studying politics, found that there was way too much interpretation and arbitrary argumentation going on. Turns out it's basically typical of academic, the exact same is happening in public health and medicine. It's arguing different things various schools of thoughts present as arguments but it's mostly just that: arguing.

The main issue is: do symptoms-based reports need control groups? Given that we have a background of data and that no control group would be truly representative as a control anyway. Especially considering how so many basic functions of society, like actuaries, depend on comparing to a norm. You know, just like we do for excess mortality.

Hey, meanwhile it's just millions having to endure months, by now pushing on two years for some, of no help whatsoever. No big deal, or anything like that.

https://twitter.com/user/status/1438933335347245057

 

Has anyone linked Harville & Arthurs' findings in Arkansas yet? Dr Fluks just piped this through his feed.

https://www.goodnewsnetwork.org/uams-finds-potential-cause-of-covid-long-haul-symptoms/

They are reporting an autoantibody to ACE2 in 81% of longcovid patients.

It was a small study with only 67 patients and 13 controls.

A new study for 1000 patients is planned.

My inner sceptic is saying it makes sense and is neat and logical but a bit too neat when they are already discussing pharmaceuticals. Also what about the remaining 19%? If they dont have this ab then do they just get the airbrush treatment like ME?

However on the cup half full side, if true, it would show how bogus the naysayers are and we should not waste or forget that lesson.

Hopefully it will also inspire people to consider this kind of resolution in ME and stimulate further research for us and the 19% of longcovid apparently not showing this ab.

 

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0257016

The study is interesting, but I'm not sure they're measuring what the think they're measuring - they claim they can't tell the difference between IgM and IgG for example.

The discussion also has a lot of nonsense about the antibodies being anti-idiotypic, which is neither necessary, nor likely and they don't actually provide any evidence for the claim.
They also claim that anti-SARS-CoV-2 antibodies "last for only a few months", which is nonsense. Yes, antibody levels drop from an initial peak (as high levels are no longer necessary when the infection is eliminated), but they don't drop to zero and we know germinal centres remain for a long time, along with presence of follicular dendritic cells that retain the antigen (in small amounts) for 18+ months etc.

This is not compelling evidence.

They claimed that "Addition of plasma that contained an ACE2 antibody inhibited ACE2 enzyme activity compared to addition of plasma without an antibody" however, addition of SARS-2 positive patient plasma led to activation ACE2 activity, despite the apparent finding that the antibodies against ACE2 was present in 93% of such patients' plasma.

That contradictory evidence is not compelling either.