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

[Hoopoe]

Reading some comments the impression is that Long Covid in the UK seems to have credibility problems as result of being so unspecific and new.

That's one downside of trying to re-invent what in many cases seems to be ME/CFS.

I view the dislike of being associated with ME/CFS as direct result of the CBT/GET proponents. They are continuing to harm patients with their bizarre ideas that make this illness look like a joke.

 

[Hoopoe]

If people had said that the virus triggers ME/CFS, would that have led to it being taken more seriously? It's hard to say but maybe. There is existing evidence that children are susceptible to lifelong ME/CFS and that could plausibly have an effect on policymakers willingness to expose children to the virus.

The figure of 10% risk after infection that would have been used if ME/CFS had served as reference, even if inaccurate, allows at least a rough estimate of risks.

 

[CRG]

Do you really think it's the patient community that is responsible for the communication gaps which frequent research studies and clinical practices?

I'm not sure how that follows from what I wrote. The point I was making is that language is challenging and most of the time language only has to be 'good enough'. It's not a matter of who is responsible rather it's about recognising that if communication between people is part of a process then imperfection is going to be inherent in that process. As I said, of course researchers should be conscious of how their questions are structured but in the study that we were discussing, the authors had no control (other than include/exclude) over sources which covered multiple responders, multiple questionnaires, and multiple languages. And that is inevitable when dealing with emergent, putative and hypothesised conditions in the midst of a pandemic.

So, who do you imagine crafts a given set of disease characteristics? It isn't the patients. Sometimes it isn't even with patient input, or it's DESPITE patient input, and even contrary to it.

Again I don't understand how you get that question from what I wrote. If there is a new, or previously unrecognised disease or feature of disease, unless it is a laboratory or clinical finding, then descriptions of symptoms come first, and (in most cases) from non medics. And those non medics will use ordinary language with ordinary meaning where ordinary is related to a specific language and to a specific culture - not everything happens in English.

What we currently have in the agglomeration that is Long COVID and all its related appellations is a melange of descriptions which have come from the use of ordinary language - certainly clinicians and researchers have added medical language, and medical terms in common usage have been swapped around via a billion conversations picking up new common meanings with new certainties along the way. Until the agglomeration is parsed clinically into meaningful scientific entities it remains largely an artifact of ordinary language. Eventually there will be a set of discrete, mostly precisely drawn descriptions of what the COVID 19 virus can do to the human body, and from that point researchers can confidently set their questions with great specificity to further elaborate understanding of how COVID 19 behaves.

If a researcher cannot distiniguish symptom severity in healthy controls vs an infected cohort, then that researcher may wish to consider changing professions.

But that is not what is in question. In the case of post COVID (and as it happens ME/CFS) there is no infection to control for - there is only the patient's testimony. And that testimony will most often be in ordinary language. If there is comparison (not control) between those who have tested positive for COVID 19 and those who test negative, across a large population and both groups( age, gender, demography etc matched) report similar levels and chronicity of pain and discomfort, using commonly understood terms, then it is problematic to separate them by clinical entity.

If Long COVID is an entity that exists (as it presently does) in large part as something that has been described using ordinary language then there is no reason to think that subjecting that language to interrogation, (as would be the case in the research paradigm you are rightly arguing for) would not see that entity reduced to something other than is being currently described.

I suspect some patients would reply that their symptoms exist regardless of who is writing the medical texts - or whether anyone bothers to write them down at all.

IMO, if a researcher cannot come at a disease from the patients' perspective, and incorporate that perspective without diminishing it, then the product that comes from his/her desk is likely flawed. Both clinical and medical research arrogance undos progress far too often, and that unraveling is almost always at patients' expense.

Medicine is not dogma, or at least it should not be. Nor should it reduce down to rhetoric or semantics.

Yes of course patients would reply that their symptoms exist regardless. Just because something doesn't have a name or hasn't been described, or separated from all other 'things' doesn't mean it doesn't exist. That's where we've been to varying degrees with ME/CFS for fifty years, but without description and specificity you can't have the precision of language that you are asking for.

And that precision needs appreciation of rhetoric and semantics, they are not in themselves reductive just ways of understanding certain aspects of language. Medical science is reductive and will remain so because the perspectives of 8 billion humans who all have a perspective on illness, simply can't be accommodated. There are efficiencies to be had in involving patients in research, and separately in having real partnerships in clinical decision making, but science is difficult and philosophical idealism can be as much a block to progress as any misplaced dogma.

 

[Kalliope]

Salon The kids are not alright: Data suggests 10% of children with COVID-19 become "long-haulers"

No mention of ME, but dr. Peter Rowe is among quoted experts:

"No one is certain exactly how many people who've had COVID-19 end up being long haulers," wrote Johns Hopkins University School of Medicine Professor of Pediatrics Dr. Peter Rowe on the American Academy of Pediatrics' "Healthy Children" website.

He continued: "One study showed that as many as 52% of teens and young adults between ages 16 and 30 may experience lingering symptoms 6 months after having COVID. The U.K. Office for National Statistics estimated that 12.9% of children 2 to 11 years of age, and 14.5% of children 12 to 16 years old, still experienced symptoms 5 weeks after infection."

 

[rvallee]

LC data in general are all over the place but in pediatrics they pretty much literally go from 0% to nearly 50%.

One notable trend I am seeing on twitter is physicians mentioning they are seeing a massive influx of "can't recover after Covid" patients and many of them are pediatricians (and seemingly unaware of LC). For nearly the first 2 years it was common to say they weren't seeing any of it and recently I'm seeing some reporting that most of their recent cases are.

Ah, the long-tested human tradition of waiting for a problem to grow to disastrous proportions before acknowledging it exists at all, then maybe think about how someone, anyone else, should do something, maybe, no pressure. It works terribly but it sure works, by way of leaving no other choice.

 

[Hoopoe]

The increase in pediatric cases could be due to the policy of exposing children to the virus and the appearance of the omicron variant.

It all seems horribly consistent with an ideology that views people as disposable and has no intention of taking responsibility for caring for the children that will develop complications.

Why do western nations not do the same things the successful Asian nations are doing?

 

[duncan]

nd that precision needs appreciation of rhetoric and semantics, they are not in themselves reductive just ways of understanding certain aspects of language. Medical science is reductive and will remain so because the perspectives of 8 billion humans who all have a perspective on illness, simply can't be accommodated. There are efficiencies to be had in involving patients in research, and separately in having real partnerships in clinical decision making, but science is difficult and philosophical idealism can be as much a block to progress as any misplaced dogma.

That is a very optimistic observation in an age where research shenanigans at the expense of patients happens time after time after time in contested diseases.

Yes, words matter. Who writes them matters, too. You wrote "Its not a matter of who is responsible..." When it comes to contested disease, far too often it is. Sometimes the people who write the descriptions and explanations and inferences etc, don't have the patients' best interests. It's not necessarily about medical Science, or even the patients (who may simply become a means to an end). Sometimes it's about medical politics and power.

Oh, and when it comes to the sanctity of the written word in medically contested conditions, I try to never lose sight of Murphy's Law.

 

[rvallee]

Lots of discussion happening between long haulers about exercise rehabilitation and PEM. pwLC will be far more militant than we have ever been, having been able to communicate in real-time while it was happening, not facing this entirely alone without any context. The BPS ideologues are in for a big surprise, having never seen an actual militant patient community yet.

And on the first tweet, as best as I can tell the only study to have asked about a history of allergies or post-viral illness is... youtuber Gez. I am not aware of a single academic study asking about it. It's impossible to solve a problem when the most important questions aren't even asked. And a multi-trillion dollar industry made up of tens of millions of highly trained professionals being outdone by a youtuber with no medical training is the kind of situation that is too absurd to satirize, and yet here we are, 2 years into it. Hence no progress. Yay for ideological dogmatism!

 

[Hoopoe]

The long covid community in some ways seems much more capable than the ME/CFS community when it comes to getting organized. That so many got ill in a short timeframe, and so severely, and that many of them are doctors will help them a lot.

 

[duncan]

Let's see what happens when the blush is off the rose. What will the sentiment be five years from now? Three? Time is not on patients' side with so many monied interests wanting their own outcome.

 

[Ash]

Why does this always get written in the past tense? None of this is over, it's in fact worse than it ever was. We are in the absolute worst phase of this, despite the advances that were made, because none have made any difference.

This is not something that happened a generation ago. It is happening right now, damnit. It keeps erasing the present while discussing the exact same issue being erased.

Ugh. Despite being generally OK overall. But where does this idea even come from? Who do they talk to that says it's in the past?! While literally discussing it happening right now. Blergh.

Myth of progress.

 

[Ash]

Times journalism - Health

1. Health = Lifestyle

2. Times readers, Health = Lifestyle challenges

3. People poorer than Times readers, Health = Lifestyle choices

4. Times journalist qualification to write on Health = knowing someone who is a) facing a lifestyle 'challenge', b) knowing someone who can very expensively ease that challenge. Being a) = exceptional qualification.

Some of your finest analysis, I treasure this.

 

[rvallee]

The thing where medical doctors need to experience a disease in order to understand it is really just about the lousiest, most dysfunctional system that could possibly be built. And not just experience it, but confirm that experience through a child suffering the same, alongside millions for even more validation.

With hindsight, sane people will genuinely wonder how we didn't break things and do disruptive activism, it is certainly well-deserved, and the simple answer is that we simply couldn't, our illness made it impossible and it would have backfired massively. And 100% of the blame is on medical institutions, all of it, all the suffering, all the deaths and pain. Because they are so poorly trained on this that they don't recognize it when it happens to them. Shameful and uniquely broken.

 

[MSEsperanza]

The Guardian: Long Covid: nearly 2m days lost in NHS staff absences in England/ Ian Sample /24.01.2022

(ME not mentioned)

MPs urge support for workers after data shows extent of ongoing illness in first 18 months of pandemic

NHS trusts in England lost nearly 2m days in staff absences due to long Covid in the first 18 months of the pandemic, according to figures that reveal the hidden burden of ongoing illness in the health service.

MPs on the all-party parliamentary group (APPG) on coronavirus estimate that more than 1.82m days were lost to healthcare workers with long Covid from March 2020 to September 2021 across England’s 219 NHS trusts.

[...]

“Thousands of frontline workers are now living with an often debilitating condition after being exposed to the virus while protecting this country,” she said. “They cannot now be abandoned.”

The Office for National Statistics estimates that 1.3 million people, or 2% of the population, are living with long Covid, based on people self-reporting symptoms that last more than a month after a Covid infection. More than half a million have had symptoms for at least a year, with ailments ranging from breathlessness, fatigue and a cough to muscle aches and pains, “brain fog”, headaches and palpitations.
[...]
“As we start to grapple with the long term effects of Covid, the government will need to look at the wider socio-economic impacts of the disease, including who needs specific support. While this is a decision for government, we know that worklessness and economic deprivation increase demand for mental health services, which are already under incredible strain.”

More at link

https://www.theguardian.com/society...2m-days-lost-in-nhs-staff-absences-in-england

 

[Dakota15]

Forbes: "Even Mild Covid-19 Can Cause Brain Dysfunction And Cognitive Issues"

Forbes feature highlighting Dr. Iwasaki (Yale) & Dr. Michelle Monje at Stanford:

Quote: “Yes, I think we're only scratching the surface now with the link between viruses and diseases. The EBV/MS connection has been speculated for a long time and now that new paper really solidifies that link,” said Iwasaki. “The more we study the link between the virus and the disease, like with long Covid, we are hoping to inform better therapy for ME/CFS and other pathogen-related long-term conditions,” she added.

 

[rvallee]

Ah, yes, but what about the secondary benefits of those 2m days lost? Surely they must amount in the... tens of pennies. Once someone looks under the cushions, or something.

A rough estimate on the cost of losing a full day of work for a licensed MD is easily above $1K, so that's an easy $2B in economic losses, and a massive undercount at that, far from over. Just for health care workers, but that means direct losses for the government so it's easier to quantify than in the general population.

The UK government spent about $8M on the PACE trial, double that amount for the other peripheral trials and a few tens more for the all-quantity-no-quality brute force approach and the useless clinics. And $2B in direct economic losses is a very low estimate for one dimension in one event, with annual baseline losses from ME alone already on that order of magnitude, going back decades. For one country.

In the history of ROIs, the BPS ideology is probably in the top 10 of worst performers in all of history, rarely has money been spent so unproductively, that wasn't in the form of champagne and caviar baths anyway.

 

[rvallee]

Step right up, I have a 2-for-1 on twitter threads. Hot and fresh from the oven.




Also picking another from the first thread, this has been known for many years, and among the many scandalous things will be how a community of sick people have been depicted as borderline terrorists harassing good researchers while the real story behind the scene was the exact opposite. The B in BPS stands for bullying, it seems.

 

[Mij]

I appreciate Simon and his support, but he doesn't understand PEM and using it as a general term- PEM does not subside for pwME.

I want to specifically highlight a tweet from his thread above:

 

[Dolphin]

I appreciate Simon and his support, but he doesn't understand PEM and using it as a general term- PEM does not subside for pwME.

I want to specifically highlight a tweet from his thread above:

View attachment 16395

Studies that have followed adults after infection e.g. Dubbo (EBV/Ross River virus/Q-fever) and adolescents e.g. Chicago (Katz/Jason) have found that many who satisfied Fukuda criteria for CFS at 6 months didn’t at 24 months.

 

[cfsandmore]

Forbes: "Even Mild Covid-19 Can Cause Brain Dysfunction And Cognitive Issues"

Forbes feature highlighting Dr. Iwasaki (Yale) & Dr. Michelle Monje at Stanford:

Quote: “Yes, I think we're only scratching the surface now with the link between viruses and diseases. The EBV/MS connection has been speculated for a long time and now that new paper really solidifies that link,” said Iwasaki. “The more we study the link between the virus and the disease, like with long Covid, we are hoping to inform better therapy for ME/CFS and other pathogen-related long-term conditions,” she added.

“Extraordinarily common,” said Diana Zicklin Berrent, founder of Survivor Corps, a non-profit organization set up to support people with long Covid and to advocate for research into the condition. “Some people have severe cognitive symptoms even from the most mild or asymptomatic Covid-19 case. We have so many members who had mild cases, and it's been a year and they can't go back to work,” said Berrent.

Last week DZB endorsed the Mayo Clinic’s graded exercise program.