Long COVID patients need scientific ambition, not defeatism

RaviHVJ

RaviHVJ

Senior Member (Voting Rights)
Alongside a team of three fellow longhaulers, I published an article calling for scientific ambition in our efforts to understand Long Covid and ME/CFS.

https://www.gavi.org/vaccineswork/long-covid-patients-need-scientific-ambition-not-defeatism

We made sure to have an extended section on the history of ME/CFS - the decades of underfunding and psychologisation. In my view, the failure to explore the longstanding neglect of ME has been the biggest gap in journalistic reporting on Long Covid.

(They managed to post the article twice on that page frustratingly, which hopefully they'll address soon)
 
Yes, "grim opportunity", this is true, pathology is.

Looks very good but for proof reading purposes, FYI re: layout, there are three spaces missing before the three links in the first two paragraphs of the penultimate section "Parallels with ME/CFS". First impressions etc.

EDIT and another one under "shifting thinking" 5th para.

+ the text is repeated i.e. two copies one after the other.
 
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Trish said:
Very good, thank you. What readership can be expected on the website where it's published?
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boolybooly said:
Looks very good but for proof reading purposes, FYI re: layout, there are three spaces missing before the three links in the first two paragraphs of the penultimate section "Parallels with ME/CFS". First impressions etc.
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So we initially wrote the article as a rebuttal to a piece in Time essentially calling for an end to biomedical research into Long Covid. We soon found out that magazines very rarely publish rebuttals, so we had to shift the emphasis a bit. We sent it to Gavi because I'd noticed that their articles got a surprising amount of attention - they have a very large global reach, with many of their articles focusing on the Global South. The trade-off is that they seem to have a v skeletal operation, so there's not a huge amount of attention to detail. Slightly frustrating, we've been sending them emails asking them to correct the errors, but to no avail so far.
 
Thanks for this effort, a great piece! Let's hope it gets the attention it deserves.

I was slightly confused when I if first read "We must seize the grim opportunity Long COVID has presented us to finally untangle the biology behind the devastating chronic illnesses that infections can trigger." followed by "This argument draws all the wrong lessons from the decades-long neglect of ME/CFS. Rather than give up, we must seize the grim opportunity Long COVID has presented us to finally untangle the biology behind the devastating chronic illnesses that infections can trigger." It's very clear what you mean when one actually reads the article and that both sentences are referring to "And yet some have proposed that biological investigations of Long COVID should be abandoned. Fifty years of research into a seemingly identical post-viral condition – myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – have yielded little, so why would Long COVID be any different?", but perhaps it might not be clear to everybody (or maybe it was just my general "brain fog" that made me misunderstand things when reading them for the first time)?

Below I have some remarks that will probably be irrelevant for the average reader/general population:

I fully understand you intention of why you say this, but I'm personally not a big fan of "Long COVID is no longer a medical mystery." as it's not necessarily an accurate statement. I suppose this depends on the context in which one says this (I suppose you're meaning it's not a mystery that it's a biological phenomenon vs a psychological phenomenon, which I certainly agree with, but at the same time the biological phenomena that for example underly the ME/CFS subset are very much still unknown).

"researchers have zeroed in on potential disease mechanisms" points to SARS-CoV-2 reservoir in post-acute sequelae of COVID-19 (PASC), which is of course just one potential disease mechanism, i.e. a hypothesis, perhaps a reference such as Why we need a deeper understanding of the pathophysiology of long COVID might be better suited for this sentence (or a different reference detailing the different hypotheses and describing the available evidence for these)?
 
EndME said:
I fully understand you intention of why you say this, but I'm personally not a big fan of "Long COVID is no longer a medical mystery." as it's not necessarily an accurate statement. I suppose this depends on the context in which one says this (I suppose you're meaning it's not a mystery that it's a biological phenomenon vs a psychological phenomenon, which I certainly agree with, but at the same time the biological phenomena that for example underly the ME/CFS subset are very much still unknown).

"researchers have zeroed in on potential disease mechanisms" points to SARS-CoV-2 reservoir in post-acute sequelae of COVID-19 (PASC), which is of course just one potential disease mechanism, i.e. a hypothesis, perhaps a reference such as Why we need a deeper understanding of the pathophysiology of long COVID might be better suited for this sentence (or a different reference detailing the different hypotheses and describing the available evidence for these)?
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I largely agree about Long Covid being a medical mystery - clearly we have an incredibly incomplete understanding of what's driving the illness. It's difficult to capture all the nuance in a 1000 word op-ed - we had to cut the article down from about 1800 words. That paragraph on the biomedical literature was also meant to show that we do know things about Long Covid - that abnormalities have been found that point to potential mechanisms, whereas the Time article argued that biomedical research into Long Covid has been a complete wash. It's the kind of thing that in an academic paper would get several paragraphs, but in a journalistic piece needs to be cut down into a frustratingly un-nuanced paragraph.

In terms of the viral persistence hyper-link, worth noting that links in journalistic articles are v different to citations and that in the paragraph above we linked to two other literature reviews that covered other hypotheses. But we did think it was important to highlight viral persistence. I'm personally far from a paid up member of the viral persistence brigade, but I do think it's the most interesting avenue in LC research at the moment. And it does seem to be more than a hypothesis at this point - there's plenty of evidence that covid does persist, including in LC patients. I'd find it difficult to believe that viral persistence is not part of LC's pathology, but the questions are for me how large and what exactly is its role.
 
RaviHVJ said:
So we initially wrote the article as a rebuttal to a piece in Time essentially calling for an end to biomedical research into Long Covid. We soon found out that magazines very rarely publish rebuttals, so we had to shift the emphasis a bit. We sent it to Gavi because I'd noticed that their articles got a surprising amount of attention - they have a very large global reach, with many of their articles focusing on the Global South. The trade-off is that they seem to have a v skeletal operation, so there's not a huge amount of attention to detail. Slightly frustrating, we've been sending them emails asking them to correct the errors, but to no avail so far.
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It looks better today, now I can X it. I agree with the sentiment expressed 100%. I hope it gets republished.

The Time article looks reminiscent of typical BPS antiscience to me and sounds outrageously luddite. The whole history of science tells us knowing is better than not knowing, because what you don't know can kill you, which is why we do research. Surprised to see this from two alleged epidemiologists.

TIME said:
Research still has a vital role in the new ME/CFS/Long COVID paradigm. But it should be a different kind of research. The kind that no longer focuses on biomarkers and mechanisms. These are sure to provide “promising” but false leads and divert resources. Focus should be on health services research and on measures that directly impact the welfare of Long COVID sufferers: prevention, improved prognosis, access to empathetic care and quality of life issues. This includes investigation into symptom management, the effectiveness of comprehensive care delivery models, and social science research
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Our friendly neighbourhood medical ethics watcher Dr David Tuller wrote about this piece last year. https://virology.ws/2023/11/21/tria...s-for-halt-to-biomedical-long-covid-research/ He asked why it appears to be a reversal of a previously held opinion.

The historic elephant in the room re ME/CFS has been perverse incentives for amoral actors. USA's Mental Health Parity Act and successor are a matter of record, they didn't happen for no reason. https://en.wikipedia.org/wiki/Mental_Health_Parity_Act Which is why some consider we need to be alert to the possibility of attempts to quash the LC diagnosis in the press and thereby the political funding agenda.

I was once employed as the ethical vetting analyst for OXFAM corporate fundraising, amazing what some companies get up to. Time is owned by Salesforce.com founder Marc Benioff, I doubt the impulse came from him as he is well known for research philanthropy but he might be open to dialogue with someone like yourself about the impact of the article. My guess is the authors themselves know best why they made such a downbeat destructive assessment of biomedical research.

That said I have expressed critical dissatisfaction with criteria and cohort selection myself, in order to stimulate thought and more careful diagnosis and improve cohort homogeneity. This just seems to fly over peoples' heads. One answer to that is more DecodeME type big data research. This is absolutely not the time to give up and throw in the towel, it is the time to double down on big data and raise the game with AI, just dont give it any nukes!


On a side point of language, please permit me as a one time TEFL teacher to offer that UK English idiom typically allows "tease apart" or "piece together", while "piece apart" which everyone will understand, is nevertheless technically a malaphor :bookworm: FYI, at least in the UK... for now... until it isn't!

Also just wanted to quip, ME CFS and longcovid may seem to be distinct, until someone with ME CFS gets longcovid...! (like me)

 
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