Do you think that any Long Covid researchers have made any significant findings about ME/CFS?

[Jaybee00]

Do you think that any Long Covid researchers have made any significant findings about ME/CFS?

By Long Covid researchers I’m referring to researchers who joined the field since the Covid pandemic.

Significant findings would include identifying the underlying causes of ME/CFS and identifying druggable pharmaceutical targets.

 

[Jaybee00]

I voted no, but maybe the Dutch researchers Lutter & Wust have made useful contributions.

 

[Yann04]

I wonder if the complement system findings will be meaningful?

 

[V.R.T.]

I voted yes because of the Wust thing. I think its early days and they still could well find something big through LC research if it's done right.

Complement system stuff is interesting and totally beyond me. I think Scheibenbogen tried to replicate and failed though?

I also think the IgG mouse model could be significant but others on here are much more skeptical.

That DNA methylation study looked like a mess but it would be interesting to see it done with a bigger better defined cohort.

 

[rvallee]

Significant? Very. Has the significance made any difference? No.

LC research has pretty much validated decades of research on ME/CFS. This is highly significant. Looking back at everything we knew before, there was a very blurry picture and LC has made it in full focus, clear and crisp. The research so far hasn't added anything new, but what was known before was dismissed so validating and patching up the holes, especially the mild infections being the most common risk factor given their higher prevalence, is highly significant.

But it hasn't made a dent in the traditional myths and practices. Psychosomatic ideology continues unabated, doing the same old crap it always did, leading nowhere, producing nothing of value, but holding up all the space.

It hasn't lead to any predictive knowledge, which is really what we need. Knowledge in itself is unfortunately pretty much irrelevant. The process of science looks mostly one of ignoring all the clues until someone puts them up together in a way that allows to make predictions and can be used as technology, then all that past knowledge becomes accepted because anyone can simply use it to produce better outcomes.

The problem isn't inherently with the research itself, it's the old giant blocker on the way that is holding everything up: ye olde psychosomatic beliefs. Nothing at all has changed for the patients. A tiny few have the benefit of clinicians who know a bit better, but the only real difference is that a bit fewer of them are getting the wrong advice that will make them worse, but in absolute numbers it's probably far more because of the size increase and absurd intransigence of the medical profession.

The problem is the same as always: medical culture and its myths & traditions. Those have not changed, are still the reason why everything is blocked everywhere. For sure it can be said that without LC, we never had any chance. Now we have some chance, it's probably a question of time, but seeing how things are unfolding, I have no hope that it will make a difference for me. Maybe those under 30 will have some chance at life. It depends how technological process continues. It's the only thing that really matters in the end, the only thing that makes cultural blockages irrelevant. Without technology, we are stuck with human judgment. And human judgment sucks absolute donkey balls.

 

[EndME]

I think the team at the Amsterdam UMC surrounding Wüst and van Vugt certainly might have, because right now the findings are still rather speculative, haven't been replicated and could easily have been due to things related to sampling and could be noise rather than anything else. These researchers wouldn't have entered the field had it not been for Covid. I think setting the bar for significant findings somewhere around identifying the underlying cause and identifying pharmaceutical targets is a bit high though as one can then argue than no researchers have ever had significant findings on ME/CFS. So I don't really know how to answer this because it would depend on what is considered "significant findings". Some might probably argue that the last significant findings in ME/CFS were the data showing the ineffectiveness of GET and RTX in treating ME/CFS.

 

[Kiristar]

I voted yes solely because of Rob Wust. Not familiar with the other studies mentioned. I do think there are signs of getting more traction and interest in ME/CFS and it's helpful now that the LC researchers are starting to see the same obstacles hit them as NE/CFS has been hindered by for decades so we a stronger force when fighting them together . Science moves at a glacial pace it seems.

 

[Jaybee00]

I think setting the bar for significant findings somewhere around identifying the underlying cause and identifying pharmaceutical targets is a bit high though

That’s a fair criticism. I should have defined significant to be less rigorous. But I also definitely wanted to kick out “research” such as all this Al-Aly nonsense where he is producing dozens of useless papers and is promoting himself as a “Long Covid Ally”.

 

[Sid]

In terms of clinical significance, nil of note. Two potentially useful findings that need to be followed up are the IgG mouse transfer and the muscle stuff from Wust.