The current state of ME/CFS research, and its prospects

EndME said:
I think the power structures are particularly relevant. For a large part this means that LC is still viewed as psychosomatic. Admitting that LC is physiological and at the same time can cause ME/CFS at a political level, doesn't only mean that one has neglected and forcefully harmed ME/CFS patients for decades, but also that other "programmes" currently running for example for "long-Q-fever" or "long-MERS-SARS" are nothing short of a harmful form of pseudoscientific money waste. Who would take the fall for that?

In countries like the Netherlands this leads to the most obsurd situations, where proper biomedical ME/CFS research is going to be conducted on the basis of pseudoscientific criteria. Damming the research from the get go. This is also a massive problem for Long-Covid research where a big European project that has been set up that includes the Lifelines cohort and is conducted by Finnish researchers who open state and treat both of Long-Covid and ME/CFS as FND's https://longcovidproject.eu/methology/.
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We've got a battle on our hands, the more patients with differing diseases work together, the better chance we stand. The more outsiders we can get in on it too.
 
Solstice said:
Which is understandable yet evil. Admitting that they treated us poorly will open up a lot of people for liability I'd imagine.
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I agree and that creates even more political and pseudoscientific effort for those wanting to avoid the sceneraio, i.e. those who caused and are causing the situation. There will be larger efforts to dismiss us if liability lawsuits suddenly become a realistic scenario.

But I don't want to sound like a conspiracy theorist so I will mention that things eventually did "work out well" for MS patients.
 
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TORC1 is described as stress sensor. And it influences autophagy. At least one research group has reported abnormally elevated TORC1 activity, while at least one other group has reported abnormally elevated autophagy. I hope I got things right because I'm going from brain fogged memory.

That's another example of independent findings that could be closely connected. Of course we need more work to understand whether these findings can be replicated, and whether they apply to a subgroup.
 
Simon M said:
First, have I missed anything substantial from the last couple of years?
Second, is there anything big in progress (other than DecodeME) that we might reasonably expect to change things?
I'm focusing on research quality, not how plausible things might sound or how they might chime with the current zeitgeist.
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My answer to both first and second is no. There is a fair amount of workaday biochemistry being done but that seems mostly driven by lab/researcher preferences reflecting either inhouse skill sets or Principal Investigator perspective. Of course there's always the possibility that workaday research will pick up that one unique thread that unravels the entire puzzle - but with a puzzle of such apparent complexity as ME/CFS, the odds of that seem somewhat long.

So apart from the NIH Intra Mural and DecodeME there is only the 'zeitgeist' influencing research interest in ME/CFS. I'm more pessimistic than optimistic about the capacity of post pandemic research to aid major progress in ME/CFS, the biggest threat being a definitional problem where we see bald statements that Long Covid (whatever that is) is ME/CFS, and that LC and ME/CFS are both post infection syndromes, equivalence which is neither justified by evidence nor sound reasoning. At present the intimation is that the role of infection in ME/CFS is (in some cases) a hit run effect - this may be no more than an incidental flick of an innocuous biochemical switch which only has significance in 1:250 of the population whose proneness is only remotely related to any specific infection.
 
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They could also include research on preventing M.E, MS or LC? Did taking Plaxlovid within 5 days of infection prevent LC? I feel it's important to include prevention in these studies.

Why most doctors don't prescribe antivirals early on and tell pts that it will eventually resolve itself on its own is beyond me.
 
The people here thinking 10 man studies will get us anywhere have some serious wishful thinking. The truth is, if a study doesn't have at least 100 patients it is completely worthless. It shouldn't work like this, but it does. A small study is supposed to signal to other researchers it needs replication, but at this point I don't think anybody takes them seriously anymore in the context of ME or long COVID. It has been far too long and we have had far too many small studies that ended up nowhere.

The only exception might be the intramural study, but given the delays I doubt they have found a smoking gun.
 
Hubris said:
The people here thinking 10 man studies will get us anywhere have some serious wishful thinking.
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I agree, but I think in the case of ME/CFS with so little funding and dependence on charities for much of the biomedical research, the aim is often to do a small study, find something interesting looking, and apply to big funders like NIH in the US for larger funds to replicate with larger patient numbers.

The trouble is, very few of them get to that stage. PhD students who did the small studies move on to other topics with more funding and, as you say, we are no further forward.
 
Thank you @CRG The link is from 2020.

I think it was Dr. Iwasaki who described the manifestation of LC may have different pathologies in different pts. So identifying subsets is important. It appears so far that acute Covid reactivates latent viruses that fails to shut off post-infection for some. Some pts respond higher to one treatment than to others. They should be able to find out who improves from Plaxlovid and identify who will benefit.

My GP and all the specialists I saw never mentioned antivirals for my acute viral onset. I did take immune modulators rxed by a virologist based on a small CFS study many years ago but it didn't turn out well for me.
 
Milo said:
Good research takes time. It is so painfully slow for us patients to watch. We are just emerging from the pandemic, where a lot of the in-person patient research was halted for several months. Labs closed. It delayed research further.
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I get that medicine has historically gotten a universal pass on being slow but 3+ years is a lot of time for professionals to get their shit together, especially with decades of precedent of the exact same. Especially as technology today allows to go so much faster than in the past, that excuse is no longer valid, every other profession has managed to become more proficient with time.

So far it's been 3 years and most of the research has been awful. It's really not about time, it's about motivation and accountability. Both are missing.

I still regularly see excuses for obvious failures that basically boil down to "you can't change everyone's minds" and although that is true in general, being able to learn and adapt is what defines professionals and all other experts manage to do this. As an excuse it's almost toddler level, or the adage about teaching an old dog new tricks. This isn't an old dog, this is an expert profession with trillions in resources who are perfectly capable of performing very effectively.

It's just so bizarre because when you generalize the excuse, it's pretty much "you can't expect professionals to put an effort to understand and adapt to reality". Which, of course you can, it's pretty much the whole deal with experts.
 
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Mij said:
They could also include research on preventing M.E, MS or LC? Did taking Plaxlovid within 5 days of infection prevent LC? I feel it's important to include prevention in these studies.

Why most doctors don't prescribe antivirals early on and tell pts that it will eventually resolve itself on its own is beyond me.
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These trials do exist. There was the metformin trial that made big waves and now there's a massive randomized Paxlovid trial (n=2000) looking at the prevention of Long-Covid
https://classic.clinicaltrials.gov/ct2/show/NCT05852873?term=Paxlovid&cond=Long-COVID&draw=2&rank=3.
 
You`re right Simon, most of the research is pet projects for funding, and few seem to actually try to find out anything plausible.

My main hope for a long long time has been the research at Haukeland. People are sleeping on their work. Their findings on circulatory dysfunction are consistent with our symptoms.

I`m intrigued to see the results of the Daratumumab-research.
 
Braganca said:
https://twitter.com/user/status/1828840447982350584
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"JAK stay inhibitors, an existing drug, is our current best guess."

He has an impressive resume as a venture capitalist, but does this Vinod Khosla have some connection to ME/CFS?

Edit: From Health Rising:
Likewise, several studies, including one from Jessica Maya at Cornell, suggest that T-cell exhaustion is present. Maya’s study was funded by Vinod Khosla (again!), the Alfred P. Sloan Foundation, and the NIH, and a large NIH-funded T-cell exhaustion study is underway
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Another from HR, about itaconate shunt:
After the Open Medicine Foundation provided vital support to the development of the hypothesis, Vinod and Neeru Khosla’s Amar Foundation in San Jose, CA jumped in to provide funding to test it in Chris Armstrong’s lab at the Open Medicine Foundation’s Melbourne Collaboration at the University of Melbourne in Australia.

Vinod Khosla, a co-founder of Sun Microsystems, and his wife, Neeru, created the Amar Foundation in 1987. In 2011, they were one of the early adopters to sign onto the Giving Pledge created by Warren Buffet, and Melinda and Bill Gates, which commits wealthy individuals to give away the majority of their wealth during their lifetimes or in their wills.
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The Tweet by Elle Davin is very good actually. More like this please!

If I was Vinod, I would use my wealth to fund much more MECFS research. But by replying to him on X it shows him that many more people are interested in MECFS research and maybe pressurizes him to fund more.
 
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