USA: National Institutes of Health (NIH) intramural ME/CFS study

Good point. In my case, I had EBV early November 13 years ago. confirmed by lab. I felt horrible, unable to work, but mainly exhausted with liver pain. In 5 months I managed to fail 2 return to work attempts, was found to have a large ovarian cyst and got a necrotic gallbladder. It was a month later that i experienced my first orthostatic intolerance symptoms along with depth perception problems, heat light and sound sensitivity.

You have to give someone a chance to recover from their initial infection before you can diagnose them with ME or even long-COVID, whatever that means to them (and i’d wager even doctors do not know what the long covid case definition is) ; chances are, they will.

 

Moved from the News from NIH thread

(my bolding)

That sentence that I marked in bold immediately stood out.

But then I thought, maybe it could be interpreted in multiple ways?

The more generous interpretation is that researchers did believe that ME/CFS patients had biological problems. They just didn't know what those problems were, or how to measure them in a way that would be reproducible.

However, I confess that the sentence sure feels like NIH researchers saying they weren't sure at first whether there "really are biological problems" in ME/CFS patients.

Thoughts?

 

I think they are saying that they needed to suspend judgment until they could see real results that were robust ie consistent and reproducible. I read it as suggesting that they were making no claims until the science backed it up.

 

Maybe he could ask someone else to help then, instead of only Wallitt? Personally, I highly doubt that anything analysed or written by someone with such strong prejudices (as the ones Wallitt has expressed) would be reliable in this context.

 

@mango, that's exactly my fear : that Walitt succeeds in putting "psychosocial" in the article to be published... I hope I'm wrong.

 

As much as this is... interesting to hear, it's admission of having failed to do their job properly for decades. Which we know, even said so. But that something this massive can be said as an afterthought, with zero expectation that it has any importance, says everything about why everything failed. There is simply no accountability, no expectation of delivering anything. People are simply there, along for the ride, have no agency when they fail, even though it's through their agency that they chose to fail. He probably means convincing others, I think that Nath is one of the few who get it, but this is a major disaster requiring accountability relative to the harm done.

If this were a criminal investigation, with prosecutors admitting that they literally did not bother looking at exonerating evidence, and now that they did, well looky here... innocent. Oops. There could be consequences, not necessarily would. It would all depend on who did what, who was hurt, who is responsible for the failed decision-making, who is in charge right now and how embarrassed they would be for the failure of like-minded peers when they made the same decisions themselves.

Chronic illness has been de-medicalized. Now it needs to be de-politicized, right along with literally all healthcare. In almost any other job people would get fired, entire departments would be reformed. Millions of lives were ruined, and... nothing. No one cares, it's business as usual.

 

Thread—some good news here about potential drug trials

https://twitter.com/user/status/1522305335557443584


“Avi thinks they have something interesting (I don't know what) that will lead to drug trials either at NIH or elsewhere. “

 

That failure compounding into the Long COVID disaster that adds to the ME/CFS burden: both in patient numbers and continued lack of diagnostics/therapies.

 

> Nath says he will not publish a preprint or release results in advance of publication

i wonder why we can't get a small formal self-contained report that not impede the big paper. even a well-annotated subject flow diagram. least publishable unit is sardonic but perhaps it could be useful. from my uninformed perspective.

i don't want results to peter out or get cancelled or be put on hold or any number of bureaucratic tricks. or be corrupted / elided, spin control, or approval by koroshetz or whoever to be the focus of the paper. etc.

and why not have some truth-oriented young scientists without ontology-challenged brains assist.

 

It will get significantly more attention from scientific community if published in a good journal. I’d rather he follows the peer review publishing steps to do this properly even if slower. Scientists are as skeptical as we all are about badly done or hyped studies in crappy journals. I hope this is a game changer for us, and headline news on Science or Nature mags.

 

Sounds like they found them, but what are they? I would love to know. I'm not sure it's healthy for the research field to have to wait a long time to hear what they discovered.

 

https://en.m.wikipedia.org/wiki/List_of_academic_publishers_by_preprint_policy

Actually most journals don’t care if you post a preprint.

 

Anyone know how long we may have to wait?

I'm wondering if he's found that other diseases are misdiagnosed as ME/CFS? If he has made significant progress, and given that he's stated that "many cases of Long COVID strongly resemble ME/CFS"*, surely Nath deserves more funding from NIH & indeed the EU should repeat this type of intensive study.

Roll on the GWAS (Chris Ponting) study since this may give clues to biological problems -

*https://www.meaction.net/2022/05/04/nih-research-update/

 

As I think others have pointed out, apparently if Nath publishes a pre-print then the high profile medical journals will not publish the paper - i.e. if you want to publish in a major medical journal then no pre-print.

 

No, not true—see my post above.

 

Never underestimate the unseen hurdles posed by publicly accountable bureaucracy: https://www.ncbi.nlm.nih.gov/pmc/about/nihpreprints/

 

Perhaps not very long..

 

Great news.

But for long term pwME, or maybe I'm just speaking for myself, after being booted around by many, along with suffering from this horrible disease, this news is not as exciting as it would have been 30 years ago.

The price we've payed is exceedingly high. Like @rvallee says, no one will be held accountable for all the injustices.

Harmful PR about ME has poisoned our engagement in many areas of society.

And now, the waiting game for research papers, the trickle down effect to get the news out there, waiting for successful drug trials, waiting for local doctors' offices to get on board...

At least, maybe eventually pwME will be believed.

 

I wish I hadn't read that article. My expectations are now sky high and I'm desperately trying to quash my hope because I cannot face the emotional devastation of this being a nothing burger.