Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

I actually didn't want to, for my very own sake, get into the Walitt effort bullshit, but the fact that this people seriously build up a hypotheses around patients not wanting to crash, hence might be a little more careful, is truly insane. It's beyond me how this can be published like this.

 

Yes it's mad that PEM as far as I can see is not mentioned once in the entire document. PEM contextualizes all of these decisions and I think if they had just asked the participants why they made the choices they did that would have come up, rather than try to infer it from data alone. They conclude in this section 'This pattern suggests the PI-ME/CFS participants were pacing to limit exertion and associated feelings of discomfort.' Just ask them, it's probably a conscious decision.

 

Have mixed feelings about this paper. Credit where it is due - clearly a lot of science went into making it, that no one else was prepared/able to do. But it appears we have not got much (at least immediately) in terms of findings out of it. Nath has mentioned there are other papers to come after this one, so we can but hope they are saving the revelatory findings for those!

 

2016: 'NIH chose a lead associate investigator, Dr. Brian Walitt, with a psychosomatic viewpoint of the disease'

See the chaotic ever changing Timeline of Inclusion Criteria changes for the NIH study just for starters.

2016/7
https://www.meadvocacy.org/nih_sidesteps_critical_problems_with_the_me_cfs_study

.

 

exactly lol
thank fuck for doctors like schieben honestly. Brain fog is by FAR my most disabling issue, this paper is not fit for toilet paper tbh

 

Did anyone really think this study would do anything but reinforce the BPS narrative of ME one way or another. The massed red flags when Walitt was invited to join the study could not have been clearer.

 

Certainly a confusing and wandering paper. My take away from reading for the first time is that there is some central issue but the authors couldn't figure out what they were and came up with some effort preference bs as a loose conclusion from the fmri and grip testing.

I don't really know if the catechol pathway dysregulation is of any real relevance, but it does not seem like they did very extensive and advanced central testing whether that be by cerebrospinal fluid testing or brain scans.

I would have liked to have seen some testing of brain lactate and a TSPO PET scan during PEM as these are things that need confirmation and may have changed their conclusions but alas...

 

Ironically the coverage by the SMC is streets ahead of some of the excerpts I've seen pulled up here. Glad we have Morten, Ponting and Seton responding to this.

 

Action replay, pretty much, 35 years of NIH messing with ME.


https://twitter.com/user/status/1760145560386863159


Hillary Johnson
'When Straus published his ridiculous "study" of 21 pwME in 1989, NIH sent it to 500 press outlets. Straus claimed ME was preceded by mental illness. I asked NIH, why send a study of 21 patients to 500 journos? Was told: Well--we get more queries about ME than any other disease.'

.

 

Welll, he can't really let me down because I didn't expect anything good to come from his involvement in the first place. He looked out of place from the very beginning.

 

Does anyone have any thoughts on why none of the participants had pots? Is this a selection problem or are pots and ME just unrelated?? I really don't know what to make of this

 

This stuff is way beyond me, but I do know they've excluded a lot of people because they had other conditions. I don't know if they were daft enough to exclude POTS on that basis and then report that no POTS was found.

 

Biggest effing joke. I really don't think you could come up with such results unless you planned to do so. I am serious about this. It's just not possibe unless you select for it. With this pubication I have shifted from the 'NIH's behavior might be a bit fishy' to 'definitely in parts fraudulent'. I don't think mere incompetence can explain this paper.

 

Take a lap, buddy.

17 US patients, who are human beings, went through an awful lot and sacrificed their bodies / baselines in this study. Some of those patients are on this forum. Do better than blasting 'US advocacy groups.' If that's your glaring takeaway from today, I strongly consider you to reassess your priorities.

 

Studying ME without controlling for PEM isn't studying ME. Upside is that they got to use their seahorse technology for their research, so there's a silver lining.

 

Just wanted to say that this is so much more interesting than the publication!

 

The ME Association has posted an article with a more positive slant. It doesn't seem to be an analysis of the findings rather a more descriptive piece.

https://www.statnews.com/2024/02/21...mIFjMVKPLixqWN67za7n0t8bwF8qJLmsdfC-6I71pln0M

"NIH study of ME/CFS points to immune dysfunction and brain abnormalities at core of long-dismissed disease"

"For decades, it was considered a women’s condition, and patients were told it was in their heads. Now research leaves no doubt: ME/CFS is a disease with clear biological hallmarks."

"“This is really a tour de force,” said Mady Hornig, a physician-scientist who has studied ME/CFS and was not involved in the research. “There are clues that I think are really worthy of pursuit.”"


"Most importantly, the work still doesn’t answer what is arguably the single most important question: What is causing ME/CFS, and how can it be treated? Researchers in the field think certain people may have a genetic predisposition that makes it more difficult for their body to clear an infection, so that could play a part. But if the disease can crop up after many different kinds of bugs, then what is the antigen — the molecule, protein, or thing — that’s driving an unrelenting immune response for months to years afterward? And why do some people get better, like the few study participants who had a spontaneous recovery, while many others don’t?"

 

I don't know what illness this is describing, but it is certainly not mine. I have been ill for decades, never gave up optimism as to what I can do and yet every time I attempt to do anything that isn't rotting in bed I get PERMANENTLY worse from it. If I'm lucky, I get a PEM that lasts for 2 months instead.

And this is especially true for cognitive effort, which is the most relevant part anyway. Any time I get optimistic and start thinking that I can do anything productive FROM MY BED I get a huge relapse both physically and cognitively from the minimal mental effort I did.

I have more than once embarked in things that were clearly completely out of my league (yet for a normal person, they require maybe 5% of their energy at most), from a mix of desperation and blind optimism, trying to ignore my limitations because I really wanted to do something in life that could be considered productive, have some sort of achievement - I knew that they were crazy to attempt but I figured I had nothing to lose.

I indirectly screwed over other people, making them believe I could do things. Not because I wanted to deceive, but because I had the desperate and delusional optimism of someone with a dream that is about to die next day and truly has nothing to lose. Someone with 500 broken bones that says "fuck It, I'm gonna start running I don't care what happens". It always ends in disaster but you believe that maybe there is a 0.1% chance that the doctors are right and you can really do things if you try hard enough. That if you massacre yourself to unbelievable extents maybe you can be 5% as productive as a normal person, at least for a while...

The answer of course is a categorical no. Nothing is possible. But the blind optimism mixed with literally every doctor in the world telling you otherwise, and the alternative literally being to spend your entire life in bed doing nothing, let's you keep trying.

Exactly. I don't have much to add other than the people running the study are completely clueless. They are unable to look at the details and their "doesn't seem to be anything wrong but the patients prefer to avoid doing things" reflects that. Completely unable to understand PEM.

Then again, I saw someone in this thread mentioning this study was negative for POTS so maybe their conclusions are right, they just weren't able to actually select the proper patients. In either case, their incompetence killed this study and our hopes it would be anything meaningful.

 

"Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the commonly used term to describe a disorder of persistent and disabling fatigue, exercise intolerance, malaise, cognitive complaints, and physical symptoms with significant socioeconomic consequences."

Even this is word salad. No clear description of PEM, and are we to understand that "persistent and disabling fatigue, exercise intolerance, malaise" are different to "physical symptoms with significant socioeconomic consequences", as is implied?