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

Good to hear they've no intention of doing any ill-conceived clinical trials. Yet another discrepancy between bombastic public statements and reality.

 

ME patients and everybody who knows them and treats them can immediately see the error in this framing. Why is it so hard for doctors to explain that the signal can't be overridden, and "want" doesn't come into it?

I didn't "want" to have a thumping headache all day yesterday. I'm glad NIH didn't point out that my body is capable of not having a headache but it preferred to have one, because the only response that deserves is a high-velocity wet dishcloth.

Yet several years and eight million dollars later, you come up with "preference". We'll draw our own inferences about how much you understand.

 

"It's not like you're not capable of doing it, but your body tells you don't do it"

This is an awkward sentence for a start. I assume it would better be phrased with two 'thats'.

It's not that you're not capable of doing it, but that your body tells you don't do it.

This looks like it has been picked up from my comment to the Science journalist but it may just be the obvious analogy. But it is wrong and I am pretty sure not what I said.

It is that you, are not capable of doing it, with flu. Whether you refers to your whole organism or some putative 'mind' inside it isn't capable.

The inference that because muscles are working properly during short intensive exercise tests on a small maybe biased ME sample tells us nothing about the PEM that prevents people from leading a normal life. The people who could not even do the exercise tests are by definition selected out of the testing sample. For those that could, the flu situation arrives afterwards.

Maybe Dr Nath has not had Long Covid. If he had I find it hard to see how he can understand so little about the problem. Or at least about how to express his ideas.

 

Is messing around with statistics, i.e. to get a significant result, not effort preference --- reward driven!
Trying to get something (anything) significant from 8 years & $8 million--effort preference!

 

hmm interesting

 

@Evergreen A few of us reached out to leaders at UCSF, and this intel was incorrect.

 

Like Peluso?

 

@Jaybee00 Outreach was to Deeks, who CC'd Peluso on his response.

 

That explanation is complete BS. When you have the flu, the real flu, not a mild cold, there are things you certainly can do, like get out of bed to grab a glass of water, or answer the door, then probably forget that you even did that. But you certainly can't perform at work, cannot go out and socialize, cannot go for a run and do many things that are easy to do in every day life. You cannot perform regular activities of daily living, and it's not just about will, there is also there a very limited energy reserve that forces people to make choices that are simply not down to preference.

And that doesn't even take into consideration that a nasty flu with significant fever will definitely knock some people out to the point where they cannot even stand up, are so barely conscious that if you have a conversation with them afterward they will not even remember having. And how can "their body kind of shut down" be reconciled with "not like you're not capable of doing it"?

They struggled with the term but just happened to choose, to prefer, one that is exquisitely pejorative and highly suggestive of laziness? Horseshit.

 

Jonathan's (positive) post (above), read together with his positive comments here -

• https://www.s4me.info/threads/is-there-a-constant-anti-viral-response.37451/#post-518340 AND
• https://www.s4me.info/threads/uniqu...quences-2024-dunstan-et-al.37442/#post-518278

which both of which relate to sickness behaviour?

Suggest trying to get NIH to follow up the MRI study ("effort preference") with studies like those above (bullet points) i.e. looking for an underlying mechanism. The NIH ME/CFS Research Roadmap public consultation (closes 8th March) provides an opportunity to ask NIH to pursue this "sickness behaviour" hypothesis.

 

Super interesting thread from Todd Davenport about the anaerobic threshold differences between patients and volunteers, and how obviously different the demands from moderate activity are between the patients and controls. Something they seemed to have paid no attention to.

The study considered moderate activity based on actigraphy data, rather than metabolic demand:

This is the meat:

 

This is pretty much a demolition job.
Todd Davenport should write a formal response to Nature

 

Boy, I'd think twice about using the word "behaviour" in any hypothesis that involves pwME with this group...

 

this was my thought exactly!

I cant tell you the relief i feel when i read your posts illustrating that you get it. Thank you for listening, and hearing.

 

So, re Todd’s thread, aside from the fact that NIH didn’t use it or report on this properly..

It’s interesting to me that quite a lot of metabolic dysfunction was found from a single day cpet, since proponents of the 2 day cpet tend to insist 2 days necessary to prove ME dysfunction. I know it gives more data to have two days, but, one day seems to provide very useful data and better in my view to subject people to less risk.

 

As I see it the issue is not that people with ME do or do not have issues with day one exertion, one would expect this is many conditions, rather what seems so far to be unique about ME is that previous exertion dramatically impacts on attempting day two exertion, so it would make sense to know what is going on on day two when people with ME have very distinct symptoms.

Obviously in this study people are exerting by just participating making it unclear what is day one and what is day two in real life, also any examination of ME metabolism may come up with interesting results, but on our current knowledge day two is the place we are most likely to find any pattern.

 

Solve's response, https://solvecfs.org/solve-responds...al-me-cfs-clinical-study-published-in-nature/

 

• post-infection syndromes (used twice in the paper*)
• post-viral syndromes (used three times)
• adaptive sickness behaviours (used once)
• sickness behaviour or sickness behaviours (about 28 times)

Not sure there's a better/neutral term? Really if researchers stick e.g. to elucidating the mechanism (cytokines ---) underlying the symptoms then I'm not too concerned what term they use.

*https://www.frontiersin.org/articles/10.3389/fncel.2024.1345441/full