Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

Legitimate rant @Trish

 

Quick update about the letter: We sent it to Walitt and Nath yesterday and asked them to have their response back within two weeks. Once they've responded we will discuss if any revisions are needed in light of their response and then submit the manuscript to Nature Communications. So it will be at least another 2-3 weeks until it is officially submitted, but could be longer. Let me know if you have any questions.

 

We are hoping it will be accepted by Nature Communications as a Matters Arising article and that Walitt and Nath will also publish a formal reply in the journal. If the Nature Communications editor rejects the letter then I think we will publish it on a preprint server so that it can be cited. I'll definitely post the link here as soon as it is publicly available.

 

Thanks to everyone involved in this important project. I’m sure they’ve been reading this thread so the arguments will probably come as no surprise. It will be interesting to see what they come up with. I hope it’s an actual response and not more of the same “you should be grateful and stop criticising us, peasants” tone they’ve taken in their public talks.

 

I’m trying to document the evolution of how NIH is defining’effort preference’ and their findings. From the study, to their FAQ and email responses to now Brian’s comments at the Invest ME conference seemingly downplaying it even more.

I recall a comment on this thread or the other stating I believe in response to the NIH website FAQ or maybe email responses saying the appropriate place to define and explain these things is in the paper itself.

If anyone can easily recall this post and could link to it I would appreciate.

I searched for “needs” and “in the paper” and could not find it. Unfortunately I only have access to a phone not a computer for the next 10 days.

I have a very hard time searching this forum. The search bar always says my search term is too short. The only way I’ve found is to export thread, and then use control F to search for words.

 

In case it helps, in Google, you can enter

site:s4me.info <your search term>

and it will search publicly viewable threads here for that term. I don't know if this works in any other search engine but would be surprised if it didn't.

 

From this interview with the NIH Director:

https://thesicktimes.org/2024/08/13...er-future-long-covid-research-plans-and-more/

BL: Thank you. Also about ME/CFS, people had questions about the intramural study that was published earlier this year. There have been a lot of criticisms from the ME community, particularly around the “effort preference” finding. There have been some calls for retraction for that part of the study from different patient-advocates and researchers. Is this something you’re paying attention to, or do you have a response to that?

MB: I’ve certainly read the study. And I’ve said, we want to hear from the ME/CFS community. We want to hear these concerns. Crafting a direct response is not something I myself can do without engaging the research team, but I can also get back to you on what’s happening. We absolutely want to hear the feedback from the community and respond to it appropriately… They’re taking it very seriously.

(Editor’s note: In a follow-up email, the Director’s Office confirmed that NIH is “reviewing the study to determine if the methods justified the conclusion.”)

 

!!!!!!

 

Any update on this that can be shared publicly?

 

Matters Arising Manuscript Update:

Finalizing everything took a bit longer than anticipated, but I’m pleased to share that the manuscript was officially submitted to the journal today! I’ll keep you all updated once we receive a decision, but since reviews typically take some time, no news will likely be good news for the next few months.

A heartfelt thank you to everyone who contributed, both the co-authors and those who helped shape the work before the "official" manuscript process began. I’m hopeful this will make a meaningful impact, and it wouldn’t have been possible without all of your hard work.

 

Well done and thank you

 

Thank you.

 

Five reasons why the NIH should retract the “effort preference” claims in their intramural ME/CFS paper

https://thesicktimes.org/2024/09/27...ence-claims-in-their-intramural-me-cfs-paper/

 

What is the intended audience of the thesicktimes?

 

Its focus is on long Covid.

 

About The Sick Times
Mission statement
The Sick Times is a journalist-founded website chronicling the Long COVID crisis.

We report on the common, life-changing disease following COVID-19 infection that affects over 400 million people worldwide and can be fatal. Our coverage spans related infection-associated chronic conditions such as myalgic encephalomyelitis, dysautonomia, mast cell activation syndrome, and more. Unlike many outlets, we continue to report on the impact of the ongoing COVID-19 pandemic. No denial, minimizing, or gaslighting here.

Join us as we investigate injustices, challenge powerful institutions, wade through the latest research, assess COVID-19 data, and offer a platform for those most affected by the crisis.

https://thesicktimes.org/about/

 

Thanks. I read that. I was just wandering who the audience largely is. I presume it's mostly LC and ME/CFS patients. Do you know whether there is an audience outside of that or whether larger news outlets sometimes pick up on articles?

 

Not sure, but they allow free republication in any other news outlet, so if you have contacts at other publications they may want to publish themselves send it along.