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The CDC symptom questionnaire (attached) has a set of questions about fatigue and then the frequency, severity, and duration of 18 different symptoms plus depression. A CFS case requires the presence of fatigue plus any 4 of the 8 Fukuda symptoms. The other 10 questions and the depression...

Only 17% had Hoover's sign or one of the other signs they claim can be used for a positive diagnosis?

Totally agree with the comments above about the study objectives and findings. Ughh. Granted, data collection started in 2016 but this PI certainly knew then that PEM was the hallmark symptom. What worries me more is it's still being used in new studies including in Long COVID studies where...

Maybe it would be better to call pacing a management strategy instead of a treatment? It's not about increasing function and capacity in the way that exercise is claimed to. Its about stabilization and minimizing crashes and potential worsening of function over time. The expectations for what...

It's good that the report acknowledges that PEM is hallmark for the disease. And as @ME/CFS Skeptic points out above, they even originally used the Nacul 0.1% prevalence estimate because it is the only one that clearly used a case definition where PEM is required. But if they really get that...

Another potential issue in addition to the above - The study inclusion criterion for reduced function included either limits in physical function or limits in social function. Limitations in physical functioning operationalized as a score of ≤ 65 on the physical functioning subscale of the...

Thank you for posting. The website above points to the Clinician Coalition Google Docs area. Both documents are the same.

merged thread In Nature Long COVID exercise trials proposed by NIH raise alarm Advocates ask the US biomedical agency to rethink the design of its RECOVER initiative, citing possible harm and funding waste. Patients and patient advocates are calling on the US National Institutes of Health...

This! The relation of these findings to ME is impossible to discern

Patient-Led Research Collaborative (PLRC) is soliciting comments in support of adding an ICD code for the symptom of PEM to the US ICD-10-CM. To sign on in support of this proposal, you can fill out this form and your name will be added to PLRC's public comment. Note PLRC's public comment is...

Yes, I hear you.

I have asked but at this time, do not know when or how the draft protocol will be released for review. I've told Cochrane there are lots of questions about this and also a general lack of communication about this review (@Trish reported above the last comms was June 2021.) In response, my...

This!

In addition to PLRC's Q&A, I'd add the following comments to questions raised above and elsewhere Will the addition of a code for the symptom of PEM result in it being excluded from the diagnosis of ME/CFS. There are numerous symptoms in the Symptoms and Signs chapter of the ICD-10-CM, such as...

Patient Led Research has posted a Q&A on the proposal to add an ICD code for the symptom of PEM to the ICD-10-CM. This states that PLRC will be presenting around 11:10 on March 8, 2023 and comments will be open until May 5, 2023 Q&A -...

Yes, agree she is more than a bit BPS

Lisa will be presenting and available for questions. If you post or DM me the specific questions you'd like the ME orgs to answer, I will forward to them.

Thanks. I ask because Debra Buchwald, one of the authors of this letter, is presenting "Lessons Learned from Chronic Fatigue Syndrome (CFS)" at an NIH sponsored scientific workshop on post-dialysis fatigue. She'll discuss challenges to moving the field forward medically, strategies used to...

Does anyone know if this article was ever published anywhere? I haven't been able to find it.

Thanks for sharing, @RedFox. It's very helpful to see what groups like this are actually saying to their patients.