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They classify definitions as chronic fatigue (no PEM), CFS (PEM optional) and ME (PEM and other symptoms required). Oxford was classified as a chronic fatigue definition, the London criteria as a CFS criteria and the rest as you might expect although the interpretation that NICE requires PEM is...

youtube link to today's presentation

I meant to post the links to the conference, which is now on demand, at least for those who registered. I don't know if you can register after the fact. The slides are here The on-demand video is here - click "OnDemand" on left hand side. Session is last of the day on the 16th. The CFS Covid...

Not sure what happened to that image. The FAQ question and response on the slides were as follows: Q: Is it [LongCovid] the same as ME A: There may be some similar features as those in chronic fatigue. But it should not be regarded, or treated, as the same thing I edited the original post to add

Yea, I get that. Analogy to current US national politics - I am not surprised but still stunned. Are the draft LongCovid guidelines also being released for stakeholder comments and if so, do you know when? Trish's comments might suggest the same time frame.

I'm not sure where to post this but want to highlight for those giving input/feedback on NICE guidelines a discussion in a BMJ Live LongCovid rehabilitation event that relates to the characterization of CFS and the NICE guidelines. The presenter was Professor Lynne Turner-Stokes of Kings College...

Merged thread New US ME/CFS Clinician Coalition website The US ME/CFS Clinician Coalition has released a website for medical providers with information to help them deliver better care for people with ME - https://mecfscliniciancoalition.org The website announcement is below and attached...

The Workwell Methods paper said this about maximal effort - interesting this list does not include the 85% of age-predicted maximum described above.

Good summary from Mark Vink tweet to Kamran Abbas - guessing that should be abbassi?

Some interesting studies were discussed. But its important to note that NIH's COVID strategy covers testing, vaccines, treatment of acute COVID and prevention - and virtually nothing about longhaul. Claudia's point was right on - NIH needs to put as much urgency, focus, commitment, resources...

CDC gave an update on its systematic treatment review during today's (Aug 11) NIH interagency meeting. In a nutshell, their evidence review is ready for public review but they are working to finalize process and timeline. I don't have a date but would expect it would be soon. Prospero protocol...

If I remember correctly, the CDC has published one paper so far - this 2017 paper, which was mostly a methods paper but discussed some findings as well. Findings were also reported in CDC's 2016 MECFS Grand Rounds. I expect other papers are in the works but no idea when these will be published...

Thanks for posting, @Sly Saint. I was surprised to see this now given that the adult Multi-site study's data collection is done or at least near so and the pediatric study is well underway. That said, it may provide an opportunity to comment on instruments that are not adequate, have possible...

I'd think the fact that PEM can be triggered with a challenge, such as CPET or the other exertion methods used in ME research, means its not just a reflection of the fluctuation of the disease but rather a symptom of it.

Thanks for this. So is this saying that a patient can be in a constant state of PEM from previous overexertion combined with current exertion/overexertion?

Just to clarify - CPET is not a requirement for a positive disability decision and patients who are very ill likely have a level of functional impairment that can not be disputed by disability benefit providers. But less severely ill patients who might have otherwise been rejected by...

I'd add that in the US at least, the 2-day CPET with its second day decrement is accepted in disability cases (including those decided by a court) of objective evidence of functional impairment and also the inability to work consistently 8 hours a day, 5 days a week. In one decision I saw, the...

Hi @Hutan and all who worked on this... I just found this. Very nice summary. Thank you for putting it together. Sorry to be so late with a suggestion but I think it might be help if the document contained information on who authored it - e.g. a committee of S4ME members, maybe something about...

Thanks @wigglethemouse for posting. I was just coming in to do that. I apologize but I had never got back to this thread to answer your questions. Someone recently pointed me back to it As far as previous comments made in this thread... Just to be clear - I don't speak for the clinicians so...

Just my opinion of course but in the short term, I think the biggest positive impact of DECODE being funded is that it appears (at least from here) to be driving greater receptivity in the UK media to the ME biomedical narrative. That will help the US, particularly in the medical community...