Search results

@wigglethemouse - Thanks for your kind words. US advocacy efforts will continue to emphasize this lack of funding compared to disease burden as a part of the overall messaging. But it only goes so far. And at this point, IMO, COVID and the potential for the development of ME is a much more...

I should have added that in a number of places, Ed Jong points out the similarity in symptoms and treatment by the medical community to what ME patients have been experiencing and that ME has been ignored for years, leaving us ill-prepared to deal with the long term consequences of another viral...

Merged thread Very good podcast on post-COVID long-haulers on the US podcast, On Point. - "Lingering Symptoms, Long-Term Damage: For Some, It's A COVID-19 Recovery Reality" https://www.wbur.org/onpoint/2020/06/25/whats-it-like-to-recover-from-covid-19 Features a patient from New York, a...

@Denise yes, I've heard the same thing.

Note that these articles are currently behind a paywall but I understand the intent was for open access. May be a timing issue. I'm checking on that.

Wow. Congratulations to all who have made this happen. Haven't read much of the press coverage but saw Dr. Muirhead's interview. So excellent. Anything from the SMC yet? Looking forward to how they cast this one.

Dont want to go down this rabbit hole except to say that PACE's pronouncements about comparison across definitions were meaningless because they manipulated those definitions - reportedly for London and definitely for CDC, where PACE only required the "any 4 of 8 symptoms" part for 1 week, not...

I know others will disagree but selecting the wrong cohort of patients is just as fundamental. Even if a body of research is perfectly conducted, its conclusions about efficacy and safety in a particular disease are meaningless if the cohort includes an overrepresentation of patients with some...

I have admittedly missed parts of this thread but I'm struggling to understand why so much focus and discussion just on the issue of subjective measures in unblinded trials. @Hilda Bastian's example of surgery and a pain outcome appears to be a valid example of an unblinded trial with a...

Just read this paper.Incredulous that it was published until I saw the comment about the editorial board of the journal. The paper states the following, suggesting that PACE is going to keep "giving" into its second decade. "It may be that the physically inactive group improve by doing more...

Thank you for that, @Hilda. I had not seen that before. Good blog On public comment... Unlike AHRQ, CDC is only providing for public comment on the draft review, not the draft protocol. There was a key informants panel, which I was on, that provided input on the key questions and other points...

As noted, hard to say without seeing the full paper. One thing that will be key is if this framework has a mechanism to account for the impact of PEM on functioning and disability. That's been a critical piece in getting approval for disability in the US.

Thank you for this information, @Hilda. Very helpful CDC has contracted a group to conduct an ME/CFS treatment review (all treatments, not just GET) and has stated they will provide an opportunity for public review of the draft report. The time and process for this has not yet been announced...

Perhaps. But it's also a cohort selection issue... The Institute of Medicine report discredited this study because of that, stating, “A study suggesting a role for childhood trauma in ME/CFS used the broad empirical definition of ME/CFS, which resulted in a biased sample with overrepresentation...

What about this? I don't quite understand the "onset" criteria in the review for the types of studies to be included but CDC did a population study in the mid 2000s that found childhood trauma increased risk of CFS: "Individuals with CFS reported significantly higher levels of childhood trauma...

Thanks for posting. Just saw this. WTF? Looks like a nightmare in the making. Or maybe I am just too cynical? Questions "1. What is the incidence of chronic fatigue syndrome in population based cohorts of adults? 2. What are the risk markers for chronic fatigue syndrome in population based...

Agree, this course looks great.

Just an FYI... Gluckman, the author of this Medscape CME also authored a March 2020 update to the Merck Manual for CFS. Granted that some differences are to be expected because the Merck article is shorter but its hard to imagine how the same author came up with what to me is a substantially...

@Michiel Tack - I understand and thanks. Good luck with May 12

@Michiel Tack - if you have time, I'd be interested in where you see the overstatements? Also, is it all the medication recommendations or specific ones that you are concerned with? THanks in advance