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@Hutan - Can you point me to the best place to read what Trish put together Thanks in advance

@Jonathan Edwards - could you expand on this comment? In what way is the post-exertional symptom exacerbation in RA different from that in ME/CFS? I'm trying to understand how doctors might differentiate the two

I have an October 2019 version and am seeing the same thing as @MCFS I have an Oct 3, 2019 PDF of the 2019 review and am seeing the same thing as @ME/CFS Skeptic - no editorial note and the most recent amendment is dated August 8, 2019. The citation in the Oct 2019 PDF is listed as follows...

If anyone has access to the 2024 version, could you share a copy with me?

Does anyone have the full new version of the review that they could share? If I understand correctly, its because the amended review and the editorial note were published on the same day. See this page from October 2, 2019 - references both the publication of the amended review on that day and...

Cochrane sent an email to the authors today stating the following: Authors’ rights: If a Cochrane Review is withdrawn at any stage before publication, the authors’ rights in the unpublished review are unchanged, and the authors can use the content elsewhere (such as for publication in a journal...

Another Cochrane email from exerciseforme-cfsupdates@cochrane.org pointing to this page on their site https://www.cochrane.org/news/update-exercise-therapy-chronic-fatigue-syndrome Update on ‘Exercise therapy for chronic fatigue syndrome’ In 2019, Cochrane published an amended version of the...

Here's the email from Cochrane

I agree that because Long COVID is even more broadly defined than ME was historically, the issue of heterogeneity there is going to be especially daunting for the reasons you describe. However, I'm not so optimistic about what is happening or has happened with ME. The 2015 IOM initiative was...

This!

I agree that research criteria may be different and that researchers need to select research criteria to meet the needs of their studies. The problem is we still have researchers using Fukuda to select ME/CFS participants even though it doesn't require PEM. In fact, NIH's Common Data Elements...

Typical of CDC's MCAM studies

I wondered about that also. But at least according to ChatGPT, this can happen for various reasons including when there's a small sample size or high variability in the data. So technically, that seems possible. But to your point, it seems dicey to imply that that is a real effect

Yes, NICE appears to define PEM in terms of worsened symptoms only. But the US Institute of Medicine, CDC, and NIH define PEM as a worsening of both symptoms and function as do the Canadian and ME-ICC criteria. From the IOM report: "PEM is a worsening of a patient’s symptoms and function after...

Non-specific cohort of fatiguing conditions so I'm skeptical on what they will really be able to learn about "how to differentiate the mechanisms of illness in ME/CFS from other complex multi-system illnesses." From the study page interest form... "This study is open to individuals with fatigue...

NIH's MapMECFS newsletter stated that the clinical data and biospecimens from CDC's Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) study are now available on mapMECFS and searchMECFS. But it requires a request as below, not just an account, to access...

At least by the November 2023 update - link. I don't remember seeing anything earlier "As completing the review will take time, the joint Cochrane/IAG meeting discussed a proposal from a member of the IAG for adding a revised editorial note. Some uses of the Cochrane review do not reflect...

This is fantastic, @Simone. Thank you for all your work in getting to this point.

Why bundle other kinds of "chronic fatigue" into the guidance for ME? Why not into MS or some other condition? Rhetorical... I worry that bundling "chronic fatigue" into the guidance for ME could at best confuses doctors by conflating ME as chronic fatigue and could harm pwME with inappropriate...

Posted on twitter by Jeanette Burmeister Part 1 of my new 4-part article about NIH’s Effort Preference claim for ME. Read about how NIH has misrepresented their own data. Start w/ understanding that NIH built on Wessely’s work: ME as a disorder of the perception of effort. Her first of four...