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    News from Germany

    This document about a panel decision to not recommend funding a phase 2b Inebilizumab (Uplizna) trial was obtained by an FOI request to the German Ministry of Education. Source...
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    German Government announces new funding guidelines for ME/CFS

    If I understand it correctly, those are the planned spendings from BMBF (ministry of education and research) only. Additionally, they did announce 40 million in total for longcovid and ME/CFS research (20 million from BMG (health ministry) and 20 million from the GBA (federal joint committee)...
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    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    There is an overview of the changes made on page 202 onwards (PDF). Btw, the three external experts were: Erika Baum, Bieberta: Lead author of the German DEGAM Guideline on fatigue/tiredness Wolfgang Eich, Heidelberg: Section Head (Integrated Psychosomatics Section) at Heidelberg University...
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    Research news from Bhupesh Prusty

    Not sure if it was posted somewhere already, Prusty recently received a 25.000 € grant from the German Association for ME/CFS: https://www.mecfs.de/forschungsfoerderung-2022/ Automatically translated with DeepL: "The second project is being conducted by PD Dr. Bhupesh Kumar Prusty at the...
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    News from Germany

    The German ME/CFS Society and Long COVID Germany published a detailed guidance for projects on research and care for ME/CFS and post-COVID syndrome (announcement and PDF, both in German). English Article about it...
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    Germany: 2022 Society for General and Family Medicine (DEGAM) Fatigue Guideline

    Only the chapter about ME/CFS is referencing the NICE ME/CFS guideline. Sorry for the slight confusion. Yup, IQWiG is only creating a report about ME/CFS for the ministry of health. It's not a guideline, but it appears the draft was sometimes received as such. (On Mastodon IQWiG recently...
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    News from Germany

    The German Society for General and Family Medicine (DEGAM) published its new guideline on "Fatigue". One chapter is about ME/CFS. https://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002_Leitlinie Muedigkeit/Aktualisierung Dezember 2022/Langfassung Leitlinie...
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    Germany: 2022 Society for General and Family Medicine (DEGAM) Fatigue Guideline

    Copied post The German Society for General and Family Medicine (DEGAM) published its new guideline on "Fatigue". One chapter is about ME/CFS. https://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002_Leitlinie Muedigkeit/Aktualisierung Dezember 2022/Langfassung...
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    ME/CFS and Post-Exertional Malaise among Patients with Long COVID, 2022, Jason et al

    Shouldn't the figure be 40% (78/195) instead of 29,43%? And 71,37% (187/262) instead of 70,57% accordingly? It appears that the percentages were calculated in regard to the amount of people (not) meeting ICC, instead of the number of people (not) reporting to have ME/CFS. Edit: correction...
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    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    In the submission of the German Association for ME/CFS they write: "In 2021, IQWiG initially published a call for tenders for two experts. The search was for two medical specialists of any specialty with expertise in ME/CFS. This already published call for tenders has been withdrawn. Instead a...
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    Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]

    White P et al. - Eight major errors in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis Snippets were posted on Twitter by a journalist: "The article should appear soon in the Journal of Neurology...
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    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    "We publish our 100-page statement on the #IQWiG preliminary report on #MECFS. The central points of criticism include, among others, the benefit assessment of the activation therapies GET/CBT and the prevalence estimate of ME/CFS. To the statement...
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    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    (If someone ever needs it, attached are the revised and submitted notes on PEM in German. I was pretty surprised though on how unprecise (while sounding pretty well) the deepl translation was.)
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    A general thread on the PACE trial!

    The text recognition had some errors, I hope it's correct now. Here is the transcript:
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    A general thread on the PACE trial!

    The questionnaires are included here: https://www.s4me.info/docs/PACEProtocolSearchable.pdf
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    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    EMEC has submitted its impressive comments: Thank you very much EMEC @ME/CFS Skeptic!
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    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    Thank you, @petrichor! All good points, I'll edit the post in the next days. @adambeyoncelowe Thanks! The 80% are actually set in their general methods paper. I'm note sure if this makes the whole thing better of worse though?
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    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    Some thoughts on PEM Assessment of PEM was not adequate In contrast to the quote above, on page 139 (pdf 159) of the draft IQWiG themselves recognize that the measure for PEM in PACE was too broad. There is good reason for caution. PACE: Fukuda (1994) and Reeves (2003) White (2011) state...
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    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    On page 163 (pdf 178) of the methods report they write: "The classification as “high” of the risk of bias of the result for an outcome does not lead to exclusion from the benefit assessment. This classification rather serves the discussion of heterogeneous study results and affects the certainty...
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