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    Funding of ME/CFS research in the UK

    @CRG and I have been attempting to raise the issue of funding for low/very low quality research*. I've also written to the APPGs i.e. asking them to challenge Government funding for low/very low quality research - typically unblinded studies with subjective outcome criteria (questionnaires) -...
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    Best chopping tool/food prep gadget?

    I have a "ninja foodi max ag551uk" - in fact I have 2! I bought one and the internal temperature probe stopped working - it's a metal probe you stick in your food and set the temperature ---- 74 degrees C for chicken or whatever. Anyway I wrote to them and they said here's a refund code bring it...
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    Autoimmunity is a hallmark of post-COVID syndrome, 2022, Rojas et al

    I haven't looked at this, and my knowledge is very limited. I'm wondering about the quality of the tests; I've seen comments here that some studies use linear peptide arrays. So the results are unreliable to begin with. There's a thread here* re a better technique and I think Solve funded one...
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    Amino acids and energy production

    Some weird stuff re amino acids* when diet is low the body increases consumption of them - suppose that links to ME/CFS as starvation but can't see how relates to proline reduction/sensitivity *https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0093597
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    Amino acids and energy production

    Amino acids have featured in ME/CFS e.g. Chris Armstrong did some MRI work and found some depleted (he suggested these were consumed for energy i.e. even though glucose was high) and some elevated (suggesting they weren't used). Fluge and Mella followed that up around 2016 by suggesting that PDH...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I would have thought doing a review of the evidence base for exercise in ME/CFS was up there with the easiest review ever. If Carlsberg did ---- Most/all of the studies are unblinded and use subjective outcome criteria, so there is no evidence to review. This comes to mind "If nobody is trying...
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    Paul Cheney seminar on oxygen toxicity in ME/CFS

    Haven't looked at the above. One from my small repertoire of stock answers; I assume that there would be clues in Chris Pontings GWAS study i.e. if redox was an issue. Also, from memory there are some standard tests for redox [Glutathione Peroxidase - GPX?]. So I'd expect something to turn up...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I think the key thing here is that the lead on DecodME actually cares. Chris Ponting has spoken about the driver - he knows Simon and was keen to try to help. Apologies but those running Cochrane don't care. If they did then there are ample opportunities identified on this site about how to...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Fair enough i.e. "that is beyond their [Cochrane's] remit, their (volunteer) authors would not want to or have time do it" but why are NICE funding them?
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Please keep asking and thank you for publishing it on social media --- that way it's more likely to come to public attention/decision makers attention. Ultimately that may be the way to force Ministers (and thereby NICE) to disown Cochrane ---- Cochrane can't objectively assess the quality of...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Loads of dosh for those benefitting from ineffective treatments --- of course there are incentives to leave them in place. With respect, I think the real issue is that now that we have an objective appraisal [see reference to Peter Barry above] i.e. that these interventions aren't effective...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    My initial reaction was that the responses to the consultation would be pretty damming (polite phrase) - even allowing for some delusion, and/or defences based on self interest, i.e. those responding on behalf of Cochrane, the whole idea of a consultation seems like a car crash with Cochrane the...
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    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I'm not sure - I have no direct experience. However, it may be: a way to generate useful views from constructive elements/participants re translating the guideline into practice; a useful way to moderate the behaviours of the destructors (weirdly the medical professional bodies) - let them...
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    The HANDI Working Group

    Yea there seem to be a few of those high profile folks around --- they may be disproportionately represented --- by their own loudness --- many much better Doctors probably are frustrated that they cannot help ---- which is where lobbying - for research, centres of excellence (specialist...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Sounds reasonable maybe the challenge should be to NICE i.e. now it's signed up to a co-operative agreement! Possibly a Parliamentary Question and/or an email to the APPGs (ME/CFS & Covid).
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    The HANDI Working Group

    I'm late to the party as usual - this is pretty shocking "The Handbook of Non-Drug Interventions — HANDI — project was launched by the Royal Australian College of General Practitioners (RACGP) in 2013 to promote effective non-drug treatments. HANDI is an online formulary of non-drug...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    The reference to "unpublished data" sounds a bit worrying - reminiscent of PACE (withholding data). I'm sure NICE would state that that the process of producing guidelines is transparent; however, it's one of those things --- you need to know the dodges/how to analyse the evidence before you can...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I think the key one is NICE's responsibility to produce evidence based guidelines. Also, the political accountability where NICE fails to produce evidence based guidelines --- I know, trying to make Teflon coated Departments/Ministers responsible for ensuring that guidelines are evidence based...
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    Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis, Bjornevik et al (2022)

    Merged thread "Study identifies how Epstein-Barr virus triggers multiple sclerosis share A new study found that part of the Epstein-Barr virus mimics a protein made in the brain and spinal cord, leading the immune system to mistakenly attack the body’s nerve cells.---" I recall th molecular...
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