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    Closed UK: DecodeME updates, was recruitment thread.

    I wonder if the reason is that if you provided (free) genetic data then a lot of people (who do not have ME/CFS) may be inclined to apply to participate in the study.
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    Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, 2022, Rekeland et al

    Yes, Sir Humphrey and the survey comes to mind - you can get any answer you want --- if you don't care --- EDIT - should have added this: "Dr. Bruce Levin, a professor of biostatistics at Columbia University and an expert in clinical trial design, said, “To let participants know that...
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    Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, 2022, Rekeland et al

    Failure of the Government Officials on the project board i.e. overseeing the project (it was paid for by the UK Government - civil servants lead the project oversight board). Of course, they should have been advised by the "scientists/academics" - lead Peter White Queen Mary University of...
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    Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, 2022, Rekeland et al

    It occurs to me that folks like Fluge and Mella (this group) are reliable scientists - others are consistently unreliable.
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    United Kingdom: UKCRC (UK Clinical Research Collaboration) Subgroup on ME (part of the UK Government ME/CFS Delivery Plan)

    Obviously checkout Jonathan's comments above. My impression is that this looks OK - 1. Research Strategy MRC expert group led to GWAS +ve ---- funding research which cannot possibly tell us anything [unblinded & subjective outcome indicators AKA questionnaires]* -ve. 2. Building capacity and...
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    United Kingdom: UKCRC (UK Clinical Research Collaboration) Subgroup on ME (part of the UK Government ME/CFS Delivery Plan)

    Don't know much but yes there's a danger that the last Minister's agenda/interests aren't supported by the next incumbent/Minister. The APPG is the obvious route to challenge lack of progress/implementation. E.g. if there's evidence that health trusts are not following the NICE guideline then...
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    Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, 2022, Rekeland et al

    Yea I assume that's why folks like Brian Hughes highlight that unblinded studies, with subjective outcome criteria (questionnaires), are unreliable. I think Jonathan Edwards highlighted the placebo effect in his evidence to the PACE guideline review. So basically they're telling you this...
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    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

    I think I should have mentioned that a gene being "upregulated" basically means that it's making more of whatever protein it codes for. Basically, without checking, it's an MRNA that controls the gene ---telling it to make more/less of the protein. If you've an illness then upregulating the gene...
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    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    I agree fully - where's the evidence to support the statement? A thought occurs that Jose Montoya (before he exited stage) gave a presentation in which he talked about patients having walked the Rockies (mountains) and similar fetes ---. So maybe, in the way that a camel is a horse designed by...
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    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

    Wouldn't that make it potentially significant i.e. if it were found in a high proportion of the study population?
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    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

    10 out of 17 would appear to be a very high proportion. You'd need to think of the inclusion criteria, i.e. basis the 17 were selected, of course. Interesting to see what the increase was (e.g. clearly distinguishing patients from activity matched controls ---) and whether it's a potential...
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    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Surely there can't be many people who could keep pace (no pun intended) with this lot --- spin and spread misinformation to hide the truth... covers it pretty accurately. Surely he should be pointing out the strategies they've used and telling the ill/those representing them to keep up/learn...
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    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    To have a chance we need studies like GWAS [Chris Ponting] Sadly I have to agree although Fluge and Mella's rituximab trial showed that ME/CFS is not a B-cell autoimmune disease, or B-cell autoimmune cases are rare. I actually think we haven't applied techniques, like GWAS, which have been...
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    Covid-19 vaccines and vaccinations

    Haven't read it but where do the antibodies come from - people who have been infected? If the antibodies work then that might be useful in treating those who are at risk of serious illness --- those who are hospitalised,---
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    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    We certainly are in the early days of finding out ---- my understanding is very limited but long lived plasma cells do produce antibodies and are presumably capable of producing autoantibodies/autoimmunity. I'm open to the idea that autoimmunity may explain some cases of ME/CFS - but there's no...
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    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    Given that Trudie Chalder "is a Professor of Cognitive Behavioural Psychotherapy*" you'd expect some evidence to support this statement--- OK I'm showing my lack of knowledge --- presumably asking for supporting evidence means that "you don't understand" or some such. Presumably if you started...
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    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    "Many of the genes identified are linked to the key cellular mechanisms hypothesized to underpin ME/CFS, including vulnerabilities to --- autoimmune development. Well, since rituximab failed that statement ("--vulnerabilities to --- autoimmune development--") would be a bit surprising - i.e. if...
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    Science - Understanding myalgic encephalomyelitis, Sonya Marshall-Gradisnik & Natalie Eaton-Fitch

    I haven't read the review but in terms of identifying the underlying cause/solving the "medical mystery" GWAS aims to do that --- e.g. the (too) small Norwegian study turned up TPPP gene (thread on this website). So yea forget the medical mystery bit and look at the available tools --- like GWAS
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    Protocol Pacing, Conventional Physical Activity and Active Video Games to Increase Physical Activity for Adults with ME/CFS: Protocol for a Pilot, 2017, Ferrah

    A very brief glance at the Results and Conclusions and the thought occurs that they perhaps they're trying to leave this "study" behind/forget about it ---
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    Long Covid drug BC-007 research news

    Precisely sums up , thank you - "---we have no treatments---". We need research (such as GWAS) to identify the cause/underlying disease mechanism --- then we can move to treatments.
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