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  1. Simon M

    The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland

    I think we’ve got a pretty good idea of what it will say, based on what’s come out so far. Whether it impacts on people with ME, we obviously don’t know yet. What is clear is that it had a big impact on the department of health and social care. A large number of people with ME have put an...
  2. Simon M

    The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland

    It would be easy to miss in this article that both AfME and the MEA oppose CBT and GET, contributed to the 2021 NICE guidelines and have worked to help those being abused by the medical system.and . AME in particular played a big role in setting up the DoHSC review that has changed minds at that...
  3. Simon M

    Prof Ruth Ley receives Grant from European Research Council ... Silent flagellin is linked to chronic inflammatory diseases, incl Crohn’s disease & ME

    I don’t know anything about the subject area, but this looks important for three reasons: – The European Research Council is presumably something quite important. – And “advanced Grant” seems like a higher level of Grant than the usual one. – the recipient is the managing director of the Max...
  4. Simon M

    Wakefulness-promoting agents for severe fatigue: to use or not to use? 2024 De Wit et al

    My experience with modafinil is that it did help with fatigue (presumably the reason it was being trialled for MS). But it pushed me to doing more than my body could handle, though I did enjoy a few good weeks on it. Before I crashed, the biggest problem was that it would interfere with my...
  5. Simon M

    Wakefulness-promoting agents for severe fatigue: to use or not to use? 2024 De Wit et al

    Many years ago, when modafinil first came out, my consultant was running a trial using it for MS. He asked me if I wanted to try it, and I decided it was worth a go despite the potential drawbacks. It gave me a lot more Mental energy in particular. Eventually, it led to relapse. Several years...
  6. Simon M

    United Kingdom 2024: Online workshops on ME/CFS Research

    I guess a lot depends on the number and quality of speakers, but this series of workshop seems like a big step forward and well thought through. Thanks to everyone if you help bring these about. Sounds like the department of health and social care played a leading role?
  7. Simon M

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    Turns out it is a twin study and was posted here by Chris Ponting in 2019 https://www.s4me.info/threads/repurposing-large-health-insurance-claims-data-to-estimate-genetic-and-environmental-contributions-in-560-phenotypes-2019-lakhani-et-al.7675/ I probably commented it on it at the time, but...
  8. Simon M

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    I remember a large US insurance study from a few years back - not sure if it wsa this one - but it had a low sex ratio and CFS incidence was highest in the over 60s, making that study look suspect.
  9. Simon M

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    This is good news, and exactly what we need. With GWAS studies, size makes a big difference, and it’s fairly easy to combine the results of different studies to get more robust results. Separately, it’s also important to validate/replicate findings from one study in a separate, independent...
  10. Simon M

    Large scale phenotyping of long COVID inflammation reveals mechanistic subtypes of disease, 2023, Liew et al.

    I'm not up pon LC research, but I wonder about the relevance of this to ME, or even most LC. It only looks at people hospitalised with Covid, and effectively operationalises LC as anyone with ANY LC symptoms at 3 months, which is pretty broad. The vast majority of people with LC were not...
  11. Simon M

    NIH study - where to start?

    Hi, Janna, and welcome to the forum. Look forward to reading your blog.
  12. Simon M

    Epstein Barr Virus podcast from The Guardian

    Not to mention ME. 17% of DecodeME participants report their illness began with GF.
  13. Simon M

    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    Thanks @Hutan , Do you just submit the suggestion or A rationale as well?
  14. Simon M

    Open Medicine Foundation (OMF)

    >>Danielle has an extensive research background spanning various institutions and projects. At Leidos, she worked on the NIH’s All of Us Research Program [this includes a PwME cohort] as a Project Manager and Biomedical Scientist, supporting the development and implementation of new modules and...
  15. Simon M

    A map of metabolic phenotypes in patients with myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Fluge, Mella et al

    This is great, thanks. Can you tell us the R and p values (if p values are appropriate comparing between studies)
  16. Simon M

    Pre-Illness Data reveals Differences in Multiple Metabolites and Metabolic Pathways in Those Who Do and Do Not Recover from IM, 2022, Jason et al

    The pre-illness approach is great. The weird categorisation is worrying because it makes no sense, which raises the possibility it is post hoc, created to get some decent results. It was a huge study with a lot riding on it, so a lot of pressure. I'm glad you have found something in it, and...
  17. Simon M

    $720,000 grants to 2 La Trobe University researchers from the Mason Foundation for ME and long Covid research

    Well done on landing this and setting things up so well for a good study. Look forward to seeing the resutls in due course.
  18. Simon M

    Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

    That's very interesting, thanks for sharing. I'd also say that any effect of sex hormones is most likely seen on risk (whether or not you get ME), not symptoms for the illness. DecodeME found women had more symptoms (a bigger effect) and were more severe (smaller effect) than men (not sure if...
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