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  1. Simon M

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and fibromyalgia are indistinguishable by their cerebrospinal fluid proteomes 2022, Schutzer et al

    This tells us no such thing. They looked at 1,789 shared proteins and, quite rightly, corrected for the huge number of comparisons. That makes it very hard to find statistically significant differences and with n=15 they could only hope to find enormous differences. Not statistically...
  2. Simon M

    Irish Times: “ME: ‘I spend 20 hours a day lying down. I have four upright hours in the day’”

    Thanks, @Tom Kindlon, for being willing to put yourself out there. I'm sorry the illness has had such an impact on your life. I think the world has missed out on you, as well as the other way around.
  3. Simon M

    Open Protocol: Multimodal MRI of myalgic encephalomyelitis/chronic fatigue syndrome: A cross-sectional neuroimaging study 2022 Shan et al

    I’m not familiar with the authors, but this looks like a very impressive study. I don’t know how much evidence there is for their hypothesis beyond “well, that would explain a lot”. It’s worth spelling out what they’ve done well t (and haven’t even done the study yet): – published a protocol...
  4. Simon M

    ME Genetics Research Symposium, Edinburgh, 14th September 2022

    ADDED I wasn't at the meeting, but a lot of this reads like a general commentary on genetics research from the author, not reporting/a summary of the genetic section of the symposium (for instance, I'd be surprised if any of the speakers spent much time on the 2007 Kerr study). "It is important...
  5. Simon M

    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    it's a good point, but I don't think so. In fact, some of the ME patients also reported an MS diagnosis. I asked the researchers if this could explain the findings. They went away and checked the numbers and said no because there were few cases. Added: Also, in diagnostic accuracy studies of...
  6. Simon M

    Blog: New Study Links 14 Genes to ME/CFS

    It's a concern. The authors point to two issues that might be behind the lack of replication. 1. For technical reasons (that they will address in future studies), they weren't able to run a full replication and are likely to have missed true positives. 2. The cohorts were less than ideal, coming...
  7. Simon M

    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    Link with Long Covid & MS - work underway I didn't include this in my blog because of my concerns about the accuracy of gene identification I mention above, but I still find it very interesting. Using a hypothesis-free combinatorial analytics approach based on the PrecisionLife platform, we...
  8. Simon M

    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    Thanks, it's a very interesting idea, but you may have overestimated by PowerPoint skills. What the paper doesn't show is the link between subgroups and genes. Or even clear description of subgroups e.g. (hypothetically) infectious onset in teens, POTS, more severe - because there is limited...
  9. Simon M

    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    I've now published a blog, thread https://www.s4me.info/threads/blog-new-study-links-14-genes-to-me-cfs.29511/#post-437195 Thanks for the feedback on the graphics I posted. It was clear I need to make some changes to keep everything clear, I'm afraid I ran out of energy. I might add them later.
  10. Simon M

    Blog: New Study Links 14 Genes to ME/CFS

    New Study Links 14 Genes to ME/CFS A study has analysed existing genetic data in a new way to link 14 genes to ME/CFS and identify many patient subgroups. If the new approach pans out, it could transform ME research and turbocharge the development of treatments. Paper: Genetic Risk Factors for...
  11. Simon M

    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    Hi, I'm looking for some help with my blog. Assuming everyone on this thread is aware that in this study Precision Life uses combinations of SNP's (between three and five), which it calls disease signatures. Then it searches for all the patients with the same disease signature (actually, it...
  12. Simon M

    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    PrecisionLife would argue that this could be due to subgroups. The largest subgroup they identify covers 31% of patients. Let's say this is an autoimmune subgroup: if only 30% of those treated with rituximab had an autoimmune disease (and assuming rituximab was the right autoimmune drug), it...
  13. Simon M

    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    I'm aiming to get a blog out later in the week and I'm talking to 1 of the researchers this morning. It's onw of the most complex papers I've ever read, so it might take me a while. Briefly, this approach, by a techbio company, uses a novel analytical method on existing genetic data (from the...
  14. Simon M

    ME Genetics Research Symposium, Edinburgh, 14th September 2022

    This is now sold out - will videos of the sessions be made available in due course?
  15. Simon M

    ME Genetics Research Symposium, Edinburgh, 14th September 2022

    Sorry to hear that, Andy - hope you make a good recovery from Covid Best - one of the disappointed hordes.
  16. Simon M

    Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis, Bjornevik et al (2022)

    This rather excited opinion piece by psychosocial enthusiasts is founded on getting the maths wrong. Their great "insight" is that the association between MS and EBV is generally weak, and only strong for the 36 cases of MS who were EBV negative when they join the military and 35 subsequently...
  17. Simon M

    Predictors of Chronic Fatigue Syndrome and Mood Disturbance After Acute Infection, 2022, Sandler, Lloyd et al

    It's worth remembering that this is Covid, where severe infection means hospitalised, ICU and sometimes death. Even 'mild' covid is often pretty nasty and might well compare with the illnesses included in the Dubbo study (glandular fever, Ross River Virus and Q fever) I think it would be worth...
  18. Simon M

    Predictors of Chronic Fatigue Syndrome and Mood Disturbance After Acute Infection, 2022, Sandler, Lloyd et al

    Worth bearing in mind that the original analysis (backed up by this new one) found that the only significant predictor of CFS at 6 months was the severity of the initial infection and not psychological factors. I think all the data in the original study came from analysing SPHERE data...
  19. Simon M

    Response Shift After CBT Targeting Severe Fatigue: Explorative Analysis of Three Randomized Controlled Trials, 2022, Müller, Knoop et al

    We wouldn’t have either budget or ethical approval for this. But other researchers could apply to recruit from Decode ME participants who have consented to be approached about joining further research studies. research is within also have the genetic data on these participants. That’s one of...
  20. Simon M

    Predictors of Chronic Fatigue Syndrome and Mood Disturbance After Acute Infection, 2022, Sandler, Lloyd et al

    the different figures are because they needed to use different statistical approaches for different sets of data. The hazard ratios for illness severity and mood disturbance are hazard ratios of "recovery" (I know, it's odd) and the data is the number of days for recovery for each patient. They...
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