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  1. Simon M

    Thesis Characterising the Electrophysiological Properties of Cells in Health and Disease [on ME/CFS], 2024, Clarke

    Yes and – in fact, it’s not a very impressive results versus healthy controls. I hope it will be possible to refine this process. It was the scale of the separation in the nanoneedle results that was so striking.
  2. Simon M

    Establishing a "Ground Truth" Resource for ME/CFS

    This is over simplistic, but I think the answer is something like this: Replicated: – about 2/3 of people with ME report they had an infectious onset. – infectious mononucleosis leads to me in a significant minority of people who develop it in their teens/20s. – There is a reduced ventilatory...
  3. Simon M

    Speculations about the genetics of ME/CFS and DecodeME

    That’s really interesting idea and that’s not just for a WGS. Crowd funding is a lot harder than people imagine, but the sums involved would be more doable. Though I don’t know how much fundraising appeal hiring lobbyist and people to write grant apps would have.
  4. Simon M

    Speculations about the genetics of ME/CFS and DecodeME

    It could be £10m for a very large one. Bear in mind it was an enormous battle to win funding for a £3.5m GWAS, but I think it might happen in the medium term, particularly as sequencing prices come down.
  5. Simon M

    Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

    Do you are developing an iPhone app?! Seriously impressive, and I don’t recall seeing anyone do that on the Forum before. Thanks. It seems like a great way to extend the tools/research. And above all, to bring people with ME into the process.
  6. Simon M

    Speculations about the genetics of ME/CFS and DecodeME

    Don’t know, Sorry. I know Ian Lipkin applied for a NIH grant for a small GWAS. Not sure if this has been funded. Also, Jarred younger, in his latest video, said he is doing a rare variant/WGS study with Liz Worthy. No mention of sample size, and I don’t recall if he mentioned who was funding work.
  7. Simon M

    The 'writing on the wall' hypothesis

    Decode ME collected enough to provide DNA for a GWAS analysis and also a rare variant study (whole genome sequencing, WGS). The vast majority of participants gave consent to the rest of their DNA to be analysed by WGS. The problem is it’s very expensive, but the material is there for a very...
  8. Simon M

    Speculations about the genetics of ME/CFS and DecodeME

    Post copied from another thread and subsequent posts moved Decode ME saliva samples were big enough to provide DNA for a GWAS analysis and also a rare variant study (whole genome sequencing, WGS). The vast majority of participants gave consent to the rest of their DNA To be analysed by WGS...
  9. Simon M

    Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

    I think this is excellent: piloting through multiple versions, testing on a wide range of severities, covering a broad range of functioning from personal care to more physical and eg concentration, and with no floor or ceiling effects. Fig 1 (below) shows the range of scores across severities...
  10. Simon M

    Preprint Development of Epidemiological Research Guidelines for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome in Canada, 2024, Nacul

    When DecodeME looked at this, that was the reason we made the choice - plus reducing the burden for patients. That recommendation seems pointless for the reasons you mention, though at least the 2-step method avoids sweeping up everyone.
  11. Simon M

    Preprint Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported CFS in BC, Canada, and their health-related quality of life, 2024,Nacul

    References from my post: half of all the referred patients to a specialist CFS clinic had alternative medical and psychiatric diagnoses (2); Newton 2010 found similar. One of those was for suspected cases, I'm pretty sure the other was of diagnoses but also see ref that found 48% of GPs were not...
  12. Simon M

    Preprint Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported CFS in BC, Canada, and their health-related quality of life, 2024,Nacul

    It's great to have an assessment on what proportion of people who report a "Chronic Fatigue Syndrome diagnosis" meet ME/CFS criteria. 34% is unsurprising. People might remember a "chroninc fatigue" diagnosis as CFS, bu we also know that around half of GP diagnoses are wrong. I don't think we...
  13. Simon M

    The itaconate shunt hypothesis

    I’m not sure to what extent this finding has been replicated, which gives me some concern. However, I know @chillier has done some analysis of published data that, I believe, is consistent with the finding. Maybe they can comment?
  14. Simon M

    Uni of Glasgow: Inherited chromosomally integrated human herpesvirus 6 (iciHHV-6) in DecodeME [Analysis completion planned for end of Sept 2024]

    Thanks. Great to know this was done using the Leftover material rather than eating into the 50% remaining from each original sample.
  15. Simon M

    Uni of Glasgow: Inherited chromosomally integrated human herpesvirus 6 (iciHHV-6) in DecodeME [Analysis completion planned for end of Sept 2024]

    this looks like a very interesting study, and I like the fast timescale. Above all, having such a big cohort allows people to big studies to get robust answers. The Glasgow University page says they need samples and data. Data I understand. As HHV6 is integrated, Presumably the DNA sequences...
  16. Simon M

    ME Assoc: How Many People in the UK have ME/CFS?

    yes. The question is, how much has it increased? And there is no good data on long Covid prevalence. Part of the problem is the incredibly broad definition: symptoms persisting or developing 12 weeks after a Covid infection with no alternative explanation . There is no severity threshold, no...
  17. Simon M

    ME Assoc: How Many People in the UK have ME/CFS?

    There is: 1. The sex ratio of 3.9 is very high, though not as high as research samples. It's hard to think what else the code is being used for that would have such a high ratio. Depression (1.5-2) and Chronic Fatigue (arond 2) have much lower sex ratios. The US study is clearly bunk: very low...
  18. Simon M

    ME Assoc: How Many People in the UK have ME/CFS?

    The estimate of 390,000 from the recent preprint (submitted for publication) by Gemma Samms and Chris Ponting probably gives us the best estimate, IMO. It analysed data for all 100k people with a g93.3 Post viral fatigue sydrome ICD-10 diagnostic code. The based their estimate of 0.6% on the...
  19. Simon M

    ME Assoc: How Many People in the UK have ME/CFS?

    ME Assoc: How Many People in the UK have ME/CFS? The MEA is trying to come up with an updated prevalence figure for the UK and is looking for input from PwME. Their website article is above, their Facebook page seems to be the place for comments, though some people might find a forum thread an...
  20. Simon M

    Remarkable researchers hunting for ‘something in the blood’ of people with ME

    Sorry the blog went down for a while yesterday (not because it was overwhelemed, as far as I know). It's great to see this response to Charlie and Audrey's work, and thanks for the kind words about the blog. And that is why it was such a pleasure talking to you and Audrey. You are going about...
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