Search results

  1. Simon M

    The biology of coronavirus COVID-19 - including research and treatments

    The funding appears to include a GET and CBT long covid study: Rehabilitation Exercise and psycholoGical support After covid-19 InfectioN (REGAIN) University Hospitals Coventry & Warwickshire NHS Trust NIHR132046 - £1,191,977 Some COVID-19 patients continue to experience long-term symptoms...
  2. Simon M

    The biology of coronavirus COVID-19 - including research and treatments

    This is a pretty cool study that showcases what GWAS studies like DecodeME can do - though the authors had the advantage of knowing that there are strong genetic factors influencing severity of viral illnesses. Amongst the authors are DecodeME's Dr Veronique Vitart and @Chris Ponting. Veronique...
  3. Simon M

    Why is ME/CFS getting so little research funding?

    There are lots of big international cohorts tracking large groups of healthy people for onset of new conditions (effectively the UK non-me biobank does this too). These can be repurposed. One in Germany was adapted specifically to follow covid and so I guess could easily be turned to long covid...
  4. Simon M

    Why is ME/CFS getting so little research funding?

    For all the social reasons, I think the biological one set out by Jonathan Edwards is the biggest reason that researchers stay away. It's a really tough problem to crack (though by no means impossible). I think that NIH Director Francis Collins was right when he said that solving ME/CFS will...
  5. Simon M

    A hierarchical logistic regression predicting rapid respiratory rates from post-exertional malaise. Jason et al. 2020

    That potentially makes it the largest ever sample of mecfs peeps who have had a CPET. I would love to see The results for such a large sample. So far we’ve had a lot of small studies: what we need are large studies, or good meta analyses of small ones.
  6. Simon M

    Attitudes of incoming US politicians to ME/CFS and post-Covid 19 illness

    Details below. Basically, they aim to recruit a lot of people with a positive diagnosis for SARS-COV2 and follow them for 18 months, with ME/CFS as the primary outcome. (I think that's quite a strong connection with ME/CFS.) Innovative Support for Patients With SARS-COV2 Infections (COVID-19)...
  7. Simon M

    USA: INSPIRE Innovative Support for Patients with Covid-19 Registry (ME/CFS outcome measure)

    Post copied from Attitudes of incoming US politicians to ME/CFS and post-Covid 19 illness Details below. Basically, they aim to recruit a lot of people with a positive diagnosis for SARS-COV2 and follow them for 18 months, with ME/CFS as the primary outcome. (I think that's quite a strong...
  8. Simon M

    Changes in DNA methylation profiles of myalgic encephalomyelitis/chronic fatigue syndrome patients reflect systemic dysfunctions, Helliwell et al 2020

    No. These are differences in methylation of DNA - think of methylation as a tag that alters the activity of genes near the tagged DNA. So as @Jonathan Edwards says, it's about gene control (through methylation), not differences in DNA sequences that GWAS detect. Oh, that is disappointing. Though...
  9. Simon M

    Changes in DNA methylation profiles of myalgic encephalomyelitis/chronic fatigue syndrome patients reflect systemic dysfunctions, Helliwell et al 2020

    Like all Warren Tate studies, this seems to be done meticulously well, but on a very small sample. The finding that there was a 59% overlap of the specific genes identified in this study with other studies using (inferior) array-based technology, together with the clustering around types of...
  10. Simon M

    Re-analysis of genetic risks for Chronic Fatigue Syndrome from 23andMe data finds few remain, Bedford et al, 2021

    Plain talking! note that this new analysis has not yet been peer reviewed, but I am delighted to see healthy scrutiny of any ME/CFS research. It is all too rare. Note that the recent genetics review from Dibble, McGrath and Ponting also raised concerns about the Pérez study.
  11. Simon M

    Effect of disease duration in a randomized Phase III trial of rintatolimod, an immune modulator for [ME/CFS], 2020, Mitchell et al

    The makers of Ampligen see treating long Covid as a huge potential market opportunity for them, and have produced an exploratory (so not reliable) analysis of existing data that conveniently supports this. That said, the idea that people who have been ill for less time are more likely to...
  12. Simon M

    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    "BACME believes that patients should have access to the best available clinically effective treatments, therapy and support with rehabilitation to relieve, reduce and manage symptoms where possible." The "clinically effective" bit might be a problem for them, whatever the rest of the language...
  13. Simon M

    Chronic Fatigue Syndrome the roles of perfectionism and metacognition in co-morbid depression and anxiety, 2020, Wright (D.Clin.Psy.)

    :) A distraction A long time ago there was another flaky personality study, which I tried to send up. You don't need to know the details of the study, but it was this one by Nater. Errant scientist called to see the Headmaster: "Nater, come here! I've just read your paper and it's complete...
  14. Simon M

    Cytokine profiling of extracellular vesicles isolated from plasma in ME/CFS: a pilot study, 2020, Giloteaux, Levine, Hanson et al

    What I like most about this #mecfs paper is researchers doing a pilot study in order to improve the quality of their final studies. Will be excited to see how this work pans out in the pre/post exercise studies to come. Note that the cytokine study only had a sample size of 19...
  15. Simon M

    Properties of measurements obtained during cardiopulmonary exercise testing in individuals with ME/CFS, 2020, Davenport et al

    Some comments Strange study design Leaving aside the issue of some table data not matching the figures, the study has a weird design. The group has spent the last decade focusing on the difference in ME/CFS patients between maximum exercise tests on day two compared with day one. Now, this...
  16. Simon M

    Understanding long covid: a shortcut to solving ME/CFS? Simon McGrath

    I suspect we are in a better position than in most ME/CFS studies Yes, it's important to go into this with an open mind. that doesn't exclude ME/CFS as one possibility for some patients (as stressed in my blog - we don't know anything for sure). All researchers I saw expressing an opinion...
  17. Simon M

    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    “The nanoneedle’s inability to keep up with the demand meant that its full potential wasn’t nearly being reached. A dramatic upgrade was needed. That has happened. The nanoneedle has been redesigned and sent to a manufacturer in China and one in the US to produce. Where it could test one sample...
  18. Simon M

    Understanding long covid: a shortcut to solving ME/CFS? Simon McGrath

    I would have thought there were two big advantages to the current situation. The first is that it is relatively easy to set up prospective studies of long covid. Assuming for now that some of them will prove to have ME/CFS, that means prospective studies of ME/CFS too. Along with genetic...
  19. Simon M

    Understanding long covid: a shortcut to solving ME/CFS? Simon McGrath

    In a way it is - but useful still as a lot of people were suffering post coronavirus and needed help. When the medical establishment was assuming they were fine and often telling people it was psychosomatic. Long covid patients have focused minds on the problem: WHO, CDC and NIH amongst others...
  20. Simon M

    Understanding long covid: a shortcut to solving ME/CFS? Simon McGrath

    I am not into competitive suffering either but I wanted to express empathy for others with chronic illness. No one yet knows what long covid is. People are dying of coronavirus and those with long covid are concerned this might kill them too. It's very early days so it's like the early days of...
Back
Top Bottom