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  1. Simon M

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    You came across a smart and thoughtful, as usual. You raised important issues, and as you can see from Andy‘s reply, the project, particularly the PPI group, has spent time thinking about just these things. I have tried to engage With ICC-only supporters but got absolutely nowhere. Still, I...
  2. Simon M

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    From the website (for referennce): Recruitment Plan for the ME/CFS Biomedical Partnership We will need saliva samples from at least 20,000 people with ME/CFS for the genome wide association study to look at whether some of the reasons that people get ME/CFS are genetic. You can find out more...
  3. Simon M

    News from NIH: ME/CFS Webinar - October 17, 2019

    I think Koroshetz is referring to something rather different. The key point is that here are people who meet the criteria for me/cfs, appear to have me/cfs, but deep exclusionary diagnosis during a week-long in-patient admission at what is probably the best diagnostic facility in the world (the...
  4. Simon M

    News from NIH: ME/CFS Webinar - October 17, 2019

    Read the transcript: mostly the NINDS council report implementation seems to me to be based on a lot of good things, but none of them is game-changing. Even so, a few things that came up caught my eye: 1. Funding, including possible set-aside funding 2. A new biobank of mecfs samples...
  5. Simon M

    Ron Davis latest: more evidence of "something in the blood" (Simon M blog)

    Not an answer for ME/CFS, but here's an example of (non-nanoneedle) bioimpedance being used to measure changes in cells for studying the effect of candidate drugs in fibrotic disease. https://pubs.acs.org/doi/full/10.1021/acssensors.7b00442?src=recsys# Crucially, the study identified what was...
  6. Simon M

    Ron Davis latest: more evidence of "something in the blood" (Simon M blog)

    Janet Dafoe has posted a very helpful note from Ron Davis on PR explaining in much more detail the status of the nanoneedle project and work to find something in the blood: [Janet] There are a lot of various threads and tweets about this so I asked Ron to clarify where the research is at and...
  7. Simon M

    Ron Davis latest: more evidence of "something in the blood" (Simon M blog)

    That is a very important question. It (or at least the biology underpinning the in vitro test) was discussed at length on deep into this thread but was over my head. What I would say is that electrical changes are often used as proxies of changes in cells. It is used at the level of a solution...
  8. Simon M

    Ron Davis latest: more evidence of "something in the blood" (Simon M blog)

    Thanks. No, it has not, take a look at this blog, with my labelling-tweaked verrssion of the PNAS paper graph https://mecfsresearchreview.me/2019/05/08/nanoelectric-device-could-lead-to-a-diagnostic-blood-test-for-me-cfs/ Yes. Neither Ron nor anyone else has suggested a trial. They are...
  9. Simon M

    Ron Davis latest: more evidence of "something in the blood" (Simon M blog)

    Latest from Ron Davis: more evidence of "something in the blood" © Mark Tuschman (with thanks for his permission to use here) More clues are pointing to a role for blood plasma in ME/CFS. At a recent talk, Ron Davis presented data showing that ME/CFS cells behave normally in the nanoneedle...
  10. Simon M

    Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers...ME/CFS 2019, Eguchi et al

    Comment Thanks for all the analysis on this thread. Here are some additional points from me. I guess the main point is that the full text doesn't really live up to the big claims in the abstract. But some of the findings are interesting. The conclusion is more accurate, so I'll start with...
  11. Simon M

    Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers...ME/CFS 2019, Eguchi et al

    Oh dear, another paper I'm going to have to read... (abstract) Background: This is the key point: From two independent proteomic analyses using circulating EVs from ME/CFS, healthy controls, idiopathic chronic fatigue, and depression, proteins identified from ME/CFS patients are involved in...
  12. Simon M

    Still to open How to make patients who aren't engaged in the patient community aware of studies recruiting?

    For the general public, I think patients tell the most compelling stories. But I think that a lot of patients would like to hear from the researchers running the trials: Are they making a good case for me to give them my sample and data (Have they convinced this is an important study to join)...
  13. Simon M

    Mike Snyder at Stanford symposium on the potential of smartphones to better understand diseases, inc ME/CFS (Simon M blog)

    Thanks for all the comments On the blog and the facebook page about it, there are quite a lot of people saying that they already use resting heart rate to help avoid PEM eg Important points. It's worth noting that all Snyder's health "discoveries" were checked out with clinicians (avoiding...
  14. Simon M

    Still to open How to make patients who aren't engaged in the patient community aware of studies recruiting?

    Love this! And I agree with the later comment that "pass it on" is key. For that reason, we need a good name for the GWAS project that people who know nothing about ME will remember and pass on. And that when you put into google will bring up the GWAS project website (so nothing too generic)...
  15. Simon M

    Mike Snyder at Stanford symposium on the potential of smartphones to better understand diseases, inc ME/CFS (Simon M blog)

    Mike Snyder is a pioneer and I thought he gave the standout talk at Stanford this year. Stanford symposium: the potential of smartphones to better understand diseases, including ME/CFS “We think smartphones will be the most important health tool in future”, said Dr Michael Snyder at the recent...
  16. Simon M

    UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

    Chris’s inaugural talk at Edinburgh as professor of , um, whatever:
  17. Simon M

    UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

    My blog is now live (thanks, @Andy, for checking). Probably nothing new in it for anyone who has read this far in the thread. Bold plans for two big UK biomedical research projects November 8, 2019 Simon McGrath The ME/CFS Biomedical Partnership, led by Prof Chris Ponting and Dr Luis...
  18. Simon M

    UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

    This seems important to me. The project has to go through peer review - and on average only 20% of proposals are funded - but the MRC is taking an active interest by organising a workshop to improve the research proposal. Fingers crossed. Having a huge genetic study (GWAS) and a major expansion...
  19. Simon M

    What paper found 25% of patients are housebound/bedbound?

    The key paper, by Pendergrast, was discussed on PR in 2016 on this thread. With wise analysis here :)
  20. Simon M

    Abnormal blood lactate accumulation during repeated exercise testing in ME/CFS, 2019, Lien et al

    Thanks, @Snow Leopard, interesting. VO2max is certainly affected by the volume of blood pumped, and also by the quantity of red blood cells (hence the effectiveness of erythropoietin in anaemia and in doping). But it must also be related to actual oxygen consumption by the body. If tissues are...
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