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    DecodeME - UK ME/CFS DNA study underway

    Firstly, amazing congratulations to all involved. Did anybody else have an issue with the sign-up form on the DecodeME website? I filled it out and then it directed me to a different page with exactly the same form on... which I then filled out again, which seemed to work. Not sure if I've...
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    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Tom, I don't disagree with a thing you've said and FTAOD think everything I've seen from you has been very measured. I had seen a couple of comments elsewhere underneath posts from COVID sufferers who still have symptoms immediately jumping to an ME diagnosis. At the moment, so early into the...
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    https://www.ft.com/content/91e4482e-d120-49ab-93e3-d314d99b5336 Mystery of prolonged Covid-19 symptoms adds to unknowns Growing evidence that some sufferers have to endure problems from fatigue to organ pains for six weeks or more When Rachel Pope was diagnosed with suspected coronavirus...
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    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    This is very important. I've been careful in any discussion around 'post-COVID' to point out that post-viral symptoms are self-limiting in the majority of cases, and that experiencing symptoms a few weeks after a serious illness doesn't mean you're about to automatically get ME/CFS. From an...
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    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Told by a (female) GP: ‘no, you’re actually ill, not like those women who just won’t get out of bed’
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    Covidence study

    @rvallee Yes, that is my fear. "People who had the strongest beliefs they were seriously ill had the worst outcomes, thus proving that the belief caused the illness." If one has the sincere belief that long-term effects of illnesses are psychological in nature, it is easy to design a flawed...
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    Covidence study

    New 12,000 participant, five-year study from QMUL on COVID-19: https://www.qmul.ac.uk/covidence/ Some warning signs here...
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    Robert Naviaux' Lab - News - from 2019 onwards

    I find Naviaux's work interesting and worth pursuing, but probably in the DARPA mould of potentially high-impact but low-probability. For example, his work on ASD is innovative, but I note that all papers on purinergic signalling being involved in ASD are from him; no other research group seems...
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    Cell-Based Blood Biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Missailidis et al Feb 2020

    This line jumps out at me, unfortunately: This implies patient samples and control samples were not treated equally. If, say, patient samples traveled further before being frozen that might explain a high lymphocyte death rate upon being unfrozen, might it not? I hope that, upon coming out of...
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    Pathogens associated with triggering ME/CFS - discussion thread

    As somebody whose condition started with a suspected Giardia infection on a business trip to India, I've read the Bergen studies. Worth flagging that the main ones (that I know of) look at 'chronic fatigue' rather than ME/CFS: Irritable bowel syndrome and chronic fatigue 6 years after giardia...
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    Low-dose naltrexone as a treatment for chronic fatigue syndrome, 2020, Bolton, Chapman, Van Marwijk

    I should probably know this, but is there a good outline of the proposed mechanism of action of Naltrexone? I've seen several places where it's suggested it might work in ME/CFS, but I don't recall any explanation of how it's meant to work, beyond vague-ish statements around 'immune system...
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    Reduced heart rate variability predicts fatigue severity in individuals with CFS/ME. Escorihuela et al. 2019

    At the risk of sounding like a BPS proponent here, "it's deconditioning!" seems to be the appropriate response. More symptoms = increase probability of sedentary lifestyle = lower HRV. I don't see anything here that indicates ME/CFS patients have any difference in HRV from somebody who walks...
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    Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers...ME/CFS 2019, Eguchi et al

    Interesting. Looks like their initial result was sufficiently interesting that they recruited a validation cohort, if I’m reading this right.
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    ME Association announces three new research grants, Oct 2019

    My OH develops a lot of materials for charities and I would say the press release is perfectly normal practice. Use of terms like ‘groundbreaking’ and ‘cruel illness’ are designed to catch the eye of editors who receive hundreds of these from all over the place. ‘Modest funding provided that...
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    Slow walking at 45 'a sign of faster ageing'

    Same here - even today (I'm classed mild most of the time) I walk faster than most other people. It's just that if I do more than about half a mile I then suffer for days afterwards.
  16. L

    L-dopa for ME/CFS? Prescribed for a Patient on Twitter

    Yeah, I tend to wince when you get comments whose certainty seems to be inversely proportional to the actual amount of evidence for their claim.
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    L-dopa for ME/CFS? Prescribed for a Patient on Twitter

    Literally no reason to prescribe to ME/CFS patients for their ME/CFS. AFAIK, there has been no mechanism proposed for ME/CFS that indicates L-Dopa as a possible intervention. Avoid.
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    New Scientist: Chronic Lyme disease may be a misdiagnosis of chronic fatigue syndrome

    Putting aside the source, it's not a crazy hypothesis. AFAIK, the symptoms of 'chronic Lyme' and ME/CFS are broadly similar, and the evidence of ongoing infection in 'chronic Lyme' has not been exactly settled. If it is the case (as is my view) that ME/CFS is caused by some ongoing...
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    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    Kind of. The p-value is derived from the measurements we have already taken. So I would rephrase your rephrasing as: Taking a simpler example: I have a coin in my pocket that I think is biased towards coming up heads. The null hypothesis is that it is fair and has an equal probability of...
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    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    Basically, it's the hypothesis that there is no link between the variables being measured. It's quite important in understanding p-values, which IIRC plenty of studies have found that even researchers misunderstand. Say I find that mean measurement of [Chemical A] is higher in the...
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