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  1. Jonathan Edwards

    Can we influence trial and review methodology, eg open-label trials with subjective primary outcomes?

    It might do. But I have now given up offering to review grant applications, unless I think they are really important ME/CFS ones, because I cannot bear the tedium and meaninglessness of wading through pages of stuff about conforming to Helsinki, PIP, diversity, and trying to answer why these...
  2. Jonathan Edwards

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    It would be up to the trialists to ensure safety. Giving patients that sort of information would not be valid 'informing' because they could not be expected to be able to interpret it.
  3. Jonathan Edwards

    Can we influence trial and review methodology, eg open-label trials with subjective primary outcomes?

    The basic problem is that if ethics committees are not applying ethical principles it is either because they do not understand or because they, or their chairman, does not want to understand because it is politically inconvenient. In that situation it will make no difference how many checklists...
  4. Jonathan Edwards

    Can we influence trial and review methodology, eg open-label trials with subjective primary outcomes?

    Do you mean guidelines for trial practice? I am doubtful that any attempt to target protocols and guidelines will have any impact. Protocols and guidelines are inherently flawed, incomplete and bendable. "Because it says so" is never a good argument. I think it is much better just to lay out the...
  5. Jonathan Edwards

    Can we influence trial and review methodology, eg open-label trials with subjective primary outcomes?

    I like this idea too. It might seem a bit technical but, as several members have said, once you get your head around the reasons they aren't too difficult to follow. I think it would be good to have on display a simple explanation of why so many trials are uninterpretable, written for the...
  6. Jonathan Edwards

    Stat News: NIH must address the twin crises of long Covid and ME/CFS — together

    I agree. The whole thing is underwhelming. 'High profile' biomedical science seems increasingly just to be re-arranging the verbal deckchairs on a ship whose crew don't really know where they are supposed to be going. Lipkin's group provided some useful negative findings on viruses and...
  7. Jonathan Edwards

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    There is a legal requirement to obtain informed consent and that requires adequate information. How you read that may be less clear but participants should be pushing for meaningful information which would of course include the nature of the drug and the evidence base for trialling it.
  8. Jonathan Edwards

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    This looks very paternalistic (maternalistic?). I would want at least some indication of what the 'treatment' is and why it is thought to be promising. Judging by the other thread material referred to this looks like a non-starter.
  9. Jonathan Edwards

    Long Non Coding RNAs and pain

    No it wasn't in any way validated. They already knew what the gene defect was in humans and knocked it out in rats. So the model was not to prove a mechanism but to see how a known mechanism operates. There was a very interesting finding. With one gene defect the people with no pain scratched...
  10. Jonathan Edwards

    Long Non Coding RNAs and pain

    For immunofluorescent experiments you really need to line up a set of test samples from patients and a set of control samples and stain them all in the same 'run' - i.e. at the same time on a certain day - because the quality of the reagent may change with lab temperature or time in the fridge...
  11. Jonathan Edwards

    Long Non Coding RNAs and pain

    Involvement of these genes does not make DecodeME any more or less likely to find something. DecodeME will only pick out genetic predispositions. It will not pick out shifts in gene expression later in life - but that applies to any acquired disease. If LNCRNAs were involved in pain perception...
  12. Jonathan Edwards

    Long Non Coding RNAs and pain

    It is not just redundant but meaningless. The term used is visual perception. As for auditory perception. Or pain perception. Science is about getting the right answer, not about theories being 'worrisome' (for whatever reason). Only the right answer will lead to successful treatment.
  13. Jonathan Edwards

    Long Non Coding RNAs and pain

    I was not referring to the perception of fatigue and pain but the processes of fatigue and pain perception (or the processes via which fatigue and pain are generated), which will be a complex multistep affair involving receptors, nerve fibres, nerve cell bodies, synapses, more nerve fibres, more...
  14. Jonathan Edwards

    Long Non Coding RNAs and pain

    What they do with the lab rats is get them dead, take out the dorsal root ganglia and do immunofluorescence on tissue sections! One could conceivably do that with an ME/CFS 'PM tissue bank' but getting standardisation with controls would be a nightmare. Yes, that is the claim this group is...
  15. Jonathan Edwards

    Long Non Coding RNAs and pain

    I think it would be a good candidate.
  16. Jonathan Edwards

    Long Non Coding RNAs and pain

    I heard a talk today about people who cannot feel pain. Some of them have genetic defects in genes that do not produce proteins but produce Long Non Coding RNAs. These seem very interesting. A gene 'normally' is a piece of DNA that can be copied to RNA which is then read off by a ribosome to...
  17. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    We have very long threads discussing all of this @Sasha. You probably switched off for those. Cochrane was set up by a group of physicians who were worried about medicine being taken over by high tech Pharma as far as we can work out. That was a reasonable concern because big Pharma were...
  18. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    But it is a step forward to know the reality - and to be able tell everyone else about it.
  19. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    They are 'Cochrane'. The Editor in Chief was appointed by them. Their mission is to encourage therapies manageable in primary care.
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