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  1. Jonathan Edwards

    PACE trial TSC and TMG minutes released

    Thanks @Lucibee, I would be interested too. I have lost track of the thread on this. Are we talking about the step test in PACE? I have even lost track of which study we are in! Four sentences either from you or one of the others to get the rest of us get our heads around the punch line here...
  2. Jonathan Edwards

    BC Women's Hospital with info-film on ME/CFS

    I wonder what sort of institution has produced this. I is very polished but completely unbalanced in its content. There may be a problem with mitochondria but it is far from clear.
  3. Jonathan Edwards

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    I think the diabetes situation is a bit different. In the 1970s urine sugar tests were the only practical ones and there was not enough science to show that more accurate measurements made a difference. With electronic technology for home blood measurements and evidence of the importance of...
  4. Jonathan Edwards

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    Yes, we have plan A and plan B and plan C. More plans are welcome but I think various people are doing what they can and there are a few cards up sleeves. The pivotal event will be the late May stakeholder meeting. If things do not show signs of moving in the right direction then there may be a...
  5. Jonathan Edwards

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    Yes. You may not be aware of the practical issues at the moment @Mfairma. Over the next few months the process of redrafting UK NICE guidelines will become set in stone with appointment of the committee members. At the moment we have dialogue with NICE through stakeholder meetings. If NICE staff...
  6. Jonathan Edwards

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    I think it has become clear that Vogt is just a sick man who has become a quack, like the other Lightning people. Nobody in the medical establishment will take any notice of him. He might actually further the patients' cause by being such an idiot. I think he can be ignored completely.
  7. Jonathan Edwards

    United Kingdom: Science Media Centre (including Fiona Fox)

    I realised that this bit is actually correct: CFS/ME is highly controversial with longstanding disagreements between the mainstream medical community and campaigners about its cause and treatment. Note that the campaigners are the BPS crowd.
  8. Jonathan Edwards

    ME and MS show remarkable levels of similarity in phenomenology and neuroimmune characteristics

    Yes, I understand the specifics @adambeyoncelowe. This review is just plain wrong. As I understand it Morris is a patient with some science experience who teamed up with Maes whose immunology is based on very old and muddled themes without any convincing evidence. This is a bit like an...
  9. Jonathan Edwards

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen. Now that is pure bullshit. Another one for the notebook.
  10. Jonathan Edwards

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    The problem is that if you look at the data in detail, @Gingergrrl, there is no evidence for any such group. We may be led to think that there is but if there was then the original data from the phase 2 rituximab study would have looked different. Immunology is at least as complicated as working...
  11. Jonathan Edwards

    Forward ME Group – Bodily Stress Syndrome

    This is all infuriating but I have a slight feeling that if these people go on changing names much longer they will talk themselves up their own backsides and their scheme will backfire. I suspect the political forces will do what they are going to do whatever the names are and if name changing...
  12. Jonathan Edwards

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    I agree with the others. Lloyd is using a central sensitisation approach. There are animal experiments that might give some credence to that but I am not over enamoured of animal experiments. The real problem, as everyone is pointing out is that desensitisation with stimulus seems to be totally...
  13. Jonathan Edwards

    PACE trial TSC and TMG minutes released

    I think they were mostly cashmere (goat) or angora (rabbit)
  14. Jonathan Edwards

    Updates from the UK ME/CFS Biobank / CureME team

    You can never control journalists themselves but I don't think this has anything to do with SMC. The input is from Biobank people and others very aware of the SMC problem. (I know little about it myself but know who is involved.)
  15. Jonathan Edwards

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    I agree, this is the puzzle. Maybe all of us apportion our intellectual powers unevenly. But sometimes it is surprising.
  16. Jonathan Edwards

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    In theory I agree. In practice I don't think that would have worked. Everyone here is playing a role in a social game. Lloyd has chosen to play a certain role and he is not stupid enough to let his costume slip. As far as I can see David gave him plenty of space to explain why his stance does...
  17. Jonathan Edwards

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    I rate Lloyd high partly because of the Dubbo study and also other studies he did in the 1980s and early 1990s. But more specifically I rate him highly because I have heard him present and he does it in a way that only about 10% of senior scientists do: in a way that shows that he understands...
  18. Jonathan Edwards

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    As I say, I think you have misunderstood science @Bill. It is very much about pointing out where others are bullshitting. In an all-comers forum that has to be said in plain English rather than code words and that is a very good thing because within science itself it goes on behind closed doors...
  19. Jonathan Edwards

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    I can see your original point, @Bill, but what David is doing is getting at the science. To me this is exactly what a science forum is about. Science is not mostly about measuring things and writing down numbers. It is about constructing complicated ideas and trying to find ways that genuinely...
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