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  1. Jonathan Edwards

    Publication bias and the evidence base for CBT/GET for ME

    If you want to look for publication bias you can do it with a clever technical statistical device like a funnel plot if there are enough studies but just looking at how many studies look brilliant is no good. If a treatment is brilliant, like penicillin or TNF inhibitors, then all the trials...
  2. Jonathan Edwards

    Rapid fatigability or a lower amount of available energy - the same thing or different?

    I still think people are muddling up the sense of 'energy' with energy sources as defined in biochemistry. I think these are two completely different meanings of the word. They might have a link but it may be very indirect. If the idea is to explain to healthy pool what ME feels like then the...
  3. Jonathan Edwards

    Rapid fatigability or a lower amount of available energy - the same thing or different?

    I think we have reasonable proof of it in that energy stores basically boil down to combustible organic matter and PWME weigh about the same as normal people. If you have a few millimetres of subcutaneous fat you have some energy stores. I don't think that is what we are interested in though...
  4. Jonathan Edwards

    Rapid fatigability or a lower amount of available energy - the same thing or different?

    What are you meaning by energy, Andy? Strictly speaking the store of energy, chemically, in someone with ME is going to be the same as a normal person. You talk of availability of energy. I see that as meaning two different things. One is the sense of energy not being available - which is very...
  5. Jonathan Edwards

    Iron deficiency and dysregulation

    In isolation not that much. As the authors say there is a problem with blinding because it is easy to tell you are taking iron. Rather like the PACE authors they conveniently avoided asking people if they could tell whether or not they were on treatment. More than half the improvement was seen...
  6. Jonathan Edwards

    Iron deficiency and dysregulation

    I don't think this is a reliable source. It looks like a doctor with a hobby horse.
  7. Jonathan Edwards

    New york Times Article - Why Exercise Can Be So Draining for People With Rheumatoid Arthritis, 2021

    Potentially a very interesting area of study. It is odd that exercise puts your blood pressure up but in doing so makes it go down the rest of the time and does you good! The question I would ask is what is the significance of exercise putting the blood pressure up for longer? Is it more good...
  8. Jonathan Edwards

    New draft NICE guidelines for chronic pain emphasises exercise, CBT and acupuncture over medication

    I think the lack of joined up thinking is directly connected to GRADE, which is a recipe requiring no thinking. Changing the system as whole is too large and amorphous a task I think. But opportunities to make significant changes may present themselves. It would be interesting to know who the...
  9. Jonathan Edwards

    New draft NICE guidelines for chronic pain emphasises exercise, CBT and acupuncture over medication

    It is not clear to me that NICE have a specific political agenda. The main impression I get is of bureaucratisation-but with the possibility of responding to rational arguments - as happened tor ME. A lot depends on key individuals and they may have changed (I think Baker retired). The key...
  10. Jonathan Edwards

    “Pacing does help you get your life back”: The acceptability of a newly developed activity pacing framework for chronic pain/fatigue, 2021, Antcliff

    I could not find any description the actual treatment programme or referent to such a description,although I may have missed it. All we get are platitudes about satisfying MRC criteria and inclusivity and whatnot.
  11. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    But what does 'addressing' achieve? Is there any evidence that they know what to recommend? I don't actually believe that if your respiratory muscles are weak that doing 'exercises' will do anything useful. If those muscles needed to do more they would be told to do so involuntarily by the brain...
  12. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    But if we have no idea how to treat Long Covid surely there is no point in sending people to Lung Physios who want to be kept busy? I cannot think of anything aLung Physio could help with in this situation.
  13. Jonathan Edwards

    Guardian: Long Covid is very far from ‘all in the mind’ – but psychology can still help us treat it - by Carmine M Pariante, April 2021

    Well, that would be drivel - pure psychobabble. Pariente has done some meaningful biological studies but he seems to have no idea in terms of overall theoretical framework. Personalised treatment is bullshit, as we know. I have n'tween the presentation but it is no good being half a scientist.
  14. Jonathan Edwards

    NICE ME/CFS draft guideline - publication dates and delays 2020

    Did you remember to use the e-sanitiser on the nudge. Important not to forget these things just because we have a vaccine!
  15. Jonathan Edwards

    NICE ME/CFS draft guideline - publication dates and delays 2020

    Yes, these are some of the light years away from anything meaningful. For a drug treatment even to get a licence, let alone be recommended by NICE there have to be trials that show a quantifiable relation between some clearly identifiable specific component of treatment and level of benefit -...
  16. Jonathan Edwards

    NICE ME/CFS draft guideline - publication dates and delays 2020

    I am pretty sure that the people who matter on the committee are fully aware of all the nuances. The progress of events is determined to a large extent by the artificial rules, but their artificiality is understood.
  17. Jonathan Edwards

    NICE ME/CFS draft guideline - publication dates and delays 2020

    The reality is that these trials are light years away from anything useful on so many counts. Indirectness is probably the least relevant of these. It comes into GRADE but the remit NICE is to get a valid assessment evidence quality, not to follow some arcane recipe. If people are going to play...
  18. Jonathan Edwards

    Too much salt suppresses phagocytes

    I don't see the sense in this. Phagocytes probably do not work well in a high salt solution but eating more salt does not give you high salt solution in the body - you just pee out more salt each day and the sodium level stays the same. All the stuff about inflammation sounds half-baked.
  19. Jonathan Edwards

    UK - NHS England online tool and clinics for long Covid.

    What in a way I do not understand is why these people are expecting anything at all. As far as we know there is nothing to do but let yourself improve if you are going to. The first mentioned macs and vascular and heart research - but macs probably does not exist and research is something...
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