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  1. Jonathan Edwards

    Rituximab and placebo response

    Yes that was the conclusion I put in my report to NICE. And not very surprising I would have thought. If CBT had been delivered universally by people with great charisma it might have done better. There was I think an interesting comparison of CBT at King's and in Holland that suggested that UK...
  2. Jonathan Edwards

    Rituximab and placebo response

    The trouble is that I don't think there is any way to validate that distinction. There is no 'god's eye view' of how healthy someone actually is in a condition characterised only by symptomatology. I actually think it doesn't really matter for the discussion, which as I see it is about how we...
  3. Jonathan Edwards

    Rituximab and placebo response

    I think we have to take into account the fact that with repeated rituximab infusions a number of patients had saw tooth 'response' charts coinciding with the theorised period of benefit of about 6 months corresponding to the period of B cell depletion. The likelihood of chance correlation looked...
  4. Jonathan Edwards

    Rituximab and placebo response

    I don't follow that. If they thought they were better, and that this was due to a drug, then that counts as a placebo effect, doesn't it? I would use 'reporting bias' to cover other sorts of effects, like wanting to please the investigators.
  5. Jonathan Edwards

    Rituximab and placebo response

    Reporting bias is theoretically possible but having looked at the data I find it very hard to believe that in these cases people did not think they were having a very significant response to the drug. Known placebo responses may be limited but I don't think that means we know they are always...
  6. Jonathan Edwards

    Rituximab and placebo response

    I can only be a genuine ally of PWME if I stick to the truth and all possibilities that need exploring. Medical science does not allow us to pick and choose the truth. The truth comes out as what it is. What the psychiatric fraternity use most powerfully as ammunition is the claim that PWME do...
  7. Jonathan Edwards

    Rituximab and placebo response

    How can anyone tell? If we have strongly suggestive evidence of a long lasting placebo response in some cases then it has to be on the cards.
  8. Jonathan Edwards

    Cortisol levels in Chronic Fatigue Syndrome and atypical depression measured using hair and saliva specimens, 2020, Cleare/Chalder/others

    That seems very reasonable to me. If the person's strategy for managing their illness includes not doing things that require sudden changes in activity or diurnal schedule (i.e. not getting up for a 6 o clock flight or pollarding a tree or swatting for an exam or hiking in freezing conditions)...
  9. Jonathan Edwards

    Rituximab and placebo response

    The problem is that in the open label follow on study with rituximab people repeatedly showed major improvement in a time frame that matched expectations of how long the drug's effect would last. Then it became clear that in fact this was a placebo response. I don't know if altimetry or step...
  10. Jonathan Edwards

    Rituximab and placebo response

    I don't think it is anything like as simple as that. For some, yes, but you have to remember that trials are carried out on people at all stages of going in and out of bad phases of an illness. And we have no way of knowing whether in fact there is not a subgroup who are highly...
  11. Jonathan Edwards

    Cortisol levels in Chronic Fatigue Syndrome and atypical depression measured using hair and saliva specimens, 2020, Cleare/Chalder/others

    As far as I can see the results show that their measures do not measure what they thought they measured. Hair levels were supposed to be the average over the short term levels, indicated by saliva. They weren't, so it looks as if their assumptions about interpretation were wrong. There is...
  12. Jonathan Edwards

    Research news from Bhupesh Prusty

    I am sceptical of that approach. We have not so far ever known that mitochondrial function is affected in ME. It is a speculation that is quite difficult to marry with the clinical picture. And if you fail to find something you cannot really just say, oh we did not need to find it anyway for...
  13. Jonathan Edwards

    Research news from Bhupesh Prusty

    I had assumed that he was just talking about some soluble or suspendible factor of the sort that has been proposed to explain previous results with ME plasma affecting normal cells. (Maybe a protein or cell fragment.)
  14. Jonathan Edwards

    Rituximab and placebo response

    The problem is that for CCI we do not even have controls, so it makes no difference whether measures are objective or subjective. Moreover, in this context step counts are subjective measures. Placebos are very likely to be able to improve step counts. What they do not improve are things like...
  15. Jonathan Edwards

    Research news from Bhupesh Prusty

    That would be an autopsy, but basically yes, biopsies of living brain are only justified if you have very good reason to think that you have encephalitis or tumour in a potentially dispensable area. Effectively that means you need gross neurological signs on physical examination suggesting that...
  16. Jonathan Edwards

    Brexit is happening: what does it mean for science?

    The situation is complicated. I think I would probably have turned down the great majority of applications for ME research, just as the funding bodies did. So maybe if good projects are put forward they will get funding - partly because ME is designate as a priority area in the UK. But there are...
  17. Jonathan Edwards

    Investigation into cognitive behavioural therapy for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, 2020, Clark

    As I see it CBT implies a process that draws on a theory of how 'cognition' and behaviour relate causally. From what I have seen all such theories in clinical psychology that claim to go beyond common sense and compassion are more likely to be wrong and damaging than right and useful. What...
  18. Jonathan Edwards

    Brexit is happening: what does it mean for science?

    So much so that they are laying off senior staff like there's no tomorrow. The problem is not that too much money is going to biomedical research but that it is going to people interested in furthering personal ambition and not in getting the right answer to a scientific question. How you...
  19. Jonathan Edwards

    Brexit is happening: what does it mean for science?

    That looks to me like a clear case of sour grapes. Not a single argument is produced to support the case - other than that those other meanies have lots of money.
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