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  1. Jonathan Edwards

    A Systematic Review of Probiotic Interventions for Gastrointestinal Symptoms and Irritable Bowel Syndrome in CFS/ME (2018) Marshall-Gradisnik et al

    That's interesting. So it is easier to sell foods than drugs (at least in terms of safety testing) but maybe harder to make positive claims about them.
  2. Jonathan Edwards

    UK CMRC 2018 Conference Rachel French

    No it was me that was verbose. (post 26 vs 24)
  3. Jonathan Edwards

    "Abnormal illness behaviour" and the missing citations.

    It is easy to see how Freud's ideas of guilt and potty training caught on. I can imagine the psychiatrists having serious repressed feelings of guilt here, which they feel they need to act out by becoming famous psychiatrists in order to please their mothers.
  4. Jonathan Edwards

    UK CMRC 2018 Conference Rachel French

    For me it is not so much an issue of people saying things like this. We all have to learn. What is wrong with that meeting is that nobody senior quietly and subtly points out in questions that the speaker has just made an arsehole of themselves by talking through their trousers.
  5. Jonathan Edwards

    UK CMRC 2018 Conference Rachel French

    I think it is entirely fair to blame speakers for thinking they have a perspective they do not. One of the biggest problems of modern education policy is to encourage youngsters to give talks as if they were experts. That leads on to talking down to patients as if they were experts. And there...
  6. Jonathan Edwards

    UK CMRC 2018 Conference Rachel French

    Fair point. I guess my reasoning was that the only reason to allow juniors to stand up and talk is if they have some new data from their research to present - in which case they should have the chance to communicate it. There is never any reason to ask juniors to get up and give a review of the...
  7. Jonathan Edwards

    "Abnormal illness behaviour" and the missing citations.

    Just to add to the confusion I might mention the use of the term 'illness behaviour' as in currency in accident and emergency departments in the 1970s. I assume this was taken up from Pilowski. However the meaning was quite different. It was entirely defined as a behaviour and as 'behaving ill...
  8. Jonathan Edwards

    A Systematic Review of Probiotic Interventions for Gastrointestinal Symptoms and Irritable Bowel Syndrome in CFS/ME (2018) Marshall-Gradisnik et al

    I have not read the full paper but I would be surprised if the evidence for probiotics being useful in IBS was 'excellent'. I am not sure that a company making a probiotic derived from food sources would have any problem with making claims if it had done trials and had evidence because of an...
  9. Jonathan Edwards

    Concerns about Cochrane

    Interesting that people are still trying to pick up the pieces.
  10. Jonathan Edwards

    UK CMRC 2018 Conference Rachel French

    I gather that CMRC has a patient advisory group. I think it would make sense for that group to feed on systematic patient comment on presentations at meetings. When I was involved in medical scientific meetings it never occurred to me that patients should really be there as well, making sure...
  11. Jonathan Edwards

    UK CMRC 2018 Conference - Prof Stephen Holgate

    My understanding is that the new committee had already been formed. And CMRC cannot be an MRC committee if it is planning grant applications around its committee table. It may turn out to be a productive enterprise but it seems to me to be a way of being rules. Maybe if the rules are bent so...
  12. Jonathan Edwards

    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    I think this is a reasonable question. I find it hard to see how this theory can give the right system dynamics and after all that is what Dr Phair is supposed to focus on. At least the illness should flip into energy shortage and out, if it varies at all. My impression is that ME is not...
  13. Jonathan Edwards

    LP coach on research, Lightning Process and ME (Norway)

    Surely the activity on ME forums is a reflection of the absence of any satisfactory treatment or explanation for the illness? It is statements like that under number four quoted by E12 that show just how bogus these people's arguments are.
  14. Jonathan Edwards

    [Just a registration] Paediatric immune dysregulation disorders - FITNET plus from Elise van de Putte ISRCTN12612526

    There are several similarities to studies we have seen from Esther Crawley. It is interesting that this is a study of juvenile chronic arthritis, which was Crawley's previous area of research. There is the similar use of 'feasibility studies'. I find it very hard o see how this study can make...
  15. Jonathan Edwards

    UK CMRC 2018 Conference Rachel French

    I think I would leave it there. It is a sign of the times that a medical registrar doing an MD should thin that she is able to lecture people about an illness she should realise they know ten times as much about as her. This is to science What Pooh Bear's fluff blown in is to brain tissue.
  16. Jonathan Edwards

    Suggesting an additional advocacy direction

    I think this makes sense once we have a solid finding to be a news focus. The problem with several science stories forming parts of a bigger picture is that at the moment it is not clear that they do form a picture. We want to make sure that message that goes out is the real thing. I think we...
  17. Jonathan Edwards

    Is ME an immunological disease?

    Trouble is, thirty years is a long time ago and if this is the key immunological abnormality in ME why have we heard so little. I agree that one group found something similar, although not actually the same, in the last ten years. But I am aware of four groups who have not found anything. The...
  18. Jonathan Edwards

    Immunoglobulin for chronic fatigue syndrome (CFS/ME): systematic reference list

    This is one of the 7 papers. In fact two of the papers refer to this study.
  19. Jonathan Edwards

    USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

    In essence I agree. But we do not call PEM short sightedness because that means something else. PEM is an observed symptom in standard medical language - feeling like flu after exertion. But neuroimmune exhaustion presumes to give an explanation and I think that is uncalled for. In fact it is...
  20. Jonathan Edwards

    Is ME an immunological disease?

    I think you were the person who called things crap @Inara! Just to get this straight. The lack of reproducibility of the NK findings is nothing to do with lack of money or not having technology or not finding the topic promising. The School of Hygiene, with the best NK unit in the UK thought...
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