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  1. 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...
  2. 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.
  3. 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...
  4. 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.
  5. 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...
  6. 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...
  7. 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.
  8. 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...
  9. 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...
  10. Jonathan Edwards

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

    None of the reviews are actually of IVIG in ME. They are general reviews of ME treatment or of use of IVIG. Hardly surprising that there are eight in all I guess.
  11. Jonathan Edwards

    Immunosignature Analysis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (2018) Fluge et al.

    I assume that they have 256 different peptide molecules, a tiny dab of each of which is put on to a different pin or well in an array.The patient's serum is then added and the pattern of antibody binding to the 256 pins (wells) is visualised using a fluorescent or otherwise tagged developer...
  12. Jonathan Edwards

    Ben Goldacre: Building RCTs into GP practice

    No you cannot offer people the option of consent, because that would take too long. He is making the point that there is no ethical reason not to randomise rather than do what doctors do now - pick what they fancy, so no need to ask for consent. There is also the problem of knowing you are being...
  13. Jonathan Edwards

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

    I am not quite sure what point you are making with your first sentence Inara. Some ME research is very good - especially the stuff with bona fide negative results like the phase 3 rituximab trial. My reason for criticising IC primer was exactly what you say in your second sentence. The problem...
  14. Jonathan Edwards

    Ben Goldacre: Building RCTs into GP practice

    The basic idea that people should be randomised to different options during standard health care makes some sense. But there has to be a prospect of actually achieving your objective. Gold acre uses the example of not knowing which drug to choose for diabetes. That is either because they are...
  15. Jonathan Edwards

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

    I have in the past paid relatively little attention to the ICC criteria and the IC primer document because they did not seem particularly relevant to research coming through. I had a look last night at the IC primer. I think this is a very problematic document. It does not read like an...
  16. Jonathan Edwards

    Is ME an immunological disease?

    I think there is a publication bias problem here. Moreover, the story has been pretty unstable from the start. I gather it was suggested that NK numbers were down. Then that got changed to numbers being normal but function tests giving low readings. The some people have suggested it is a...
  17. Jonathan Edwards

    Is ME an immunological disease?

    Hm, that looks pretty thin. Recently the CureMe team at London School of Hygiene working with the best basic NK research unit in the UK failed to find anything of note in NK cells in ME. This is personal communication but I think public knowledge. This did not surprise me since other groups...
  18. Jonathan Edwards

    Is ME an immunological disease?

    Do they say what? It is not clear to me what they would be referring to. I worry that people who are not familiar with the complexities of the immune system will accept that there is 'sufficient evidence' just on numbers of papers and we need something more concrete than that.
  19. Jonathan Edwards

    David Tuller: Trial By Error: My Latest Letter to Archives of Disease in Childhood

    I think even the Queen referred to 'dark forces' at one point.
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