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

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

    Dear @Colleen Steckel, I am not sure I can put it better than @strategist does: It appears that you are interpreting this as a failure by the IOM report to acknowledge the reality of ME (because you're not familiar with reviewing and interpreting scientific evidence). For a condition like...
  12. Jonathan Edwards

    Is ME an immunological disease?

    Dear @Colleen Steckel, I am not sure I can put it better than @strategist does: It appears that you are interpreting this as a failure by the IOM report to acknowledge the reality of ME (because you're not familiar with reviewing and interpreting scientific evidence). For a condition like...
  13. Jonathan Edwards

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

    None of the brain studies we have so far has been satisfactorily replicated and a number of them are pointing in opposite directions (reduced blood flow vs cell activation for instance). Even if one took all these studies at face value it would be impossible to make any consistent sense of what...
  14. Jonathan Edwards

    UK CMRC 2018 Conference held September 19 & 20 at Bristol

    I have not watched but I suspect it is more on target. But I would not rule out my asking some pretty annoying questions there too. Like why don't your graphs have proper legends for the axes and variance indicators! Where was that methods slide...
  15. Jonathan Edwards

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

    Cognitive dysfunction, sensitivity to light and sound principally. Being a disorder of the nervous system does not exclude qualifying for another category. MS is a disorder of the nervous system and an immunological disorder for instance. One could argue that it is not clear that anatomically...
  16. Jonathan Edwards

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

    That was very much my feeling.
  17. Jonathan Edwards

    Is ME an immunological disease?

    I discuss the detailed situation with immune abnormalities in ME with Jo Cambridge in the lab on a more or less weekly basis. None of these findings has held up so far. There are some new findings in MAIT cells and B cells that again need replicating but the ones in the literature have failed to...
  18. Jonathan Edwards

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

    A disorder of the nervous system does not have to have brain inflammation. There are lots of disorders of the nervous system without inflammation. Most of them have some other identifiable pathology but that is irrelevant. We know ME is a disorder of the nervous system because of the symptoms...
  19. Jonathan Edwards

    UK CMRC 2018 Conference held September 19 & 20 at Bristol

    I thought this year that maybe I should let CMRC heal its wounds and spare them my annoying questions. But next year ... The level needs to go up two gears on the left handlebar and then another two on the right. People who speak drivel should leave the podium shaking in their boots. That was...
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