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  1. R

    On line ‘survey’ re UK CFS/ME specialist services

    What an apparently devious and deceitful survey – in keeping with everything we’ve come to expect from the PACE authors and their supporters. It would be interesting to know where/how it is being promoted. I hope that the charities will bring this survey to the attention of their members and...
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    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    As far as I’m aware there are no papers published on @RDP ’s metabolic trap theory yet, but your summary is consistent with my understanding of what has been said. (Although I note that Dr Phair has said that he did not apply a Bonferroni correction when analysing the data.) I would be very...
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    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    Many thanks for taking the time to answer my questions @RDP. Very helpful, although it will take me some time to digest your responses. In the meantime, one more thing that puzzles me is this: @Chris Ponting (or @Simon M) can you confirm whether or not a GWAS would be capable of revealing the...
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    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    I’ve been very slow to catch up with this thread but I have some questions for @RDP or anyone else who might be able to answer. My understanding is that the Metabolic Trap Theory predicts a stable (rather than progressive) illness state, which appears to be consistent with most (but not all)...
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    Suggest a name for Chris Ponting's ME GWAS project!

    Echoing my comment on the the other thread (about being fed up with annoying acronyms like MEGA, PACE etc.) and taking @Simon M ‘s comments into consideration (about the need to make it clearer to more people what it’s about) I would suggest something like The ME/CFS Genome Study. Or perhaps The...
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    Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS (Simon McG blog)

    Thanks for taking the time to reply, Chris – and for all your work on this. Can you shed any light on whether/how GWAS could help if it transpired that ME was caused by a pathogen, as I asked above? My limited understanding is that it would help if ME was triggered by a pathogen in genetically...
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    Baroness Blackwood faints in the House of Lords- formerly diagnosed with cfs/ME, now EDS

    I do not wish to be too harsh on Baroness Blackwood, but I was disappointed that she saw fit to sign this (standardised) letter from the DHSC. I'm not sure there is anything to be gained by criticising the Baroness on social media but I am hopeful that people like Charles, Margaret Mar, Carol...
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    JAMA -"Advances in understanding the Pathophysiology of Chronic Fatigue Syndrome" by Anthony Komaroff

    What do you think you/we could do that we are not already doing to try to attract more of the right sort of brains to take an interest in trying to crack this problem? Clearly all the ongoing efforts to expose the BPS falsehoods are helping, as are efforts to try to improve the accuracy and...
  9. R

    Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases, 2019, McGregor et al

    I’ve not managed to read this in detail or keep up with everything but does the suggestion that PEM is associated with hypermetabolism contradict Naviaux’s theory that ME/CFS may be associated with a hypometabolic state? (https://www.pnas.org/content/113/37/E5472) Where are we at with Naviaux’s...
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    Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS (Simon McG blog)

    Thanks again for answering all these questions, Simon. This is very interesting and not something I had appreciated or understand. If GWAS had been available before the discovery of, say, HIV, how would GWAS have helped to identify it? My understanding is that, with a tiny number of exceptions...
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    Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS (Simon McG blog)

    Presumably another possibility would be that ME/CFS is one illness with a common causal pathway but that there are no significant predisposing genetic factors – ie some type of as yet unidentified pathogen. (Or that this may be the case for a subgroup.) Whatever the truth, it would seem that the...
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    Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS (Simon McG blog)

    Many thanks for another excellent article @Simon M. I’m not well enough to read all the replies at the moment so apologies is this point has already been made. My only concern about the proposed study (which is the same point I made in response to MEGA) is about the number of samples that would...
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    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    In response to Jeff, Jen and Mattie, I echo what others have said. We must not conflate scepticism about the science with hostility towards individuals. Neither must we conflate scepticism about the science with scepticism about individuals’ experiences. I am puzzled by the science but I do not...
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    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    That is the sort of improbable scenario I was trying to imagine in this post: To me, it seems possible that anything which is capable of aggravating symptoms is also capable or perpetuating them. However, if the improbable scenario Jonathan considers above were true, the question would still...
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    Was Stephen Hawking’s Illness Psychosomatic? (No)

    I wish this paper had been published while Prof Hawking was still alive. It might have made him think twice about accepting an invitation to appear on stage at the RSM next to the person who has played a lead role in promoting and popularising such unhelpful ideas for the past three [edit, typo]...
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    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Jonathan, however implausible, can you conceive of any possible way in which CCI could cause ME symptoms in some people without it having been noticed by those specialising in CCI? As I don’t know enough about anatomy or medicine, I’m trying to think about this from a purely logical...
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    Jen Brea: My ME is in remission

    The finding could also mean that there is a sub-set of people with ME who have specific symptoms which others do not have (eg worsening of symptoms when turning head) who have CCI. Based on what I’ve read, both before and since Jen’s surgery, I will not be seeking testing for CCI at this time...
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    Jen Brea: My ME is in remission

    I’ve now read Jen’s blog and I thought it was well written. She says a lot of the sort of things that I have imagined I might say if I was ever recovered – differentiating between feeling well but exhausted and deconditioned, and the awful feeling of having ME and PEM. It makes such a nonsense...
  19. R

    Jen Brea: My ME is in remission

    First, great news for Jen. Let’s hope her remission is permanent. I have often dreamt of what she must now be experiencing, and it must be wonderful – albeit with the apprehension of not knowing whether her symptoms will return. After 27 years of severe ME, the prospect of ever returning to...
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