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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. T

    Itaconate Shunt (now called INFa-Itaconate shunt) Part 2!

    Thank you.
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    Itaconate Shunt (now called INFa-Itaconate shunt) Part 2!

    Can you elaborate on what this means please? Thank you so much for your brilliant work.
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    Crawley to spread misinformation about ME to international group of paeds. in Sweden

    It's somewhat ironic that he's Chair of a World Health Organisation expert advisory group...
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    Crawley to spread misinformation about ME to international group of paeds. in Sweden

    Here's another one of the UK-based speakers: Prof Paul Brogan, who leads The Infection, Inflammation and Rheumatology Section at UCL GREAT ORMOND STREET INSTITUTE OF CHILD HEALTH http://www.ucl.ac.uk/ich/research/infection-immunity-inflammation/infection-inflammation-rheumatology...
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    Crawley to spread misinformation about ME to international group of paeds. in Sweden

    I note that University of Hull Professor of Science Communication, Mark Lorch is also presenting at this event. http://www.hull.ac.uk/Faculties/staff-profiles/Professor-Mark-Lorch.aspx https://twitter.com/Mark_Lorch Maybe he would be interested to read DT's blog posts about Prof Crawley's...
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    David Tuller: My brief encounter with Prof Crawley

    Yes. I believe that it would have to be pursued in a UK court, where (in all likelihood) they would also lose, because their arguments are baseless.
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    David Tuller: My brief encounter with Prof Crawley

    These things only have any "force" if they are "enforced" i.e. followed up by legal action. As such, this particular action (if such an action has yet been taken) is pretty meaningless on its own. It's a bluff. An attempt to bully David into silence. Would Bristol subsequently back it up...
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    David Tuller: My brief encounter with Prof Crawley

    Please be careful when making such statements. The "Archives of Disease in Childhood" paper states: Both the Linbury Trust and the Ashden Trust are part of the Sainsbury Family Charitable Trusts http://www.sfct.org.uk/ and, as such, have some very reputable people on their boards of trustees...
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    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    I completely agree with you @Countrygirl However, I would like to add to your list of those whom she has harmed. Firstly, Dr Nigel Speight, who, as I understand it, was unjustly subjected to a witch hunt as a direct result of a complaint she made to the GMC. Then there is David Tuller, whom...
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    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    Oooooo ........ now that is interesting. I'm really looking forward to hearing all about the encounter. No doubt she will (as always) try and spin her version of events to make herself look like the tragic victim of a vicious and unwarranted assault on her "vital" research
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    What are seminal studies in ME research?

    No, I did it with the intention that it should be shared widely and freely, as my way of countering all of the psychosocial bullshit.
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    What are seminal studies in ME research?

    Thank you @ScottTriGuy That cloud location isn't where I posted the document I created, it's a copy - but I don't mind. I post my updates here: https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o and the items highlighted in green are the most recent additions to the list
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    What are seminal studies in ME research?

    It would have been nice to have been credited for all the work I put into producing this.
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    Calcium Lets T Cells Use Sugar to Multiply & Fight Infection

    Not if the route it needs to take in order to get into the cell, either doesn't exist or is blocked.
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    Calcium Lets T Cells Use Sugar to Multiply & Fight Infection

    I came across this thanks to Dr Derya Unutmaz tweeting about work done by his friend and collaborator, Dr Stefan Feske. http://nyulangone.org/press-releases/calcium-lets-t-cells-use-sugar-to-multiply-fight-infection How relevant is this discovery to the work done by Don Staines & Sonya...
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    More from Science Medica Centre on SMILE

    Don't hold your breath @Luther Blissett the SMC don't seem to be in any hurry to publish comments on this article. My comment still hasn't passed moderation over 24 hours after I posted it:
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    Scientists trade insults over ME (JHP special issue)

    The Times article identifies Profs Davey-Smith and Ogden as 2 of the 3 who resigned from the JHP editorial board. Who was the third?
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    Scientists trade insults over ME (JHP special issue)

    He has also demonstrated why it was entirely right to oppose the CMRC's trojan horse MEGA project, within which he appeared to be a leading light. Please take note @charles shepherd
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    PACE-gate ……. More wrongdoings? – PARTICIPANT NUMBERS seemingly just DON’T ADD UP

    Good sleuthing you two. I'm impressed. The problem with lying (especially when you piss off so many intelligent people) is that your lies don't add up and you eventually get found out.
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    Petition: That the ME Association leave the CMRC

    You need to ask yourself why there are so many non-members disagreeing with the MEA's decisions. Perhaps your organisation would have many more members if you didn't do such stupid things as supporting the CMRC
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    Petition: That the ME Association leave the CMRC

    That may be so, but he does a very good job of not demonstrating it. His actions speak louder than his words and so, to seasoned observers, he comes across as a quisling.
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    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Dr Karl Morten (Neurosciences Group, Institute of Molecular Medicine, Department of Clinical Neurology, University of Oxford) is evidently an expert in these matters: Dichloroacetate stabilizes the mutant E1α subunit in pyruvate dehydrogenase deficiency...
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    New type of immune cell discovered in the brain, links with gut

    University of Virginia Health System Press statement (19/12/2016) Unknown soldiers: UVA discovers powerful defenders of the brain http://newsroom.uvahealth.com/about/news-room/archives/unknown-soldiers-uva-discovers-powerful-defenders-of-the-brain
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    FORWARD ME GROUP: Minutes for the meeting held at the House of Lords on December 7th 2016

    @charles shepherd Did you learn anything new at that meeting, or anything which might have persuaded you (one way or the other) that in the present circumstances, Professor Holgate is steering the MEGA project in the right direction? Was there perhaps more significance in what he didn't say?
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    Petition: Opposing MEGA

    To use Prof Holgate's expression, it used to baffle me why the MRC rejected so many researchers bids to investigate biological aspects of ME/cfs and consequently, how their meme, (referencing a lack of quality research proposals), came into existence. Recent comments, together with certain...
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    Petition: Opposing MEGA

    Prof Stephen Holgate's links to the MRC have always concerned me and it now seems that he is not the "honest broker" that he purports to be. He evidently has no interest in the viewpoint of a very well-informed patient community, who ought to have been integral in the design of the MEGA...
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    Petition: Opposing MEGA

    You're missing the point. MEGA is a sinkhole, which will not only swallow up all of the UK funding, but will also provide a convenient tick (indicating job done) for those who need to demonstrate that some research is being undertaken into this disease. As such, it will be a waste of at least...
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    Petition: Opposing MEGA

    I would simply point to the total failure of that approach to date. The CMRC is a lost cause.
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    Petition: Opposing MEGA

    Are you listening @charles shepherd ? Once again, Invest in ME and people like Malcolm Hooper, Margaret Williams and Jonathan Edwards are leading the way and making you look a bit out of step with patient opinion. I think that it's high time that the MEA cast off the shackles of their...
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    Counter petition to the MEGA petition, brainstorming stage

    O.K. point taken. But to some extent it depends on what's in their final written proposal. In the circumstances, it's a perfectly reasonable (distrustful) response to their ham-fisted handling of the situation. There's no knowing what jiggery pokery will go on if they're given free reign to do...