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  1. Sly Saint

    NICE are looking for a chair for the ME/CFS guideline committee

    Would John Bercow be excluded (as Patron of MEA) ? Hopefully Charles Shepherd has put out some feelers.........?
  2. Sly Saint

    NICE are looking for a chair for the ME/CFS guideline committee

    I emailed David Marks to ask for his help: eta: he's pinned it
  3. Sly Saint

    Esther Crawley's presentations (excluding the 2017 TEDx talk)

    Is anything EC does? Apart from slag us off that is.
  4. Sly Saint

    EBV, Glandular fever (infectious mononucleosis)

    Serological profiling of the EBV immune response in Chronic Fatigue Syndrome using a peptide microarray Madlen Loebel, Maren Eckey, Franziska Sotzny, Elisabeth Hahn, Sandra Bauer, Patricia Grabowski, Johannes Zerweck, Pavlo Holenya, Leif G. Hanitsch, Kirsten Wittke, Peter Borchmann...
  5. Sly Saint

    Esther Crawley's presentations (excluding the 2017 TEDx talk)

    "Meet the Professor Sessions Meet the Professor Sessions will be held on Wednesday, May 30 and Thursday, May 31 between 07:00 and 07:50. There is no need to register for these sessions. If the room is full you may need to choose to attend a different session. " "Participants are encouraged to...
  6. Sly Saint

    EBV, Glandular fever (infectious mononucleosis)

    As it seems a lot of people go on to develop ME following a virus (children in partic seem particularly susceptible after mono,EBV), I thought I'd take a look at the NICE guidelines for EBV. " Management How should I manage a person with suspected or confirmed glandular fever? Give information...
  7. Sly Saint

    Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

    Don't know if this has been posted and am loath to give it its own thread basically advertising the Lightning process. " After a lifetime of calamity and chronic anxiety, Liz Jones enrolled on a course that claims to use neuroscience to reprogramme the brain and heal the body"...
  8. Sly Saint

    Womans hour 1st Jan 2018 -being 18 in 2018

    The programme will feature Cerys who was diagnosed with M.E. and describes how the illness has impacted her life. not listened to it yet: http://www.bbc.co.uk/programmes/b09k0n8y eta: I got this from the MEA twitter; from what I've just heard the girl has not actually been diagnosed with ME...
  9. Sly Saint

    Elevated brain natriuretic peptide levels in chronic fatigue syndrome associate with cardiac dysfunction: a case control study, 2018, Newton et al

    Elevated brain natriuretic peptide levels in chronic fatigue syndrome associate with cardiac dysfunction: a case control study Cara Tomas,1Andreas Finkelmeyer,1,2Tim Hodgson,2Laura MacLachlan,1Guy A MacGowan, 1,3Andrew M Blamire,1,2Julia L Newton1,4...
  10. Sly Saint

    OMF/Ron Davis Research Update December 2017

    Cort Johnsons article: " Urgency: Ron Davis and His (Non-NIH Funded) ME/CFS Collaborative Research Center Urgency Those ten NIH research center proposals contained a hidden gift. Of the ten grant applications, seven failed, leaving at least 21 potential individual research grant applications...
  11. Sly Saint

    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    Could someone tweet the link to Voices from the Shadows.............. http://voicesfromtheshadowsfilm.co.uk/ maybe if they see the reality of the harm they are helping to perpetuate?
  12. Sly Saint

    Who is Simon Wessely?

    Old stuff (ie from March 2017 Standing up for Science 'debate') but I thought important to have over here:
  13. Sly Saint

    Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

    “I don’t want to come down like a ton of bricks on Esther Crawley because I think she’s doing her best,” Really? Although not recent, this highlights the totally inaccuracy of ECs 'claims': http://voicesfromtheshadowsfilm.co.uk/news-2/ "One of my friends has a daughter who is ill with severe...
  14. Sly Saint

    Pain poll

    I thought PEM might cause a few probs on this issue (see my first post); as @Invisible Woman said, I realise it can be complicated. Maybe another poll on what is experienced as part of PEM(?) The problem here is what one person considers nerve pain may be different to someone else......eg...
  15. Sly Saint

    Blog: Ms Magazine, "Pain and Prejudice" by Julie Rehmeyer

    When I first read this a couple of days ago (without knowing who wrote it) my first reaction was that it was heavily influenced by 'Unrest'. The line "My brain itself wasn’t functioning so well either. It felt swollen, as if it were trying to push out my eyeballs" is almost exactly what Jen said...
  16. Sly Saint

    Pain poll

    As pain is currently optional on the NICE guidelines I was just wondering what sort of percentages experience pain as an ongoing symptom. The pain should be only attributable (as far as is possible to know) to ME, ie not another existing medical condition. Where it might get tricky is if you...
  17. Sly Saint

    Coyne and Michael Sharpe on Twitter

  18. Sly Saint

    BABCP - British Ass for Behavioural and Cognitive Psychotherapies

    http://www.babcpconference.com/information/information_2017.htm http://www.babcpconference.com/programme/keynotes_2017.htm " Kate Rimes, King's College London Chronic fatigue syndrome: Emotional processing and stress vulnerability Chronic fatigue syndrome (CFS, also known as ‘ME’) is...
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