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  1. Joan

    Invest in ME: Status of Research, Treatment and Perception of Myalgic Encephalomyelitis 2018

    A very comprehensive submission indeed. It revisits the Chief Medical Officers report of 2002 and goes through each recommendation and provides a current update on that recommendation. It outlines unequivocally the failings of the UK establishment when it comes to people with ME. It pulls no...
  2. Joan

    Briefing paper for parliamentary debate.

    I feel the need to say that I completely understand why IiME would not put their name to this document. Any document about ME that has a recommendation stating: “Recognize that ME is primarily biological, not psychological, in line with a growing international consensus” is not something I...
  3. Joan

    PACE trial data

    Just a thought. Is anyone in a position to get this information to that MP who has organized the PACE trial debate in the UK Parliament next week?
  4. Joan

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

    Well done Carly. Excellent letter. I have tweeted them about it
  5. Joan

    2017 Peadiatric Primer for MECFS - looking for analysis

    Does anyone know if there has been any analysis/critique (esp Patient analysis) done of this 2017 Paediatric Primer? https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full
  6. Joan

    What blood tests would you get?

    Do you mean that all viral testing means nothing or just those ones I mentioned?
  7. Joan

    What blood tests would you get?

    Thanks for the reply Squeezy. He got tested for tick borne stuff with Armin and it was all negative. He got his NK cells tested as well and they were very low. He's been on Multi Messenger since to bring these back up and I'd love to see if they have worked (he is feeling somewhat better than he...
  8. Joan

    What blood tests would you get?

    Thanks Samuel. He had some viral testing with Armin Labs and he has active CMV, HHV6, Coxsackie A and B viruses but yet has never been offered any anti virals here. Very frustrating. I might redo those tests as that was two years ago. And yes I fully agree - I would love to know what a thorough...
  9. Joan

    What blood tests would you get?

    Thanks a million for the response. He has had some of the basics but no minerals or vitamins as far as I know. He hasnt had cortisol or DHEA levels or thyroid hormones so thats good advice. They actually discovered last year he had H. Pylori while performing an endoscopy so he was treated for...
  10. Joan

    What blood tests would you get?

    Im looking for some advice please. If you had an opportunity to get specialist blood tests carried out what ones would you suggest? My young lad is 17, formally diagnosed with M.E. by Dr. Nigel Speight in 2014 but ill since 2012. As he moves forward into adulthood and into our adult health...
  11. Joan

    BMJ best practise

    Seems like it. Its peppered with that kind of stuff. On the one hand suggesting this and that test and then on the other deferring to mental health responses. My head is spinning trying to pin it down
  12. Joan

    BMJ best practise

    Just checked out the Recommendations section, which is of course where most people will swing to first .. "Monitoring Chronic fatigue syndrome (CFS) is a chronic medical condition, with a waxing and waning of symptoms and impairments. Long-term management with a single primary care physician...
  13. Joan

    How to find a lightweight duvet?

    Ah I see now what you mean... I will be buying a new one any day soon and its only wrapped in a plastic wrapper so its easy to weigh. I'll weigh it when I get home and let you know :)
  14. Joan

    How to find a lightweight duvet?

    Not sure if this will help as its not a two parter, but I buy a 4.5 tog duvet regularly in Argos for my young lad. He cant bear much weight on him and he cant even use a duvet cover so with the result we buy replacement ones very regularly! They are really light and the fabric tears away easily...
  15. Joan

    Thunderclap on Thursday re TEDX Bristol

    I completely agree. I don't think it's a good idea to use a Thunderclap re one research source in this way. Supporting good science from whatever source is what should be said. This will be a missed opportunity
  16. Joan

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    Might be an idea to send TedXBristol a copy of the ME Action PACE petition and the OMEGA petition as evidence that her narrative of a small vocal minority objecting to her and her beliefs is untrue
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