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  1. Joan
    Post

    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...
    Post by: Joan, Jun 20, 2018 in forum: General ME/CFS news
  2. Joan
    Post

    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...
    Post by: Joan, Jun 8, 2018 in forum: General ME/CFS news
  3. Joan
    Post

    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?
    Post by: Joan, Feb 9, 2018 in forum: Psychosomatic research - ME/CFS and Long Covid
  4. Joan
    Post

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

    Well done Carly. Excellent letter. I have tweeted them about it [MEDIA]
    Post by: Joan, Dec 15, 2017 in forum: Open Letters and Replies
  5. Joan
    Thread

    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?...
    Thread by: Joan, Dec 5, 2017, 1 replies, in forum: Other guidelines
  6. Joan
    Post

    What blood tests would you get?

    Do you mean that all viral testing means nothing or just those ones I mentioned?
    Post by: Joan, Nov 21, 2017 in forum: Laboratory and genetic testing, medical imaging
  7. Joan
    Post

    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...
    Post by: Joan, Nov 21, 2017 in forum: Laboratory and genetic testing, medical imaging
  8. Joan
    Post

    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...
    Post by: Joan, Nov 21, 2017 in forum: Laboratory and genetic testing, medical imaging
  9. Joan
    Post

    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...
    Post by: Joan, Nov 21, 2017 in forum: Laboratory and genetic testing, medical imaging
  10. Joan
    Thread

    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...
    Thread by: Joan, Nov 15, 2017, 39 replies, in forum: Laboratory and genetic testing, medical imaging
  11. Joan
    Post

    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...
    Post by: Joan, Nov 14, 2017 in forum: General ME/CFS news
  12. Joan
    Post

    BMJ best practise

    Just checked out the Recommendations section, which is of course where most people will swing to first .. "Monitoring Chronic fatigue syndrome...
    Post by: Joan, Nov 14, 2017 in forum: General ME/CFS news
  13. Joan
    Post

    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...
    Post by: Joan, Nov 2, 2017 in forum: Home adaptations, mobility and personal care
  14. Joan
    Post

    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...
    Post by: Joan, Nov 2, 2017 in forum: Home adaptations, mobility and personal care
  15. Joan
    Post

    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...
    Post by: Joan, Oct 30, 2017 in forum: General Advocacy Discussions
  16. Joan
    Post

    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...
    Post by: Joan, Oct 29, 2017 in forum: Psychosomatic news - ME/CFS and Long Covid
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