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  1. JaneL

    A proposal for ME Action: a commitment to evidence-based medicine

    Thank you @Michiel Tack for your work on this. Please add my name to the list. Snowflake - ME patient since 2005 and member of S4ME
  2. JaneL

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    https://www.drmyhill.co.uk/wiki/Response_to_the_paper_%27Assessing_cellular_energy_dysfunction_in_CFS/ME_using_a_commercially_available_laboratory_test%27_by_Cara_Tomas_et_al
  3. JaneL

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    The following is an extract from Dr Myhill’s book “Diagnosis and Treatment of Chronic Fatigue Syndrome” (page 44): (My bolding) So I don’t think Dr Myhill’s statement that “the test was never marketed as a diagnostic test for CFS/ME” is entirely accurate...
  4. JaneL

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    I can’t see how the problems with storage and sample time could account for the strong correlation between the degree of mitochondrial dysfunction and illness severity. I only quickly scanned the new paper so I might have missed something but I didn’t see that they have addressed this point...
  5. JaneL

    ME/CFS services in the United Kingdom

    They are recommending graded activity, goal setting and exercise as management strategies for ME/CFS. So the booklet does not seem all that neutral or uncontroversial to me...?
  6. JaneL

    The PACE trial video series by A Broken Battery

    Thank you @Adam pwme for all your hard work in making these videos. They really are exceptionally good.
  7. JaneL

    UK petition for teacher education

    Signed Did you check your junk email folder? That’s where I found my confirmation email.
  8. JaneL

    A Life Hidden - Blog posts by Naomi Whittingham

    I’m so pleased you were able to manage this trip to the seaside @Naomi10 and enjoy the beautiful open landscape. I found it quite moving to read your article and see the photo of you sitting at the top of the cliff looking out to sea. Thank you for sharing your experience, the joy and the...
  9. JaneL

    Building an evidence base for management of severe ME (including sleep management)

    Well I don’t know if it is common practice but it’s certainly not the correct practice according NICE’s own principles as set out in the document “SOCIAL VALUE JUDGEMENTS: Principles for the development of NICE guidance”. This from page 16: My bold...
  10. JaneL

    Building an evidence base for management of severe ME (including sleep management)

    It’s interesting to note that the current NICE guidelines for insomnia recommend sleep hygiene although they do acknowledge that there is insufficient evidence for its efficacy: https://cks.nice.org.uk/insomnia#!scenarioRecommendation:3 Is it standard practice for NICE to recommend treatments...
  11. JaneL

    Need some input for a #MillionsMissing event in Beaverton, OR

    Thanks so much @ahimsa for organising this small Millions Missing event at your local library in Oregon! It sounds like you are doing a great job with the organising and I’m sure it will all come together on the day. Unfortunately I’m not well enough to attend any Millions Missing events but I...
  12. JaneL

    David Tuller crowdfund: Trial By Error: Reporting on ME/CFS and Related Controversies

    We shouldn’t stop just because the target has been reached, there are still 15 left hours of the campaign! I sent a second donation a little while ago. Please consider donating more if you can afford to. Let’s show Dave just how much we value his work! :thumbup:
  13. JaneL

    Reports from participants in GET and CBT trials

    It’s great that the Lincolnshire ME/CFS unit does home visits and that you sound to be happy with the support you are getting from them so far. That is encouraging to hear! However, on their webpage they say that they use a “10 week group rehabilitation programme” which gives me great cause...
  14. JaneL

    MS society question people on the streets to ask what they know about MS

    I think it’s a great idea. A video like this might also be a powerful tool for demonstrating the lack of understanding, negative attitudes and stigma associated with ME (assuming these things were captured on camera of course... but that seems likely given how widespread they are).
  15. JaneL

    Jamie Strong, a member of Karl Morten's team at Oxford, nominated for the National Diversity Awards

    Here’s some information about the work he’s doing with Karl Morten’s team at the University of Oxford: https://www.wrh.ox.ac.uk/team/jamie-strong
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