Search results

  1. InitialConditions

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    I don't mean to blame Charles—he is a very valued member of the community. And it's probably not his job to do social media comms. But I hope he recognises that their strategy does a disservice to his commentary.
  2. InitialConditions

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Charles does so much, and I don't think he's got the media savviness required to lead a prominent charity in 2023. Things are different now. I remember reading that the MEA had 6 full-time staff not long ago. They need to get someone in with expertise in comms and PR. Action For ME has been...
  3. InitialConditions

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    There's an MEA response, and in true MEA sfashion it's not clear on their on their social media posts that it's a response. So now people—many of whom haven't read the MEA piece—are asking why they are endorsing the article. The MEA desperately need some new, more savvy staff.
  4. InitialConditions

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    It would be good if someone could compare the snippets from the draft version of this paper with the final piece. Should give us an indication of what the reviewers thought. @dave30th
  5. InitialConditions

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    I'd be grateful if someone could DM me the article PDF, or post here if you so wish. EDIT: Now received.
  6. InitialConditions

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    The Guardian article has been corrected ('chronic fatigue' removed, and prevalence figure corrected). Unfortunately, the content of the article remains!
  7. InitialConditions

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    With NICE's reputation being questioned, I have gone nuclear. Please retweet etc. No one else seems interested in telling this story.
  8. InitialConditions

    The Observer/Guardian article: Does the microbiome hold the key to chronic fatigue? About patient led 'research' group Remission Biome.

    Yep, important to warn of potential harms. I've not seen much of that. I believe my trigger was in part erroneously being prescribed amoxicillin for what was likely a trivial viral illness. I still believe antibiotic use might be playing a large role in onset of ME in some patients.
  9. InitialConditions

    The Observer/Guardian article: Does the microbiome hold the key to chronic fatigue? About patient led 'research' group Remission Biome.

    Nope. It's all presented as fact. Lot's of claims of "this is why" and "this is how to stop that". I have called them out on this on Twitter. EDIT: e.g., here on PEM: I'm afraid they are.
  10. InitialConditions

    The Observer/Guardian article: Does the microbiome hold the key to chronic fatigue? About patient led 'research' group Remission Biome.

    Remission Biome is essentially PhoenixRising on steroids. There's a lot of nonsense being pushed. They seem to just ingest any rudimentary science and based on that push extremely expensive interventions that 95% of patients would never be able to afford.
  11. InitialConditions

    Opinion The long wait for a breakthrough in chronic fatigue syndrome, Lloyd and van der Meer, BMJ, 2015

    Well, no, but based on the title I didn't expect just CBT/GET peddling.
  12. InitialConditions

    Opinion The long wait for a breakthrough in chronic fatigue syndrome, Lloyd and van der Meer, BMJ, 2015

    I'm getting a security warning from that site. I did try other sci hub sites but they were down. Can you post the PDF? Thanks.
  13. InitialConditions

    Opinion The long wait for a breakthrough in chronic fatigue syndrome, Lloyd and van der Meer, BMJ, 2015

    Can anyone provide a PDF of this BMJ editorial. Thanks. https://www.bmj.com/content/350/bmj.h2087.full
  14. InitialConditions

    Videos on PEM and other ME/CFS topics - Bateman Horne Center

    I just started this video and the first claim—that delayed onset muscle soreness (DOMS) after a workout is caused (primarily) by lactic acid—seems to have been debunked a while back.
  15. InitialConditions

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    TV docs looks very different from stuff like Voices From The Shadows. There are production companies who do this day-in-day-out for TV and know the format and recipe. It could be an idea to pitch to some of them who have made docs on similar topics before. I don't know enough about how the...
  16. InitialConditions

    Article: Science: Is exercise actually good for the brain?

    This is the second time we've seen this in a week. What is going on?
Back
Top Bottom