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  1. Trish

    Sense about Science: Join our talks on science, scepticism and free speech (Garner et al)

    I clicked on the video on this thread, then the YouTube logo at the bottom to get it to take me to YouTube, then on 'more' under the video where it gives a summary. At the bottom of the summary it says Transcript, and I clicked on Show Transcript in blue. That took me to a line by line version...
  2. Trish

    Personal experience of using cumin to treat PEM

    :laugh: A risky thing to do on a science forum!
  3. Trish

    UK Parliament: Westminster Hall debate on ME/CFS, Wednesday 1st May 2024, 16.30 - 17.30

    Sajid Javid is standing down as an MP at the election. I suspect he initiated the debate to try to force his party to get on and complete the implementation plan he set up that was supposed to be completed in 2022, or at least to get it recorded in Hansard that he had tried, and that his party...
  4. Trish

    Sense about Science: Join our talks on science, scepticism and free speech (Garner et al)

    I just clicked on the link on YouTube. It's pretty hard to read.
  5. Trish

    UK Parliament: Westminster Hall debate on ME/CFS, Wednesday 1st May 2024, 16.30 - 17.30

    The main things of interest for me: The government delivery plan is unlinkely to be published before the general election. They are expecting to publish a summary of the submissions to the consultation soon, then start work on finalising the plan which looks likely not to be completed before...
  6. Trish

    Sense about Science: Join our talks on science, scepticism and free speech (Garner et al)

    I've glanced at some of the transcript. It looks like he's gone full-on attack on post viral stuff and the NICE guideline. Nasty. Not sure I can bear to watch it.
  7. Trish

    Personal experience of using cumin to treat PEM

    I'm none the wiser. Can you explain, since you seem to be saying you know what your inflammation temperature is in numerical terms. How do you measure it?
  8. Trish

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

    This thread has been split to start a new thread for 2024. This thread is now closed. Go to the new thread to continue discussions. UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 (including PIP consultation) Edit: Link corrected
  9. Trish

    Anyone tried Lightning Process for Long Covid?

    I can't tell from that whether they are recommending LP or arguing against it's use in Norway. Any idea?
  10. Trish

    Anyone tried Lightning Process for Long Covid?

    They are all sales pitches by Parker, there's no real evidence in them. Edit: Threads on them: Understanding the Lightning Process Approach to CFS/ME; a Review of the Disease Process and the Approach A Systematic Review of The Evidence Base for the Lightning Process - 2020 - by Phil Parker et...
  11. Trish

    Anyone tried Lightning Process for Long Covid?

    https://www.s4me.info/threads/anyone-know-of-any-stories-of-people-with-long-covid-who-were-made-worse-by-the-lightning-process-gupta-or-similar.35462/
  12. Trish

    The Agreed Care/Activity Plan

    I have been seeing a few comments on social media from people using the Visible app that it's telling them they need to slow down some days because they are overdoing exertion, and the pwME saying it's really helping them with pacing. I have no idea whether its algorithm is actually picking up...
  13. Trish

    The Agreed Care/Activity Plan

    The 2021 guideline is a big improvement because it says don't do GET with fixed increments, and don't do CBT based on false illness beliefs. And because it talks about staying within your limits imposed by symptoms and trying to avoid PEM. If it stopped there, that would be great. But the...
  14. Trish

    Mike's EU Marathons

    A fantastic fundraiser, Mike. Well done and thank you.
  15. Trish

    USA Long Covid Action Project

    You are quite right to be upset by such posts in Long Covid communities, Yann. I'm sorry to hear that's not being stopped by moderators. We certainly don't allow such behaviour here, so you should be safe here. I think if I were joining an online community other than this one, I would want to...
  16. Trish

    Practical Recommendations for Exercise Training in Patients with Long COVID with or without Post-exertional Malaise, 2024, Gloeckl, Scheibenbogen+

    As many told us in the Cochrane exercise harms petition, those who started GET when mild often ended up severe after 'treatment'. They are not two different conditions.
  17. Trish

    Could Transcranial Doppler be used to demonstrate cognitive impairment?

    Thread here: Cerebral Blood Flow and Cognitive Performance in Postural Tachycardia Syndrome: Insights from Sustained Cognitive Stress Test, Wells et al, 2020
  18. Trish

    The Agreed Care/Activity Plan

    The NICE guideline isn't perfect. Sadly it stll allows for exercise programs for those who 'feel ready', but it does specify that this has to be within limits imposed by PEM, not pushing through them, as GET does. And it does, make it clear they mean symptom contingent. I agree, @Evergreen...
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