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Activity stream for all registered members at Science for ME.

  1. Invisible Woman liked strategist's post in the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    I think that significant psychological harm could be avoided merely by having doctors confirm that this isn't something patients can...

    May 26, 2018 at 6:53 PM
  2. Invisible Woman liked Waiting4Change's post in the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    After brainwashing sessions at one of the NHS CFS/ME clinics years ago, I eventually got referred to the consultant because according to...

    May 26, 2018 at 6:53 PM
  3. Invisible Woman liked Waiting4Change's post in the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    No to any form of CBT. The reason I say this, is people assume we get supportive therapy for the newly diagnosed to come to terms with...

    May 26, 2018 at 6:52 PM
  4. Invisible Woman liked Waiting4Change's post in the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    A clinic which offered advice on what patients consider pacing ie energy/activity management. How to do what your body will allow with...

    May 26, 2018 at 6:52 PM
  5. EJS1958 liked Adrian's post in the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    I assume she didn't understand why they are meaningless.

    May 26, 2018 at 6:51 PM
  6. Invisible Woman liked Trish's post in the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    I agree that it would be best to close the present clinics that are based around teams of OT's, physios, psychologists and...

    May 26, 2018 at 6:51 PM
  7. Invisible Woman liked Jonathan Edwards's post in the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    I have been trying but it can be an uphill struggle. Charles Shepherd would like to see more flexibility in treatment options. But to my...

    May 26, 2018 at 6:50 PM
  8. Invisible Woman liked Jonathan Edwards's post in the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    This is my view. When I started looking after rheumatoid arthritis in 1977 we were using poisonous ineffective treatments and I knew...

    May 26, 2018 at 6:50 PM
  9. Alena Lerari replied to the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    Thank you

    May 26, 2018 at 6:49 PM
  10. Alena Lerari liked Trish's post in the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    Thanks for your feedback from the meeting @Alena Lerari, and welcome to the forum.

    May 26, 2018 at 6:49 PM
  11. Invisible Woman liked BurnA's post in the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    This is worrying. Is there any way to get the patient groups to agree what the main goal is here and fight for that rather than...

    May 26, 2018 at 6:49 PM
  12. TiredSam liked Inara's post in the thread Janet Dafoe - The Whitney Plea.

    I feel like you @Andy. Very unhappy with this. I'm also not sure if it's "ok" to link a petition - that has a certain scope for which...

    May 26, 2018 at 6:49 PM
  13. arewenearlythereyet liked Inara's post in the thread Janet Dafoe - The Whitney Plea.

    I watched the video that was sent in the eMail, and there is this pleading sign.

    May 26, 2018 at 6:49 PM
  14. Invisible Woman liked arewenearlythereyet's post in the thread NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018.

    Up until about 4 weeks ago I was exactly where you are in terms of adapting the clinics ....however after listening to various other...

    May 26, 2018 at 6:49 PM
  15. arewenearlythereyet liked Inara's post in the thread Janet Dafoe - The Whitney Plea.

    I feel like you @Andy. Very unhappy with this. I'm also not sure if it's "ok" to link a petition - that has a certain scope for which...

    May 26, 2018 at 6:48 PM
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