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Tessa Munt MP in the Commons today 5/2/2026 (there is a video of this with the Leader of the House response in the Commons, but it is not on Youtube, should be on parliament tv. The video is on Tessa Munt's Bluesky profile, video link below: "This morning I asked about Savannah Victora-May...

BMJ December 21st, 2002 'What should we say to patients with symptoms unexplained by disease? The “number needed to offend” ']Jon Stone, ']Wojtek Wojcik, ']Daniel Durrance, ']Alan Carson, ']Steff Lewis, ']Lesley MacKenzie, ']Charles P Warlow, ']Michael Sharpe '.... We calculated an “offence...

The Snippets from this study published in Science Direct includes this wildly extrapolated, mangled and worrying statement, which shoves us back decades - It's deeply worrying to see ME patients falling over themselves to agree with this dangerous study, oblivious of what the study is...

THIS Thank you @Cinders66 .

Hmm. Good idea. Unlikely to be successful but worth trying. When Wessely sent the 2006 Gibson Inquiry committee a 20 page letter, the letter's contents were not allowed to be considered as written evidence to the Inquiry, were never made public, and Prof Wessely did not give oral evidence...

Oh dear. Comes across as defensive but not very precise. Making quotes of the criticisms that she is defending herself against would have been more helpful, (Edit) rather than her own *interpretation* of the criticisms. The 'Long Covid Advocacy' Blog replies underneath Emily Mendenhall's new...

Possibly/likely. The version I have is a soft loose bound book.

Richard Sykes (of Westcare), in one of his publications, addressed use of the term 'Functional'. He identified something like 14 separate definitions/interpretations of the term Functional across various medical and therapy disciplines. I have the book somewhere here, but all my papers are in...

This discussion has been going on for a long time. So why has Russell Fleming not engaged with this discussion here? He is not an elected charity official, he is just a patient, like us. Does he believe he is in a unique position of not being accountable for his actions, not being...

If Charles Shepherd and the MEA Trustees are unwilling to stop Russell Fleming in his campaign to hand local ME/CFS NHS Services over to BACME and Elaros (which he has accomplished) then MEA Policy on ME 'treatments' is now wholly Psycho-Behavioural, with the patients reduced to passive units...

'In 2024, Russell took on a new role as head of [ME Association] project development and looks forward to producing viable projects that will help the charity achieve its objectives and bring further support to the patient community.' So - is allying with, collaborating with, promoting...

The reason I was prescribed prednisolone (and high dose cortisone body cream) had nothing to do with ME, but was for a very recent auto immune disease called Bullous Pemphigoid. By feelings of wellbeing I mean I felt quite good in my head on the higher doses. But there was no corresponding...

These Parliamentary Questions and Answers are basically repetitive Bollox. I thank the Parliamentarians for posing the Questions .... but really, the Ministers' Answers are always worthless. Year after Year. While our lives drain away. . .

@Hutan wrote - "I believe that things like prednisone can induce feelings of wellbeing and high energy even in healthy people." I had a course of high dose Prednisolone from early September. 40mgs for 4 weeks then gradually reduction (still reducing very slowly). I definitely had the...

Involvement of Kent/Medway with the Sussex/Kent ME/CFS Society is not hopeful. The Society is joined at the hip with BACME, with Alastair Miller as Medical Advisor - He was/is the frontperson for the public BPS hitback against NICE. The current Sussex Services are all rehab, with...

LSHTM? Is what? I am not good with acronyms.

What Kent and Medway ME patients said about the previous ME/CFS Services: Appendix6: Your experience of ME services - report by MEAction UK YOUR EXPERIENCE OF ME SERVICES Survey report by #MEAction UK October2019 (Evidence to NICE for the NICE Guideline (2021) Survey Responses from...

Will the Sussex and Kent ME/CFS Society be involved in developing the new Kent and Medway ME/CFS Services? The so called patient group/charity claims to have 'helped set up' the Sussex NHS Services and to have 'worked with' the Kent and Medway Service Team and its Lead Dr Vegara-Williamson...