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:oops: I am their own homework from 14 years ago. I'm now informed, I wasn't then. That means as a fully informed patient, I now have nothing more than SMC for my severe ME/CFS. QED

It's PACE v.2

I just found this case study titled https://c19-yrs.com/wiltshire-case-study/ Don't quote from it, it needs prior written consent - protecting commercial interests I suspect.

About us - Open-OH Elaros Meet our Advisory Board Our Scientific Advisory Board includes leading clinical experts and patient representatives I’m wondering why Professor Danny Altmann isn’t also on the advisory board. Maybe he was invited but couldn’t fit it in with his other commitments...

ME/CFS Final Delivery Plan. (A national healthcare policy document) My PA who has been a professional carer for 25 years will not be able to access the 3rd eLearning Module on severe and very severe ME/CFS, due to be available later this year because she does not have the required email...

Oh sorry, I thought he had..

[side note: I didn’t think you used ampersands on Facebook?] The first point to make, as others have done is - rehabilitation from what, our beliefs and fears causing deconditioning and sedentary behaviour? ELAROS vaguely refer to the fact they are following WHO guidance. So let’s look at that...

I know what you mean. I also thought of Professor Jonathan Kerr.

Broken Battery has also produced a great 'short' which perfectly explains why I will not accept this programme for my NHS care or the Final Delivery Plan.

Permanent Health Insurance debate at Westminster Hall in the 1999 Mrs Buckland had a long term health Insurance policy which covered for disability. She suffered with Lupus and made a claim. ETA: Forseable consequences of serious harm. GMC Guideline 1999, and Montgomery v. Lanarkshire...

Word of advice. The Final Delivery Plan has no legal definitions in it. So, 'appropriate' treatment could mean absolutely anything and vary as time goes by. It needs pinning down. Far too vague.

Lord Freud, Minister of state for welfare reform (2010–16) On 17 January 2012, in a House of Lords debate on amendments to what became the Welfare Reform Act 2012 which introduced Universal Credit and PIP Lord Freud said this: Welfare Reform Bill - Hansard - UK Parliament

This The UNCRPD produced a follow-up report to its Inquiry into the UK dated 22 March 2024, in which it states on page 11:

Snap! Consent to treatment is not a static thing. It is an ongoing process and can be withdrawn at any time, as long as you have mental capacity to consent. Given my age and my health, I had a long conversation with my solicitors this morning concerning an enduring power of attorney for...

The first hurdle for me, is informed consent to anything in it.

The second video which was posted at the beginning of this thread is unavailable. I know this is a long shot after 5 years, but does anyone have any recollection about what it was?

Thanks for compiling this for me Tilly. I'll include it as is written because the impact comes through in your words. I've been following the situation with cyp research for 10 years, SMILE, MAGENTA, FITnet-NHS, etc, but only the FII and FDIA from a distance as that's an area I have no direct...

This is the paper I referenced: Fiona Gullon-Scott, Cathie Long, FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What are the Implications for Social Services?, The British Journal of Social Work, Volume 52, Issue 7, October 2022, Pages...

Thanks for all this hard work @bicentennial Extremely helpful. I've also picked up on the medical devices aspect. Note: https://www.s4me.info/threads/drafting-a-personal-letter-to-the-uk-me-association-on-several-current-issues-of-concern-june-2025.44543/page-13#post-634745

New meta analysis from QMUL et al reported by QMUL in Medical Express 16 August 2025. https://medicalxpress.com/news/2025-08-people-sensitive-personalities-mental-health.html Also reported in the Daily Mail with a photo of Amanda Heart...