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The Grace Charity made this version available publicly after I succeeded in getting the file opened up via my FOI request - which was a year's worth of work. There were "secret" copies going round before then but no one had tried using the FOI Act to get it formally released.

Sean - this link will take you directly to the pdf file on my website https://valerieeliotsmith.com/wp-content/uploads/2015/01/natarchbn141dss.pdf I made FOI requests (initially refused so I had to appeal) to The National Archives (TNA) in 2011. As a result, the two files were released in...

Returning to the beginning of this thread, and the previous one from which it was moved, an obvious question arises: Since many voices on this forum are committed to the term "ME/CFS" and against the ME-ICC, why was/is the forum not named "Science for ME/CFS"?

Could be but it sounds more like just the use of a room as a donated benefit via the trustee's connection. Allen & Overy (or A&O Shearman since 2024) wouldn't be the obvious choice for what I'm suggesting anyway. It's a corporate/financial behemoth (I had a friend who was a senior lawyer...

The short answer is no. The legal route is not the right way of addressing the problems with the Final Delivery Plan. The Plan is so flabby (it looks largely AI-generated to me) that it's just not worth wasting resources on challenging it. It is simply one in a line of many such documents over...

None of the above - and a "similar legal campaign" would now be out of time. Reminder (I'm a lawyer): when I first read the ME/CFS Final Delivery Plan, my view was that it was not worth challenging it via a legal route (ie. judicial review). If I'd been involved in the #JusticeforME campaign...

An update from today: https://www.crowdjustice.com/case/justice4me/

[Edited for clarity] The deadline for launching judicial review (JR) proceedings was Tuesday 21 October, 9 days ago (although that can be extended in certain circumstances). The CrowdJustice funding page has no update on any DHSC response to the letter before claim. However, the #JusticeforME...

[Edited for clarity]: Slightly off-topic but it follows from an [expanded] quote in an earlier post here (#165) regarding threads on X/Bluesky: "The treatment of #MECFS has been described by George Monbiot as 'the greatest medical scandal of the 21st century.'" This line is being used by many...

That is an excellent idea. Unfortunately I can't do it (see my post #48 earlier) but it's a very sensible suggestion.

From my experience with them (see #48 above), clarity and transparency are not their strongest attributes. @Binkie4 Their lawyers can only communicate with those instructing them ie. #JusticeforME

I have debated whether or not I should post this but, given some earlier comments in this thread, it seems appropriate that I add my recent experience here. I became aware of the JusticeforME group during August. I was invited to become more involved at the beginning of September. I was not...

I agree, Trish, but, realistically, there's not much more we can do beyond remaining vigilant. We can never know what is discussed in private, informal situations anyway and that has always been the case. I think that our biggest current challenge is from the likes of the authors of the recent...

Just FYI generally: this is the text of something I wrote recently in response to a direct question on BlueSky: This appointment [SW] may be unwelcome but is unlikely to affect specific FOI requests to The National Archives. FOI's are handled by the in-house team & appeals go to the Information...

Just a small reminder of the type of behaviour deemed appropriate by Neil Riley and the MEA (and there is anecdotal evidence of similar behaviour towards others): https://valerieeliotsmith.com/2022/01/20/governance-under-scrutiny-identities-revealed-in-charity-complaint/

A bit of background in link below: short version of the Page v Smith case (from 2014 blog post). Not sure how this fits with Simon's argument (haven't tried to access that paper yet) but the final result in this case wasn't particularly helpful for PwME's...

Your blanket loathing of the legal profession is very disappointing, Jonathan, and it does you no credit. Getting formal pro bono representation is very, very difficult for a number of reasons (too long for here). The legal profession is currently engaged in a battle for improved access to...

Thanks @Robert 1973 No, it's not. Prevention of Future Deaths reports, like the recommendations of public inquiries, are helpful in framing policy considerations but, sadly, are not legally enforceable. Likewise the duty to respond. It's a matter of good practice - but there are no official...

Thanks for the mention @Amw66 I assume the first question refers to Dr Anthony Hemsley who is giving evidence tomorrow at the hearing when the Coroner will consider whether or not to write a Section 28 Prevention of Future Deaths Report. Dr Hemsley was appointed as Medical Director to the RDUH...

Thanks for the mention @MEMarge. I'd seen this question at its original source. The question itself is something of a red herring as anyone could simply raise it directly as part of an initial inquiry to a law firm. If a potential conflict of interest were to become apparent later on, the...