United Kingdom: Kings College London; South London and Maudsley NHS Trust

now that is just pushing propaganda isn't it when you see it in such bullet-points of tropes and in the context of so many years after it has been proven things like WOrkwell and the Nice guideline.

I'm sorry but I think it is time that dangerous disability bigotry needs to stop being allowed to hide behind weaponising pretence of 'it's mental health not slander'... for everyone, particularly those who work in the real psychology and helpful side of mental health industry.

 

Perfect, Oh bravo for spotting this on X @Amw66 ! This is exactly what I've been waiting for; I knew it would come eventually. Thank you so much to Claire Jones for safeguarding vulnerable disabled patients.

I've been following the lead suggested by Valorie Eliot Smith's on the legal aspects since 2015, because of my former legal background. Once I've obtained formal specialist expert legal advice, I'll update in this forum. Due to the severity of my ME, I estimate this process will take another 1-2 months, as I need to finish the Briefing document for lawyers which I have been preparing for some time.

This is why I chose the name Maat Maat - Wikipedia

ETC gramma

 

Don't know who gave the talk but Matthew Hotopf (a familiar BPS researcher) is part of King's Health senior team as Academic Director of the Mind & Body Programme ("His main area of research is in the grey area between medicine and psychiatry, exploring the interaction between mental and physical health."), https://www.kingshealthpartners.org/about-us/our-team/3071-professor-matthew-hotopf-cbe

"King’s Health Partners is an Academic Health Sciences Centre bringing research, education and clinical practice together across three NHS Foundation Trusts, Guy’s and St Thomas’, King’s College Hospital and South London and Maudsley with a world-leading university, King’s College London. "
https://www.kingshealthpartners.org/about-us

The event details have gone from the King's College University website as the event is now over, but this is the event advertised elsewhere, https://acnr.co.uk/event/kings-health-partners-functional-neurological-disorders-masterclass-2024/ - it doesn't say who was presenting.

 

Sadly, certain FND 'experts' have been attempting to absorb ME/CFS into FND for years.

 

That's true Andy. But it's what, where, and when it has been said, that I was waiting for, (more so, than the FND aspect), although the fact that it was repeated at an FND Masterclass is a bonus - wider historical context and current day timing.

The FND masterclass is annual event, usually around the same time of year. I wanted to see if anything surfaced ME related at this year's Masterclass, following from a specific more wider chain of events outside of the ME community which took place in 2023, one of which was the 'Anomalies' paper in July.

While the community did what it does best, and people were analysing it's contents and highlighting the background of the signatories, which was obviously essential from an ongoing patient treatment and evidence gathering basis, together with the NICE committee response. I focused my energy and knowledge base searching for the reason why it was published at that particular time - 1yr and 10 months after the publication of the NICE Guidelines? Why then? What else was happening in the period leading up to it would potentially trigger such a public announcement then?

From a legal perspective, it would be far too long past the Guideline publication date of 29th October 2021, for a claim that the primary concern was to prevent harm to patients, to succeed.

It didn't take long at all to find something, and then another and another, forming an invisible pattern through to the end of year. As a result, taking a step back and observing the landscape, it appeared to me that a legal challenge was being defended, before a case was brought. I'm not aware of anything being prepared at the moment apart from what I've been doing on my own.

Think along the lines of the current Infected Bloods Inquiry, and the Cumberlege Review into Medicines and Medical Devices Safety published 8th July 2020, that's the ballpark I'm in.

 

The Report of the Cumberlege Review titled 'First Do Harm'. 8th July 2020 (delayed due to Pandemic)

Independent Medicines and Medical Devices Safety Review report - GOV.UK (www.gov.uk)

It was initiated in February 2018. Its primary focus was to examine how the health system responds when patients and their families raise concerns about the safety of treatments. The review, chaired by Baroness Julia Cumberlege, delved into three specific medical interventions:

1. Vaginal Mesh: A controversial treatment for pelvic organ prolapse and stress urinary incontinence.
2. Sodium Valproate: An antiepileptic drug associated with risks during pregnancy.
3. Primodos: A hormone pregnancy test that has been linked to adverse effects.

The review culminated in a comprehensive report titled “First Do No Harm,” which was published on July 8, 2020. This extensive document spans 194 pages containing 9 important recommendations.

Here is the Government's response, one of which was an unreserved apology delivered by the then SoS for the Department of Health and Social Care, Sajid Javid MP, the day after the report was published.

Government response to the Report of the Independent Medicines and Medical Devices Safety Review (publishing.service.gov.uk)

Legal summary of take-away points from the Report provided by BevanBrittan:

First Do No Harm – What you need to know about the Cumberlege Review | Bevan Brittan LLP


"As Baroness Cumberlege says in her Letter to the Secretary of State, while we literally applaud our health and social care workers for their heroism and commitment, the healthcare system can sometime forget that patients are its very raison d’etre."

I'm submitting my Briefing document to a very high profile law firm who specialise in the relevant area of law, as my Briefing goes further than this.

 

This account was live-tweeting (or whatever it's called now) the rundown of speakers and topics: https://twitter.com/KHPNeuro
This was one that caught my eye:
https://twitter.com/user/status/1772251080081936399

 

Almost 3 1/2 years ago. [My bolding in the narrative] First Do No Harm – What you need to know about the Cumberlege Review | Bevan Brittan LLP

"
Recommendations and actions for improvement
In the introduction and overview to the report, comment is made that while the review team were asked to look at three disparate interventions governed by two different regulatory frameworks, the commonalities that bound the three interventions were more compelling than any differences:

• They were all taken or used by woman and, in the case of sodium valproate and hormone pregnancy tests, usage was during pregnancy.
• Patients affected by each tell similar and compelling stories of their battles to be listened to when things go wrong.
• Patients turn to each other for help and mutual support.
• Patients campaigning for years, if not decades, to achieve acknowledgement resorting to the media and politicians to take up their cause because the healthcare system did not listen.

The review makes frank acknowledgement that its report will ‘not make comfortable reading for many who have dedicated their lives with the best of intentions to delivering high-quality and compassionate treatment and care…Most people do excellent work most of the time in the health service.’ It also acknowledges that ‘Innovation in medical care has done many wonderful things and saved many lives’. But – and it is a very big but – ‘innovation without comprehensive pre-market testing and post-market surveillance and long-term monitoring of outcomes is, quite simply, dangerous…Without such information it is not possible for doctors and patients to understand risks, and patients cannot make informed choices. This applies to both medications and devices.’ ".

 

Here's the link to NZ's equivalent report from Dec 2019: https://www.health.govt.nz/publication/hearing-and-responding-stories-survivors-surgical-mesh

 

Maudsley Learning Podcast

Chronic fatigue syndrome/myalgic encephalomyelitis with Dr Charles Shepherd
18 Feb 2022
1 hour

https://maudsleylearning.com/podcas...MI-rac8_PgiAMVWvF5BB1bjBCSEAMYASAAEgJvdfD_BwE

eta: the interviewers father had ME for 25years

 

Is this any good? Given my previous experience with the Maudsley, I'm reluctant to engage with anything they put out on ME.

 

@Amw66 and @Maat

That session on the so-called management of #MECFS (at King's) appears to consist of simply copying/repeating a document that was guidance for 'CFS' at King's/IOP in the first half of the 1990s.


That content dates from before 1995. The 'predictors of poor outcome include "being in receipt of invalidity benefits" sentence demonstrates that.


'Invalidity Benefit' was replaced by 'Incapacity Benefit' in 1995.

https://en.wikipedia.org/wiki/Invalidity_Benefit

.