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

Amw66 said:
Disturbing thread on X
Tagging @PhysiosforME , ( Dr Michelle Bull) has been querying details but needs wider charity awareness @Russell Fleming




I'm finding it difficult to put into words just how angry I am to have sat through such an appalling session on the so-called management of #MECFS at a conference delivered by @kingshealth this week to approx. 200 attendees. 1/6

Perhaps now that I understand more about the opinions of the team delivering the session, I should be unsurprised that there was no reference whatsoever to the NICE guidance or #PEM, and to have been advised to encourage #GradedExerciseTherapy 2/6

Nonetheless, I am in a state of disbelief to have been advised to "break the association between symptoms and stopping activity", "address reassurance seeking and unhelpful behaviours" and "make links between symptoms and behaviour" 3/6

Apparently, predictors of poor outcome include "being in receipt of invalidity benefits" and "belonging to a self-help organisation". Shocking examples of #patientblaming and #ableism 4/6

Often, no response is a powerful response. But not in this case. While unable to control the actions of others, we can choose how to respond to them, and as pointed out to me today, to not challenge something like this can be as good as accepting it @sunsopeningband 5/6

We are lucky that organisations including @LongCOVIDPhysio @MEAssociation @PhysiosforME @WAMESMECFS work hard to advocate for #pwME and #pwLC and educate HCPs on safe rehabilitation. We must continue to challenge unsafe and harmful practice. #StopRestPace 6/6



In replies
It was actually an FND conference, I didn't even notice there was a talk about ME/CFS. If I'd done my research first I might have known what to expect

ETA corrected last paragraph as double posted thread 6/6 previously
Click to expand...


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.
 
Amw66 said:
Disturbing thread on X
Tagging @PhysiosforME , ( Dr Michelle Bull) has been querying details but needs wider charity awareness @Russell Fleming




I'm finding it difficult to put into words just how angry I am to have sat through such an appalling session on the so-called management of #MECFS at a conference delivered by @kingshealth this week to approx. 200 attendees. 1/6

Perhaps now that I understand more about the opinions of the team delivering the session, I should be unsurprised that there was no reference whatsoever to the NICE guidance or #PEM, and to have been advised to encourage #GradedExerciseTherapy 2/6

Nonetheless, I am in a state of disbelief to have been advised to "break the association between symptoms and stopping activity", "address reassurance seeking and unhelpful behaviours" and "make links between symptoms and behaviour" 3/6

Apparently, predictors of poor outcome include "being in receipt of invalidity benefits" and "belonging to a self-help organisation". Shocking examples of #patientblaming and #ableism 4/6

Often, no response is a powerful response. But not in this case. While unable to control the actions of others, we can choose how to respond to them, and as pointed out to me today, to not challenge something like this can be as good as accepting it @sunsopeningband 5/6

We are lucky that organisations including @LongCOVIDPhysio @MEAssociation @PhysiosforME @WAMESMECFS work hard to advocate for #pwME and #pwLC and educate HCPs on safe rehabilitation. We must continue to challenge unsafe and harmful practice. #StopRestPace 6/6



In replies
It was actually an FND conference, I didn't even notice there was a talk about ME/CFS. If I'd done my research first I might have known what to expect

ETA corrected last paragraph as double posted thread 6/6 previously
Click to expand...



Perfect, Oh bravo for spotting this on X @Amw66 ! :thumbup: 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. :hug:

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
 
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Trish said:
Does it say who gave that talk? It's appalling this is still going on.
Click to expand...
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.
 
Andy said:
Sadly, certain FND 'experts' have been attempting to absorb ME/CFS into FND for years.
Click to expand...

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.
 
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.’ ".
 
Maudsley Learning Podcast

Chronic fatigue syndrome/myalgic encephalomyelitis with Dr Charles Shepherd
18 Feb 2022
1 hour
Dr Charles Shepherd is a medical doctor and world renown expert on the subject of chronic fatigue syndrome, also known as Myalgic Encephalomyelitis, or ME. He is the Hon Medical Advisor to the ME association, which is a self-help support charity for people with ME. He was on the Steering Committee of the National ME Observatory, a collaborative research project in the UK, as well as previously on the advising committee for NICE guidelines on ME. He has written a number of books for both patients and medical professionals on the topic as well as developing the Shepherd ME/CFS Disability Scale. Dr Shepherd also developed ME himself following a bout of chickenpox from a patient.

Myalgic Encephalomyelitis (ME) is a long-term, fluctuating, neurological condition that causes symptoms affecting many body systems, most commonly the nervous and immune systems. ME affects up to an estimated 264,000 people in the UK, and around 17 million people worldwide. There is a 3:1 female to male ratio. People with ME experience severe, persistent fatigue associated with post-exertional malaise (the body’s inability to recover after expending even small amounts of energy). ME is classified by the World Health Organisation (WHO) as a neurological disease. However, due to the complex and unknown nature of the condition, there has been a lot of controversy surrounding the disease.

Interviewed by Dr Rebecca Wilkinson
Click to expand...
https://maudsleylearning.com/podcas...MI-rac8_PgiAMVWvF5BB1bjBCSEAMYASAAEgJvdfD_BwE

eta: the interviewers father had ME for 25years
 
Amw66 said:
Posts moved from UK news

Disturbing thread on X
Tagging @PhysiosforME , ( Dr Michelle Bull) has been querying details but needs wider charity awareness @Russell Fleming




I'm finding it difficult to put into words just how angry I am to have sat through such an appalling session on the so-called management of #MECFS at a conference delivered by @kingshealth this week to approx. 200 attendees. 1/6

Perhaps now that I understand more about the opinions of the team delivering the session, I should be unsurprised that there was no reference whatsoever to the NICE guidance or #PEM, and to have been advised to encourage #GradedExerciseTherapy 2/6

Nonetheless, I am in a state of disbelief to have been advised to "break the association between symptoms and stopping activity", "address reassurance seeking and unhelpful behaviours" and "make links between symptoms and behaviour" 3/6

Apparently, predictors of poor outcome include "being in receipt of invalidity benefits" and "belonging to a self-help organisation". Shocking examples of #patientblaming and #ableism 4/6

Often, no response is a powerful response. But not in this case. While unable to control the actions of others, we can choose how to respond to them, and as pointed out to me today, to not challenge something like this can be as good as accepting it @sunsopeningband 5/6

We are lucky that organisations including @LongCOVIDPhysio @MEAssociation @PhysiosforME @WAMESMECFS work hard to advocate for #pwME and #pwLC and educate HCPs on safe rehabilitation. We must continue to challenge unsafe and harmful practice. #StopRestPace 6/6



In replies
It was actually an FND conference, I didn't even notice there was a talk about ME/CFS. If I'd done my research first I might have known what to expect

ETA corrected last paragraph as double posted thread 6/6 previously
Click to expand...






@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

.
 
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Came across Psychodermatology when I went looking for psoriasis, eczema and MS which is in my family A narrative review of psoriasis and multiple sclerosis: links and risks - PMC 29 August 2019

Psychodermatology, is now better known as Mind and Skin.
The Mind-and-Skin Connection | Psychology Today United Kingdom 2021

Mind and Skin Consortium Project team - ppopderm King's College

Project runs from 2022 - 2027

The Mind and Skin Consortium is led by a dedicated team of experts in dermatology, neuroscience, mental health, and clinical research. Our multidisciplinary team works collaboratively to explore how inflammation, itch, and sleep disturbance in atopic dermatitis (AD) affect the brain, mental health, and cognitive functions. Each member plays a crucial role in advancing our understanding of the mind-skin connection and improving patient outcomes.
Click to expand...
 
Lou B Lou said:
@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

.
Click to expand...
That’s a find @Lou B Lou
Ugg.
 
Maat said:
Came across Psychodermatology when I went looking for psoriasis, eczema and MS which is in my family A narrative review of psoriasis and multiple sclerosis: links and risks - PMC 29 August 2019

Psychodermatology, is now better known as Mind and Skin.
The Mind-and-Skin Connection | Psychology Today United Kingdom 2021

Mind and Skin Consortium Project team - ppopderm King's College

Project runs from 2022 - 2027
Click to expand...
Interesting

there are a heck of a lot of staff listed - only ONE is in dermatology

I don’t know about the chief investigator is head of this overall dept so who knows if their background is real dermatologist or just neuro/psych claiming ‘interest in his it affects the skin’ as a sub-specialism which I think is very different

anyway I find it insightful this isn’t coming from the dermatologist side or wanting to improve the skin conditions sude but ‘supply-led’ and ‘looking for new targets for neuropsych ‘ ?
 
Maat said:
Came across Psychodermatology when I went looking for psoriasis, eczema and MS which is in my family A narrative review of psoriasis and multiple sclerosis: links and risks - PMC 29 August 2019

Psychodermatology, is now better known as Mind and Skin.
The Mind-and-Skin Connection | Psychology Today United Kingdom 2021

Mind and Skin Consortium Project team - ppopderm King's College

Project runs from 2022 - 2027
Click to expand...
So much of this nonsense would simply vanish the day it's possible, if it's possible, to simulate experiences. They're trying so hard to make the square thing fit in the round hole, and it's all for nothing.
 
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