UK: Official Complaint Lodged with the DHSC re: Discrimination in the ME/CFS Delivery Plan Process

Back in the 70's I was told it was caused by stress.

'Hostile environment' and harm is probably the top reasons which, if asked, adult patients would give for disengaging with the NHS.

 

Have they yet plumbed the depths to which they are prepared to sink to protect the PACE trial?


After 16 years as a sufferer of this illness, I did not think it possible to witness ME/CFS patients being treated with more utter disdain by the medical profession or systemic injustice and institutional abuse by the state than I have already personally experienced and witnessed.

I was wrong.

This first of a series of questions tabled by Ben Spencer demonstrates it https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-34#post-559872

The administrative apparatus of the State and the Psychiatric profession appear to have sunk to a new low in connection with this illness, the official name for which in the UK is, and has been for the last 3 years

myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS)

The first paragraph of the NICE Guideline ng206 published 29 October 2021 (eventually) states the guideline:

“covers diagnosing and managing myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) in children, young people and adults. It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier. It includes recommendations on diagnosis, assessment and care planning, safeguarding, access to care and managing ME/CFS and its symptoms.” Overview | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE

Firstly, there is not, nor has there ever been, an ‘or’ in the name of the illness.

The previous 2007 NICE Guideline, which the Royal Colleges were happy to comply with, had the name in the 2007 Guideline the other way round as evidenced Overview | Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management | Guidance | NICE (archive.org)

See comments regarding the 2009 Judicial Review above.

Everyone involved in or associated with this illness knows exactly what the very deliberate use of the word ‘or’ is meant to signify.

In my opinion, it is there to separate out Chronic Fatigue Syndrome to protect the PACE trial, and given the nature of the first question regarding NICE an prelude to an attempt to revisit the entire Guideline.

If that proves to be the case, then it is an abuse of power by attempting to exercise undue influence over Parliament. If THAT were the other way around, they would kick up a hell of stink.

This Editorial in the BMJ perfectly demonstrates the very deliberate confusion created by such terminology, never for the patients’ benefit. Updated NICE guidance on chronic fatigue syndrome | The BMJ

The state and the medical profession know very well that:

• Chronic fatigue is a state of tiredness with anyone in any situation can experience. One of the British Army’s piece of clothing kit is called ‘fatigues’ for a very good reason. It bears no relation at all to Chronic Fatigue Syndrome.

• The / between the two names is a compromise when Psychiatrists wanted to rename the illness known as ME, Chronic Fatigue Syndrome. It has never been a happy compromise but has always one which has been forced on the patients.

Thanks to @bobbler for highlighting.

The Regulation 28 Prevention of Future Deaths report following the inquest into the death of Maeve Boothby O’Neill was issued on 7 October.

3 days later on 10 October Ben Spencer Shadow Minister for Health and Social Care tabled multiple written questions of the Secretary of State for Health and Social Care. The link to all of them begins with this one https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-34#post-559872

I researched Ben Spencer MP, as it was not a name I was familiar with.

As recently as 9 September 2024 in a debate in the HC on the draft statutory instrument “Human Medicines (Amendments Relating to Naloxone and Transfers of Functions) Regulations 2024” to amend the Human Medicines Regulations 2012 to expand access to naloxone: a lifesaving medication that reverses the effects of an overdose from opioid drugs.

Dr Ben Spencer stated:

Medicines - Hansard - UK Parliament

Dr Ben Spencer is a psychiatrist interested in “Chronic Fatigue Syndrome Research and health services”. I’ve deliberately put it that way round in order to demonstrate how this works. Ben Spencer (politician) - Wikipedia

Ben Spencer MP, Runnymede and Weybridge - TheyWorkForYou

Spoiler: Dr Ben Spencer's Topics of Interest

Topics of interest

• Department of Health and Social Care

• Department for Work and Pensions

• Department for Environment

• Food and Rural Affairs

• Department for Transport

• Department for Education

• Chronic Fatigue Syndrome: Health Services

• Kickstart Scheme

• Coronavirus: Vaccination

• Chronic Fatigue Syndrome: Research

• Respiratory Syncytial Virus: Vaccination

Currently held offices

• Shadow Minister (Health and Social Care) (since 19 Jul 2024)

Other offices held in the past

• Member, Finance (No.2) Bill Committee (15 May 2024 to 21 May 2024)
• Member, Renters (Reform) Bill Committee ( 8 Nov 2023 to 28 Nov 2023)
• Member, Draft Mental Health Bill (Joint Committee) (11 Jul 2022 to 30 May 2024)
• Member, Marriage and Civil Partnership (Minimum Age) Bill Committee ( 5 Jan 2022 to 12 Jan 2022)
• Member, Approved Premises (Substance Testing) Bill Committee ( 8 Dec 2021 to 15 Dec 2021)
• Member, Work and Pensions Committee ( 2 Mar 2020 to 30 May 2024)

Perhaps both parties could remind themselves that indeed they do work for us, and act in accordance the regulations on candour instead of this contemptuous behaviour over the graves of sufferers! How dare they, even after this 2018 debate brought by Carol Monaghan MP

Spoiler: Merryn Croft

“ME receives practically no biomedical research funding, which I will come back to. Because of the misunderstanding of the condition, the treatments available are often more damaging to the person than no treatment at all.

Merryn Crofts was just 15 when she experienced hives and swelling in her joints after a family holiday in Majorca. Tests revealed that she had contracted glandular fever. Despite dozens of medical appointments, Merryn’s condition deteriorated; she suffered breathing problems, exhaustion and excruciating hypersensitivity to touch, light and sound. She was eventually diagnosed with ME. This once bright young woman was forced to wear an eye mask and suffered from severe migraines, brain fog, slurred speech and persistent infections. Stomach problems and difficulties swallowing meant that her weight plummeted to just 5½ stone. Merryn was eventually fitted with an intravenous nutrition line but was given a terminal diagnosis in 2016. Merryn wrote in her blog:


“Having severe ME, is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day. It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors, and feeling worse about saying no every time someone asks again. Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.”


Merryn died on 23 May 2017, just days after her 21st birthday.”

I now need to rest in preparation for the end of the month.

I leave these mainstream media articles published in the last 2 days which are taken from other threads on the forum:

My daughter died of ME. I had to fight the NHS for answers (thetimes.com)

My daughter died of ME. I had to fight the NHS for answers (archive.ph)


Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot | The Guardian

 

Although not surprised of course

 

Not entirely sure but I think this may just be a category used by the "TheyWorkForYou" site to categorise politicians' questions, rather than an indication by the politician themselves of their areas of interest.

As far as I can tell from a quick search he has never published on ME/CFS. However, he did work for several years at the Maudsley, followed by three years at the KCL Department of Psychological Medicine where one of his PhD supervisors was Hotopf.

 

Thanks for that added info. On the Wiki link he is stated as being a psychiatrist.

 

Following @Nightsong 's research, and the notes of MEAction from the May 2024 of the meeting https://www.s4me.info/threads/united-kingdom-news-from-forward-me-group.16000/page-13#post-560139

which in turn led me to this BACME document; BACME-An-Introduction-to-Dysregulation-in-MECFS-1.pdf

I eventually discovered where the 'or' used by Dr Ben Spencer in his phrasing of "myalgic encephalomyelitis or chronic fatigue syndrome" contained in each of his recent multiple questions may be emanating from.

This is discussed in the following thread and quoted here for ease of reading:
https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-34#post-560517

This is what I further discovered:

I see what Prof Chris Ponting was right in his interview with Channel 4 news referred to in my letter to my MP. Genomics research in this illness is 20 years behind the times.

 

Now to turn attention to the question of the predominence of women with this illness and discrimination on the grounds of sex, 'hysteria' and mysogony.

This is from the Royal College of Surgeons in 2016 [accessed today]. It is advice concerning the question of consent following the Montgomery v. Lanarkshire Healthboard case from then QC, now KC Nigel Poole. It discusses autonomy of the body.

In it he states:

A common law right to autonomy of treatment — Royal College of Surgeons

Edited to disentangle my words from his.

My bolding is where the DOLs and sectioning authority is derived from, I suspect

 

Currently now out of words today so this is my initial response. Stevie Nicks' latest song and video prompted by the removal of abortion rights in parts of the USA. Stevie is now 76.

For those particularly intolerant at the moment, this video has flashing lights through much of it, and although it starts fairly quietly ramps up the volume about halfway through. Also, don't have a scooby-doo about how to embed a video so it's just a link.

Stevie Nicks - The Lighthouse (Official Music Video) - YouTube

 

Yesterday I read Professor Chris Ponting's article in The Conversation. Today I began to read through some of his reference links.

Haven't finished yet but this was one of them.

Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occup Med (Lond). 2005 Jan;55(1):20-31. doi: 10.1093/occmed/kqi013. PMID: 15699087.

I only have access to the Abstract.

When was the PACE trial funded, and when did it begin?

That's one part of my claim proved right there:

 

Funded in 2003, recruitment began in 2005, first results published in Lancet in 2011. So the trial was already underway when they wrote that 2005 article.

 

(ahem)

 

Thought so @dave30th, but couldn't remember and don't have energy to search for today. Cheers.

 

Lovely jubbly @Nightsong cheers. I may be some time reading this.

 

I just read bits of the paper

Thanks @NelliePledge I'll check it today.

 

Clearly, very clearly, I did not give informed consent at the end of 2011. I cannot be the only one. Concerns raised in the 2009 Judicial Review by the Claimants and Tanya Harrison established in reality. That's another part evidenced but no doubt their defence will be to raise the 'therapuetic exception'.

 

This is not legal advice, you should seek independent legal advice from a professional law firm if you believe you may have a potential claim.

Formal legal advice which I shall be taking will confirm the following or not.

Today 22 October 2024, the statutory time limit for pursuit of a claim for medical negligence, in option 1: my potential claim, begins ticking for 3 years.

This is separate to any human rights claims.

The standard time limit for pursuing a cause of action (a claim) is 6 years in personal injury from the time the injury occurred.

Although it is more than 6 years past the point of causation in my personal case, following the harm suffered by me (attendance and completion of the NHS activity management and mindfulness CFS/ME Management Course) - today is my point of evidence based knowledge which has the potential to extend the statute of limitation in pursuing a claim for medical negligence for 3 years from today.

The legislation, which I have checked today for updates, is:

Limitation Act 1980 An impossible amount of reading. Don't bother unless you have the energy not only to read, but to understand and interpret.​

Barristers Chambers helpful summary explanation as at the beginning of this month.

Summary of Section Limitation Act 1980 - Deka Chambers - Barristers Chambers​

Case law referenced by Barristers on circumstances where statutory time limits for bringing an action exceeded the various time limits.

Wilkins v University Hospital North Midlands NHS Trust [2021] EWHC 2164 (QB) (30 July 2021)
​

My summary of the case:

Chap has knee operation, followed by continued site infections for years, has revision of surgery and eventual amputation. Case was, at what point did the Claimant have knowledge to satisfy the extended 3 year limitation period? Judge says all limitations exceeded but allows case to proceed anyway using his discretion on the grounds of equity in all the circumstances.

 

I've raised a question. https://www.s4me.info/threads/a-sys...ome-2005-cairns-r-hotopf-m.22455/#post-561381

 

Info urgently requested - does anyone know if this in bold in the quote below

now 7 years ago, and referred to in this paper which I mentioned in post #26 above

Morris G, Maes M, Berk M, Puri BK. Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop? Metab Brain Dis. 2019 Apr;34(2):385-415. doi: 10.1007/s11011-019-0388-6. Epub 2019 Feb 13. PMID: 30758706; PMCID: PMC6428797.​

Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

has been published, yet?

 

Today I've re-read the letter from the PACE trial authors and anor in the Guardian yesterday titled A dualistic view of illness doesn’t help those with ME/CFS | ME / Chronic fatigue syndrome | The Guardian What stands out the most, for me, is the only linked example to shore up any of their assertions is the 'Anomalies' paper. This is completely opposite to the approach taken by a responsible journalist to cite the source, of which there are a large amount, in his article to which they are responding.

This mind and body discussion reminded me of a similar legal principle I learned many decades ago.

You'll notice from the link to the 2009 Judicial Review, that a chronology of relevant facts and events is always prepared.

This post acts as a placeholder for the initial start of the chronology which, when completed, will form part of the information submitted to specialist law firm for advice. I shall prepare it document form which I shall upload it when completed.

PREAMBLE

The first clinician guidance on treating patients with CFS by Wessely, S, David, A, Butler, S, and Chalder, T was published in the Journal of the Royal College of General Practitioners, Jan 1989
Management of chronic (post viral) fatigue syndrome
https://www.simonwessely.com/Downloads/Publications/CFS/4.pdf

The first NICE guideline was published in 2007 (detailed discussion on page 2 of this thread). I shall incorporate this into the chronology when I am more able. This chronology follows the Judicial Review in 2009, the release of the PACE trial data and it's re-analysis.

Considering numerous reports and petitions from patients, particularly second-hand reports of the experiences of severe and very severe patients in hospital, from their families - it is the 1989 guidance which may be currently being followed, particuarly in hospital, especially with severe and very severe patients suffering from malnutrition and light, sound and touch sensitivities.

Note: See approach suggested by Prof Sharpe in February 2021 in the chronology below.

The revised NICE guideline Oct 2021 is currently not being followed by the majority of NHSE [insert survey evidence AfME]

CHRONOLOGY

September 2017

NICE announce “After considering all the evidence and views of topic experts, we decided that a full update with modified scope is necessary for this guideline.”
Updated NICE Guideline on ME/CFS Delayed
​

February 2018

Letter of complaint by the late Robert Courtney to Cochrane regarding...​

October 2018

Response from Cochrane "This review is subject to an ongoing process of review and revision following the submission of a formal complaint [by the late Robert Courtney] to the Editor‐in‐Chief."​

February 2019

Morris G, Maes M, Berk M, Puri BK. Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop? Metab Brain Dis. 2019 Apr;34(2):385-415. doi: 10.1007/s11011-019-0388-6. Epub 2019 Feb 13. PMID: 30758706; PMCID: PMC6428797.
Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

Where is the publication referred to?
​

August 2019

• Cochrane

"This published note, generated in August 2019, relates to the review version published on 2 October 2019 (doi.org/10.1002/14651858.CD003200.pub8).​

• Morris G, Berk M, Maes M, Carvalho AF, Puri BK. Socioeconomic Deprivation, Adverse Childhood Experiences and Medical Disorders in Adulthood: Mechanisms and Associations. Mol Neurobiol. 2019 Aug;56(8):5866-5890. doi: 10.1007/s12035-019-1498-1. Epub 2019 Jan 26. PMID: 30685844; PMCID: PMC6614134.
  Socioeconomic Deprivation, Adverse Childhood Experiences and Medical Disorders in Adulthood: Mechanisms and Associations - PMC
  
  

​

2 October 2019

Cochrane published the current Version:
Exercise therapy for chronic fatigue syndrome
Lillebeth Larun, Kjetil G Brurberg, Jan Odgaard-Jensen, Jonathan R Price​

2 October 2019

Statement published by Cochrane on the same day as publication of the review:
Publication of Cochrane Review: ‘Exercise therapy for chronic fatigue syndrome’
"Today, Cochrane publishes an amended version of the Review. In the last nine months, this Cochrane Review has been modified by the review’s authors and evaluated by independent peer reviewers and editors. It now places more emphasis on the limited applicability of the evidence to definitions of [ME/CFS] used in the included studies, the long-term effects of exercise on symptoms of fatigue, and acknowledges the limitations of the evidence about harms that may occur.​

Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser, commented on the publication of the review, “Cochrane recognizes the importance of providing the best available evidence on interventions for ME/CFS to enable patients and clinicians across the world to make well-informed decisions about treatment. This amended review is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s. Having heard different views expressed about the evidence base for this condition, we acknowledge that the publication of this amended review will not resolve all the ongoing questions about this globally important health topic.​

We have decided, therefore, that a new approach to the publication of evidence in this area is needed; and, today we are committing to the production of a full update of this Cochrane Review,..."
​

October 2019 - 2024

The complaint process with Cochrane has not concluded. For more detailed information please see S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review | Science for ME
​

December 2019

NICE
"it was announced that the publication date would be delayed from 14th October 2020 to 9th December 2020 to ensure that the committee would have sufficient time to consider both the findings from a call for evidence, and from two additional pieces of group work centering on children and young people with ME/CFS, and people with severe ME/CFS."
Updated NICE Guideline on ME/CFS Delayed​

August 2020

Almutairi B, Langley C, Crawley E, Thai NJ. Using structural and functional MRI as a neuroimaging technique to investigate chronic fatigue syndrome/myalgic encephalopathy: a systematic review. BMJ Open. 2020 Aug 30;10(8):e031672. doi: 10.1136/bmjopen-2019-031672. PMID: 32868345; PMCID: PMC7462162.

Using structural and functional MRI as a neuroimaging technique to investigate chronic fatigue syndrome/myalgic encephalopathy: a systematic review - PMC​

November 2020

NICE
"By 10th November 2020 a draft guideline was produced entitled “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management” and a finalised publication date of 21st April 2021 mooted."
Updated NICE Guideline on ME/CFS Delayed​

February 2021

Slide presentation given by Prof Michael Sharpe at a SwissRe conference swiss-re-institute-event-secondary-covid19-impacts-presentation-michael-sharpe.pdf​

October 2021

NICE
Public Letter to RCPCH: DwME Associate and Neurodisability Paediatrician Dr. Ben Marsh calls for explanation - Doctors with M.E.
​

October 2021

NICE
After the delay the revised Guideline was published on the 29th Overview | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE

​

ETA: This has been updated
ETA: Updated 25 Oct 2024