United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

I've highlighted this this morning referening the CMO 2002 United Kingdom: Science Media Centre (including Fiona Fox)

• Here's the parliamentary brief which set up the review Chronic Fatigue Syndrome/ME (parliament.uk) Research briefing 1998

"Summary of main points This paper discusses the controversy surrounding chronic fatigue syndrome/ME.

This is a clinically diagnosed condition with a variety of symptoms, prominently chronic disabling fatigue which is made worse by physical or mental exertion. Other symptoms include impairment of short term memory and concentration, sleep disturbance, muscle and joint pain and a profound malaise. The illness has a long history, but in spite of this the cause and pathology of the syndrome remain undetermined, generating much debate in scientific literature. There may, in fact, be a variety of different causes for the syndrome which involve a complex interplay of factors.

Researchers are currently examining a range of factors which may play a part in triggering the illness or perpetuating symptoms. These include virus infection, immunological disturbances, changes in muscle energy production, and brain dysfunction (changes in hormones, chemical transmitters and blood flow). Psychological and social factors that may play a part in predisposition to and maintenance of ill health and disability in some cases are also being considered. Uncertainty about the cause of the condition and effective treatment leads to frustration amongst adult and child patients who may suffer debilitating ill health over a number of years. Patient groups are dismayed by misunderstandings and prejudice which they believe surround the illness and have engendered a climate of disbelief which adds to the distress experienced by the sufferer. Difficulties may arise in obtaining appropriate schooling and disability benefits. However, there is now a consensus of opinion that CFS/ME is a definite clinical condition.

Several reports issued since 1994 have raised the profile of the issue and have informed the debate. Differing emphasis on the physiological and psychological aspects of the condition have given rise to controversy. The 1996 report of the Royal Colleges1 laid considerable emphasis on psychological factors which may influence the illness and this gave rise to strong criticisms from some commentators. The Department of Health has set up a working group on CFS/ME which will aim to promote a better understanding of the illness, to produce advice and information on aspects of clinical management, and to set out the evidence on which this information is based.

1 Chronic fatigue syndrome. Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners October 1996/CR54, Revised 1997"​

• CMO-Report-2002.pdf (meresearch.org.uk)

Sir Liam Donaldson was CMO when the report was published.

Dr William Weir and Dr Charles Shepherd were involved as was Wessely.​

• Gibson Inquiry 2006 Invest in ME - Gibson inquiry into ME

Dr Ian Gibson MP (Chair) Dr Richard Taylor MP (Vice-Chair) Ms Ann Cryer MP (Secretary) Rt Hon Michael Meacher MP Dr Des Turner MP Mr David Taylor MP Lord Turnberg The Countess of Mar Baroness Cumberlege​

• Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (investinme.org) NICE 2007

• Revised NICE Guideline 2021 Overview | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE

An infrequently quoted part of this Guideline is in the Overview:

"All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.

Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties."

When reading these extensive documents together a clear picture emerges and a question arises in my mind:

What in the 'national priorities for funding and developing services' is allowing clear cases of severe ME/CFS to be repeatedly and consistently abused in this way?

ETA:

World Alliance for Patient Safety (who.int)
Sir Liam Donaldson - “To err is human, to cover up is unforgivable, and to fail to learn is inexcusable.”

ETC:

Dr Nigel Speight was also involved in the CMO report 2002.

 

Excellent point @tuppence

 

To be fair, I suspect that all that was said about following Dr Weir's diagnosis was that Dr Weir is not the NHS consultant responsible for the patient's care. If a patient is having care under the NHS then there has to be a designated person in charge and being in charge of a case has to include the ability to make whatever diagnosis they believe to be correct.

If I was in charge of a patient's care and a colleague suggested that my diagnosis was wrong and that they should be treated otherwise I was entitled, indeed had a responsibility, to make up my own mind on the evidence. If you are an aircraft pilot and another pilot comes in to the cockpit and tells you to point the plane downwards you have the right to say no thanks.

The problem lies elsewhere, I think. It lies in informed consent. The consultant looking after the patient is obliged to explain, as part of informing consent, on what evidence they make a diagnosis and why it might not be another diagnosis. They also need to explain the evidence base for a course of action if it does not fit with a diagnosis that the patient already has - simply as a matter of providing reasonable explanations in the context of the patient's understanding.

 

True.

 

However, applying for DOLs gets round the problem of having to inform the patient of any alternative diagnosis, obtaining consent and imposing any 'treatment' they like to the process.

 

I think you're suggesting that a coroner, having reviewed the evidence, couldn't put out a circular highlighting initial concerns re need to provide adequate nutrition and difficulties/complexities in ME/CFS.
Alterative wording - I think you're suggesting that a coroner cannot take steps to protect people in the interim - I doubt that's true even if it's likely to be the outcome/reality! Depends whether we get a "jobs worth" or a Jonathan I guess!

 

I wonder if this at the root of the problem with these hospitalisations? Somatic Symptom Disorder - StatPearls - NCBI Bookshelf (nih.gov) Last Update: March 13, 2023.

It certainly ties in with the increase in such cases last year and this.

"Introduction
Somatic symptom disorder (SSD) is a recently defined diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5). It is the manifestation of one or more physical symptoms accompanied by excessive thoughts, emotion, and/or behavior related to the symptom, which causes significant distress and/or dysfunction.[1] These symptoms may or may not be explained by a medical condition. The two major changes to the DSM-IV criteria included eliminating the requirement that somatic symptoms be organically unexplained and adding the requirement that certain psychobehavioral features have to be present to justify the diagnosis. The new criteria also eliminated somatization disorder, undifferentiated somatoform disorder, hypochondriasis, and pain disorder from the previous definitions. These revisions were intended to increase the relevance of SSD and its use in the primary care setting.

Etiology
Somatic symptom disorder (SSD) arises from a heightened awareness of various bodily sensations, which are combined with an inclination to interpret these sensations as indicative of medical illness. While the etiology of SSD is unclear, studies have investigated risk factors including childhood neglect, sexual abuse, chaotic lifestyle, and history of alcohol and substance abuse.[1] Furthermore, severe somatization has been associated with axis II personality disorders, particularly avoidant, paranoid, self-defeating, and obsessive-compulsive disorder.[2] Psychosocial stressors, including unemployment and impaired occupational functioning, have also been implicated".

 

Except that a deprivation of liberty order is subject to scrutiny, including routine proactive scrutiny from time to time.

My understanding is that in these cases DOLs have been successfully challenged.

 

This is the sort of garbage pseudo-evidential base that needs to be consistently challenged in clinical care. They actually say it - the ethology is unclear. It is guesswork. it is not a basis for clinical decision making. It is irrelevant to it. What are needed are clinical diagnostic categories without speculative assumptions about ethology for which evidence for management can be gathered.

 

Thank you. An excellent collection of documents showing the continuing controversy and confusion around ME/CFS over the years. A very clear picture does emerge and the question you raise is a good one.

What is not reflected in the documents (as far as I recall) is the Political environment in which the debate around the diagnosis, causes and treatment of ME/CFS took place. Simply put (and I hope not an oversimplification) the psychological view of ME/CFS provided Funders and Commissioners of Health Care with a cheap and convenient answer to an intractable health problem which had no diagnostic marker and was chronic without being obviously fatal or (if you looked away) severely disabling.

The Psychological view also meant that ME/CFS services would not be clogged up by these ME/CFS patients who with the expert help provided by the Psychological view could be put back on their bikes and left to get on with it. The problem with this was it was all a Con just sweeping the problem under the carpet, until the bulge became too big and the health care Con exposed.

The problem of funding and developing services in a shrinking health economy still remain and the medical/health care ‘group think’ that reigned supreme before the latest 2021 NICE Guidelines on ME/CFS, will take some time to change.

We individually and collectively can help that change by asking for the treatment and services that are acceptable to us to be provided. They should be in line with the criteria set out in the new NICE Guidelines, which validate the diagnosis and treatment of ME/CFS as a physical illness not a mental or psychological illness. They also set out the best medical management of the illness, that can currently be provided.

The life and death considerations that we are discussing in this thread does magnify all these issues and can for Health Professionals and others raise questions about the patients mental capacity and how best to keep them safe.

Which raises the question of how patients can demonstrate mental capacity to choose their health care. All the guidance I have seen is to prepare for these scenarios well in advance and from personal experience I can attest to that as probably being the best case. It involves thinking about your own ‘end of life care’ and what you would want it to be and writing it up in an Advance Directive of some sort or appointing a trusted other as your health care advocate/proxy. Also we found it important to secure a strong and well supported diagnosis of Physical ME/CFS and Food and Chemical intolerances from more than one Doctor both at Consultant and GP level. The patient developed the relationship with those Doctors, by sometimes agreeing to try their drugs/therapies but with a clear understanding of the circumstances in which the drugs/therapies would be discontinued. Needless to say all treatments except avoidance worsened symptoms and were withdrawn by the prescriber. We ensured this was all recorded in the Patients medical notes by GP’s.

All of this meant we had a clear history of a strong physical diagnosis of both ME/CFS and the feeding difficulties ( a term I dislike) and importantly a history of having the mental capacity to understand the diagnosis and treatment objectives and whether they were being met or not.

The patients Advance Directive also gave formal and legal confirmation that Mental Capacity was present for the care and medical treatment that was set out as consented to and not consented to when end of life care became a reality. For belt and braces we also drew up a Care Plan as soon as the ‘end of life’ possibility actually presented, setting out the patients long standing (and often confirmed by many authorities) physical ill health diagnosis, which in the current circumstances had become life threatening. The patient confirmed their understanding and acceptance of that diagnosis and recognised the treatment difficulties it presented to health professionals. It also informed the health professionals of what care would be acceptable and what would not at that time.

This level of preparation might seem onerous and difficult to achieve, but anything you, your carers and trusted health care professionals can do towards it, will help ensure the preferred health care you consent to and your mental capacity at the time of giving that consent, will be foremost in the minds of those providing your preferred care when you most need it.

 

Can we/Millie’s supporters get the Coroner in Exeter to do that now before the inquest, so it can help?

https://www.devoncoroners.org.uk/

 

And anyway the criteria for a "functional disorder" are: we can't explain the illness with a known diagnosis that we recognize, so it explains itself by itself. They can easily justify their diagnosis, it requires no explanation or evidence, only absence of evidence that it's a different thing. It basically acts as a wildcard in a card game, which can win the game all by itself by simply being played, and it's always at hand.

Consent becomes irrelevant the second psychosomatic ideology comes into play. All the need to explain a diagnosis becomes irrelevant, because it requires no explanation.

 

Vey good question - perhaps respond to the main UK charities and ask that they highlight their concerns to the coroner i.e. that nutritional support should be provided & in a way which fits with the particular needs of the patient --- contact someone like Sajid Javid --- I'm conscious though that others are better informed and likely have better (& different) ideas re how to address this e.g. @Jonathan Edwards

 

I have tested this at law very many years ago with regard to a diagnosis of ME/CFS as a physical illness made by Dr Weir which later medical authorities wanted to change to Psychological CFS. They were unsuccessful in being able to change Dr Weirs physical diagnosis as they could not explain to the Court on what evidence they relied to make the existing physical diagnosis untenable. In fact they proved their own psychological attribution of ME/CFS to be unsubstantiated at that time and nothing has happened in the interim to change that fact.

As I understand it a patient with a diagnosis of ME/CFS from whatever medical authority, has always had the right to choose\consent to the medical view and treatment of that diagnosis, physical or psychological, that was acceptable to the patient. A fact recognised and spelt out in the now replaced 2007 NICE Guidelines which confirmed the patients right to refuse psychological and any other treatments.

As recently as less than 5 years ago in ‘a life and death situation’ further attempts were made to change Dr Weirs diagnosis of a physical explanation of the major symptoms. That attempt was also unsuccessful as we pointed out Dr Weirs (and other medical authorities) physical diagnosis of the patients ill heath was a ‘reasonable’ evidenced diagnosis, understood by and acceptable to the patient. We asked them to provide evidence that would explain why this previous ‘reasonable’ physical ill health diagnosis as an explanation of the patients symptoms should be set aside. They did/could not do so and the physical ME/CFS diagnosis/explanation stood as did the patients right to refuse or consent to/accept any treatments offered.

The new NICE Guidelines introduced since that time fully accept the ‘physical’ illness labelled ME/CFS as a ‘reasonable’ diagnosis and an explanation for the symptoms experienced/reported by patients. Our experience has been that you can accept/consent to this physical ME/CFS diagnosis as a valid explanation of your ill health and have it respected. It is up to you to decide whether any other suggested diagnosis/treatment is appropriate for you from the evidence and explanations provided.

 

Maybe in each case the first thing to do on attending hospital is to request reasonable adjustments, based on PEM and sensory.
These are reasonable, for example it’s perfectly possible for light and noise to be minimised in a hospital. It’s perfectly possible to feed someone at 5% incline. These aren’t unreasonable requests.They cost nothing and are made for other patients.
A personal private ward would be an unreasonable request.
One day one, if these requests and their reasons, citing the ongoing symptoms and EqAct 2010 are lodged with PALS as urgent, it would provide a good “paper trail” even if progress is slow. It would be difficult for the hospital to argue they were unaware they were doing harm at a later date.

After July’s inquest one would hope some action is taken.

None of this will help the women in hospital right now, though.

Is there any way round this “nobody says/believes you have ME, so we’ll treat you as if you don’t” attitude? We need a way for ME to supersede any other diagnosis. If I had symptoms of paranoid delusions but wasn’t diagnosed, would they ignore that? (Probably would tbh)

 

Wow thank you for sharing your story. I’m sorry you’ve had to fight that hard.

 

Tuppence has given a very cogent account of how it is possible to avoid other diagnoses.

I have a slightly different suggestion of how to approach things, although I appreciate that there may be various ways to do it.

My understanding is that ME/CFS is an entirely pragmatic clinical diagnosis that can be made as a matter of fact - in that the patient conforms to the criteria. It is frequently possible in medicine to give several diagnostic labels to the same clinical condition so there may be other categories that apply. 'Post Covid illness' might apply if the illness occurred post Covid.

But virtually all the alternative diagnoses that have caused trouble in these cases entail a judgment on causation, and in virtually all cases there is no scientific evidence that would allow one to be sure of that causation in an individual case. For most the causation is highly speculative in any case.

Thus, 'functional neurological disorder' actually entails in its definition a claim that bodily perceptions or movements are due to mental malfunction. As does pervasive refusal syndrome and so on. In a court of law it should be fairly straightforward to show that no reliable evidence for these diagnoses can be established for any particular case.

Which leaves one with a factual diagnosis of ME/CFS. If that diagnosis were to depend on a claim of some causation or mechanism it would be weaker - potentially as weak as the psychological diagnosis. But the combined ME/CFS term has conveniently removed it from any causal entailments that the older contributing terms might have collected. It is not an encephalomyelitis. It is not a chronic fatigue subset of MUS (again either implying a mental dysfunction or actually not being a diagnosis at all).

 

Some of these posts should probably be under the main thread on nutritional problems but it is quite difficult to jump back and forth in the ongoing context of active cases.