Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

This is 'institutionally embedded medical error' and I'd bet dollars to donuts it is implicated in a significant portion of medical harm and death.

Aside - I had a chat this week with a 'patient safety institute' that seemed solely focused on patient safety in hospitals and pharmacies. When I asked about monitoring of patient safety in the GP office, specifically around MUS as Adrian describes, I was given a non-answer and I got the impression it was not on their radar at all. (Mind you, this same institute has organized an all day meeting for members with an agenda of 3 important complex decisions to be made in the morning in an hour(!), and ending the day with 'determining how we will process and make decisions as a group'. So I'm not too confident they've got their shit together.)

 

I agree that there is an increasing issue with GPs thinking that it is OK to make an assumption of a psychological basis rather than exclude specific differentials. However, the 2007 NICE guidelines are to my mind reasonable on this, and I am pretty sure that any changes this time are likely to be towards some further safeguards - that was the atmosphere at the scoping meetings.

What I think may need to be recognised more is that the real problem may lie in RCGP educational material - the stuff the Brine said was addressing the problem (!!). GPs, now with their own academic departments and professors, are feeling they are experts on everything rather than Jacks and Jills of All Trades. The GP on the East London MUS website video basically says that evidence is not that important, and specialists are not that important, what matters is doing mind and body all in one.

 

I think it is important to get our facts right. Where does this come from @Diane O'Leary ? Have you worked in the NHS?

ME is quite often managed by physicians. In London there is a neurologist running the service at UCH. An immunologist has been running it at St George's. Within our rheumatology department physicians would see pretty much the full spectrum of pain related disorders. None of these people treat ME or other unexplained chronic illnesses as 'mental health' even if they subscribe to a BPS terminology.

And in fact the psychiatrists involved like Sharpe are mostly 'liaison psychiatrists who are specifically committed to combining medical and psychiatric needs.

So that statement is I am afraid factually wrong. Saul Berkowitz at UCH is constantly asking when should patients have this and when that.

And what is this 52%? I think that sort of figure comes from the number of attendances at clinics not the number of cases. Whatever you include in MUS it is a very small proportion of the number of ill people. It is just that they go to the doctor ten times as often - for whatever reasons, but very often because nobody has given them an answer I suspect. So it is in no way as common as all medical diagnoses combined.

I have serious reservations about the list of 'other groups'. I am not personally convinced that 'fibromyalgia' is a useful term beyond chronic unexplained pain. There is absolutely no agreement between physicians about how many people have FM. Ehlers-Dalos syndrome is a rare disorder that probably has nothing much to do with pain or fatigue. It is just that certain fringe physicians have built an empire out of over diagnosing it. Mitochondrial disorders are exceedingly rare. They often get missed but nobody has suggested they should be treated as mental disorders - they are in a completely different category in this discussion. Nobody knows what long term Lyme means if anything. I have no idea where the figure of 51% of autoimmune disease patients comes from but I suspect from physicians who have pretty little idea what autoimmune disease is.

We are all agreed that there is a big problem with people being treated as 'psychosomatic' or 'BPS' or 'all in the mind' but the debate needs to be had in the context of the actual facts. Otherwise, as has already been said, we are rolling a ball in front of Simon Wessely standing outside our own open goal.

 

Agreed. It is important to get facts right.

This would not be factual. Quite a few people know, if by long term you mean late term. A large number of clinicians know. Many researchers know. Hundreds of thousands of Lyme patients know.

 

My question is a little out of topic, but I would be interested in hearing your take on this. What exactly makes ME/CFS a useful syndrome to research, but fibromyalgia not or less so?

I think things could have gone differently, and CFS could have been defined by Reeves Bleijenberg and other Wyllers as the extremity on a fatique continuum. They could have defined CFS as a high score on a fatigue scale, much like Fredrike Wolfe has defined fibromyalgia as a score on a polysymptomatic distress scale. I think this is what I fear the most that ME/CFS will wither as a clinical or research entity. I thought something like this was happening, unjustly, to the fibromyalgia syndrome in the last ten years.

 

But that's the point - long term has no specific meaning. And I would be doubtful there is agreement even on 'late term'. Like Ehlers Danlos it probably depends largely on the whim of this physician or that.

 

A good question. I am not sure I know how to articulate my reasons clearly. Maybe the most important thing is that ME/CFS looks to be a tight enough cluster of specific symptoms to warrant being called a syndrome with the implication of some common pathway of disturbed physiology. The cluster includes PEM, unrefreshing sleep, brain fog, sensory sensitivity.

Fibromyalgia, on the other hand, is used so indiscriminately by physicians and with so little consistency that it seems to me to have become too debased a diagnostic currency to be informative. That does not mean there are not people with chronic severe pain and that there may be a common physiological pathway for at least some.

Of the few people I have met socially with a diagnosis of ME/CFS it has seemed to me that there is no great difficulty seeing that as being the most useful description of their illness. Of the dozens of people I came across with the label of fibromyalgia as a doctor I never understood what they had in common, other than the fact that their symptoms were considered 'unexplained' by one doctor or another but not necessarily both.

 

Sorry, my brain wrote late stage but my hands typed late term.

There are no set time constraints, if that's what you are getting at. And stages can and do overlap re: symptoms.

But, there are three defined stages and late stage is last. Late stage is almost synonymous with long term in that the first two stages happen fairly quickly. As for what one would mean by long term Lyme, it's not cast in concrete but I imagine it would include anyone who is refractory to conventional treatment, almost by definition, or someone who does not get treated and cannot resolve the infection. This could be someone sick for three months or three years or longer. Some of those kids from Lyme, CT back around 1975 were sick for five or six years. I'm pretty sure some never fully recovered.

By the late 1970's they KNEW what happened to kids with a specific strain of Lyme, B31 (retrospectively, of course, re: the strain and that it was Bb). If it degenerated to late stage, those kids developed what was thought to be juvenile arthritis, along with a constellation of other symptoms. So researchers quickly discovered what might happen in late stage, long term cases, even though at the time they didn't know what the causative agent was. Eventually, they also found out that different strains wrought different symptoms in late stage. Ditto and on a grander scale on a species level.

One of the problems hampering understanding things today is there are more strains and species - or at least more are being discovered - and as the old wild ones have likely morphed too, so too are symptoms changing. This is compounded by the fact that very few people are looking at late stage. The market is driven by dollars, and the dollars are in early Lyme diagnostics - and not surprisingly politics play a role.

So there are people who know long term Lyme.

 

I’m not sure this is fair to say either.

My local, King’s, is run by psychiatry. I was assessed for the service by a psychiatrist who gave me a diagnosis of “persistent physical symptoms” and medically unexplained symptoms. I have not seen a physician at any stage.

A friend who was discharged from the Royal Free last year said her care was dealt with exclusively by psychiatrists, and that also seems to be the case with Dr Bansal’s replacement at the place in Surrey where Dr Bansal has just retired, though I may be wrong on that.

I think it’d be good to hear about what people’s experiences are across the UK.

 

Dr Deary didn't respond, and the presentation has been taken down - at least from its original link (though I will likely have a copy on file).

From "another place", from January 2017:

Thread: MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

https://forums.phoenixrising.me/thr...ening-across-the-uk.48710/page-20#post-805809

-------------------------------------------------

By email:

January 25, 2017

To: Dr Vincent Deary
CC: Dr Joanne Smithson


Dear Dr Deary,

I have a query in relation to the presentation:

http://www.nescn.nhs.uk/wp-content/uploads/2015/09/20150922-Presentation.pdf

Specifically, the section that begins at Slide #29

Improving Pathways for PPS
Dr Vincent Deary, Joanne Smithson, Dr Michaela Faye. Faculty of Health and Life Sciences


At Slide #31 you have stated:

"...Our work is focusing on three PPS: Chronic Fatigue Syndrome (CFS), Irritable Bowel Syndrome (IBS) and Fibromyalgia.

"These three PPS account for at least 15% of GP consultations and up to 30-50% of referrals to specialists"

Would you be kind enough to provide references for the statements that:

Chronic Fatigue Syndrome (CFS)
Irritable Bowel Syndrome (IBS)
Fibromyalgia

account for

a) at least 15% of GP consultations
b) up to 30-50% of referrals to specialists.

Whilst I have data from a number of papers for prevalence rates across all secondary care specialities which are subsequently recorded as MUS, for example: ABC of Medically Unexplained Symptoms edited by Christopher Burton gives the following:

Prevalence of medically unexplained symptoms in new referrals to different specialities:

Cardiology 53%
Gastroenterology 58%
Gynaecology 66%
Neurology 62%
Respiratory 41%
Rheumatology 45%​

and from:

Guidance for health professionals on medically unexplained symptoms (MUS) (2011). Royal College of General Practitioners and Royal College of Psychiatrists

In secondary care, 50% of outpatients fulfil criteria for MUS with a wide range of disorders

The following shows the % at 12 months

• Gynaecology (66%)
• Neurology (62%)
• Gastroenterology (58%)
• Cardiology (53%)
• Rheumatology (45%)
• General Medicine (40.5%)
​

I have been unable to locate data on GP referral rates specifically for CFS, IBS and FM as a percentage of referrals to specialists.

Kind regards,
etc


Slide #31 http://www.nescn.nhs.uk/wp-content/uploads/2015/09/20150922-Presentation.pdf





--------------------------------------------------

I think what Vincent Deary or his colleagues may have done, was to take the figure of 30-50% of referrals to outpatients fulfilling criteria for all (so-called) "MUS" across all specialities and applied that to just to CFS, IBS and FM.

I did not receive a response from him or from his colleague.

In the context of referrals across all specialities, I do not see how the percentage he has quoted for CFS, IBS and FM holds up.

 

It is a fact so I see it as fair -ME is quite often managed by physicians. At the Royal Free Gabrielle Murphy has been in charge at least until recently and is a physician in infection and immunity. And what about Luis Nacul and Nigel Speight and Willy Weir and so on?

And King's can hardly be considered usual in this context!!

Physicians may at least in part go for the biopsychosocial approach. Maybe Dr Murphy gives the impression of being a psychiatrist. No doubt she makes use of psychologists.

I can see that there may currently be a rapid shift towards psychiatry, with Amolak Bansal being replaced etc. but the claim was made relating to a status quo and it simply isn't as clear cut as claimed.

 

Also from the thread:

Thread: MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

https://forums.phoenixrising.me/thr...ening-across-the-uk.48710/page-21#post-806218



Just to complicate matters:

In England, we are increasingly seeing the term "medically unexplained symptoms" deprecated in favour of the term "Persistent physical symptoms (PPS)".

In Scotland, "Persistent physical symptoms" is being used, on this site at least, where the term, "long-term conditions (LTCs)" is used in England.

http://www.nes.scot.nhs.uk/educatio...ogical-interventions-and-physical-health.aspx


NHS Education for Scotland
Quality Education for a Healthier Scotland

Psychological Interventions and Physical Health

NES Psychology directorate has been developing a programme of work aimed at addressing the training needs of the NHS Scotland workforce in relation to psychological interventions in physical health care...

(...)

https://www.ucl.ac.uk/pals/research...ople_with_Persistent_Physical_Health_Problems


The Matrix (2015) A Guide to Delivering Evidence-Based Psychological Therapies in Scotland; Persistent Physical Symptoms

The Psychological Therapies 'Matrix' is a guide to planning and delivering evidence-based Psychological Therapies within NHS Boards in Scotland. The Matrix is published by NES, in partnership with the Scottish Government. It provides a summary of the information on the current evidence base for various therapeutic approaches, guidance on well functioning psychological therapies services and advice on important governance issues. The sub-section relating to the psychological management of persistent physical symptoms was updated in 2015.

Persistent Physical Symptoms refers to health problems that last a year or longer, impact on a person’s life, and may require ongoing care and support. The definition does not relate to any one condition, care group or age category. Common examples include diabetes, heart disease, chronic pain, arthritis, inflammatory bowel disease, asthma and chronic obstructive pulmonary disease (COPD).

The evidence tables for persistent physical symptoms can be found and downloaded in the link below:

http://www.nes.scot.nhs.uk/media/3500010/matrix_-_persisent_physical_symptomstablesfinal_1.pdf


The document in the PDF:

(My highlighting)

Psychosocial Interventions for People with Persistent Physical Symptoms

Introduction

Persistent Physical Symptoms, refers to health problems that last a year or longer, impact on a
person’s life, and may require ongoing care and support. The definition does not relate to any one
condition, care group or age category. Common examples include diabetes, heart disease, chronic pain,
arthritis, inflammatory bowel disease, asthma and chronic obstructive pulmonary disease (COPD).
Around 2 million people in Scotland have at least one such condition, and one in four adults over
16 years reported some form of long term illness, health problem or disability, and one in five have
chronic pain. These conditions become more common with age. By the age of 65, nearly two-thirds
of people will have developed Persistent Physical Symptoms, however, more people under the age of
65 years in Scotland have multiple conditions.

(...)

Asthma
Cancer
Cardiovascular disease (CVD)
Chronic fatigue syndrome (CFS)
Chronic kidney disease
Chronic obstructive pulmonary disease (COPD)
Chronic pain
Diabetes Type 1 and Type 2
Irritable bowel syndrome (IBS)
Multiple sclerosis (MS)
Osteoarthritis
Rheumatoid arthritis
Obesity/Weight loss interventions


But in England, PPS is being used for:

"Medically unexplained symptoms"

under which is also included, in some cases:

Fibromyalgia
Irritable Bowel Syndrome
Chronic Fatigue Syndrome/ ME
Functional Neurological Symptoms (including Non-Epileptic Attacks)



The NHS Education for Scotland site has a separate page for MUS:

http://www.nes.scot.nhs.uk/educatio...chology/mus-long-term-conditions-toolkit.aspx


MUS - Long Term Conditions Toolkit

The term “medically unexplained symptoms” is used to describe a set of persistent physical symptoms (e.g. chest pain, dizziness, back pain) for which, after extensive investigation, there is no obvious underlying cause or diagnosis.

For those with persistent physical symptoms, the journey from symptom development to clear understanding and evidence-based treatment can be an arduous one. In an attempt to exclude more concerning underlying conditions, GPs often undertake a range of medical assessments and interventions. While necessary, these can cause patients to develop:

• unwanted psychological and physical side effects, adding to distress and disability
• beliefs about the nature and seriousness of their condition,
• Additional pain, fatigue and other symptoms due to pharmacological interventions.

In the absence of a clear cause or diagnosis despite persisting symptoms, patients can become increasingly distressed, while fear of what may be generating symptoms often leads to avoidance of daily activities. Further investigations may also place the patient at risk of harm, for instance, due to infection from exploratory operations, and exceeding safe doses of radiation etc.

 

Also from the thread at:

https://forums.phoenixrising.me/thr...ening-across-the-uk.48710/page-21#post-806231


http://3pnqyl1x5xc33i3yxr1z3uti.wpe...D=394444&type=full&servicetype=Attachment.pdf

NHS West Sussex

Medically Unexplained Symptoms
Referral Management Advice

"MUS account for about 20% of GP consultations and 50% of all outpatient attendances, across all specialities.

"10% of patients will go on to be found to have a physical cause (90% will not)."*

*4-10% cited in some papers.

 

From: https://forums.phoenixrising.me/thr...ening-across-the-uk.48710/page-22#post-806448


(AHSN-NENC = The Academic Health Science Network for the North East and North Cumbria)


https://www.ahsn-nenc.org.uk/project/226/

Improving Patient Pathways for Persistent Physical Symptoms

Persistent physical symptoms (PPS) such as Chronic Fatigue Syndrome, Irritable Bowel Syndrome and Fibromyalgia account for at least 15% of GP consultations and account for up to 30-50% of referrals to specialists.


again, unreferenced. But note the above says: "Persistent physical symptoms (PPS) such as...account for..."


whereas, Deary et al have stated in their slide presentation:

"...Our work is focusing on three PPS:Chronic Fatigue Syndrome (CFS), Irritable Bowel Syndrome (IBS) and Fibromyalgia.

These three PPS account for at least 15% of GP consultations and up to 30-50% of referrals to specialists"

So, he's jumped from all PPSs (of which CFS, IBS, FM are considered in the context of the above text to be a subset), to claiming CFS, IBS and FM account for up to 30-50% of referrals to specialists.

 

And just to cheer everyone up...

ICD-11 proposals for adding exclusions for PVFS, BME and CFS under the SSD-like Bodily distress disorder (BDD) and for adding an exclusion for Bodily distress disorder under PVFS, BME and CFS were rejected by WHO Admins, in February and March.

Also rejected, in February, were proposals to delete the BDD diagnostic category, or reconsider the nomenclature for the BDD diagnostic category to mitigate confusion/conflation with the differently conceptualized diagnostic construct, Bodily distress syndrome (Fink et al. 2010), which has very different criteria and captures a different patient population to ICD-11’s BDD, and for which the term "Bodily distress disorder" has been in use, interchangeably, since 2007.

But reciprocal exclusions under Fatigue (was Malaise and fatigue in ICD-10), have been approved and implemented.


https://dxrevisionwatch.files.wordpress.com/2019/03/status-of-icd-11-processed-proposals-v1.pdf

or

http://bit.ly/ICD11ProposalTable






Open the full Table here

 

Very likely a common situation. But then this is neither 'mental' nor 'medical'. Most of the occupational therapists I have spoken to who deal with ME are not very convinced of any particular theoretical basis - they just try to help people in practical terms. And according to Richard Horton pacing is the patients' philosophy, in stark contrast to the psychiatrists philosophy!

It's all a muddle and I agree that most of the time the people in charge seem to have no idea what they are doing. But I still think painting this as a fight between mental and medical is what lost the battle in 2011 and would lose the battle again, every time.

 

Can you summarise your reasoning for that please, as I'm having trouble tracking all the pros and cons through this thread, and I find myself simply confused to be honest. Would like to understand better.

 

I would take as examples Margaret Mar's debate in the Lords. The emphasis was on the mental vs medical and not on quality of evidence. She got annihilated. Then there is the piece by Peter White in the 2015 symposium flagged up in the last week where he dismisses all criticism as being due to patients not liking the mental label. The problem is that it is so plausible - that all the fuss is being created because patients do not want the 'stigma of mental illness' - the general populous and the great majority of the medical profession will swallow that and forget anything else. So it is all emotionally driven harassment. And Simon Wessely even gets given a prize for standing up against irrational emotionalism from patients attacking science.

But what has evolved through the work of Tom, Alem, Keith and Carolyn and the commentary from David is something that has actually shifted the balance of power. Cochrane has at least admitted it may have been wrong. NICE agreed to review. The NICE decision was a response to people who put a lot of emphasis on the mental/medical divide but they also pushed on the evidence base.

Around the NICE committee table if the emphasis is on medical rather than mental the defenders of PACE, who may well be the majority, can easily smile and sit back and say 'they don't get it, do they, our approach is not mental, it is biopsychosocial and includes body and mind as one'. So CBT and GET get voted back in. If the emphasis is on lack of evidence and there is a denial that mental/medical has anything to do with it then the BPS people have to produce some answers.

The fact that there is a problem out there in general practice with doctors taking an 'all in the mind' approach is no less real but it will only change when they suddenly find that they are no longer in a position to shunt people off to non-evidence based treatments and that the received wisdom is that the BPS theory has no evidence base after all.