As you are probably aware, here in the UK, NICE are currently engaged in the lengthy process of revising their guidelines for ME/CFS. The current guidelines recommend the use of GET (graded exercise therapy) and associated CBT (cognitive behavioural therapy), the latter being used in this case to persuade patients that GET is a good idea.
Patients have every right to be sceptical. Numerous patient surveys have shown that many report being made worse by GET. Many patients end up housebound or even bedbound as a result, sometimes permanently so. Research such as that by VanNess et al has provided evidence of why such exercise is harmful, while PACE, the most influential study purporting to support the use of GET, has been thoroughly debunked and discredited – most comprehensively by Wilshire et al. In the US, the recommendations for GET and CBT have been withdrawn in view of the latest information.
In view of all this, a disinterested bystander might be forgiven for assuming that withdrawal of support for CBT and GET will be close to a foregone conclusion when NICE eventually complete their review. Indeed, they might well agree with those patient groups who have asked NICE to remove the recommendation for these therapies from their guidelines at once before anyone else gets harmed.
As it happens, however, the latter request has not been successful and it’s anyone’s guess what will happen when the interminable review is finally completed in 2020 – though the smart punters would probably put their money on CBT and GET remaining in favour.
There’s a number of reasons for this.
- Though anyone who takes the trouble to look at the evidence will see that PACE has indeed been thoroughly debunked, the Trial’s authors have adopted the policy of pretending that no significant flaws have been uncovered and that everything will be fine if they keep on insisting they’ve done nothing wrong. Close to the heart of the British establishment as they are, this policy has served them pretty well so far and we can’t assume that NICE won’t be taken in too.
- If NICE withdraw their recommendation for CBT and GET, what therapies can they offer instead? There has been so little biomedical research in recent times – due in large part to the unhelpful influence of PACE itself – that no substantial advances in treatment seem likely to arrive in time for the completion of the review. So if NICE withdraw CBT and GET, they might leave doctors with nothing at all to offer – and doctors won’t like that.
- If CBT and GET are withdrawn, what will the poor old NHS CFS Clinics do? CBT and GET are their stock in trade. Without them, how could they survive? Will NICE want to trigger wholesale redundancies in the CFS industry? Probably not.
So the only sensible course of action from the point of view of patients is for NICE to withdraw their support for CBT and GET (preferably right away) but when you look at the self-interest of so many of the professionals involved, it’s a very different story.
On the other hand…
Taking a broader perspective, perhaps the closure of the CFS clinics wouldn’t be such a terrible blow for the pro-GET lobby after all. It may well be that they have Plan B in place already….
…Because whether by accident or design, the new MUS (medically unexplained symptoms) clinics which are being rolled out across the country in a major new initiative couldn’t have come at a better time for them. If NICE comes out against CBT and GET and the CFS clinics fail, then the MUS clinics will provide a natural place for their staff to go. It’ll be the same sort of work but with a much larger clientele. Up until now, they‘ve only had people with CFS to work on. Now the sky will be the limit.
MUS is a far more powerful dustbin diagnosis than CFS ever was. Even Esther Crawley couldn’t come up with figures to claim that people with CFS represent more than 2% of the population. With MUS, on the other hand, you are talking about a substantial proportion of the people who come through a doctor’s door.
According to the figures in ‘The Guidelines for Commissioners of Services for Patients with MUS (Feb 2017)’, up to 20% of people who go to see their GP really have MUS, while for secondary care, the proportion ranges from 39% for dentistry up to a staggering 66% for top-scoring gynaecology. Two things are especially worthy of notice here:
- Should it surprise us that gynaecology produced the highest proportion of patients believed to have MUS? (Not really. Women have suffered such prejudice for centuries of course. The ‘high attack rate in females compared with males’ among patients in the Royal Free outbreak was cited by Beard and McEvedy as part of their argument for labelling ME as ‘mass hysteria’ back in 1970 for instance ) and
- Those extraordinary figures for secondary care come from a 2001 study by – who would have guessed it? – S Wessely et al.
Before I go on, I should explain what MUS is in case you don’t know. The acronym stands for ‘medically unexplained symptoms’ which according to ‘The Guidelines for Commissioners of Services for Patients with MUS’ can be described as ‘bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology’. Or to put it another way, they are symptoms which don’t have an obvious physical explanation. Doctors don’t understand them and they don’t show up in tests. For people with ME, this will already sound eerily familiar.
The Royal College of Psychiatrists’ leaflet on MUS explains as follows:
‘When something in our body doesn’t feel right, there usually is a bodily or ‘physical’ cause – stomach problems may be due to an infection, or palpitations may be due to a heart problem.
‘What if there is no physical explanation for your physical symptoms? We can often understand and explain such symptoms when we look at how our thoughts, feelings and stresses can affect our bodies.
‘But – to say that a bodily symptom is not just physical is not the same as saying they are all in the mind. Medically unexplained symptoms aren’t “all in the mind”, but neither are they all in the body. To understand them we have to think about how the mind and the body work together.’
But in spite of this ‘a bit in the mind and a bit in the body’ description, the suggested therapies turn out to be all psychological in nature: talking therapies and anti-depressants. Oh yes, and graded exercise. You may not find this surprising.
I first looked at MUS in my post ‘Medically Unexplained Assumptions’ a couple of years ago. You may find that post of interest. Back then, I was interested in delving into the origins of the medical profession’s attitude to ME. Little did I realise that MUS was about to come back into fashion on such an extraordinary scale.
Looking at the various documents about MUS that I have been collecting over recent months, I am struck by what a massive thing it appears to be. I have already written this post then scrapped it and started again several times over. I am anxious not to exaggerate or be alarmist yet it seems to me that unless I appear to do so, I am understating the challenge which MUS presents.
Those figures I quoted above from Wessely’s study give an idea of the extraordinary number of patients which the medical authorities seem to believe are affected by this mysterious entity MUS, yet when I turn to the NHS Choices website, I see they’re going even higher. They’re attributing ‘up to 45% of GP appointments and half of all new hospital visits’ to MUS. If the trend goes on, there will soon be more people with MUS than with what I shall call (for the want of anything better) ‘accredited illnesses’.
How do the authorities intend to deal with this burgeoning problem?
The ‘Guidelines for Commissioners’ booklet proposes a hospital MUS service as part of the solution. Apparently this will:
‘redirect patients from the emergency department, expedite discharges from medical and surgical wards, and offer effective interventions. These activities should help avoid unnecessary medical investigations and interventions, reduce length of hospital stays, and prevent frequent referrals and readmissions. Services must include psychological therapists who would provide evidence-based MUS interventions in a timely manner. The therapists would be sufficiently familiar with physical healthcare to be credible to patients – many of whom may not accept a psychological component to their physical symptoms and therefore the need for psychological therapy.’
So, in the future, it seems that your local hospital MUS service will be standing by at all times to whisk you away from the parts of the hospital where you might get medical assistance and take you somewhere nice and quiet where you can focus on the important business of working out which psychological therapy you need. I’m afraid I do not find this reassuring.
Imagine a crowded A&E department on a Saturday night. Imagine the pressure to cut down waiting times and the shortage of hospital beds. The pressure on staff to dismiss a quota of patients as MUS and bundle them into a side room for CBT is going to be enormous. It’s certainly an easier option than finding something physically wrong and fixing them And indeed, will there be a fine to pay if they don’t don’t come up with the specified quota of MUS patients for the evening? A specified quota which, to take the figure from NHS Choices, would be no less than fifty per cent.
And what are we supposed to make of this bit: ‘the therapists would be sufficiently familiar with physical healthcare to be credible to patients’? Am I wrong in getting the impression here that these psychotherapists are going to pretend to be doctors or something? What are they going to do: hang stethoscopes round their necks? Isn’t that illegal? At the very least, this seems to me to be an example of a national NHS document deliberately advising health professionals to mislead patients. Or am I being unfair?
Now, I can imagine why doctors might want to bear this MUS thing in mind for a small minority of their patients, but the guidelines seem to suggest it should be a primary consideration all the time. Look at this excerpt from another piece of advice for doctors, this time aimed at primary care. The Treatment of Medically Unexplained Symptoms in Primary Care – A Review of the Literature from ‘Mental Health in Family Medicine’ (2010) advises:
‘A quick and easy method for carrying out a mental state examination in primary care is the Look, Listen and Test schema. This schema utilises the observation and communication skills already possessed by GPs to enable the GP to develop a formulation by observing the patient’s behaviour and activities from the moment they enter the consultation room, by listening to and evaluating the content of the speech to identify underlying themes of depression, anxiety or paranoia, and by encouraging GPs to test severity by using questionnaires developed to evaluate mood and anxiety disorders. Once depression has been diagnosed, the GP should prescribe the standard dose of selective serotonin reuptake inhibitors (SSRIs) or tricyclic antidepressants (TCAs) available in their geographical area of practice.’
The reason for this assessment of mental health, of course, is that many people with MUS are said to suffer with depression or anxiety. If the doctor can identify these problems, therefore, you’re well on your way to a MUS diagnosis. So while you’re talking about the abdominal pain you’re getting, your doctor is apparently sitting there trying to decide if you’re paranoid.
I can’t help wondering if it is really in the patient’s best interests to have the doctor’s attention deflected in this way? If a patient is suffering say, in this case, abdominal pain, is it not sensible to focus on the abdomen, at least to start with? Is there not a danger that in their zeal to identify the 45% of their patients who have MUS, doctors may overlook some genuine physical illness?
I have other concerns about diagnosis- and about MUS in general – but I’ll save them till next time, I think. There’s plenty to go at I’m afraid. But for now I’d like to close this post by touching on an aspect of MUS which particularly concerns me.
The Guidelines for Commissioners identifies not only chronic fatigue syndrome but also myalgic encephalomyelitis as MUS conditions and patient advocates have quite rightly raised concerns about this, pointing out that ME has been recognised by the World Health Organisation as a neurological condition for a great many years. While I agree that this is important, I wonder if it is also overlooking the most important threat from MUS?
In the future, will it matter whether ME is designated MUS or not? Will it matter whether NICE recommend CBT and GET for ME or not? As more is discovered about ME and the imposition of psychological therapies is made more difficult by the growing weight of evidence against them, will the diagnosis ME – and even CFS – become too troublesome for the powers that be to use any more? Far better, perhaps, from their point of view, to shift new patients off into the vague morass of the ‘MUS’ label, where CBT, GET, and other psychological therapies can be used without fear of interference from those who insist on researching the truth of our condition.
20 thoughts on “A Morass of MUS”
I share your concern
Of course, MUS simply means that the doctor hasn’r been able to make an organic diagnosis. He may be missing something he is ignorant of
Reflex Sympathetic Dystrophy (Regional Pain Syndrome) used to be called an MUS but even the most psychobabbling docs now recognise it as due to autonomic nerves mediating pain, and offer nerve blocks to relieve the pain
Another of my favourite diagnoses is Bornholm Disease (the devil’s Grip) It can cause severe pain in the chest or abdomen lasting weeks or months. Many doctors have never heard of it. It is due to a coxsackie B virus and as it happens is sometimes followed by ME
as one intelligent 6 yr old said to her Professor in answer to his “But all your tests are normal” – ” Maybe I’ve got a condition for which you have not yet discovered the right test”
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I very much hope that six-year-old will go into medicine…
They may have another cunning plan already with a charity for Functional Neurological Disorder which is FND Action. NICE scoping for Suspected neurological conditions https://www.nice.org.uk/guidance/gid-cgwave0800/documents/final-scope so now they can move on those with ME in two ways?
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As they say with buses, there’ll probably be another one along in a moment. The vocabulary for MUS-type conditions keeps expanding all the time. I find the use of the word ‘functional’ particularly objectionable because it sounds like it’s physical whereas doctors know it means anything but. Patients are fooled – and that is the intention.
All these ‘conditions’ have one thing in common of course. There’s no proof they exist.
I have had this growing fear of MUS as well Jenny. Ever since my daughter was turned away from A&E with pain in her back after having been taken off warfarin (she had had DVT in upper body at 19), they said she was stressed even though she had trouble breathing, quick xray showed nothing but I knew she was in pain so we drove to Guilford hospital (private) only to be told she had pulmonary emboli in both lungs…she would have died!!! I could go on, suffice it to say that she has been told so often that there was nothing there only for us to find something terrible (turned out she had Thoracic Outlet Syndrome with top ribs blocking her subclavian vein on one side and artery on other)… Thanks for your input and efforts to challenge and attempt to move what seems like mountains!
Yes, the advice re MUS seems to be to limit the amount of investigation, whereas our own experience (of which this is another example) suggests that we really need more.
No Jenny here though, Helen, so i’m afraid you may be mixing me up with somebody else . The only Jennys I can think of are excellent bloggers, though, so I take it as a compliment.
Thank goodness you managed to get your daughter to some decent doctors- though it does make you wonder sometimes if this is all a plan to push us into the private sector. I really don’t like to be alarmist but what else are you supposed to think?
“And indeed, will there be a fine to pay if they don’t don’t come up with the specified quota of MUS patients for the evening? A specified quota which, to take the figure from NHS Choices, would be no less than fifty per cent.”
That is just terrifying. 😦
Medicine in the UK is sinking ever deeper into a festering cesspit, entirely of their own making.
I can only hope those responsible for it are held to account at some point.
I should stress I don’t know there’s going to be such a quota. I’m only looking at the tick box culture which seems to have overtaken the NHS and combining that with some of the extraordinary ideas which appear in the guidelines and seeing what I come up with. The words ‘sinister ‘, ‘Kafkaesque’ and ‘farcical’ come to mind. I’m not sure which is most appropriate.
I was diagnosed with Functional Syndrome by a neurologist after presenting with weakness, pain and patches of numbness in my legs. Luckily, they wanted to prove to me that it wasn’t MS (it wasn’t) so ordered a spinal MRI. The MRI showed that I had three collapsed discs in my lower back, one of which was pressing on the spinal cord and irritating the nerves to my legs causing all my symptoms – I asked for a copy of the scan pictures to look at myself as this was all happening when I was going through the motions of being diagnosed with ME and I didn’t trust anyone to tell me what was going on. And even though I, as a total laywoman, could clearly see where the discs were compressing the spinal cord on the images – there was an obvious narrowing of the spinal cord at that point and the bulge in the disc was clearly pressing on it enough to make a measurable difference – and a search on Dr Google showed that yes, this would indeed cause the symptoms I’d been suffering from, the second neurologist I saw at the follow up appointment after the scan refused point blank that the collapsed discs had anything to do with my leg symptoms and insisted that what I was suffering from was “functional” rather than physical. He was so wedded to this MUS crap that even with the evidence right there in front of him he refused to see it. I realised at this point that I was dealing with an evangelist and there was no point arguing with him further but it really shook me up.
I don’t know how we fight this – as usual any attempt to disagree with a psychological argument inevitably ends up with cries of “you’re in denial”. How do you prove a negative? The tentacles of psychiatry are so pervasive through the medical establishment that it has been accepted as a “real” diagnosis despite there being no proof of the existence of MUS. There is no reason to assume a psychological cause other than an absence of results on “normal” diagnostic tests. And all that means is that the test that *could* pick up abnormalities either hasn’t been used or hasn’t been designed, and the more the MUS evangelists push their religion forward into the NHS and other health systems across the world the less likely it is that those tests will ever exist. Scary stuff.
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Yes, it is indeed scary. It does make me wonder what other doctors and health professionals think of all this. As you suggest, some will be brainwashed by MUS – but surely not all of them?? Do they not see how ludicrous and potentially harmful so much of this is?
Thank you for excellent article.
As a father of a ME/ CFS patient i wish to add my comments and share my despair in this, Finnish system.
These”unexplained symptoms” seem to be a world wide problem. These “MUS”, “BDS” and “Functional” labels are spereading like a plague, an intellectual one.
As a response to symptoms which cannot be explained without extensive diagnostic efforts, or routinely treated within our current, heavily pharmacology dependant medical care, this new classification ofers a convenient way out. It is understandable that medical professionals try to solve new problems with available options. As available options, these “MUS” type labels are now turning into diagnoses which can be set within the allocated time frames for doctor-patient interaction, without trying to figure out what kind of tests are needed for a viable solution.
Everybody knows that these “MUS, BDS, Functional” labels are not supported by scientifically proven studies, or long standing empirical knowledge on their etiology or existence. Also, everybody knows, that there is no knowledge, or scientifically proven evidence that therapeutic treatments exist for these “MUS” symptoms.
Still, this model of diagnosis and treatment is coming, despite more and more voices claiming, that these theories are shaky and unproven. And there already exists evidence of fatal consequences when severely ill patients have been denied proper examination and forced to rely solely on therapeutic support.
So, we need to ask, who is responsible? The trend is world wide, no single person, or institution, cannot be blamed. There are some early examples, like the notorius Danish modell where father of the idea can be named, but in most countries, this type of ideology is offered as a solution to governance- and resource management issues in health care organisations.
The doctors who are, or will be, the driving force in implementing this new patient category, have not invented it, or studied it in any detail. They will get instructions from above, from their bosses. For them it may be a relief to be able to forward these, very demanding, patients somewhere else, but are they responsible? If “instructions to diagnose MUS” have been issued from a govenment institution, they are just doing as they are told to do.
So, who is responsible? Ackording to this model, the patient is responsible if he does not respond to therapy as intended.
Is that the end of it? I do not have an answer.
In my country, Finland, I can identify some individuals who are driving this model very hard, on several fronts.
To no surprise, the model they are offering to official and executive institutions, is a governance model, concentrating on resource usage. Even if they are respected, top placed doctors, they do not provide any solutions for treatment. They describe this new category of difficult patients with MUS. and the need of a quick diagnosis in primary care in order to remove these patients from mid level care facilities where they can waste resources on “unnecessary” examinations and treatments. Nothin else, the rest is shady speculations on therapeutic care and new care units.
If I could, I would blame these doctors and administrators and charge them for inhuman attitudes towards their fellow citicens. I woud also like to charge them for exploiting groups of severely ill patients for their own benefit, for new careers as leading MUS specialist in our country. As in any small country, our academic world ususally has only one “leading specialist” in every field. Others have the option to shut up. If nothing is done soon, this will be the Finnish reality om “MUS” issues.
How about other countries.
Thanks, Mikael – Yes, I can only guess that psychiatrists and other health professionals who practice CBT and other ‘talking therapies’ for MUS and the like are attracted by the career opportunities it promises. What I find more difficult is to understand why other health professionals are willing to go along with something which is so blatantly ill-conceived and unproven. I assume it must be the convenience of having an inexpensive channel by which to ‘dispose’ of these challenging patients. One would like to think that at some stage those health professionals will look back and say “Oh God, what have I done?” But the truth is that such patients have been ‘buried’ in this way for many decades. We’re just unlucky that the current economic circumstances are swelling the popularity of such an approach.
Wow it sounds like they’re really about to roll out a large scale placebo effect for patients with MUS, at what cost? It’s terrifying how mechanically and openly they are scheming against patients. Thank you for sharing and breaking all this information down for us!
Yes, the occasional element of blatant scheming against patients really ought to be enough to ring the alarm bells on this. But perhaps it is only patients rather than doctors who would be surprised at such an approach. Doctors, of course, use secret codes in patient notes for MUS and other observations or conditions. They seem to think nothing of it, yet many patients would be horrified.
When I was young GPs used to use the term ‘dreaded lergy’ to describe anything they had not found a cause for. I know my own ‘ME’ is influenced by a large number of sutble or downright abnormal issues in my blood work, yet because of my ME diangosis I am messed around and my test results are ignored. My Cortisol result alone makes (accordign to NICE guidelines) null and void.