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 In the US, the recommendations for GET and CBT have been withdrawn in view of the latest information.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.
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