UK: Document: MEDICALLY UNEXPLAINED SYMPTOMS (MUS) IN CHILDREN AND YOUNG PEOPLE, 2018

It's awful.

And there's actually no benefit to the health system from all this victim-blaming, family-blaming, hand-wavy 'let's find the trauma in your life' stuff.

Here we've just been through a process of developing a Health Pathway document - it's an online resource that doctors access to help them diagnose and treat, with links to various resources that are useful, local contact details for referrals and so on. Perhaps controversially, the Health Pathway document relevant to us is titled 'Chronic Fatigue and CFS'.

It helps doctors through a diagnostic process for someone presenting with chronic fatigue. Some of the questions do cover psychological issues and there is a link off to the depression page, along with others to multiple sclerosis and so on, but it also covers how to assess PEM and orthostatic intolerance and the IOM diagnostic criteria. We've tried to ensure that a reasonable diagnostic effort is made - because that process of ruling stuff out does help a patient sit more happily with a diagnosis of ME/CFS or even just a 'sorry, I really don't know' conclusion.

If at the end of it, someone is assessed as having ME/CFS, then they are given supportive care and a referral to our patient support group for the kind of care that can't be provided in time slots of 15 minutes.

If someone doesn't have PEM or a diagnosable illness, the pathway doesn't suggest slapping them with a MUS label and probing for buried trauma. They still get the supportive care and, and this is where it took us a little while to get our heads around it, they may still be referred to our ME/CFS patient group.

Because actually the support we provide is quite useful to anyone coping with chronic fatiguing illnesses. Of course we have to be careful to provide nuanced advice about how to manage activity - but it should always boil down to the individual patient getting to know how their body reacts and doing what works best for them. The fact that people might come to us incorrectly diagnosed with ME/CFS (ie without PEM) means that it was never appropriate for us to be giving blanket directives to limit activity anyway.

The Health Pathway suggests annual followup for adults, after the diagnostic process has been sorted, and ongoing vigilance on the part of the doctor for alternative diagnoses and new illnesses.

Anyway, the outcome in terms of cost to the health system isn't so very different to that achieved by the MUS approach. In fact, our approach is probably cheaper because patients who have gone through a reasonable diagnostic process and are hearing about the current state of knowledge from well-informed patient groups will be less likely to doctor shop, and no money is wasted on ineffectual BPS interventions or making fabricated illness accusations. Furthermore, patients remain willing to engage with the health system, and so if the 'chronic fatigue' does turn out to be something treatable, or the person develops some unrelated condition, it is caught early.

Doctors following that process can feel ok, because they've done the best they can, not added insult to injury and have maintained a good relationship with their patient. It's true that the patient support groups are left doing a lot of the heavy lifting - but we see patient support groups looking after illnesses like multiple sclerosis doing much the same things. In health systems with very limited funds, that's just how it is.

 

Sadly, it will probably take a clear pattern of this preventable increase in morbidity and mortality before enough patients and clinicians from outside the ME world will pay attention and demand action.

 

I couldn't bear to read much of this document, as the bits I read seemed focused on the doctor's feelings and validating the idea that it's normal for doctors to feel the 'heartsink' feelings when faced with a patient they can't diagnose. There seemed to be a lot of 'othering' of patients as inferior beings to doctors.

Why not tell doctors firmly that such attitudes are unworthy of doctors, and to take a positive approach of working with the patient, managing uncertainty professionally, and providing the sort of decent support they would give patients for whom there is a clear diagnosis.

Hutan, that system you have developed sounds great, provided the local support group includes people who actually have the training, skills and resources to provide the sort of support needed. When I tried my local support group some years ago they were worse than useless. They actually employed someone to help run the groups who was awful, from my point of view, and their current website is scientifically ignorant.

Edit to add: There is also the danger of local support groups being prey to quacks like LP, or egos like the Colin Barton Sussex group (have I got the name right). If doctors are going to rely on local support groups there should probably be a way of vetting them. In an illness like ME where there is no clear clinical pathway and no treatments, we are particularly vulnerable to quacks.

 

Yes, a very good point. (My comments about patient organisations weren't actually necessary; it's just that we're just finishing the pathway so I'm thinking about it. Seems to me, national patient organisations should have a role in helping to ensure regional organisations are not quacky.)

But, even without referring to patient support groups, the thing is that adding in the 'MUS' concept adds nothing good to a process of diagnosis and support. Of course it doesn't make patients feel better, but it also doesn't save money, and it shouldn't make doctors feel better.