Educating Doctors in Diagnosing ME/CFS

[Hutan]

I’m not sure the inadequate doctors would care much about any diagnostic guidelines. It’s incredibly difficult to ensure adherence for even the basic stuff, let along complex topics.

There are different kinds of inadequacy. Doctors who weren't properly taught about ME/CFS and don't know about it and who want to provide informed care for their new patient who says they have an ME/CFS are one sort of inadequate. Doctors with a deeply entrenched belief that people with ME/CFS are whiners who just need to get over themselves and off the sofa are another. The first may consult guidelines.

A doctor who doesn't understand should refer to one who does

As Utsikt says, but how do they identify a doctor who does understand?. Should they assume that the doctors that lead the Royal Colleges and medical infrastructure are the ones with the knowledge? And, should we assume that these doctors each individually hold all the knowledge?

Actually, I think it's worth repeating what Utsikt said:

You’re asking ignorant people to acknowledge their ignorance, and to be able to recognise who know better than them. In a system that stems from pure authority and eminence.

In the real world, doctors chat to their supervisor. We see numerous examples where their supervisors are even more poorly informed than their reporting staff.

one of the things I would push back against is arguing on the basis of 'NICE compliance'.

Sure, I agree. The NICE ME/CFS guideline is a long way from perfect, and some other NICE guidelines are very poor indeed. But, at least we can see the assumptions that are held up to be best practice. Maybe in the next revision they will be better. Guidelines can be the basis of training courses. The situation here in NZ where the Royal College of GPs is actively promoting the Lightning Process for people with ME/CFS at its training days is unlikely to happen in the UK, because NICE expressly says not to use the Lightning Process..

Hospital physicians never work according to guidelines. They have read the papers that guidelines are based on and discussed policy in much greater detail. They do things for good reasons. At least if they are any good. But the obsession with dumbing everything down to GP level has threatened even intelligent hospital care.

I'm very aware of hospital physicians disdain for guidelines. But, it's just not true that they have read the papers that guidelines are based on, not all the relevant papers for all of the conditions they are faced with. I've sat in hospitals for hours over the last two years and some of the practice is horrifying. Not all doctors are very good at interpreting the information in papers. Neither will they necessarily know what their treatments actually mean for their patients whereas nurses or patient advocacy organisations might. A guideline process draws on the expertise of lots of people.

I don't know how we deal with the hubris of the idea that a single clinician will automatically know everything they need to know or at least can ask another clinician who knows everything that needs to be known and so no one needs to refer to syntheses of good practice. Presumably physicians go to training days or read articles in magazines that update their knowledge? Are those less threatening to those doctors resistant to the idea of "recipes"? Those methods of communication can be based on the findings of a guideline process.

I understand what you are saying but to get back to the thread I am absolutely certain that if a doctor has to use diagnostic criteria he shouldn't be allowed anywhere near patients.

I would much rather have a GP go to our national health pathways system and look to check what the best medicine to use is than to just take a stab and confidently prescribe it, because they don't want to reveal the limits of their knowledge. I have seen doctors take the time to look something up online during a consultation and I appreciate it.

I take your point about the diagnostic criteria to some extent. It's a fact that many doctors have never heard of ME/CFS and have only the vaguest and usually inaccurate idea about 'chronic fatigue syndrome'. If someone is going to put a diagnosis of a serious untreatable disease on someone, then you'd really hope that they know what they are doing, and aren't just trying to interpret a diagnostic criteria.

But, it's very hard to think of many expert ME/CFS doctors. Most people with ME/CFS will never see them. It should be possible to somehow codify what the ideal expert ME/CFS physician knows so that less experienced doctors can still do a reasonably decent job of identifying ME/CFS. I think we have to strive for that. I think we collectively are (with the effort aided substantially by Jonathan's excellent contributions to documents that are, or at least look a bit like, guidelines).

 

[Formerhuman]

Thank you for joining this discussion, @Jonathan Edwards . No doubt your point about making a diagnosis by means of knowledge and experience is great, but as others have already mentioned, the majority of patients with ME/CFS can't find such an expert. Most clinicians won't have access to experienced mentors because they are almost absent. In my view, guidelines such as NICE are a good step.

I don't mean that I'm looking for criteria which allow doctors to diagnose patients with their eyes closed. Rather, I'm looking for a supportive tool. And I just want to understand what tool is better. Because, for example, on the Charité website, German experts propose their checklist (Munich Berlin Symptom Questionnaire) that includes Canadian Consensus Criteria, IOM, and DSQ elements.

With regard to NICE criteria, I'm not sure that it's clear how to assess reduction of functioning. I quote:

"the person's ability to engage in occupational, educational, social or personal activities is significantly reduced from pre-illness levels"

That's my question for all participants of the discussion, if I may ask. Should assessment of functioning be clinical, or are any questionnaires such as FUNCUP or SF-36 a better option if a doctor uses NICE criteria?

 

[Trish]

The diagnosis of ME/CFS requires chronic disabling symptoms, and specifically identifying the person experiences PEM. I don't think the degree of disability needs to reach a specific level measurable by questionnaire in order to be diagnosed.

If the doctor wants to put a figure on it so they and the patient can track whether they are improving or worsening over time, they could get the pwME to choose which level on a disability scale best matches their current level. The MEA has quite a good 0 to 100 scale. This is much quicker and easier than filling in FUNCAP at the diagnosis stage.