A thread on what people with ME/CFS need in the way of service

[Lou B Lou]

It's implicit in what you've written, but I wonder if we could specifically mention access to routine care such as vaccinations and preventive screening programmes? Even some moderately affected people miss out on these.

One of the things it's difficult for primary care professionals to grasp is that moderate ME/CFS is a broad and very variable category. There are times when exacerbations / other illnesses push people who'd usually manage to attend a clinic into the severe category, meaning they can't.

The categories of Mild/Moderate/Severe/Very Severe should, in my view, not be seen as definite groupings, but rather as a spectrum range. For example 'Moderate' can range from the Mild end of Moderate to the near Severe end of Moderate.

 

[Robert 1973]

Withholding medicines already prescribed is always something to be very cautious about.

I think it would be helpful to add something to this effect to the document.

[Edit to clarify: whether or not any off-label drug is having a therapeutic effect, if the patient believes it is helping them, withdrawing it against their wishes may be detrimental to their wellbeing, as I know from experience.]

 

[rvallee]

It still amazes me that JE can write a far, far better «guideline» for care with 24 hrs of input from S4ME, than what the Norwegian Health Department managed in two years.

Same reason why a group of lifelong chain smokers with lung cancer have a better handle on the danger of smoking than tobacco industry-funded physicians. Funny how things work.

 

[Ravn]

I have been jotting. Likely lots of things for people to disagree with but this is what I ended up with so far:

Suggested Service Provision Format for ME/CF



The following is a draft outline for a service format for ME/CFS in the UK based on current evidence relating to patient needs.

Context:

I haven’t read the discussion
I realise this is written with a specific UK situation in mind
I’m aware you’re not a fan of GP services (and understand your reasons for this)
I think overall this is an excellent outline of what’s needed

Comment:

But international readers may need to consider some adaptations relevant to their local context if they want to adopt this as a template

In NZ, for such a plan to even be considered by any health authorities there would need to be an explicit role for GPs in it. That’s nothing to do with ME/CFS per se, it’s just that the current policy here is to push everything not immediately fatal into primary healthcare no matter whether that’s sensible in any given case. Think of it what you will but explicitly outlining the role of GPs would be a necessary strategic and political move here. GPs at any rate are the gatekeepers of whether someone gets referred to a specialist at all and if so to which, and that isn’t going to change anytime soon

So in NZ I think there needs to be an additional point along the lines of all GPs being systematically trained to recognise a potential ME/CFS diagnosis and then having a clear referral pathway to a relevant specialty. Ok, that may sound like I’m just saying ‘GPs please do your job’ but sometimes the obvious still needs stating (even if it’s mainly virtue signalling to the powers that be). Also, initially diagnosis and referral may have to be just support from a specialist GP via telehealth until a hospital-based specialty a) agrees to take us on and b) gets funded to do so. Which could take a while

In the meantime just getting GPs to up their game would help a lot in the short term. Unfortunately some of the other points on the list, reasonable as they are, would be considered delusional here, e.g. asking for an average waiting time of 2-3 weeks when even suspected cancer cases often wait for much longer than that for their first specialist appointment. Equally unrealistic is the idea of specialists doing anything domiciliary in rural areas, they don’t for anything else so they won’t for ME/CFS either

That’s not to say we shouldn’t gun for the whole package, we absolutely should. But depending on local context a different strategy may be needed for getting there. NZ is probably not the only country where a system that can be implemented stepwise, starting with primary care, would be more likely to result in at least some improvements for patients a little sooner. Just as long as we don’t stop at that stage

But I’ll let you get back to discussing in the context of the UK situation. Just wanted to highlight that as a template for other countries adjustments may be needed

 

[Hutan]

So in NZ I think there needs to be an additional point along the lines of all GPs being systematically trained to recognise a potential ME/CFS diagnosis

Yes. And probably everywhere, there needs to be better training of medical students about ME/CFS.

Related to that, the list requires that treatments be evidence based, but it says nothing about judgements of aetiology needing to be evidence based. Basically, I think I'm concerned that there is nothing to stop health professionals assuming ME/CFS is psychosomatic (e.g. a type of FND), and treating people in that light. Things can be said that don't amount to a 'treatment' exactly but make it very clear that the person just needs to pull their finger out and try a bit harder. Letters can be written to the GP suggesting that the person will probably come right once some situation resulting in them attention-seeking, or some stressful situation, resolves.

I'm also concerned that, if we stop doctors treating ME/CFS like a psychosomatic disease, they will just stop diagnosing ME/CFS and start diagnosing FND. We have heard that that is happening.

I'm wondering if it is worth noting that judgements of aetiology also need to be evidence based and that there is no evidence that ME/CFS is a psychosomatic disease. And also that attributions of symptoms to a psychosomatic cause and labels of functional disease cause harm and are not justified given the lack of useful treatments arising from that paradigm.

 

[V.R.T.]

Things can be said that don't amount to a 'treatment' exactly but make it very clear that the person just needs to pull their finger out and try a bit harder

A huge amount of what led to me worsening my condition was this sort of thing rather than any kind of structured 'treatment'.