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 or boxes, 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'.

 

[Eddie]

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.

The problem is that certain health professionals do think there is evidence that ME/CFS is psychosomatic. That evidence is their experience with patients, other doctors and the medical profession more generally. We can try to point out that that evidence shouldn't be good enough, but they don't have access to what it is like to have ME/CFS, which is why I and I think many others here, don't think ME/CFS is psychosomatic (and why I think psychosomatic is a pretty nonsensical term).

My point is that we can write any material in an attempt to convince doctors that ME/CFS is not psychosomatic. But without some good evidence to show what ME/CFS actually is I just don't think it will have any impact. People believe things for reasons, and reading a sentence in a guideline won't be a good enough reason overcome why they believe ME/CFS is psychosomatic. I guess I don't really see a path forward for any real change without actually figuring out what is going on.

 

[Hutan]

I guess I don't really see a path forward for any real change without actually figuring out what is going on.

You are probably right @Eddie.

It's essentially impossible to prove ME/CFS isn't (or is) psychosomatic right now. But, it is a fact that there is no good evidence that treatments based on that paradigm benefit people with ME/CFS (or even CFS). And it is a fact that telling someone that they have a psychosomatic illness does cause harm. So, harm, not offset by any benefits from treatments.

Any clinical service for people with ME/CFS really has to acknowledge those two facts if it isn't going to cause net harm. I don't think we should be calling for anything less than a service that accepts those two things, and we and our charities should not be happy with less.

 

[obeat]

N Ireland

In South Eastern Trust, the published “average wait” for rheumatology is 114 weeks for urgent and 205 weeks for routine referrals (around 2.2 and 3.9 years respectively).


GP can ask for assist and guidance from consultant during the wait.

I think advanced practitioner nurses can provide more direct support given waiting time.

 

[Casterofspells]

I have looked at this over a long period and I don't think Afrin has provided a good case for a concept of MCAS. Afrin is very much out on a limb on this. As far as I am aware the allergy category is all we need when it comes to indications for antihistamines. There is a huge amount of unreliable hype around this area.

It is not about the term. It’s about the fact that it describes a very common comorbidity that will not show up as specific allergic response at all but is easily and effectively treatable with those drugs.

And even in this small forum we have two cases where they were forcefully withdrawn in a hospital to detrimental effects.

In the big Stanford effective treatment questionnaire antihistamines and Xolair both show up in the top 100 treatments for example. No great data but it shows it’s a common symptom cluster responsive to treatment.


Maybe we could just amend: treatment deemed effective prior to the hospital visit should not be withdrawn without consultation of the patient and should be aborted if baseline symptoms worsen.

 

[Jonathan Edwards]

I’m not sure this is quite the right wording. “Based on collective experience” could be interpreted to include some left-field ideas that have gained traction with some patient groups.

This is a useful point.
At the moment the alternatives seem to be management based on unfounded theories about energy etc. or based on the collective experience of the value of avoiding post-exertional malaise.

It seems that some are wanting to be even more stringent in justifying policy than I?
I am not sure what the left-field ideas would be but I am beginning to sense that a lot of advocacy groups like to push very hard on the idea that patients should be educated in 'PEM' and advised on activity accordingly. I have been taking it as a legitimate collective experience that informs care but maybe it is open to problems.

Now that I think about it, care shold probably only be based on the individual's own experience of how much they can do without running in to problems. Patients coming in to an ME/CFS service may vary a lot in terms of what sort of PEM they have, or even whether they have it at all. At east one member here denies it yet seems to have a similar disabling illness to others. Other members appear to cope with quite intensive exercise, even if they admit to PEM.

It may be a mistake to presume that all patients diagnosed with ME/CFS require the same advice. Which brings me back to the worry that the BACME Guide seems to go in to far too much detail on assessing activities and recommending plans. A lot of people like to be given plans but if we don't have good reason to think that any particular policy for plans can be applied across the range of people with ME/CFS then this is surely illusory?

I am going to have a think about it but I agree that collective experience may be too loose.

 

[Jonathan Edwards]

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.

I think this is the same in the UK. But you don't get anywhere by acquiescing to a crazy policy that lets people die and prevents any progress in research.

The role of GPs would be the same as for any other disease - MS, RA, diabetes. The suggested plan is for a referral service. That may benefit from being more explicit but the DHSC plan, that this is to compare with, is about commissioning referral services.

I actually think that this push for eveything being under GPs will backfire complete in 5 years. We are already seeing a lot of primary care delivered from hospitals in the UK, especially in the provinces. My niece is a primary care physician working in a hospital. In some areas this is all that teh NHS can recruit. Old style GPs are at the end of their tether and despite people like Clare Gerada and Helen Stokes-Lampard banging on about how much we need more GP emphasis, the absurdity of this in a modern world of sophisticated medicine is beginning to show through.

I think we should just ask for what other diseases get, which is this suggestion. To bak off that is to admit failure before the start. Advocacy groups have been doing that and the outcome so far is a disaster. What could be worse?

There is an argument that we do not have physicians ready to take on this role. But the counter argument is that at present we have GPs fulfilling the role and in many cases being worse than useless. The exception is when the patient starves and the GP begins to see how unsuited they are to provide a care package - like the GP who resigned after Maeve's death.

 

[Jonathan Edwards]

Until there are specialist physicians to refer to GP will continue to ignore ME/CFS as a non-disease. Attempts at education of GPs and students will either fail completely or elicit lip service responses. As long as GPs think they can handle this the situation will go nowhere. Maybe some enlightened GPs should apply for physician posts in hospital units. It is not unknown. The great Paul Beeson, who for forty years wrote the premier textbook of medicine, was a GP who ended up as Regius Professor of Medicine in Oxford.

 

[Jonathan Edwards]

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.

I will add something.

 

[Jonathan Edwards]

My point is that we can write any material in an attempt to convince doctors that ME/CFS is not psychosomatic. But without some good evidence to show what ME/CFS actually is I just don't think it will have any impact.

I would be a bit less pessimistic. The DHSC people seem to have taken on board the idea that mental health services should not be involved in this. I think it is useful to point out that there is no valid reason to treat ME/CFS as psychosomatic (and that the psychosomatic/deconditioning model on which current services were based has failed).

 

[Jonathan Edwards]

N Ireland

In South Eastern Trust, the published “average wait” for rheumatology is 114 weeks for urgent and 205 weeks for routine referrals (around 2.2 and 3.9 years respectively).

I don't know how much that is a regional thing and how much a reflection of government neglect of health care provision since 2010. When I retired in 2010 our rheumatology waiting time was around 3 weeks and 2 weeks for urgent cases. That was achieved in the previous decade by recruiting staff, bringing it down from about 8 weeks. I doubt the wait is still as short now.

 

[Peter T]

My point is that we can write any material in an attempt to convince doctors that ME/CFS is not psychosomatic. But without some good evidence to show what ME/CFS actually is I just don't think it will have any impact. People believe things for reasons, and reading a sentence in a guideline won't be a good enough reason overcome why they believe ME/CFS is psychosomatic. I guess I don't really see a path forward for any real change without actually figuring out what is going on.

This is perhaps a tangent, but I suspect it would be helpful to address why ME/CFS does not fit it with many doctors’ intuitions of how a medical condition should present, making a psychosomatic interpretation so attractive.

- symptoms can present across a number of biological systems not conforming to how medicine both professionally and conceptually parses the medical universe
- symptoms can be very variable between and within individual patients
- ME/CFS may not stop an individual if pushed performing any specific actions, rather it is the cumulative effect of acting that triggers the short term and long term worsening
- PEM is often delayed, but humans are not particularly good at problem solving when there is a time delay between cause and effect
- PEM may result from cumulative effects from different inputs, so for example one action may not of itself be problematic, but if repeated in a noisy situation under bright lights on a busy day it will trigger PEM
- triggers in one modality may result in symptoms in another, for example PEM triggered by specific smells could cause leg pain or word finding difficulties

Personally I did not begin to understand the variability in my own symptoms until I understood I was looking at a combination of food intolerances, sensory hypersensitivities, orthostatic issues in addition to the cumulative effects of physical and mental activity/exertion. A role of any ME/CFS provision needs to help both to patients and other medical professionals understand these potentially counter intuitive factors.

[added - We currently can not explain why such patterns emerge in ME/CFS, but I would hope that once medicine recognises the strangeness of our condition it would become a fascinating problem needing solving rather than something to be avoided or pushed off to the psychosomatic believers]

 

[Jonathan Edwards]

It is not about the term. It’s about the fact that it describes a very common comorbidity that will not show up as specific allergic response at all but is easily and effectively treatable with those drugs.

And even in this small forum we have two cases where they were forcefully withdrawn in a hospital to detrimental effects.

In the big Stanford effective treatment questionnaire antihistamines and Xolair both show up in the top 100 treatments for example. No great data but it shows it’s a common symptom cluster responsive to treatment.

I don't think there is any convincing evidence here. People with ME/CFS have gut pains. The fact that these drugs show up in a top 100 is surely meaningless. They are likely very often prescribed because of the meme about MCAS.

We need a level playing field. The eleve of evidence needed has to be the same across the board. If antihistamines really worked for abdominal pain, other than peptic ulcer and gastritis, for which H2 blockers are indicated, then I am pretty sure a drug company would have done the trials and made money out of it.

 

[Evergreen]

There's a lot that I really like here, especially the need to have care of ME/CFS based in physician-led hospital clinics, and how pwME/CFS should be accommodated in hospitals.

Here are some parts I think need tweaking:

The NG206 Guideline recommended personal care plans involving activity management but it is very unclear what evidence base there is for this, if any, and exactly how it should be implemented. It has become clear that there are differences of view in how to respond, either by using a modification of the graded exercise approach often called pacing up or by simply emphasising the need to recognise limitations on activity levels that can be tolerated without worsening of symptoms.

The term "activity management" doesn't appear in the NG206 guideline. In the previous guideline, activity management is very clearly defined as involving increases in activity. What is recommended in the NG206 guideline is "energy management". And then a kind of "if the patient wants it you can therap them". I would avoid giving the "pacing up" term more credibility by using it. And it may be best to avoid "graded exercise" even when talking about "a modification of the GE approach" because all you'll get is defensive stuff about "It's not exercise, it's activity", "It's not graded exercise, it's personalised" etc.

I suggest not using any of the terms except energy management, and instead spelling out what you mean in simple unambiguous terms, so something like:

"The NG206 Guideline recommended personal care plans involving activity energy management but it is very unclear what evidence base there is for this, if any, and exactly how it should be implemented. It has become clear that there are differences of view in how to respond proceed once basic energy management is in place. either by using a modification of the graded exercise approach often called pacing up or by simply emphasising the need to recognise limitations on activity levels that can be tolerated without worsening of symptoms. One option is to simply emphasise the need to adapt activity levels to fluctuating symptoms and functioning, while not limiting activity more than is necessary. Another option is to target increases in activity in a less regimented and more flexible way than previous approaches. The latter option would require assuming that the harms reported by patients were due to how therapy was implemented rather than the content of the therapy - arguably not a safe assumption.

ME/CFS follows an extended course over many months and most often years.

I have to admit, this formulation is one of my most-hated sentences in texts on ME/CFS. It implies that ME/CFS is a temporary illness, lasting, at most, a few years, when the evidence suggests it is long-term for most adults. For kids, even those who mostly recover have it for a mean 5 years. "Many months" and "most often years" just doesn't cut it. I vote strongly that this sentence is replaced.

People with ME/CFS are not expected to show improvement in response to care provision in the short term. There are therefore no ‘goals of therapy’ to be set and no relevant assessments of ‘treatment success’ such as patient reported outcome measures.

I don't think the second sentence follows from the first. Plenty of people with other conditions don't show much or any improvement in the short term, but do in the medium or long term. Therapists set goals for all the terms. The argument to be made against goals, in my view, is that pwME/CFS should not generally be targeting increases in activity (with the exception of those who are improving), so if goals are based around that, they're inappropriate. If the goal of therapy is to find a position the person can be NG-fed in that does not worsen symptoms and does not cause them to aspirate, that's fine. It's true that outcome measures will not ascertain "treatment success", but not because of a lack of short-term improvement. The reason outcome measures will not ascertain whether treatment is successful or not is because the illness fluctuates for most, relapses and remits for a small minority plus regression to the mean and a non-specific care effect. There is an upward drift over time in most cohorts studied.

I think you have an important point to make, but it's not being made in this paragraph at present. I think your point is the final sentence:

The primary index of a successful service is the degree to which people with ME/CFS feel adequately supported and validated.

I would just supplement that with cautioning against interpreting changes that happen during care as being due to care, and explaining why the evidence does not support therapies targeting increases in activity. Maybe quote your expert testimony!
Here's what you wrote:

Trials of therapist-delivered treatments to date have not met basic requirements for minimising bias and are therefore unsuitable as an evidence base for treatment recommendations. Inasmuch as they are interpretable, they suggest that although attitudes to health status may be influenced this does not lead to significant improvement in objectively measures of disability.

Neurology seems most relevant but rheumatology has accommodated a number of conditions the do not easily fall into a specialty category, such as chronic pain and muscle disease, especially where there may be immunological features.

but neurologists wedded to an unevidenced explanation of ME/CFS as psychogenic/"functional" should be avoided.

and rheumatologists who think ME/CFS is just mislabelled fibromyalgia, and fibromyalgia is best treated with exercise +/-psychotherapy, which may be most of them, are equally, if not more, dangerous. But we do have to be as least fostered by someone.

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.

I would skip the first two and just emphasize that exercise and CBT don't work. I don't know how you would get evidence for something being psychosomatic. It just doesn't seem a strong argument to me. Whereas if you focus on the treatments not working, that argument works regardless of the aetiology the reader favours.

 

[Jonathan Edwards]

Here are some parts I think need tweaking:

Good points. I will do some more tweaking.