A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

[JemPD]

I agree with all the comments so far.

This bit also bugs me...

Historically, treatment has been complicated by strong differences in opinion between people with ME/ CFS and their support groups compared with medical specialists, as well as differences in opinion among specialists.[184] [185]

yet again, although it nods to the fact that differences of opinion are held between specialists, its still setting it up as scientists/medics think one thing & patients something different.
Not good at summarising what i mean but that sounds like

uneducated ignorant patients think one thing (the lay opinion - which can be pretty much ignored because most patients dont know what theyre on about and these patients are particularly deluded), and specialists (who're educated and understand the science and have no secondary gains from being ill) think another.
But among the medical specialists opinion (that CBT GET are correct & good, there are differences of opinion between the specifics of how GET ougth to be delivered).
It does nothing to address the fact that actually, nowadays, rather a lot of scientists/drs/specialists, hold the same opinion as patients!

 

[Kitty]

yet again, although it nods to the fact that differences of opinion are held between specialists, its still setting it up as scientists/medics think one thing & patients something different.

It also seems to be describing differences between patient communities as "strong" compared with those between medical specialists.

It therefore manages to suggest that patients are stroppy and medical specialists are reasonable. I don't even think it's intentional, but that's the message I read from it. And the truth is that the differences between medical specialists are just as strong as those between patients, and when challenged they tend to dig their heels in every bit as much.

 

[Sean]

And however carefully we plan, the key is symptom contingent pacing, not plan contingent pacing. Also we can't plan completely, as exertion thresholds are not fixed.

This.

 

[Simone]

Does anyone have a PDF of the updated Best Practice page?

 

[SNT Gatchaman]

I've DM'ed you @Simone.

 

[Hutan]

I think that excerpt on treatments is pretty bad. It does not make it clear that the trials to date do not show that GET is effective - and that NICE found that GET didn't work. It doesn't work! If something doesn't work, then you don't have to write a whole lot of equivocal stuff about the possibility that it might harm, or it might harm some people, or it might harm under some circumstances, or we don't have enough information to know if it harms.

Although previous randomised controlled trials (RCTs) have reported benefits to structured GET in the management of ME/CFS, a re-analysis by Cochrane in 2019 highlighted the presence of methodological flaws. Concerns about the potential for iatrogenic harm with GET have been noted, owing to inadequate reporting of harms within RCTs.[187] [188] [189]

The possibility of iatrogenic harm with GET is supported by results of 2-day maximal exercise stress tests, where ME/CFS patients do well on the first day, but have reduced cardiopulmonary function on the second day, followed by exacerbation of fatigue and other ME/CFS symptoms.[111] [164] Graded exercise may be particularly counter-productive in severe and/or bed-bound ME/CFS because the treatment may induce post-exertional malaise (PEM) and prolonged exercise-induced exacerbations.

Dissenting opinion about the safety and efficacy of GET has led to uncertainty among clinicians as to how best to support patients in safely managing their activity and exercise levels. Fundamental gaps in the evidence regarding GET in ME/CFS remain, and a full update of the Cochrane review is currently in progress.[190]

Based on these concerns, GET is no longer recommended as a treatment for ME/CFS by the NICE guidelines, or by the US Centers for Disease Control and Prevention (CDC).[8] [191] With respect to this decision, the NICE guideline development committee cites reports of harm in the qualitative evidence, as well as the committee's experience of the effects when people exceed their energy limit.[8]

Many patients and clinicians now favour an alternative approach to managing activity levels in ME/CFS, referred to as ‘energy management’ or ‘pacing’, which involves carefully planning activities and rest to avoid overexertion (PEM). Note that energy management is intended as a possible coping strategy for people with ME/CFS, rather than as a curative therapy. The evidence for energy management is largely anecdotal, based on patient experience and clinical observation. This approach is supported by NICE in the UK, as well as by the CDC and the National Institutes of Health (NIH) in the US, and the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE).[8] [10][145] [192] NICE emphasises the importance in the absence of clinical consensus to provide clarity of information and clear guidance around energy management, physical activity, and exercise to people with ME/CFS; this topic aligns with this pragmatic approach.[8]

Note: NICE defines graded exercise therapy as "establishing a baseline of achievable exercise or physical activity and then making fixed incremental increases in the time spent being physically active. It is a therapy based on the deconditioning and exercise avoidance theories of ME/CFS." In practice, some patients with ME/CFS may tolerate a carefully individualised activity plan developed in collaboration with knowledgeable and experienced professionals: for example, those who feel ready to progress their physical activity beyond their current levels, and/or those who would like to incorporate physical activity or exercise into managing their ME/CS.[23] The activity plan must aim to minimise the negative effects of exertion on impaired aerobic and cognitive function. See the section Multidisciplinary support.

 

[Jonathan Edwards]

It does not make it clear that the trials to date do not show that GET is effective - and that NICE found that GET didn't work.

This is an important point. At the Round Table it was made very clear that GET was not recommended because the evidence was inadequate to show efficacy and even if there was a minimal effect, it was demonstrably not cost effective. The concern about harms did not come in to this formal efficacy analysis.

 

[Kitty]

The concern about harms did not come in to this formal efficacy analysis.

I guess logically, it wouldn't. If a treatment shouldn't be used because it doesn't work and isn't cost effective, there's no point expending effort reviewing the potential harms of it.

That's not especially helpful to patients if recommendations aren't being followed, but it makes sense.

 

[Haveyoutriedyoga]

I don't like that description of pacing. as 'carefully planning activities to avoid overexertion (PEM)'. PEM is not overexertion, it's a consequence of overexertion. And however carefully we plan, the key is symptom contingent pacing, not plan contingent pacing. Also we can't plan completely, as exertion thresholds are not fixed.
Also whatever we do is 'energy management' whether we do it by resting all the time or over exerting too much. So it's about doing what we can to avoid triggering PEM too often and too severely. Everyone in the world does 'energy management' and for most people it's fine however they choose to manage their energy. The difference for pwME is that if we don't manage it by restricting activity, we get much sicker.

Every time Pacing and energy management and activity planning is recommended I want to see it clearly stated that this is likely only to be possible with support to daily activities, and a recommendation to ask the person something like "what help do you need in order for you to pace adequately to avoid PEM?", this should be mandatory, not once have I been asked this, only the mental health team suggested a care assessment and only a friend with ME told me that there was a thing called PIP.

 

[Eleanor]

Every time Pacing and energy management and activity planning is recommended I want to see it clearly stated that this is likely only to be possible with support to daily activities, and a recommendation to ask the person something like "what help do you need in order for you to pace adequately to avoid PEM?", this should be mandatory, not once have I been asked this, only the mental health team suggested a care assessment and only a friend with ME told me that there was a thing called PIP.

This is so true and so important. When I first became ill, I was the full-time carer for one of my children who has a disability and needs quite a lot of support. The idea that I could put his needs second to mine to follow the clinic's suggested pacing plan was a non-starter. But every time I tried to explain that, there would usually be a bit of poorly disguised eye-rolling or tutting, as if I was choosing to be difficult.

 

[Jonathan Edwards]

That's not especially helpful to patients if recommendations aren't being followed, but it makes sense.

It might be helpful if the document pointed out that NICE decided GET didn't even work, let alone the worries about harm!

 

[rvallee]

I guess logically, it wouldn't. If a treatment shouldn't be used because it doesn't work and isn't cost effective, there's no point expending effort reviewing the potential harms of it.

That's not especially helpful to patients if recommendations aren't being followed, but it makes sense.

And then of course the usual standard is that it must be demonstrated that it does not cause harm. It can't be assumed that it doesn't, it has to be shown that it clearly doesn't. This is something they all know about but it doesn't apply to biopsychosocial junk.

It was one of the main arguments behind the "masks don't work" and the weird biased "review" of microclots from Garner. Treatments both have to demonstrate efficacy and clear lack of harms, not bothering to look whether they can cause harm is not considered acceptable. Only from psychosomatic medicine, because the fundamental assumption is that, despite the fact that it's likely the single most significant source of harm in the history of medicine, it cannot cause harm, which is typically argued because all the harms are dismissed, gagged and buried.

 

[bobbler]

I don't like that description of pacing. as 'carefully planning activities to avoid overexertion (PEM)'. PEM is not overexertion, it's a consequence of overexertion. And however carefully we plan, the key is symptom contingent pacing, not plan contingent pacing. Also we can't plan completely, as exertion thresholds are not fixed.
Also whatever we do is 'energy management' whether we do it by resting all the time or over exerting too much. So it's about doing what we can to avoid triggering PEM too often and too severely. Everyone in the world does 'energy management' and for most people it's fine however they choose to manage their energy. The difference for pwME is that if we don't manage it by restricting activity, we get much sicker.

I've noticed a tendency coming through from certain areas to try and interpret 'pacing' and 'PEM' as something that just needs a bit of advice from someone with a tenth of the experience in ME as you in 'how to spread your day out like a normal person would for marathon training'.

Because they don't like listening, and tend towards if they do 'taking the gist they fancy from the first few sentences' and using the misnomer of the word 'pacing'.

FOr that reason I think both 'pacing' and 'energy management' aren't necessarily useful terms

It totally misses the point of 'energy-limited' and the fact that it is cumulative too. ANd of course that it isn't about activity even, but eg. someone else's noise

when someone talks about 'planning' I think we can assume 'stupid' can't we? unless it is in the context of eg a trip or 'how do I manage that hectic work-week'

 

[Kitty]

when someone talks about 'planning' I think we can assume 'stupid' can't we?

Well, ill-informed at least.

I talk about planning because it's a useful word. But I usually add that planning changes constantly, because it's contingent on so many things and I have no way of knowing most of them at the time. Will I have unexpected PEM? Will I have enough cognitive function? Will I have had any sleep in the last 48 hours?

Or, from today: Will somebody have sent me an email that needs a brief response with couple of bits of information, which will take me over four hours to collate and compose?

 

[bobbler]

Well, ill-informed at least.

I talk about planning because it's a useful word. But I usually add that planning changes constantly, because it's contingent on so many things and I have no way of knowing most of them at the time. Will I have unexpected PEM? Will I have enough cognitive function? Will I have had any sleep in the last 48 hours?

Or, from today: Will somebody have sent me an email that needs a brief response with couple of bits of information, which will take me over four hours to collate and compose?

Yes I'm being somewhat facetious really, as I probably am more of a planner underneath it all than most due to the condition. I particularly hate doing things in the least efficient way or doing more work because I hadn't eg asked for something x a month ago, that I needed to be sent through in order to do y today, when it could take its sweet time and would all be straightforward but the alternative is 25 phone lines or an in-person trip if you need it in 2 days.

And most 'adjustments' to make life easier involve planning, like cooking veg or potatoes in bigger portions knowing I'm covered for the next 3 days. Or if I need to be at an appointment, knowing when I need to shower (and rest in advance of that) to both smell OK and be able to have a chance of function somewhat at said appt . Booking ahead for things to get more sensible timeslots. Then moving it if something else more urgent needs to be done too close to it.

But it is because of that I get suspicious of the 'top-level' type stuff that someone unfamiliar with living with it might think it was about, and is more like a misguided schedule of activities like a school holiday camp thinking about making sure the kids have a balance between sport and 'quiet activities' so noone gets too hyped or bored. And as if spacing things out magics energy for things, rather than you still get PEM for doing 5 things in 2 days, you just felt less fatiguability half way through the 3rd thing at best because you had a nap or didn't do 2 arm things in a row.

And on that note, I also get a cringey feeling when people acknowledge 'needing naps' that they think it's for different reasons than it is.

it often does the opposite and strips out the detail that you had in and needed, and isn't focusing on the 'biggest priorities for the month' and how you'll get them done without blowing your budget (which you will if you do them like normal people do - so how can you cut out energy from them), but instead a calendar of 'keeping yourself nicely busy and calm'. It starts from the wrong assumptions. people don't need to be told to spread their social activities, there will just end up being a limit to whether they can do any at all based on whether all their energy has got used up by their job or other essential commitments.

And when that doesn't fit, to be heard on what those realistically involve as complications those without ME mightn't have spotted and the need for room for the unexpecteds, so that the gap is acknowledged. Actually nothing more infuriating than when someone wants to 'simplify' the problem to 'disappear the issue' on paper.

 

[Haveyoutriedyoga]

Well, ill-informed at least.

I talk about planning because it's a useful word. But I usually add that planning changes constantly, because it's contingent on so many things and I have no way of knowing most of them at the time. Will I have unexpected PEM? Will I have enough cognitive function? Will I have had any sleep in the last 48 hours?

Planning to rest!

 

[Sean]

Maybe it is time to write the guidelines ourselves.

Only half-joking. We couldn't possibly do any worse.