Pacing up - why it's as harmful and unevidenced as GET

It took me years to 'pace up' and figuring it all out. Feeling better doesn't cut it either. You can feel great and still be unable to increase in tiny steps. I consider myself fortunate, most people just can't.

 

That’s brilliant @Trish
Very helpful summary explainer to give to all the people who don’t understand what ME is and why it’s so difficult to manage.

 

I recommend against exercise. But I am also open to this being a situation where the poison is also part of the treatment.

Consider electrolytes in cholera. Until they figured out the perfect osmotic ratio for electrolytes in oral rehydration solution, giving electrolytes killed the patient. The correct move was to not give electrolytes, they were very dangerous.

What was needed was a framework for how to think about what exactly needed to be balanced, something to measure. Only once the correct osmotic ratio was found was oral rehydration effective. (Note giving electrolytes didn't cure the infection, but it does reduce the symptoms and make the patient stronger.)

We don't have a way to measure what it is that exercise exacerbates and what, if anything, it improves. Until we do, exercise is too risky to implement for 95% of patients.

For me, I can improve my fitness if I nail an amount of exercise that is in that ultra narrow window where I extend myself slightly but without pushing into PEM. Being fitter doesn't cure my me/cfs but it does push out my pem threshold because what counts as exertion is more and more. it's very slow to get fitter when I can't thrash my body, but it is possible for me, slowly, slowly.

Hitting that window is very difficult, even for a person who is mild. The amount I can do is variable day to day and the type of exercises that work are few (walking: no; recumbent strength: sometimes yes). The window is probably small enough to be effectively closed for people who are moderate/severe. I do not recommend exercise to you. Nor do I consider it a cure. it will probably make you worse. Nevertheless I believe for me it is something that when I get it right can make my symptom burden smaller. I suspect that if we had some metrics, nailing that exercise window would involve less guesswork and be possible for a wider group of mild patients.

 

I'm relishing doing a full read of this later. I'm assuming it was really someone asking 'but why can't we just....' (ie not really about the patients, but bargaining/negotiating)

Just wanted to add the following (which might be covered in this) whilst I remember:

1. the guidelines 'spirit' is no 'treatment/management approaches based on the paradigm or assumptions that ME/CFS is an illness caused by deconditioning or false beliefs'

Sadly I didn't spot that anyone would be so dead cert on trying to split hairs to find a way around this clearly saying 'it's not an illness where pushing people will help' ergo no treatments suggesting people 'increase'

2. the reason they are happy to now switch to pretending they are offering supposedly 'flexible' 'pacing up' I'd guess is a naughty attempt at skirting liability, given I think there is enough evidence that what they've done in the past with GET harmed a lot of people, so they'd be on a sticky wicket trying to pretend it wasn't foreseeable eg if the next person ended up more disabled and you know tried to say it was caused by that.

By them pretending it is 'flexible' they seem to be using that naughty pretence of no coercion and 'it's up to you but you won't progress or get better if you make no effort' and yet if you then get worse 'it was you in charge'. ie a way of making the patient wear 'ownership of the consequences' of their own refusal to either care enough about harms to read the research and you know open their eyes and ears when any patient feeds back to acknowledge it and also still blame them for their 'cure' not working rather than it being an ineffective treatment for a condition that isn't caused by deconditioning.

Which of course means they can blag it's behavioural rather than if a patient is deconditioned it's because the illness debilitates them and means should they try and recondition that underlying illness would get worse (leading to worse deconditioning long-term). SO of course we then have what another few decades of trying to explain to them whatever they want to 'insert name/term' pretend they are 'tackling' it's an illness where any variation of what they want to push is counter-productive to the underlying condition and ergo will by virtue of worsening that also worsen any 'symptoms' they now claim that 'treatment' is 'just helping with' (and not 'the illness'.

 

Worth also asking said person to describe the last time they had a really bad haircut. And then slowly keeping asking them questions to describe the situation, like were they tired, had it been a long day, did they have flu or lots of other worries like having lost their job or maybe will lose it struggling to care for someone etc

And then saying and what was the person who cut their hair like, how did they treat you during the appointment, did they suggest the haircut would be one thing and they'd like it and it was something else at the end, did they start up a rapport, was it someone they used for years.

And then ask whether they complained. And if they did/had who would have heard and dealt with that complaint and would it have ended up going down as them being mad and would those individuals have been able to write anything about them or say things that will affect eg your career, medical care, access to other financial things in the future.

In that situation when the person said 'what do you think' encouraging them that they'll feel a lot better with that new hairdo... did they 'fake it' and tell them what they were being told that person wanted to see them performing seal say?

And do you think if it turned out then when they got home and over the next months had been really bad that they'd return to said salon to show that person how it had really turned out? So all their clients who never came back had been cured by the haircut?

Or imagine it's something a little bit longer like a work performance course they'd been sent on.. are they going to be telling the course leader it's not working for them or doing all they can to turn up and look interested even if it means sacrificing their usual social hobbies for those weeks. And telling them of course they'd done all the homework exercises religiously and what useful ideas they are that will change them as people.

And ask them why they think they aren't gaslighting and bullying you by trying to relegislate something people went through over a decade to prove the harm on and get removed means that you still have a sophist telling you to explain yourself when there's been a guideline that already explains it in detail (that took 3yrs doing this, with parliamentary debates doing it for years before) for 3yrs, rather than them explaining themselves on why they are claiming they are not being able to understand that 'no means no' on what they fancy doing and wangling around a clear boundary for the sake of it.

and if really when they call themselves 'helping' are they really any different to the examples above in what they are doing , they just need to open their eyes that it's not 'clinical experience' or 'science' they are quoting as anecdotes.

And they aren't asking you because they want to learn or are interested or care about patients experiences or outcomes from doing it. They are trying to pressure you to say that their 'reframed' wishful thinking that something which has been confirmed as a bad idea somehow now maybe isn't a bad idea (just because they want it to be) is 'true'

Which says it all really about me probably being spot on about the above

but hey things are likely to look very different if you’re the hairdresser trying out that same hair dye that turned the last ten customers hair green again, convinced that this time it won’t even though you just changed what you called it, than it is being the customer - particularly a customer whose come back because you were brave enough to show them your green hair result from two days ago and assume their fixing it will involve something more than denial then inferring maybe it’s how you cared for it?

 

Thanks @Trish I'm having trouble with understanding 'contingent' as in symptom contingent. It may be that I am thicker than most people? I have looked up the meaning and I need to read it as subject to symptoms or depending on what symptoms one has at the time?

 

Cumulative inputs over time triggering PEM is something that is commonly not understood at all.
Nor the fact that emotional impact can be a huge impact , nor that what's fine one day may not be fine the next / another time

Thank you @Trish

 

A really excellent exposition, @Trish.

Despite your justified request to consult the committee before allowing anyone to write educational essays for S4ME I would say that this fits the bill down to a tee. It covers PEM beautifully. It more or less makes a separate essay on PEM redundant but one way to do it might be have a title like 'The key significance of PEM in ME/CFS and why 'pacing up' is as harmful and unevidenced as get.'

I particularly like the point that pwME/CFS (a tricky one) have all these other features that can easily be conflated with PEM - fatiguability, DOM, exercise intolerance. PEM is as you say a sort of resetting of the thermostat for all the other things in a way that does not seem to occur in other conditions (it might in lupus maybe) and in a pattern that does not fit any understood regulatory mechanism or simple baseline 'energy deficit'.

I can think of one or two places where pacing up enthusiasts will come back at this and say 'but actually we do see the benefits of this in our work' and that can be responded to by underlining the lack of evidence, making use of some citations (even including PACE and the dreaded Larun review). I can hear Andrew Goddard, one time President of RCP saying just that, like a stuck record, and also an ME/CFS service physician I can think of, not to mention the assembled membership of BACME. I can think of possible ways to capitalise on that without burdening the text of the essay above, which reads beautifully as it is.

 

Great post Trish. Pacing up does seem to be a rebrand of GET and differentiated because it isn't a set graded process. But it's still asking people to magically do more without any treatment to address the disease. I just don't get why we are expected to just do more and our bodies will comply.

It does of course place the responsibility onto the patient to monitor their activity and response and there is a myriad of issues with this as we know how unpredicatable PEM can be. Yet it's also very convenient for the clinician because they get to still adhere to the previous BPS model and not say they are wrong, discharge responsibility and say it's 'safe'. The whole MECFS clinical edifice doesn't have to be changed as GET is just remoulded.

I would say it's common in Long Covid clinics too as it's the basis of the rehabilitative approach, which needs scrapping. As with no objective way to measure PEM and for people to dance along the fire line of PEM to try to do more is just unsafe and riddled with issues.

 

A point I think is worth emphasising whatever way one can is that lack of fitness or a need to restore fitness is not the problem in ME/CFS. I know of colleagues who can have barely been able to walk using two sticks for decades. Yet they have fulfilling and productive professional lives. Nobody needs to be fit. I had a patient with dermatomyositis who took ten seconds to balance her body when standing out of chair, before she could dare to take a steady step, like someone on a tightrope. But she had worked in earlier years with her illness and in later years the quality of her life was not dependent on her weakness. She managed it. Think of Stephen Hawking. It isn't the problem, even if it would be nice to be able to run upstairs.

The problem as I see it is the overwhelming cloud of symptoms that not only make it impossible to even use what muscle power is there and then to go on using it, but also to focus on any mental activity at a level needed for work or social interaction. There is no reason for thinking that doing more and increasing fitness will alter this a jot.

 

Surely NICE 1.11.14 is relevant here:

'Do not offer people with ME/CFS

physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.'

Page 34
chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.nice.org.uk/guidance/ng...e-diagnosis-and-management-pdf-66143718094021

.

 

It is, but I think it is worth pointing out just how barmy it is to try to solve the problem with exercise whatever your theory (if you even admit to having one). The therapist can say 'Oh no we don't use the reconditioning theory any more but surely it is good to increase what people can do?' As Maeve Boothby O'Neil said eloquently months before she died, even if it does not harm it is a complete irrelevance to treating her illness. (It might be good to have Maeve's message up on a educational webpage alongside Trish's essay. They complement each other beautifully.)

Maeve, early 2021:

'I have been tired since I was 13. When I was 18, I was diagnosed with CFS/ME.

I hoped diagnosis would help, that I would finally get treatment and recover my health. I had every potential to be an asset to humanity - I achieved A* and A grades and had offers from Russell Group universities. I had to reject them. After school in 2012, I quickly became housebound and was unable to access in-person clinics offered by my local NHS Service, but I had been a good scholar and was determined to be a good patient. I attempted to follow the workbook they gave me, find my high-energy activity baseline and increase it by 20% % every fortnight, provided this didn’t bring on symptoms. It didn’t work. My baseline shrank. I rarely had the energy for telephone CBT with an OT, whch was never helpful. Physical stamina was the wrong paradigm, nor was the issue my thoughts or feelings or behaviour. Since then, my health has only deteriorated. I am now 26.

I cannot adequately describe how frightening it is to find at 18 that the only treatment which medical professionals are offering does not work, and that you are getting worse, not better. How frightening to discover that there are no doctors who can help, that they do not even know what is wrong with you, and that in looking for effective alternatives you will be wandering in a wilderness of quacks and blogs.

I know of nobody who has benefitted from GET. I know a lot of severely affected people whose decline was precipitated by it. Evidence of harm is mostly anecdotal because large, rigorous studies have not been done. And regardless of demonstrable harm, if treatments available are irrelevant to a large proportion of patients, it is not adequate. Biomedical research must be done to understand what is happening to our bodies.

This is not political, it is existential. I have no reputation at stake. I am fighting for a chance to live. I need physicians to work with me, not hamstrung by guidance that is actively unhelpful. Persisting with aGET/CBT approach on grounds that it has an evidence base when that base is fundamentally flawed, will do nothing for severely affected patients, for many of whom severity has been increased by treatment.


Having come so far to recognise the needs of patients, particularly the severely ill, I profoundly hope that NICE will not backtrack. My only hope lies in research, and adequate funding for this requires the medical establishment to set aside the inaccurate idea that behavioural treatments can cure ME.’

 

I haven't been able to increase aerobic(brisk walking) exercise in over 25yrs, I'm fine with it and stay at that level, but I have been able to slightly increase anaerobic exercise in the last year and a half by building arm muscles. I'm not increasing anymore even if I feel that I can. The unknown PEM pathophysiology scares me and I want to avoid possible damage long term because we don't know enough yet.

 

Excellent Trish!
I thought we are all type A Alpha overdoing perfectionists. The worst thing you can do with people like that is say “don’t overdo it, just do a little bit” /sarcasm

Pacing up always reminds me of why you’re not allowed to do weight watchers etc if you have an eating disorder. Because it supports you in doing something which is very bad for you - focussing on food restriction and exercise. Now why would you have people who are suddenly medically exhausted and don’t want to be, thinking about doing a bit more, rather than resting and establishing a so called “baseline”. I honestly think you need more than a year to establish a “bandwidth” baseline.

Also, I am constantly having recommendations for NHS diet courses, apps etc. I can evade this easily by telling the GP or HCA that I had an ED when I was younger, then they can’t let you do it and it stops that pressure from them.