The Agreed Care/Activity Plan

[Maat]

Is this part of paediatrics too?
The power imbalance there is huge, with very real impacts ( FII, foster care etc, with few options to disagree in some locations).
In areas where there is little option but to comply , a signed plan could be a dangerous thing in many different ways.

Exactly!

Trial By Error: Will MAGENTA's Null Results Finally End Professor Crawley's Long 'Reign of Error'? | Virology Blog

MAGENTA Trial: GET is not an effective treatment for ME/CFS - The ME Association

In the trial publication it is suggested that the reason for it may be that a longer and more intensified level of treatment is required. Future research etc....

 

[Jonathan Edwards]

But even then, in routine cases it's not normally scheduled as a minute-by-minute breakdown of what has to be done every day, with a planned set of fixed increments devised by a specialist.

And if you go private you just get told to do what you like it seems - I just asked my neighbour with a new knee. Except I suppose if they can claim more from BUPA by adding in some gym sessions.

 

[Maat]

Breaking down this argument, they propose:
A is central to R in the set N, which is a subset of P. (A=Activity, R=Rehabilitation, N=Neurological disorders, P=other physical conditions where activity is helpful)
So A is central to R(P).
∴ evidence of harm from A in ME/CFS required in order to not include A in R for ME/CFS.

Their assumption is that ME/CFS is in the set P (and may be in the subset N).

It's also possible that there is another set of physical conditions, called Q, where A is not helpful or harmful, and ME/CFS is in Q because of a pathological response to A. So A is not central to R(Q). Something else entirely may need to take centre stage.

The belief that set P is the universe is a problem.

Don't know if that will make sense to anyone else or if it would have been best left in my head!

You could just as well have been speaking in alien tongues for all the sense that made to me until - I reached the phrase "The belief that set P is the universe is a problem" that I got it.

 

[Sean]

It is extraordinary that the scientific trend in medicine that I was fortunate enough to be part of fifty years ago has been replaced by a sort of re-introduction of shamanism with waving wands and dancing about.

Which is why the BPS club are so keen on giving primacy to self-report subjective measures, as they are well suited to the techniques of snake-oil medicine.

But even then, in routine cases it's not normally scheduled as a minute-by-minute breakdown of what has to be done every day, with a planned set of fixed increments devised by a specialist.

It doesn't need to be, because as soon as someone with, say, a hip or knee replacement is able to walk to the toilet unaided after surgery, they will. As soon as they're given the OK to shower, they will. As soon as they can potter about their kitchen and make a sandwich, they will. They do as much as their current capacity will allow, and often end up rueing being a bit over ambitious—just like pwME.

Exactly.

This is why they have had to invent this whole psycho-phobia nonsense to 'explain' why their hallowed rehabilitation doesn't work. It can't possibly be because it actually doesn't work, and indeed is actively dangerous, so it must be because we either don't want it to, or don't do it correctly.

 

[Evergreen]

Isn't just the belief that R is beneficial the problem?
Where in any of this is R justified?
Encouraging activity is central to rehabilitation they say. But who says rehabilitation is good?

Well, the intention to improve someone's functioning is laudable, but the belief that those attempts are effective, and universally so, is on shakier ground. There's massive support in healthcare and the public for therapies and rehabilitation. And at least some of that is with good reason - for example, there's enough evidence for rehab in stroke and traumatic brain injury that I would be in line if unlucky enough to be in either category, within the limits of ME/CFS. I think a lot of the blind support for rehabilitation is based on the assumption that you've nothing to lose, that the only way is up. And that's where ME/CFS bursts the bubble.

I think it's entirely possible, and probable, that rehabilitation or some kind of therapy is beneficial in some ways for some conditions. Claims are overblown and universalised, lots of therapy is prescribed and done when it's serving no use, and that's really annoying. But in all the hundreds and thousands if not millions of studies on exercise and rehab and therapy interventions in every different condition, there are likely to be some decent studies with objective outcomes or adequate control conditions that show genuine benefit on some measures that are meaningful for patients.

For strokes, again, much of the care involves discouraging movements that cause spasm. Regaining useful movement is the aim but I think it is very simplistic to suggest that the aim is achieved by exercise. It is achieved by gradually introducing more challenging physical tasks to allow the person to re-learn to use limbs without being frightened and falling over all the time.

But who is saying the aim is achieved by exercise? Your last sentence describes rehabilitation after stroke.

I've been looking at what patients with neurological diseases say about exercise and physio, and it's just a very different story to that in ME/CFS. For example, in MS

Obviously it might be possible to make similar videos with enthused people with ME/CFS who are able to do a bit of exercise because of their level, or who improved over time and ascribe this to increasing activity, but I don't think either the MEA or AfME or other national patient organisations around the world would put a video like that on their sites, because there's too much negative feedback about exercise and increasing activity in ME/CFS.

If physio or activity or exercise even just made certain parts of me more comfortable, or improved my sleep, or boosted my mood without taking energy I need for normal life in the following days or being followed by a longer-term deterioration, then I would do them. The problem is, for me and apparently others with ME/CFS, they don't deliver those benefits, and they do deliver the pretty hefty side effects.

Are patients now expected to suspend our disbelief yet further, and accept the fact that the Faculty of Sport and Exercise Medicine (UK) know something which the Royal College of Haemotology do not?

Ha ha, sounds like the Royal College of Haematology knows something the Faculty of Sport and Exercise Medicine (UK) does not! Do they actively advise against exercise for polycythemia?

to 'explain' why their hallowed rehabilitation doesn't work. It can't possibly be because it actually doesn't work, and indeed is actively dangerous, so it must be because we either don't want it to, or don't do it correctly.

We're so frustrating for them. And the feeling's mutual.

 

[Evergreen]

Hoping someone can help me out here. What I'm a bit confused about in this discussion is the idea that one or more of these is true:

• plans are new
• the agreed nature of plans is new
• scheduling activity is new

All of these are part and parcel of what pwME/CFS have been enduring for a long time. There is nothing new about plans or agreement in the 2021 NICE guidelines or the BACME severe document that wasn't in the 2007 NICE guidelines. The bigger picture plan is called the "management plan" in the 2007 guidelines and the "care and support plan" in the 2021 guidelines.

The supposedly agreed nature of it all is highlighted throughout the 2007 NICE guidelines eg:

Healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the programme. The choice of the programme, its components, and progression throughout the programme should be mutually agreed and based on…

Establishing a stable and maintainable activity level (baseline) followed by a gradual and mutually agreed increase in activity.

If agreed GET goals are met, exercise duration and intensity may be increased further if appropriate, if other daily activities can also be sustained, and in agreement with the person with CFS/ME.

Stabilising supposedly bad activity patterns has always involved activity diaries and a kind of schedule or timetable - think of the laughably overactive GETSET Julie's before and after. Increases being timetabled seems probable, though I'd say most didn't bother timetabling them in advance. In an in-patient rehab setting there's always been an hour-by-hour timetable so the person and staff know what they're doing when. So if they've "agreed" increases these will feature on the timetable.

All of that has always been part of ineffective and harmful "rehabilitation" in ME/CFS.

Is there something genuinely new happening? Have people started being asked to not just agree on an activity plan verbally but also sign a timetable of what they will try to do hour by hour, and people are worried that places even more pressure on them than was already involved?

Or is it just that we wish the 2021 guidelines didn't actually allow it all to continue, despite being a vast improvement on the 2007 guideline?

 

[Trish]

The 2021 guideline is a big improvement because it says don't do GET with fixed increments, and don't do CBT based on false illness beliefs. And because it talks about staying within your limits imposed by symptoms and trying to avoid PEM.

If it stopped there, that would be great. But the guideline committee included therapists and doctors who work in rehab style clinics administering GET/CBT.

I suspect in order to get them agree to the new guideline, those people had to see a continuing role for themselves, so all the stuff about plans and goals and CBT had to be included.

The only role I can see for care plans is to provide information on agreed personal care needs, workplace and school adjustments needed, and specialist home and hospital care needs and how they will be provided, with contact details etc.

 

[Jonathan Edwards]

But in all the hundreds and thousands if not millions of studies on exercise and rehab and therapy interventions in every different condition, there are likely to be some decent studies with objective outcomes or adequate control conditions that show genuine benefit on some measures that are meaningful for patients.

I would be interested to know if there are. Having looked at studies around ME/CFS I came to realise that useless methodology was standard. The Cochrane exercise for ME/CFS review, in one version, was sent to me for peer review. My first, and last, thought was that not one of the studies was meaningfully controlled and since it was a review of controlled studies there was nothing to review.

Maybe there are decent studies for other conditions. BUT I found it interesting to see Lynne Turner Stokes strongly arguing that we need less of controlled trials and more emphasis on judging therapies from 'seeing them work' in routine practice - precisely the thing that you cannot do because you have no controls. If the controlled trials showed convincing benefit why does L T-S think too much emphasis is put on them?

I really don't know the evidence for stroke and brain injury but my limited personal experience of working in a rehab unit and watching friends and relations recover is that nobody has much idea what 'works' beyond providing a safe environment for people to follow a natural recovery process with moral support.

 

[Jonathan Edwards]

But who is saying the aim is achieved by exercise? Your last sentence describes rehabilitation after stroke.

Not sure what the question is but my point is that the programme is to help people judge when to try new tasks and very often it is a matter of taking it more slowly.

 

[Jonathan Edwards]

Is there something genuinely new happening?

I don't think anyone is suggesting anything new is happening. Quite the opposite, the concern is that it is more of the same.

What I was trying to pinpoint is that both the NICE Guideline (2021) and the BACME document on severe ME/CFS use this terminology of 'agreeing a plan' and focus on it as if it were highlighting an enlightened new person-centred approach to care. But to me it also carries the paradoxical implication that patients still have to agree to do their bit - and will find they are in trouble (even if it is claimed not) if they don't stick to it.

It is the double-speak that worries me. Like the double speak of 'tailored care'. The argument there is that there is no reliable evidence for any particular therapy so therapists should 'tailor the care' to the individual. But if there is no evidence that the therapy works at all, there will be even less evidence for anyone knowing how to tailor it.

 

[bobbler]

Well, the intention to improve someone's functioning is laudable, but the belief that those attempts are effective, and universally so, is on shakier ground. There's massive support in healthcare and the public for therapies and rehabilitation. And at least some of that is with good reason - for example, there's enough evidence for rehab in stroke and traumatic brain injury that I would be in line if unlucky enough to be in either category, within the limits of ME/CFS. I think a lot of the blind support for rehabilitation is based on the assumption that you've nothing to lose, that the only way is up. And that's where ME/CFS bursts the bubble.

I think it's entirely possible, and probable, that rehabilitation or some kind of therapy is beneficial in some ways for some conditions. Claims are overblown and universalised, lots of therapy is prescribed and done when it's serving no use, and that's really annoying. But in all the hundreds and thousands if not millions of studies on exercise and rehab and therapy interventions in every different condition, there are likely to be some decent studies with objective outcomes or adequate control conditions that show genuine benefit on some measures that are meaningful for patients.


But who is saying the aim is achieved by exercise? Your last sentence describes rehabilitation after stroke.

I've been looking at what patients with neurological diseases say about exercise and physio, and it's just a very different story to that in ME/CFS. For example, in MS

Obviously it might be possible to make similar videos with enthused people with ME/CFS who are able to do a bit of exercise because of their level, or who improved over time and ascribe this to increasing activity, but I don't think either the MEA or AfME or other national patient organisations around the world would put a video like that on their sites, because there's too much negative feedback about exercise and increasing activity in ME/CFS.

If physio or activity or exercise even just made certain parts of me more comfortable, or improved my sleep, or boosted my mood without taking energy I need for normal life in the following days or being followed by a longer-term deterioration, then I would do them. The problem is, for me and apparently others with ME/CFS, they don't deliver those benefits, and they do deliver the pretty hefty side effects.


Ha ha, sounds like the Royal College of Haematology knows something the Faculty of Sport and Exercise Medicine (UK) does not! Do they actively advise against exercise for polycythemia?


We're so frustrating for them. And the feeling's mutual.

truth is I think there are probably a lot of others it doesn’t work for who are just more able to walk away and not have to say anything, it’s just the coercion issue used on CFS means we’ve been the poor so and sos they got obsessed with because they had to say it

 

[Jonathan Edwards]

I've been looking at what patients with neurological diseases say about exercise and physio, and it's just a very different story to that in ME/CFS. For example, in MS

Interestingly that is probably not very different from what you would get if a video was made by Recovery Norge on the Lightning Process. Clearly people with MS get pleasure out of proving to themselves that they can do exercise and will no doubt get the buzz anyone gets, unlike PWME, but whether the exercise is doing them any good ??

 

[Kitty]

But to me it also carries the paradoxical implication that patients still have to agree to do their bit

The irony is that if they didn't have this completely arse-about-face, it might actually be useful for some pwME.

I've had ulnar nerve impingement, probably from learning a batch of reel sets on the whistle. It involves repeating the same arpeggiated phrases over and over to get them up to high speed.

The physio and I agreed that for two weeks I'd only play slow airs and slip jigs, stop if it hurt, and stop after 30 minutes anyway. When it only improved a bit, the period was extended. Anyone with half a brain wouldn't need to be told in the first place, but for obstinate mules like me it's helpful for someone to put their foot down and say this is the cause of the problem, so stop it.

The same thing happens with some mild/moderate pwME, and they might benefit from having somebody advising them (or perhaps giving them permission) to ease back when they're getting warning signals.

 

[Maat]

I can't see anything new. Consent doesn't need to be a signed document.

For example, when the community nurse visits me at home to take bloods, I've already been contacted by the the surgery and the GP has explained to me why they want to take blood samples. The fact that I let her in and present my arm for her to take bloods, in law, is classed as informed consent.

The GP has obviously not explained all the science behind the blood test, only the purpose and what it's expected achieve and the risks involved in having blood taken. I trust the GP and have understood that the fact that even giving blood is fatiguing. (Think about why we are banned from giving blood.)

So, in that scenario, I know why, what it's looking to achieve and I know the material risks. I therefore give informed consent, if I chose to. A very large part of that process involves trust.

In my earlier example of being given bloods with the drip already in my arm, at the same time as the HCP is only at that point telling me why it's there, what it's supposed to achieve and any material risks associated with it, is lack of informed infored consent. It has to be prior to the 'treatment'. Otherwise, it It has removed the patient's autonomy. Obviously the exceptions are where patient is unconcious or uncommunicative, or sectioned.

"if other daily activities can also be sustained" ​

that's key when kids are trying to do some school hours, or people are still trying to work. They are not in t he position of power to push back over pressure to increase workload at the same time as agreeing activity/rehab and just doing the rest of life stuff.

The explanations patients are being given in these activity/rehab discussions is not unbiased, balanced information, nor highlighting the 'material risks' before consent i.e. agreeing to the activity and embarking upon it. There has been a wholesale loss of trust and a total breakdown of the 'therapeutic relationship.

 

[Maat]

Ha ha, sounds like the Royal College of Haematology knows something the Faculty of Sport and Exercise Medicine (UK) does not! Do they actively advise against exercise for polycythemia?

Secondary Polycythaemia of 'unknown' origin is my diagnosis subsequent to a CFS diagnosis by about 6 years. Apparently my haematologist didn't think it was connected with my severe ME. I got that smile, you know the one.

Exercise intolerance, fatigue, cognitive difficulties etc.
Secondary Polycythemia - StatPearls - NCBI Bookshelf (nih.gov)

However, this was before the pandemic. After the pandemic this:

Secondary Polycythemia Associated with COVID-19 Is Associated with Higher Mortality but Does Not Seem to Affect Thrombotic Risk | Blood | American Society of Hematology (ashpublications.org)

 

[Evergreen]

Maybe there are decent studies for other conditions. BUT I found it interesting to see Lynne Turner Stokes strongly arguing that we need less of controlled trials and more emphasis on judging therapies from 'seeing them work' in routine practice - precisely the thing that you cannot do because you have no controls. If the controlled trials showed convincing benefit why does L T-S think too much emphasis is put on them?

Totally agree. Their argument in that editorial was mind-blowing. For anyone who can't access it https://www.bmj.com/content/371/bmj.m4774.long, Turner-Stokes and Wade argue that

• integrated/holistic/person-centred rehabilitation was "basic common sense"
• NICE "fail to understand the fundamental principles of good medical practice in these complex, multifactorial conditions"
• NICE is to blame for people being offered just GET or just CBT, and thus for trials of those therapies "having overall success rates of under 50%" (who knows what that refers to)
• based on aforementioned common sense alone, NICE should have recommended completely untested integrated rehab for ME/CFS

Then they

• U-turn and laments that NICE "downplayed the evidence" that "some patients with CFS/ME do benefit from various components of rehabilitation"
• say that "if NICE is to serve any useful purpose in this arena [complex interventions for complex conditions], it needs to develop a more appropriate way to evaluate evidence" through "systematic collection and longitudinal analysis of real life clinical data on a large scale", without any suggestion of how you would evaluate such evidence
• before landing one final punch on GET/CBT as "piecemeal, disjointed".

Summary: NICE is dumb, GET and CBT are dumb, but they work, but really what we need is this other thing and for NICE to stop evaluating evidence, because they keep concluding that what works doesn't have good evidence, and that's annoying, because...common sense.

It really laid bare the approach, which is evidence-free, based on a strong belief, nay, knowledge, that what they're doing is effective, and how dare NICE not rubber-stamp that? And I'd say health professionals delivering GET/CBT/AM were pretty insulted, to be honest, not least because they, too, "know" that what they're doing is effective and holistic and patient-centred.

The argument there is that there is no reliable evidence for any particular therapy so therapists should 'tailor the care' to the individual. But if there is no evidence that the therapy works at all, there will be even less evidence for anyone knowing how to tailor it.

Absolutely.

the programme is to help people judge when to try new tasks and very often it is a matter of taking it more slowly.

There's a lot more to it than that, but we don't need to get into it.

I don't think anyone is suggesting anything new is happening. Quite the opposite, the concern is that it is more of the same.

Thanks for clarifying. Yep, I share that concern, but I'm interested to know what feedback is to the MEA and AfME on people's experiences at clinics post-2021 guidelines - I hope there's some improvement in the situation.

 

[Evergreen]

truth is I think there are probably a lot of others it doesn’t work for who are just more able to walk away and not have to say anything, it’s just the coercion issue used on CFS means we’ve been the poor so and sos they got obsessed with because they had to say it

I think they got obsessed with us because we stubbornly can't comply and don't improve despite being, in their minds, needlessly disabled.

 

[Trish]

The same thing happens with some mild/moderate pwME, and they might benefit from having somebody advising them (or perhaps giving them permission) to ease back when they're getting warning signals.

I have been seeing a few comments on social media from people using the Visible app that it's telling them they need to slow down some days because they are overdoing exertion, and the pwME saying it's really helping them with pacing. I have no idea whether its algorithm is actually picking up something real or not. It might be interesting to do a study where half the people are advised by the app using their algorithm and half are given random advice on when to slow down.
The point in this context is that probably most of us need to be told to slow down, not to keep pushing. Or at least I do. But I don't want a therapist acting the expert when they have no real idea.

 

[Kitty]

The point in this context is that probably most of us need to be told to slow down, not to keep pushing. Or at least I do. But I don't want a therapist acting the expert when they have no real idea.

Exactly. But in some cases a (properly trained) therapist might have a place shortly after diagnosis, helping to guide people through getting a sense of their activity capacity and reassuring them that slowing down is not only okay but strongly recommended.

It's always hard, but especially so to begin with. They may beat themselves up about being lazy, especially as there'll be no shortage of people around them who think the problem is that they're not trying hard enough.

 

[Evergreen]

Interestingly that is probably not very different from what you would get if a video was made by Recovery Norge on the Lightning Process.

My next sentence was important! My point was that the MS video was posted on what looks like a national MS patient organisation site, and I don't think you would see that on a national ME/CFS patient organisation site. You would expect it from a group like Recovery Norge.

Obviously it might be possible to make similar videos with enthused people with ME/CFS who are able to do a bit of exercise because of their level, or who improved over time and ascribe this to increasing activity, but I don't think either the MEA or AfME or other national patient organisations around the world would put a video like that on their sites, because there's too much negative feedback about exercise and increasing activity in ME/CFS.