The Agreed Care/Activity Plan

[Trish]

The NICE guideline isn't perfect. Sadly it stll allows for exercise programs for those who 'feel ready', but it does specify that this has to be within limits imposed by PEM, not pushing through them, as GET does. And it does, make it clear they mean symptom contingent.

I agree, @Evergreen those stakeholder comments are revealing of what we are up against.

 

[Kitty]

Every time I read through a thread like this, it makes me think the only rational thing to do is call for a boycott of these clinics.

But that doesn't help people with very severe ME. Maybe there should be push for a statement of needs, since 'care plan' seems to have become a slippery phrase?

 

[Evergreen]

The NICE guideline isn't perfect. Sadly it stll allows for exercise programs for those who 'feel ready', but it does specify that this has to be within limits imposed by PEM, not pushing through them, as GET does. And it does, make it clear they mean symptom contingent.

Yes, and those specifications are a big improvement, a sea-change of an improvement. But the guideline does suggest that flexible GET is safe and can be beneficial, while fixed GET is to be dumped, and as Jonathan said above, there's no evidence for any increases being advisable.

Given my penchant for length, and since I have it open, I'm going to post the conditions for increasing physical activity from the updated NICE guideline. Might be helpful for someone doing rehab who finds this thread:

Incorporating physical activity and exercise
1.11.9 Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms.

1.11.10 Only consider a personalised physical activity or exercise programme for people with ME/CFS who:
• feel ready to progress their physical activity beyond their current activities of daily living or
• would like to incorporate physical activity or exercise into managing their ME/CFS.

1.11.11 Tell people about the risks and benefits of physical activity and exercise programmes. Explain that some people with ME/CFS have found that they can make their symptoms worse, for some people it makes no difference and others find them helpful.

1.11.12 If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team.

1.11.13 If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:
• establishing their physical activity baseline at a level that does not worsen their symptoms
• initially reducing physical activity to be below their baseline level
• maintaining this successfully for a period of time before attempting to increase it
• making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits
• recognising a flare-up or relapse early and outlining how to manage it.

1.11.14 Do not offer people with ME/CFS:
• any therapy based on physical activity or exercise as a cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
• physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

Box 4 Graded exercise therapy definition
Graded exercise therapy is a term used in varying ways by different services supporting people with ME/CFS.
In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken.
An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13.

 

[Binkie4]

The Workwell foundation comes to mind here. When in about 2016, I became concerned at the tdeterioration in my physical functioning, I found an exercise physiologist ( Ph.D) and discussed with her trying to see if I was capable of improvement, but it had to be within the Workwell framework/ my energy limits.

The exercise physiologist was great and read the documents from Workwell, and we began a very cautious programme. She stopped it because she was unhappy with some measures eg BP, and sent a recommendation to my GP that I should see a cardiologist.

The central point here is that I was in control. I only did what I felt capable of within a framework which had an understanding of ME and my energy limits, nobody was directing me to achieve a, b, c within a certain time. It felt safe and that was the only reason I could consider it. Seems close to 1.11.10 to 1.11.13 in the new Nice guidelines in last post.

edit: am currently depleted and writing is a struggle. needing to rest so may not be around for a while.

 

[Maat]

For example, see the stakeholder comments on the draft NICE guidelines:

(Interestingly, the British Society of Rehabilitation Medicine is against exercise for exercise’s sake, and its comments would seem to suggest that it would be against GET, but for the approach to activity increases in CBT and AM.)

Thank you that's really useful information.

 

[Evergreen]

@Maat here's more in case it helps, as these are massive unwieldy documents:

The British Society Of Rehabilitation Medicine's comments start on p.99 of this 1137-page document https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses, which is one of two consultation comment documents (the other is 1342 pages and is here https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-4).

This is on p.129 of the 1137-page doc:

exercise, when referring to activities such as attending a gym, or doing exercises for their own sake are not essential, and it should only be included if the person specifically enjoys that type of activity

But they are also generally for increasing physical activity, eg they say, on p.128

there are treatments that can help many patients regain some of their lost activities and experience less pain and distress: exercise (in general, not graded exercise therapy as characterised in this guideline); cognitive behavioural therapy, anti-depressants for people with depression, etc.

So if you were going to use it you would need to read through all of their comments in detail.

 

[tuppence]

In the 1960’s my parents worked in a very large Mental Hospital, my father as a manager and my mother as a nurse. Housing was provided for quite a lot of the staff and as a young teenager that was my home environment for 6 years.

Psychiatry has not produced a cure for any medical condition that I am aware of. What it was very good at before the 1950’s was taking so called ‘bad or mad behaviour’ and removing it from sight by locking people away. Psychiatries next big breakthrough was to create a chemical concoction in the 1950’s that did a very good job at controlling diagnosed difficult, bad or mad behaviours.

In the school holidays I helped out in the hospital dispensary counting out pills to fill the scripts that came in daily. The pharmacist would give me huge jars of ‘largactil’ and tell me how many pills to count out against each scrip. My work was of course checked that the right medicine was being sent out. It was called the ‘chemical cosh’ by Doctors and nurses and was by far the largest dispensed item from that pharmacy. In the end it was this family of drugs that meant patients could be treated in the community provided the patient complied or was compelled to take the drugs.

Wessely and co’s breakthrough for Psychiatry in terms of expanding the specialisations future is to expand the diagnosis of ‘unacceptable behaviour’ to all chronic illnesses for which the causation is not or only poorly understood and for which biological medicine has no cure or even worse an objective diagnostic marker. Wessely and co answer that situation in the time honoured way of Psychiatry by saying it is not Doctors or Societies fault that these patients cannot be cured of exhibiting chronic illness which is not life threatening, but it is the fault of the patients bad behaviour. They claim without evidence that ‘Psychiatry’ can take care of that, if only we can force the patient to engage. Psychiatry has always operated by seeking to control bad/mad behavior and society has always largely granted them the tools to try to do the job.

That Wessely and co pitch is attractive to powerful forces like politicians, insurers and hard pressed Health Service Providers, however they are funded. They in effect place the whole burden of the patients chronic ill health wholly on the patients with the tragic results we the recipients all feel and see, but the public very largely don’t.

That is the minefield we are in and it is a struggle for power. We have to use what power we have to navigate that minefield to keep as safe as we can. It is what I saw the patients in the mental hospital do even though they had little power. I saw their little acts of resistance and I saw the forceful pushback by those who cared for them. Even the most stubborn amongst the patients were ground down in pretty short order by the chemical cosh and blended into the background as a result.


Today we have a slightly better distinction between bad behaviour and mad behaviour so if you are just diagnosed bad and not Mad your power is always to ask for something better. A start is choosing to work with those who show willingness to listen carefully to you and who respect your right to withhold consent to that you can show them has been harmful to you. Most will not accept that what usually works in general care, wont work in ME.

The issue of informed consent is our major weapon and the battlefield over which we all struggle. That is the limit in progress we have made as a society. The diagnosed bad are not necessarily defined as Mad as they once were, but Wessely and co are doing their utmost to expand the reach and breadth of Psychiatry by diagnosing new areas of ‘bad’ behaviour which Psychiatry can claim for themselves. The process appears to me entirely money driven, with the well being of the patient a distant afterthought at best. It is the only rational explanation I can apply to the BPS continued behaviours ie they derive economic and power benefits from their activities. If they were interested in patients well being they would have stopped years ago given the failure of their hypothesis and treatments.

In navigating this battleground my late wife found that she always had to consent to try something in order to physically demonstrate the resultant harm. The tried treatments\therapies brought no benefits and always made her worse with the HCP recognising this and stopping the treatment\therapy. She only ever consented to this with Doctors who listened and accepted the biological basis of her illness, which they variously diagnosed as PVFS/ME and later ME/CFS.

Her plan, having tried to assess just how harmful it might be was to say; OK I will try this as long as we keep it under review and when it has made my illness worse it will be immediately discontinued. I don’t know if that is a care plan or a negotiated contract, voluntarily entered into by two parties with each being trusted to honour the contract.

Ideally my late wife would have wished to withhold consent for most of these trials if not all of them. It was the price she paid for access to support with benefit claims and getting a blue badge etc. It was her side of another economic exchange and also saved her from even worse medical care from those who do not accept ME/CFS as a biological illness.

This compromise of hers gave her much longer periods of being in control of what happened to her own body, but not complete control. That will take a sea change across Medicine and Society as a whole. Words and agreements are not enough it is the way they are actioned, implemented and used which counts, too often this is done very badly.

 

[Kitty]

In navigating this battleground my late wife found that she always had to consent to try something in order to physically demonstrate the resultant harm .... Her plan, having tried to assess just how harmful it might be was to say; OK I will try this as long as we keep it under review and when it has made my illness worse it will be immediately discontinued.

I faced some of that too. Except after the first trial (antidepressants—bloody awful), I decided I'd accept the prescriptions for the reasons you state, but shred them when I got home. It seemed the least hazardous way of handling patient consent under the circumstances, but neither your late wife nor I should have been put in that position.

 

[Sean]

The clear problem is that therapists will use the fact that a 'plan has been agreed' to lean on patients to do what the therapist thinks is best and to go on doing the plan even when it turns out to make them worse. I have recently talked to health care professionals who quite explicitly say that is the right thing to do. To push people. And children at that.

This is exactly what is going to happen. It will quickly become coercive, and unfalsifiable patient blaming for the inevitable cruel failures will be the ubiquitous all-purpose cast-iron excuse.

––––––––––

deconditioning (lack of cardiovascular. respiratory and muscular fitness) is not the cause of chronic fatigue syndrome, but it is undoubted a consequence of chronic fatigue syndrome and reducing its effects needs to be integral to any self-management plan​

Yet they have never properly tested patients to find out if we are actually deconditioned, nor have they yet demonstrated any actual reduction in this putative deconditioning by any means, let alone their sacred exercise.

We would therefore need robust evidence of harm from exercise in ME/CFS to justify any recommendation that goes against established rehabilitation practice.​

Which is completely the wrong way around. Not to mention that they go out of their way to not look too closely for harms, and misinterpret it and misattribute its causes at every turn.

These clowns are doing everything they can to avoid finding out the truth, because they suspect, quite correctly, that it will be lethal to their reputations.

 

[Kitty]

We would therefore need robust evidence of harm from exercise in ME/CFS to justify any recommendation that goes against established rehabilitation practice.

No, they need robust evidence that established rehabilitation practice works in pwME before they can justify using it.

 

[Wonko]

It's the mindset that tells people that playing in traffic will cure ME, but when inevitably people get harmed by this it's not down to the 'treatment', it's not harm caused by inappropriate activity for a pwME, it's caused by traffic, and traffic, not a medical issue, not related to any medical issue, presumably meaning that injuries caused by it are psychological.

I realise that it's a rather off the wall example, currently, but it's the same mindset, just with slightly more obviousness as to why it's absurd and would obviously cause harm, to people, as they display.

 

[Kitty]

Yep. Where else would clinicians say they're going to take an established treatment protocol for one condition and use it on an entirely different one until there's evidence of harm?

 

[Evergreen]

Association of British Neurologists
“We know that encouraging activity is central to rehabilitation in all neurological disorders as well as other physical conditions…We would therefore need robust evidence of harm from exercise in ME/CFS to justify any recommendation that goes against established rehabilitation practice.”

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!

 

[Jonathan Edwards]

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

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?
Maybe by rehabilitation they mean the outcome of being rehabilitated? So R is good by definition.
But them they talk of rehabilitation practice.
The statement is a joke in terms of trying to justify on the basis of evidence.

This sounds a bit like Lynne Turner-Stokes talking.

 

[Maat]

@Maat here's more in case it helps, as these are massive unwieldy documents:

The British Society Of Rehabilitation Medicine's comments start on p.99 of this 1137-page document https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses, which is one of two consultation comment documents (the other is 1342 pages and is here https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-4).

This is on p.129 of the 1137-page doc:


But they are also generally for increasing physical activity, eg they say, on p.128


So if you were going to use it you would need to read through all of their comments in detail.

Awww heck @Evergreen yes it does. I was 'actively' avoiding reading through those weighty tomes, just not within my cognitive capabilities.

For example, this quote:

"Faculty of Sport and Exercise Medicine (UK)
“Fundamentally, this guidance abandons the first principles of rehabilitation and advocates that we do nothing other than try to prevent decline. However, it restricts the fundamental tools which we use to prevent decline in every other condition – mainly physical activity.”

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?

Exercise intolerance in Secondary Polycythaemia of 'unknown' origin for which I'm currently taking my asparin tablet each day to treat the hypoxia I experience.

 

[MSEsperanza]

But who says rehabilitation is good?

In Germany at least, I'm afraid, almost everyone says rehabilitation is good for almost everything.

And I think after stroke and/ or certain orthopedic injuries/ surgeries there may even be some evidence for that to be true?

And apologies, rather off topic but something I'm dealing with ATM -- what if you have both, ME/CFS and an additional medical problem that actually needs some specific exercise to heal properly?

Or just you need to be able to use crutches but that's already too much so you're in constant PEM, develop a tennis elbow, you stumble and fall more often than before, etc. and you are faced with the possibility that you will not regain your prior function of your joint/leg, so losing mobility you could have regained if you were (better) able to use crutches and do the prescribed (specific) exercise.

I see it's not as existential a problem as needing to be fed.

Still I wonder how people with ME/CFS, especially those who are otherwise still fairly mobile, deal with such not so uncommon additional medical events like major bone/joint injury / surgery or even a stroke ,when some 'rehabilitation' / specific physical therapy usually is indicated ? Are there any records on this?

 

[Maat]

In Germany at least, I'm afraid, almost everyone says rehabilitation is good for almost everything.

And I think after stroke and/ or certain orthopedic injuries/ surgeries there may even be some evidence for that to be true?

And apologies, rather off topic but something I'm dealing with ATM -- what if you have both, ME/CFS and an additional medical problem that actually needs some specific exercise to heal properly?

Or just you need to be able to use crutches but that's already too much so you're in constant PEM, develop a tennis elbow, you stumble and fall more often than before, etc. and you are faced with the possibility that you will not regain your prior function of your joint/leg, so losing mobility you could have regained if you were (better) able to use crutches and do the prescribed (specific) exercise.

I see it's not as existential a problem as needing to be fed.

Still I wonder how people with ME/CFS, especially those who are otherwise still fairly mobile, deal with such not so uncommon additional medical events like major bone/joint injury / surgery or even a stroke ,when some 'rehabilitation' / specific physical therapy usually is indicated ? Are there any records on this?

This. It's akin to saying to a child who wants to pick up a spider, don't worry it won't hurt you. For the most part that's probably true. However, when you pick up a banana beware the Brazilian Wandering Spider. 9 of the World’s Deadliest Spiders | Britannica

Since we are supposed to be being dealt with in an MDT manner, that still seems to be the MDT set up when the first CFS/ME clinics were set up - OTs, physios and a clinical lead.

Any care plan for any chronic illness, should include input from other disciplines dealing with other co-morbidities. Isn't that the whole point of any care plan? One were the patient is not having to do the pointing out to differing disciplines involved in their 'holistic' care.

Everyone has become so used to the fact that patients with ME/CFS are solely handled in the NHS as a biopsychosocial, hysterical, hypochondriacs fooled by their own disordered belief, and that every single symptom is due to that, the interplay between ME/CFS and other discreet illnesses is ignored.

That's why as a severe, bordering on very severe, ME/CFS patient, when recently sent for an urgent referral on to the cancer care pathway, I decided in advance that I would refuse treatment if the results turned out to be positive for cancer.

The reason, is having nursed both my father and my husband through that to their deaths, I knew my body would never be able to cope with the constant travelling to treatment, the treatment itself, or the hospital environment. If I complained about fatigue where would I be referre?, Yup that's right, the Bath fatigue clinic now just across the way from the new Cancer Centre run by the same clinic lead as 'treated' me 12 years ago.

This is the Kafkaesque nightmare sitting underneath the BACME Agreed Care Plan.

To repeat the question, why would you need an 'Agreed' Care Plan - Answer in order to be treated with the input of liaison psychiatry 'grey' area techniques.

So the question evolves into asking, where these young women who are being detained by DOLS in hospital today, in 20 years time if they are faced with a cancer diagnosis and there has been no movement on the establishments idea of treatments that ME/CFS patients are currently subjected to, will a future decision to refuse any cancer treatment on those grounds force them into a position where they are sectioned?

The amount that the BPS model of this illness has removed autonomy over our own bodies and life choices cannot be underestimated.

Today saw the debate in Parliament of the petition set out on Esther Rantzen's call for a law on allowing assisted dying for those with less than 6 months left to live. For those who don't know, she has stage 4 lung cancer and wants to go to Dignitas. Over 200,000 signed the petition.

We live in a nation state which says that our long term chronic illness is not due to an ongoing disease process, it's our fears and beliefs which perpetuate a post illness deconditioned state, where rehab is the next progressive step to normal functioning.

 

[Jonathan Edwards]

And I think after stroke and/ or certain orthopedic injuries/ surgeries there may even be some evidence for that to be true?

Don't assume anything is based on reliable evidence. My time in rehabilitation was merciful brief but at the end, when my frustration was clear to my consultant seniors the deputy director gave me a chat and apologised for my having to plan and manage what was mostly 'drivel'.

We agreed that mobilising after orthopaedic surgery was necessary to stop adhesions from forming that might lead to permanent loss of range of movement. But that is about the one situation where it makes real sense and it is in response to something done to you by a surgeon.

Otherwise much of the care after orthopaedic surgery is advising people what movements not to overdo, to avoid dislocation of the prosthesis or falling over because proprioception needs retraining. I doubt that actual exercise, rather than just passively maintaining range is that important. It is just the physios' obsession. When I had a carpal tunnel decompression there were no exercises to do but the physio felt she had to do some therapy so subjected me to some ultrasound treatment 'to soften the scar'. It hurt so I stopped it after five seconds. I am quite sure there was no evidence it worked.

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.

The 'positive effect of exercise' that keeps people living longer probably has little or nothing to do with any rehabilitation. Rehabilitation is mostly about re-learning to cope with reduced function or optimising the exploitation of regaining function. I doubt that exercise is useful for lung disease or heart disease as a way of regaining function. Physios will believe that but they will believe anything that means they can do something to people.

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.

 

[Amw66]

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.

 

[Kitty]

We agreed that mobilising after orthopaedic surgery was necessary to stop adhesions from forming that might lead to permanent loss of range of movement. But that is about the one situation where it makes real sense and it is in response to something done to you by a surgeon.

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.