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Positive vs negative outcomes of Exercise rehab in ME/CFS probed via online survey (Pheby 2013)

Esther12

Senior Member
Messages
13,774
Overall, 56% of this group reported a worsening of symptoms with GET (28% reported betterment to some degree).

Sonya Chowdhury, CEO, Action for M.E., says, “It’s clear from the analysis of our GET survey results that good outcomes may be achieved when patients and therapists work collaboratively, and when therapists understand the limitations imposed by the condition.

“However, although we know that GET may work some people with M.E., we also hear from those who do not find it helpful. That’s why it’s essential that we continue to drive research into more effective treatments and therapies.”

Could it have been?:

Sonya Chowdhury, CEO, Action for M.E., says, “It’s clear from the analysis of our GET survey results that bad outcomes may be achieved when patients receive GET.

“However, although we know that GET may harm some people with M.E., we also hear from those who do not find it harmful. That’s why it’s essential that we continue to drive research into more effective treatments and therapies.”

We'd be so much better off if Action for ME shut down.
 

biophile

Places I'd rather be.
Messages
8,977
Pheby et al said:
Positive themes included supportive communication, the benefits of a routine linked with baseline setting and pacing, the value of goal setting, and increasing confidence associated with exercise.

Pheby et al said:
This report analyses the qualitative data submitted as ‘‘free text’’ in the responses to the 2010 survey of rehabilitation therapies carried out by Action for ME. These sections encouraged the respondents to write about their experiences of the rehabilitation therapies, to build a picture of what was helpful and unhelpful about the therapies. While the principal focus of our enquiry was GET, the opportunity was also taken to review the outcomes of GAT and EoP, since the Action for ME survey had also enquired about these therapeutic approaches.

The positive experiences in the full text are themed around everything except increases in total activity levels. So there is something about GET, except the graded increases in exercise, which helps a small proportion of broadly-defined CFS.

The negative experiences sound like a natural consequence of taking GET too literally or at face value. Obviously "insensitive delivery of rehabilitation" is undesirable even for GET proponents, but after therapists read through the claims and GET rationale they may aggressively wonder why the patients can't do more or aren't improving as expected.

Again, the available evidence suggests that GET does not increase total activity levels or employment etc, despite decades of promoting these therapies as reducing disability. Ironically it would seem that the key to successful GET is not making patients increase their total activity levels as the GET rationale expects. Some of the proponents must have realized this at some point, and are now saying that self-reported improvements in CBT/GET are associated with (supposed) changes to perceptions about illness/symptoms/abilities, rather than actual changes in activity levels or fitness levels. However, if these cognitions have changed, why aren't patients doing more? Cue the spin.
 

biophile

Places I'd rather be.
Messages
8,977
I think some people who have a strong compulsion to respect authority run into some major brain malfunctions at times. Instead of accepting that an authority might be wrong, they'll do logical backflips to try to find a way to get reality and the statements by an authority to mesh.

Appeals to authority are part of the confidence trick being played out. We are shamed into accepting the evidence-base of CBT/GET lest we be accused of being unscientific extremists who rather patients remain unwell, something which no one wants to be branded when it comes to debating the science of medical issues. Fortunately, not everyone has bought it.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
The history of ME is in part a history of patients being right, and doctors wrong. Doctors jumped to conclusions. Of course we are not always right, neither as individuals or a group, but:

We complained we got worse after activity. Doctors who favoured CFS said fatigue (though ME docs were not fooled). Now we know post exercise cytokine studies and repeat VO2max testing we were right all along.

We have said pacing is better than GET. Are they conceding we were right all along?

We have said we felt like we had a viral infection. That was dismissed as crazy talk. Yet with modern understanding of both herpes family and enteroviral family viruses, we now know we were right all along.

Who is delusional? Us or doctors who don't listen to their patients?

If its not us who have the false illness beliefs, then who should be in therapy? ;)

Psychologists, heal thyselves...:snigger:
 

Esther12

Senior Member
Messages
13,774
I think that their conclusion should be: the positives of NHS 'rehabilitation' are so minor, and the negatives such a predictable and common occurrence, that any spending in this area should be provided directly to patients, who can then decide for themselves how to make their lives better.

Instead we get more of Action for ME's excuses, and pleas to go on giving more money to those who have been responsible for patients being mistreated. How 'positive' and 'constructive' they are, and unlike those militant organisations who want to bring about real change.
 

Dolphin

Senior Member
Messages
17,567
Ignoring the word 'exercise' for a moment and all that that might imply; 'grading' your activity means basing the activity and the frequency of it on your ability at any particular moment. It isn't about forcing yourself to 'do more' and more and more in the expectation that within X amount of time you will be back to work with the illness behind you.
Graded Exercise or Graded Activity means one should either do the same amount, or increase. If one can do less than previously, the same as previously or more than previously based on how you are, that's much more like pacing.
 

Dolphin

Senior Member
Messages
17,567
From the paper:
The reported negative experiences of rehabilitation clearly contradict all of these aspects of the NICE description. The survey data indicate two categories of rehabilitation treatment available to respondents: a higher quality, flexible and supportive approach and a lower quality, prescriptive approach.
GET isn't supposed to be flexible. It's about breaking the association of activity with symptoms.

Some quotes from Clark & White (2005)

The primary aim of therapeutic exercise in patients with CFS and other fatiguing illnesses is therefore to gradually increase first the duration and then the intensity of physical exercise in a way that is less contingent on symptoms determining activity, so that physiological functioning, muscular strength, endurance, and interoception can be directly improved (Hall, 1998).

And
If a patient develops symptoms as a response to increased activity, they should keep exercising at that level, rather than either stop or increase the intensity/duration. As the body adapts and symptoms subside, they should then be encouraged to increase by an incremental point again, mutually agreed between therapist and patient.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Graded Exercise or Graded Activity means one should either do the same amount, or increase. If one can do less than previously, the same as previously or more than previously based on how you are, that's much more like pacing.

Actually, 'grading' means measuring. Taking a look at what you need to do and then considering how best to achieve it and/or if those goals are really necessary. Thinking about the efforts will be involved etc. Not automatically discounting them and saying 'nope' but trying to find a way of doing them that is least likely to cause any increase in symptoms above and beyond what is bearable/manageable.

There are various prescriptions for a programme of GET. And one is to try and increase the activity over a period - as a goal. And yeah, some of the practitioners out there are reminiscent of schoolmasters with canes to hand: they have little if any flexibility of appreciation of the patient or of the condition and are remorseless in their dogged pursuit of unrealistic timeframes and like nothing better than to blame the patient: or so we hear.

However, for others, GET is more akin to activity management - and the 'exercise' is part of that e.g. trying to include a walk that is reasonable, but as part of a routine or with routine as a goal; while retaining flexibility to account for fluctuations in the condition. Clinical practice can be different to PACE Trial manual. There are clinics who 'nod' towards PACE and GET as per the manual - and then try and provide a personalised service - as per NICE - and with the individual at it's heart.

That said, I have never been lectured on adopting GET per se - our NHS Service adopts what I/they would term Graded Activity Management which is in itself personalised and adaptable to the degree to which the patient is affected by the condition. It is very much a common-sense approach (but then I have been around a while as you know), however, that takes away nothing from it's inherent need to be taught - if only as a means of confirmation and reinforcement that the patient is going about their illness management in the best way possible. Of course we have no 'evidence' that such an approach has any merit - shame really...
 

Dolphin

Senior Member
Messages
17,567
Actually, 'grading' means measuring. Taking a look at what you need to do and then considering how best to achieve it and/or if those goals are really necessary.
I don't recall "graded"/"grading" being used in this way in manuals for get or CBT that involves the scheduling of increased activity.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I don't recall "graded"/"grading" being used in this way in manuals for get or CBT that involves the scheduling of increased activity.

That's the definition of grading/graded as is taught within the CFS/ME Service here in Cornwall, my friend, and not out of any manual that I am aware. Imagine my relief - when I went 'undercover' - one hears such stories and I had misgivings of my own: hence the 'undercover' need. Not that I was really in disguise of course. I just wanted to find out for myself what was what and so undertook a 3 hour a week, across 7 weeks, ME Management Programme in group, run by the Service. Normally Prof. Pinching would have been on the course to provide the 'bio' aspect, but they managed well without him to the extent that they could, and our new neurologist is - I heard yesterday - very very good. We had the ME Association Team down to Liskeard for Question Time and I got to meet several fellow patients. I was desperate to know how she was settling in and what her knowledge and abilities were: and all good from those to whom I spoke - she's even prescribing (or recommending to GPs) medications. It ain't perfik down here: but they do a good job with what they have and what they can offer.
 

Dolphin

Senior Member
Messages
17,567
That's the definition of grading/graded as is taught within the CFS/ME Service here in Cornwall, my friend, and not out of any manual that I am aware. Imagine my relief - when I went 'undercover' - one hears such stories and I had misgivings of my own: hence the 'undercover' need. Not that I was really in disguise of course. I just wanted to find out for myself what was what and so undertook a 3 hour a week, across 7 weeks, ME Management Programme in group, run by the Service. Normally Prof. Pinching would have been on the course to provide the 'bio' aspect, but they managed well without him to the extent that they could, and our new neurologist is - I heard yesterday - very very good. We had the ME Association Team down to Liskeard for Question Time and I got to meet several fellow patients. I was desperate to know how she was settling in and what her knowledge and abilities were: and all good from those to whom I spoke - she's even prescribing (or recommending to GPs) medications. It ain't perfik down here: but they do a good job with what they have and what they can offer.

Thanks.
However, the question is what should or should not be a graded activitiy or graded exercise programme. If one just measures out activity or exercise, that could describe almost any management system.

Here's what Clark & White (2005) say:
From the Introduction:

Therapeutic exercise programmes were first designed for patients with CFS on the basis of reversing physical deconditioning. However, they are also a behavioural graded exposure treatment thought to work by habituating the patient to the stimulus of exercise which has caused the conditioned response of fatigue and malaise.​
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
From the paper:

GET isn't supposed to be flexible. It's about breaking the association of activity with symptoms.

The UK approach is quite different to overseas approaches, for example:

http://www.ncbi.nlm.nih.gov/pubmed/15115421
Wallman 2004

Graded exercise consisted of an aerobic activity that used the major large muscles of the body. Subjects could choose walking, cycling or swimming. Subjects were instructed to exercise every second day, unless they had a relapse. If this occurred, or if symptoms became worse, the next exercise session was shortened or cancelled. Subsequent exercise sessions were reduced to a length that the subject felt was manageable. This form of exercise, which allows for flexibility in exercise routines, is known as pacing.

We should not pretend that the GET model pushed by certain UK psychiatrists is the only tested way. Whenever GET with an emphasis on ignoring symptoms is pushed, we need to point out that a pacing based model has been proven to be just as 'effective'.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
It is not my - albeit limited - personal experience that there is a 'UK approach'. I think we (I) need to differentiate between what is prescribed in specific Trials and manuals, and what is (or can be) delivered in clinic and on a personalised basis.

When it comes to clinical delivery, most recently, we were very much encouraged to 'take from it what we felt most useful to us'. That seems to be to be what I might describe (from my more recent University experience), as a 'modular' approach. It seems eminently sensible to me.

I go back to what I said pre-PACE when it was announced they were embarking on the Trial, and that was that is was enormously ambitious and almost impossible to achieve. You need in a Trial a fixed delivery - such a in a drug Trial where you can measure the drug and the dosage etc. - but with what I would term a therapy approach to illness management: this is inherently difficult especially in regards to measuring outcomes and drawing generalising conclusions.

We are all different. NICE prescribes personalisation. The 3 standard recommended therapies are known collectively as 'management strategies' and 'management' does not a cure imply. On the other hand - and to get back to Dolphin's question: I think as a patient I will naturally want to do more and I will - as I have in the past consistently - boom and bust. If I can achieve more - with goals or progress or activities that are relevant to me and my own circumstances - on a gradual basis and sustain that for longer: then it seems worth a shot.

But forcing someone to repeatedly strive for more doing the same exercise - for an illness that is both not understood and fluctuating in nature - is not only perverse but daft. There is encouragement and then there is sense: and in Snowleopord's example above - there is some sense. Though a specific exercise is not the only thing a person does in their day's activities and that needs to be taken into account.

A Trial might consider itself in isolation - out of necessity: but a patient is an individual. I was saying of the 2-day exercise tests: what consideration is given to the recording of incoming and outcome data to a patients e.g. journey or activity pre-and-post testing? We are not static instruments and neither is our health.

Sorry. Bit garbled I dare say but I hope you got the gist :)
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
It is very much a common-sense approach (but then I have been around a while as you know), however, that takes away nothing from it's inherent need to be taught - if only as a means of confirmation and reinforcement that the patient is going about their illness management in the best way possible. Of course we have no 'evidence' that such an approach has any merit - shame really...

Need to be taught? The only useful 'teaching' I have had is from reading about other sufferers' experiences and learning from my own experience.

If something 'needs to be taught', who learned it in the first place, and how? Or did they just make it up, using guesswork?

Here's what Clark & White (2005) say:
From the Introduction:

Therapeutic exercise programmes were first designed for patients with CFS on the basis of reversing physical deconditioning. However, they are also a behavioural graded exposure treatment thought to work by habituating the patient to the stimulus of exercise which has caused the conditioned response of fatigue and malaise.​

Thank you for posting this quote. It provides a clear illustration of the fundamental error on which CBT/GET is based, and the rationale for the theory.

That is Pavlovian conditioning. It assumes that there is no real direct causal link between the stimulus/trigger and the consequences, or 'conditioned response'.

You can read about it here:

It does not apply to the adverse effects of exertion on ME sufferers, which is a genuine, biological effect.

Just to confuse matters, the proponents of CBT/GET also claim that we are 'deconditioned', in this case meaning physical deconditioning. Or are they really such rubbish psychs that they get the terms confused themselves? Or really clever psychs trying to distract people from the fact that their theory is based on Pavlovian conditioning by adding a reference to physical deconditioning?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
When it comes to clinical delivery, most recently, we were very much encouraged to 'take from it what we felt most useful to us'.

Considering that the treatment is based on incorrect theory, I would favour taking 0% of it. That is what is supposed to happen in science. Evidence disproves the theory, so you dump it and try a different tack.

I go back to what I said pre-PACE when it was announced they were embarking on the Trial, and that was that is was enormously ambitious and almost impossible to achieve. You need in a Trial a fixed delivery - such a in a drug Trial where you can measure the drug and the dosage etc. - but with what I would term a therapy approach to illness management: this is inherently difficult especially in regards to measuring outcomes and drawing generalising conclusions.

Therapy as defined by Cambridge dictionaries:

Management is about avoiding getting worse, and staying stable. It's not per se a method for making someone get or feel better.
 

Dolphin

Senior Member
Messages
17,567
We should not pretend that the GET model pushed by certain UK psychiatrists is the only tested way.

http://www.ncbi.nlm.nih.gov/pubmed/15115421
Wallman 2004

Graded exercise consisted of an aerobic activity that used the major large muscles of the body. Subjects could choose walking, cycling or swimming. Subjects were instructed to exercise every second day, unless they had a relapse. If this occurred, or if symptoms became worse, the next exercise session was shortened or cancelled. Subsequent exercise sessions were reduced to a length that the subject felt was manageable. This form of exercise, which allows for flexibility in exercise routines, is known as pacing.
If GET can mean any exercise programme, it becomes meaningless as a specific term I think. Any exercise programme should have measurements in some way so what exercise programme won't be called a GET programme then?

Similarly people always want to do more eventually, so what wouldn't be called a graded activity programme?

Peter White would say the Wallman model isn't GET which is about breaking the link between symptoms and activity. Similarly the diagram in the PACE Trial comparing GET vs Pacing.

In the paper for this thread, it basically says if people simply followed the NICE guidelines and the PACE Trial guidelines for GET, there'd be no problems. If graded exercise can mean anything, it's hard to argue with it. I agree that highlighting the exercise trial you mention is useful (I've highlighted the contrasting approach myself before). By saying it's also GET, it gets confusing I think except to say it was called a GET programme.