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

Dolphin

Senior Member
Messages
17,567
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?



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?

They use both. Also from Clark & White (2005):
The role of graded exercise therapy in CFS

The theoretical basis of therapeutic exercise for CFS is the premise that, irrespective of its causes, patients experience fatigue after minimal exertion; and it is their subsequent prolonged avoidance of physical activity and exercise, due to either fear or belief that it will exacerbate their condition, that eventually leads them to experience decreased physical fitness, muscular strength and endurance.

Ellen Goudsmit points out some times that GET is based on conditioning also. "Like trained pigeons" is a phrase I think she uses.
 

Esther12

Senior Member
Messages
13,774
I don't see any reason to believe that patients diagnosed with CFS have any more inherent need for activity management than any other group of people.

A lot of patients have been badly screwed over by unfounded claims about the role of deconditioning in their condition, the promotion of 'positive' cognitions about the role reversible psychosocial factors play in perpetuating their health problems, and dishonest claims about the efficacy of GET - all of this sort of thing can lead to patients having messed up views about exercise and how one should be engaging in it, but I don't think that this can validate the routine medicalisation of the behavioural choices of patients, particularly when many of the quacks responsible for these problems are still in place, still making false claims about the benefits of GET, using this to affect how funding decisions are made, to further their own careers, and so on.

Some patients may want to spend money on activity management. They could be given the resources to do so, but equivalent financial resources should also be provided to those patients who'd rather buy a trendy pair of jeans, or anything else - it seems that this is just as likely to be helpful for improving their health.

Also, look at these positives:

Positive experiences of rehabilitation therapies include supportive communication with a therapist, treatment which included routines and goals, and value attached to baselines and controlled pacing.

I'm not interested in fashion, but I'd much rather have a £500 pair of jeans than that.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
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'.

Hope this double quote works! I just had a light-bulb moment - it's not Pavlovian conditioning but operant conditioning, the difference being that in the former the unconditional stimulus is provided by someone/something else, and in the latter the unconditional stimulus is provided by the one experiencing the conditioned response. Apologies for the previous error - I studied this a long time ago and am a bit rusty (plus slight brain fog).
There is some info on operant conditioning here.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
Some patients may want to spend money on activity management. They could be given the resources to do so, but equivalent financial resources should also be provided to those patients who'd rather buy a trendy pair of jeans, or anything else - it seems that this is just as likely to be helpful for improving their health.

Considering the situation many of us have ended up in, the preferred use for money would probably be paying the rent or having the heating on...
 

Esther12

Senior Member
Messages
13,774
Considering the situation many of us have ended up in, the preferred use for money would probably be paying the rent or having the heating on...

Yeah - I've got to admit, my clothes are £1 charity shop jobbies rather than designer show-off clothes... but I can think of few things which I'd want to spend my money on less than activity management from the NHS.
 

Valentijn

Senior Member
Messages
15,786
Normally Prof. Pinching would have been on the course to provide the 'bio' aspect . . . .
According to Pinching's 2000 publication on the matter, he believed in limiting biological investigation, because it "can also be harmful and counterproductive to the managements of these patients, raising inappropriate concerns and causing them to seek abnormal test results to validate their illness." He was also a big fan of the boom-and-bust theory, that we're either being unrealistic and over-active or fearful and under-active, resulting in deconditioning and "excessive awareness of physiological changes."

He didn't think that orthostatic intolerance needs treatment, I guess because it's more beneficial to just be bedbound and housebound until we're forced to magically cure ourselves? Fortunately it seems that he believed we can helped to recover somehow: "Strategies should be geared towards long-term recovery and avoid short-term tactics that inhibit it, such as over or underactivity." Presumably we just need to accept that "The essence of treatment is activity management and graded rehabilitation."

He was way more moderate than the worst offenders, but seemed to suffer from the inexplicable belief that even if we have serious symptoms that need to be managed, CBT and GET are the One True Cure. Probably just another doctor who is not a scientist and is completely incapable of questioning any official guidelines, or papers published in reputable journals, no matter how much they conflict with the reality he's seen in his patients.

The MDs aren't on the team to provide biological investigation and assistance. They're there to create a facade of legitimacy, to diagnose, and to discourage further biological interventions.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
According to Pinching's 2000 publication on the matter, he believed in limiting biological investigation, because it "can also be harmful and counterproductive to the managements of these patients, raising inappropriate concerns and causing them to seek abnormal test results to validate their illness." He was also a big fan of the boom-and-bust theory, that we're either being unrealistic and over-active or fearful and under-active, resulting in deconditioning and "excessive awareness of physiological changes."

He didn't think that orthostatic intolerance needs treatment, I guess because it's more beneficial to just be bedbound and housebound until we're forced to magically cure ourselves? Fortunately it seems that he believed we can helped to recover somehow: "Strategies should be geared towards long-term recovery and avoid short-term tactics that inhibit it, such as over or underactivity." Presumably we just need to accept that "The essence of treatment is activity management and graded rehabilitation."

He was way more moderate than the worst offenders, but seemed to suffer from the inexplicable belief that even if we have serious symptoms that need to be managed, CBT and GET are the One True Cure. Probably just another doctor who is not a scientist and is completely incapable of questioning any official guidelines, or papers published in reputable journals, no matter how much they conflict with the reality he's seen in his patients.

The MDs aren't on the team to provide biological investigation and assistance. They're there to create a facade of legitimacy, to diagnose, and to discourage further biological interventions.

Actually, I've heard mixed reports about Pinching, and there's a gaping difference between what I've read online about him, and what I've heard from patients who actually saw him. Those I know who have actually met him say that he is a very decent and caring physician, and not at all like the cognitive-behavioural advocates. He wanted to carry out a further study with Immunovir, after some positive results with it, but couldn't get the funding for it. My understanding was that he was always under intense pressure from the cognitive-behavioural lobby, and resisted the pressure as much as possible, but it was like holding back a rising tide. Some of the negative stuff that I've read about him online doesn't match up with the first-hand reports that I've heard about him. I've only heard praise from those patients who were actually treated by him. So perhaps Pinching's work isn't fairly characterised by some of the stuff written about him online. And, as you know, I'm no defender of the psych-lobby.
 

Valentijn

Senior Member
Messages
15,786
So it seems that Pinching's work isn't fairly characterised by some of the stuff written about him online.
The above are direct quotes from a paper which he wrote and published. More are at http://forums.phoenixrising.me/index.php?threads/anthony-pinching-quotes.21878/

I get the same vibe that I get from Dr Alistair Miller : that they are both quite intelligent and believe that ME patients are suffering from severe symptoms which should be treated, and that they are very compassionate toward their patients. But they will also never question the recommendations made by the accepted authorities. And those recommendations are based on a psychosomatic theory, hence these doctors end up with what seems to be a hybrid biological/psychosomatic view of the disease.

Hence some symptoms may get treated, especially if the Authority encourages or at least doesn't recommend against that specific treatment, such as for sleep issues or pain. But other symptoms will be ignored as much as possible, especially ones which are heavily emphasized as being psychosomatic, such as MCS or various gut problems.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
The above are direct quotes from a paper which he wrote and published. More are at http://forums.phoenixrising.me/index.php?threads/anthony-pinching-quotes.21878/

I get the same vibe that I get from Dr Alistair Miller : that they are both quite intelligent and believe that ME patients are suffering from severe symptoms which should be treated, and that they are very compassionate toward their patients. But they will also never question the recommendations made by the accepted authorities. And those recommendations are based on a psychosomatic theory, hence these doctors end up with what seems to be a hybrid biological/psychosomatic view of the disease.

Hence some symptoms may get treated, especially if the Authority encourages or at least doesn't recommend against that specific treatment, such as for sleep issues or pain. But other symptoms will be ignored as much as possible, especially ones which are heavily emphasized as being psychosomatic, such as MCS or various gut problems.

I saw Prof Pinching after being ill for years, and did find him respectful, attentive and sympathetic. He didn't offer any treatment as he thought I was doing all the right things already and had 'remarkable insight into my illness' or words to that effect. The only hint of scepticism did indeed appear when I mentioned my extreme sensitivity to artificial perfumes, which he immediately appeared to ascribe to psychological factors, but was perhaps too tactful/diplomatic to state this outright. I sensed his scepticism and decided not to pursue the matter.
 

Dolphin

Senior Member
Messages
17,567
I don't see any reason to believe that patients diagnosed with CFS have any more inherent need for activity management than any other group of people.

A lot of patients have been badly screwed over by unfounded claims about the role of deconditioning in their condition, the promotion of 'positive' cognitions about the role reversible psychosocial factors play in perpetuating their health problems, and dishonest claims about the efficacy of GET - all of this sort of thing can lead to patients having messed up views about exercise and how one should be engaging in it, but I don't think that this can validate the routine medicalisation of the behavioural choices of patients, particularly when many of the quacks responsible for these problems are still in place, still making false claims about the benefits of GET, using this to affect how funding decisions are made, to further their own careers, and so on.

Some patients may want to spend money on activity management. They could be given the resources to do so, but equivalent financial resources should also be provided to those patients who'd rather buy a trendy pair of jeans, or anything else - it seems that this is just as likely to be helpful for improving their health.

Also, look at these positives:



I'm not interested in fashion, but I'd much rather have a £500 pair of jeans than that.

I recall talk a few years back that UK patients would be put in charge of their own health budgets, so they could decide what they spend money on. As I recall, they were talking about trialing this with a few specific conditions e.g. M.S.

It seems to me offering non-pharmacological management programmes and therapy can be an almost a bottomless pit in terms of the amount of money involved: patients can always have issues they'd like to talk through.
 

Dolphin

Senior Member
Messages
17,567
The above are direct quotes from a paper which he wrote and published. More are at http://forums.phoenixrising.me/index.php?threads/anthony-pinching-quotes.21878/

I get the same vibe that I get from Dr Alistair Miller : that they are both quite intelligent and believe that ME patients are suffering from severe symptoms which should be treated, and that they are very compassionate toward their patients. But they will also never question the recommendations made by the accepted authorities. And those recommendations are based on a psychosomatic theory, hence these doctors end up with what seems to be a hybrid biological/psychosomatic view of the disease.

Hence some symptoms may get treated, especially if the Authority encourages or at least doesn't recommend against that specific treatment, such as for sleep issues or pain. But other symptoms will be ignored as much as possible, especially ones which are heavily emphasized as being psychosomatic, such as MCS or various gut problems.

Action for ME picked Alastair Miller to replace Tony Pinching as their medical advisor. Both are immunologists. However, I see differences between them e.g. Alastair Miller has said explicit things in support of GET and CBT e.g. with regard to the PACE Trial. Tony Pinching was more into pacing.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
Action for ME picked Alastair Miller to replace Tony Pinching as their medical advisor. Both are immunologists. However, I see differences between them e.g. Alastair Miller has said explicit things in support of GET and CBT e.g. with regard to the PACE Trial. Tony Pinching was more into pacing.

Prof Pinching didn't try to push CBT or exercise at me when I saw him in 2008, IIRC. He did say that he thought that I was managing my condition very well and had 'remarkable insight' into my condition, or words to that effect. I had given him a detailed summary of my history, experience with medications and supplements, and management strategies, which were of course based on pacing and did not involve any deliberate exercise, and he had read it thoroughly. I liked him.

He does seem to have given some support to CBT/GET in the past, but I wonder whether this was due to external pressure and he felt unable to 'rock the boat'.
 
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Messages
1,446
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Bob wrote: "Actually, I've heard mixed reports about Pinching, and there's a gaping difference between what I've read online about him, and what I've heard from patients who actually saw him."
.
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You make it sound as though criticism of Pinching is just heresay. Not so.
.

What you read about Professor Pinching online is also from patients who actually saw Pinching, or were 'treated'/neglected by his clinic at Barts. Sweet talk and nice words from Pinching do not compensate for the appalling situation at Barts whilst he was there, or the failure of the consultants there to recognise or work with actual ME as opposed to chronic fatigue or depression, leaving very sick ME patients abandoned. Pinching has turned his back on some very seriously sick and mistreated patients. His surface charm is misleading, he switches it on and off.
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Messages
32
There were three letters published in response to the paper in the opening post, and now the lead author has replied to the letters... Not all of the letters are open access but the author's response is currently open access...


Harms and benefits associated with exercise therapy for CFS/ME.
Courtney R.
Disabil Rehabil. 2015; 37:465.
http://informahealthcare.com/doi/full/10.3109/09638288.2014.952453

Elements of rehabilitative strategies associated with negative outcomes in CFS/ME: the need for further investigations.
Kindlon T.
Disabil Rehabil. 2015; 37:466-7
http://informahealthcare.com/doi/abs/10.3109/09638288.2014.952456

Response to Gladwell et al.: concerns about safety for GET.
Sheridan A.
Disabil Rehabil. 2015; 37:464
http://informahealthcare.com/doi/abs/10.3109/09638288.2014.952455


Response from Peter Gladwell...

Author's comments in response to letters by Tom Kindlon, Anna Sheridan and Robert Courtney.
Gladwell PW
Disabil Rehabil. 2015; 37:468-9.
http://informahealthcare.com/doi/full/10.3109/09638288.2014.1002581
 

worldbackwards

Senior Member
Messages
2,051
It seems to me that GET is being developed to be more and more like pacing, where there is a sensitive focus on the patient's safe limits and ability, and to set adaptive goals according to safe limits. So the term 'GET' is becoming more and more misleading, as GET is quietly transformed into pacing.
Increasingly, the only difference is that, if patients can't move forward, they get the blame rather than the therapists. This appears to be nothing more than an attempt to retain power after their ideology has completely collapsed.

Is it not interesting that we (the patients, the "militant groups obstructing science", etc) have never moved an inch in what we believe to be true, and the psychiatrists have moved further and further towards our position, haranguing us all the way for impeding progress?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
As you would tend to do if the treatment you were delivering didn't work.

Maybe that is a clue as to why the instigators of the 'therapy' don't show such a logical lack of confidence. They are not at the 'coal face' delivering the 'therapy' and seeing the harm first-hand? They can always blame the nurses as well as the patients - they are clearly just not doing it right. :rolleyes::bang-head: