Acceptance and Commitment Therapy for ME/CFS - Discussion thread

[ola_cohn]

I did some ACT the second year I was sick and found it incredibly helpful.

It was the book The Happiness Trap which is written so that you can do a short chapter each day, with explanations and exercises. I did it on my own with no therapist guiding me except the book.

The thing I found so helpful was the idea that it's okay that things aren't okay. Sometimes things are just awful. That's life. It happens. Sometimes they don't get better. Life goes on and even if things are awful there are some choices you can make for yourself in that framework of awfulness. After a year of desperately searching for medical treatment and slowly realizing the floor had dropped from under me and there was no one coming to the rescue, this was an important lesson for me to understand. The book also gave me tools to deal with the recurring unpleasant thoughts (I'm never going to get better) not by changing them but by accepting them and giving them less air time. As in, I know I'm probably not going to get better, but nothing will be improved if this is the main thought going through my head all day ever day. This helped a lot. Really, the book was very useful for someone new to a chronic illness and I've recommended it widely to friends and family. I feel like the tools in it have helped me cope better with a fairly untenable existence.

So reading these trial studies and papers talking about using those same tools to try to convince patients that it's all in their head and they just need to push through and pretend they're living a normal life or else they're being "avoidant" oh it just makes me feel physically unwell.

They are so abusive. I wonder if they realize how abusive they are.

Plus they're taking a genuinely useful tool and perverting it and tainting it which will (rightly) make people wary of it.

I agree with what a number of you have said about good/bad therapies vs therapists. This seems like a clear case of uninformed and abusive therapists adopting whatever tools they can find.

 

[Sean]

I don't really buy that they don't get it. Much more inclined to the view that it is just an act, that they know they cannot meet the minimum standards the rest of medical science has to, and cannot admit to what they have done and take the consequences.

They don't get the ignorant or stupid excuse from me. Especially the senior people in the game.

 

[ola_cohn]

The way they muddy the waters is really insidious. How is a non expert patient meant to understand the difference between supportive and coercive therapy? Even an informed patient would often not be able to identify which was being offered until halfway through.

How is someone with a chronic illness meant to get mental health support without gaslighting?

I'm surprised there aren't more psychologists/therapists up in arms about the way these people are misusing therapy.

 

[chrisb]

Much more inclined to the view that it is just an act,

Well, they have certainly accepted it, and are committed to it.

 

[Tara Green]

I did some ACT the second year I was sick and found it incredibly helpful.

It was the book The Happiness Trap which is written so that you can do a short chapter each day, with explanations and exercises. I did it on my own with no therapist guiding me except the book.

The thing I found so helpful was the idea that it's okay that things aren't okay. Sometimes things are just awful. That's life. It happens. Sometimes they don't get better. Life goes on and even if things are awful there are some choices you can make for yourself in that framework of awfulness. After a year of desperately searching for medical treatment and slowly realizing the floor had dropped from under me and there was no one coming to the rescue, this was an important lesson for me to understand. The book also gave me tools to deal with the recurring unpleasant thoughts (I'm never going to get better) not by changing them but by accepting them and giving them less air time. As in, I know I'm probably not going to get better, but nothing will be improved if this is the main thought going through my head all day ever day. This helped a lot. Really, the book was very useful for someone new to a chronic illness and I've recommended it widely to friends and family. I feel like the tools in it have helped me cope better with a fairly untenable existence.

So reading these trial studies and papers talking about using those same tools to try to convince patients that it's all in their head and they just need to push through and pretend they're living a normal life or else they're being "avoidant" oh it just makes me feel physically unwell.

They are so abusive. I wonder if they realize how abusive they are.

Plus they're taking a genuinely useful tool and perverting it and tainting it which will (rightly) make people wary of it.

I agree with what a number of you have said about good/bad therapies vs therapists. This seems like a clear case of uninformed and abusive therapists adopting whatever tools they can find.

I have just bought this on kindle and am reading it now. Thanks for the recommendation.

 

[Lilas]

In short, ACT for ME is supposedly helping the person to accept what they are feeling but deny PEM. How twisted and shows a lack of knowledge of ME! Dangerous, dangerous again.

I'm surprised there aren't more psychologists/therapists up in arms about the way these people are misusing therapy.

Exactly. Psychotherapy carries a clear risk of harm to the person, and unfortunately in the UK you know that all too well. A psychologist works with person in a state of vulnerability and the risk of manipulation, abuse can arise when he no longer listens to his patient's voice, projects his own beliefs onto him or exceeds his area of competence by claiming to be able to 'treat' a physical illness or reduce its symptoms, for example. This is why the practice must be framed by an adequate code of ethics. In my Province (CA), it is a professional Order which has the duty to ensure the training of psychologists and to protect the public against the misdeeds of its members (receive and manage complaints from the public). This professional Order does not defend its members, it is there to defend the public. Obviously, those kinds of safeguards have not worked for you in the UK.

 

[Snowdrop]

@Lilas post got me wondering.

So I had a look. And I found this:

https://www.bacp.co.uk/news/news-fr...gulation-of-counsellors-and-psychotherapists/

So apparently there needs to be some lobbying for better accountability here. It can be argued that if there is going to be so much reliance on counsellors / psychotherapists for not just mental health but other health conditions than it would be negligent to not have some embedded protections for clients.

Possibly a simple tweet with the link and saying this is inadequate would just get some people thinking. With perhaps a tag to mental health advocates.

 

[shak8]

ACT seems weird to me. I don't get why the average person with FM or ME/CFS of a few years standing would want someone who doesn't have pain or ME, 'assisting' them, telling them how to manage better, and 'act' for one's values, when frankly one has to learn to leave a lot of valued stuff behind, and be allowed to grieve it from time to time. And realistically deal with moment to moment pain and occasional glimpses of pleasure.

Who can really help you through this but a fellow sufferer?

If CBT were so damned effective for depression, then why were DBT, and ACT and other acrimonious acronyms developed? For money or because of someone's mental illness that they overcame (in the case of Russ Harris) and therefore knew how to save the world and make money. But I digress:

Below are revealing explanations for therapists by Russ Harris, ACT author of The Happiness Trap:

https://www.psychotherapy.net/article/Acceptance-and-Commitment-Therapy-ACT#section-the-goal-of-act

 

[ola_cohn]

Who can really help you through this but a fellow sufferer?

I think this is a great point, and I wish there were more therapists with chronic illness. The one time a doctor forced me to go to a psychologist (Australia is still quite barbaric and fully onboard the bps train) I was able to find one who had experienced chronic pain and, even though it's a different condition to mine, it was so valuable to have a therapist who understood how badly bodies can break sometimes.

As an aside, funnily enough the referring Dr was furious to see her report that my mental health was excellent and in her opinion my illness had a physical/physiological basis. Luckily I don't have to see him anymore.

Below are revealing explanations for therapists by Russ Harris, ACT author of The Happiness Trap:

https://www.psychotherapy.net/article/Acceptance-and-Commitment-Therapy-ACT#section-the-goal-of-act

Thank you for sharing that page. I think I must be reading it differently to you because it seems straightforward to me and similar to what he tells patients.

One thing that I would change if I could is to use a different or clearer word for where he says "symptoms". I believe based on the context in the piece around that word that he means it for psychological symptoms such as anxiety.

Here's a particularly problematic passage:

In stark contrast to most Western psychotherapy, ACT does not have symptom reduction as a goal. This is based on the view that the ongoing attempt to get rid of “symptoms” actually creates a clinical disorder in the first place. As soon as a private experience is labeled a “symptom,” a struggle with the “symptom” is created. A “symptom” is by definition something “pathological” and something we should try to get rid of. In ACT, the aim is to transform our relationship with our difficult thoughts and feelings, so that we no longer perceive them as “symptoms.” Instead, we learn to perceive them as harmless, even if uncomfortable, transient psychological events.
​

At the beginning the hair on the back of my neck stands up - what does he mean "symptom reduction as a goal"?! Also, of course my symptoms are pathological, there's something pathologically wrong with my body!

But then by the end it seems clear that he is using the word symptom to describe "difficult thoughts and feelings". Which is a bit of an odd definition to me, and I think he should have defined the term earlier if he's going to use it in a way that's different to the common English language definition. But accepting difficult thoughts and feelings doesn't seem like a bad thing at all to me, in fact it seems quite useful, especially for those of us in terrible situations.

But the use of that single unmodified word leaves open the door for unscrupulous (or possibly thoughtless) practitioners to reinterpret it as "physical symptoms from an organic illness". Which as we all know is dangerous and leads to psychological abuse.

 

[shak8]

I think this is a great point, and I wish there were more therapists with chronic illness. The one time a doctor forced me to go to a psychologist (Australia is still quite barbaric and fully onboard the bps train) I was able to find one who had experienced chronic pain and, even though it's a different condition to mine, it was so valuable to have a therapist who understood how badly bodies can break sometimes.

As an aside, funnily enough the referring Dr was furious to see her report that my mental health was excellent and in her opinion my illness had a physical/physiological basis. Luckily I don't have to see him anymore.



Thank you for sharing that page. I think I must be reading it differently to you because it seems straightforward to me and similar to what he tells patients.

One thing that I would change if I could is to use a different or clearer word for where he says "symptoms". I believe based on the context in the piece around that word that he means it for psychological symptoms such as anxiety.

Here's a particularly problematic passage:

In stark contrast to most Western psychotherapy, ACT does not have symptom reduction as a goal. This is based on the view that the ongoing attempt to get rid of “symptoms” actually creates a clinical disorder in the first place. As soon as a private experience is labeled a “symptom,” a struggle with the “symptom” is created. A “symptom” is by definition something “pathological” and something we should try to get rid of. In ACT, the aim is to transform our relationship with our difficult thoughts and feelings, so that we no longer perceive them as “symptoms.” Instead, we learn to perceive them as harmless, even if uncomfortable, transient psychological events.
​

At the beginning the hair on the back of my neck stands up - what does he mean "symptom reduction as a goal"?! Also, of course my symptoms are pathological, there's something pathologically wrong with my body!

But then by the end it seems clear that he is using the word symptom to describe "difficult thoughts and feelings". Which is a bit of an odd definition to me, and I think he should have defined the term earlier if he's going to use it in a way that's different to the common English language definition. But accepting difficult thoughts and feelings doesn't seem like a bad thing at all to me, in fact it seems quite useful, especially for those of us in terrible situations.

But the use of that single unmodified word leaves open the door for unscrupulous (or possibly thoughtless) practitioners to reinterpret it as "physical symptoms from an organic illness". Which as we all know is dangerous and leads to psychological abuse.

Here is what I found odd, blithely equating language itself with the mind. It's some sort of philosophical thing (I am quite ignorant of) but it seems a conflation or a distortion and makes me not trust the guy's intellect much.

Under the heading "Destructive Normality" he writes, "Furthermore, ACT postulates that the root of this suffering is human language itself. Human language is a highly complex system of symbols, which includes words, images, sounds, facial expressions and physical gestures. We use this language in two domains: public and private. The public use of language includes speaking, talking, miming, gesturing, writing, painting, singing, dancing and so on. The private use of language includes thinking, imagining, daydreaming, planning, visualizing and so on. A more technical term for the private use of language is “cognition."

Bolding is mine (shak8).

 

[Forbin]

Somehow, I don't get a warm, fuzzy feeling when psychologists and psychiatrists use the term "commitment therapy."

In my dictionary, the definition of "commitment" as "confinement to a mental institution or hospital," comes several definitions before "a pledge or promise; obligation," and "engagement; involvement" comes after that.

 

[shak8]

I think this is a great point, and I wish there were more therapists with chronic illness. The one time a doctor forced me to go to a psychologist (Australia is still quite barbaric and fully onboard the bps train) I was able to find one who had experienced chronic pain and, even though it's a different condition to mine, it was so valuable to have a therapist who understood how badly bodies can break sometimes.

As an aside, funnily enough the referring Dr was furious to see her report that my mental health was excellent and in her opinion my illness had a physical/physiological basis. Luckily I don't have to see him anymore.



Thank you for sharing that page. I think I must be reading it differently to you because it seems straightforward to me and similar to what he tells patients.

One thing that I would change if I could is to use a different or clearer word for where he says "symptoms". I believe based on the context in the piece around that word that he means it for psychological symptoms such as anxiety.

Here's a particularly problematic passage:

In stark contrast to most Western psychotherapy, ACT does not have symptom reduction as a goal. This is based on the view that the ongoing attempt to get rid of “symptoms” actually creates a clinical disorder in the first place. As soon as a private experience is labeled a “symptom,” a struggle with the “symptom” is created. A “symptom” is by definition something “pathological” and something we should try to get rid of. In ACT, the aim is to transform our relationship with our difficult thoughts and feelings, so that we no longer perceive them as “symptoms.” Instead, we learn to perceive them as harmless, even if uncomfortable, transient psychological events.
​

At the beginning the hair on the back of my neck stands up - what does he mean "symptom reduction as a goal"?! Also, of course my symptoms are pathological, there's something pathologically wrong with my body!

But then by the end it seems clear that he is using the word symptom to describe "difficult thoughts and feelings". Which is a bit of an odd definition to me, and I think he should have defined the term earlier if he's going to use it in a way that's different to the common English language definition. But accepting difficult thoughts and feelings doesn't seem like a bad thing at all to me, in fact it seems quite useful, especially for those of us in terrible situations.

But the use of that single unmodified word leaves open the door for unscrupulous (or possibly thoughtless) practitioners to reinterpret it as "physical symptoms from an organic illness". Which as we all know is dangerous and leads to psychological abuse.

I think this is a great point, and I wish there were more therapists with chronic illness. The one time a doctor forced me to go to a psychologist (Australia is still quite barbaric and fully onboard the bps train) I was able to find one who had experienced chronic pain and, even though it's a different condition to mine, it was so valuable to have a therapist who understood how badly bodies can break sometimes.

As an aside, funnily enough the referring Dr was furious to see her report that my mental health was excellent and in her opinion my illness had a physical/physiological basis. Luckily I don't have to see him anymore.



Thank you for sharing that page. I think I must be reading it differently to you because it seems straightforward to me and similar to what he tells patients.

One thing that I would change if I could is to use a different or clearer word for where he says "symptoms". I believe based on the context in the piece around that word that he means it for psychological symptoms such as anxiety.

Here's a particularly problematic passage:

In stark contrast to most Western psychotherapy, ACT does not have symptom reduction as a goal. This is based on the view that the ongoing attempt to get rid of “symptoms” actually creates a clinical disorder in the first place. As soon as a private experience is labeled a “symptom,” a struggle with the “symptom” is created. A “symptom” is by definition something “pathological” and something we should try to get rid of. In ACT, the aim is to transform our relationship with our difficult thoughts and feelings, so that we no longer perceive them as “symptoms.” Instead, we learn to perceive them as harmless, even if uncomfortable, transient psychological events.
​

At the beginning the hair on the back of my neck stands up - what does he mean "symptom reduction as a goal"?! Also, of course my symptoms are pathological, there's something pathologically wrong with my body!

But then by the end it seems clear that he is using the word symptom to describe "difficult thoughts and feelings". Which is a bit of an odd definition to me, and I think he should have defined the term earlier if he's going to use it in a way that's different to the common English language definition. But accepting difficult thoughts and feelings doesn't seem like a bad thing at all to me, in fact it seems quite useful, especially for those of us in terrible situations.

But the use of that single unmodified word leaves open the door for unscrupulous (or possibly thoughtless) practitioners to reinterpret it as "physical symptoms from an organic illness". Which as we all know is dangerous and leads to psychological abuse.

I think that's the whole point. That "symptoms" here, originally in ACT, were symptoms of anxiety/depression. The fear is that the Crawley crowd can't let go and will try to enact ACT as a work-around (with their spurious clinical trials) to try to convince people once again that ME/CFS is highly psychogenic and not a biologic-based illness.

 

[Milo]

The problem with ACT is that it is offered instead of biomedical care; chronic care means no acute care, little to no investigations to ensure you have the right diagnosis and to look for co-morbidities.

ACT is usually offered in conjunction with all the favourite self-management stuff such as meditation,relaxation, posture, a little bit of physiotherapy, and other CBT and psychology. And in some way ACT acts as a way to make patients ‘obedient’ into following the program.

It makes the doctors almost irrelevant because they are not typically part of the chronic care program, assume that the patient is getting all that they need there. It makes the funders of such program (governments) happy because they are getting away from injecting money for biomedical health care. Essentially the more space you give to the psychology professionals, the cheaper it is for them.

i struggle with the ‘what is clinical care’ part of being a ME expert, and what can medicine can offer.

 

[mango]

In short, ACT for ME is supposedly helping the person to accept what they are feeling but deny PEM. How twisted and shows a lack of knowledge of ME! Dangerous, dangerous again.

Exactly. Psychotherapy carries a clear risk of harm to the person, and unfortunately in the UK you know that all too well. A psychologist works with person in a state of vulnerability and the risk of manipulation, abuse can arise when he no longer listens to his patient's voice, projects his own beliefs onto him or exceeds his area of competence by claiming to be able to 'treat' a physical illness or reduce its symptoms, for example. This is why the practice must be framed by an adequate code of ethics. In my Province (CA), it is a professional Order which has the duty to ensure the training of psychologists and to protect the public against the misdeeds of its members (receive and manage complaints from the public). This professional Order does not defend its members, it is there to defend the public. Obviously, those kinds of safeguards have not worked for you in the UK.

The system is broken on so many different levels For example, when the Swedish ME Association complained to the Ethical Review Authority about one of Jonsjö & Olsson's ACT studies in 2015, pwME were ridiculed and brushed off:

Patientförening försökte stoppa forskning om ME
https://www.dagensmedicin.se/specia...ientforening-forsokte-stoppa-forskning-om-me/

Google Translate, English ("Patient association tried to stop research on ME")

When the National Association for ME Patients became aware of the study, it turned to the Central Ethics Review Board for a new review. The association believes that the method is controversial, that it should not be used and that it can involve great medical risks. [...]

According to Henrik Fransson [chairman of the National Association for ME Patients, Stockholm], the major medical risks that the patient association sees with the study approach are that a recurring overexertion often causes ME patients to become permanently impaired. That's why increased activation, according to him, is a difficult goal.

Gunnar L Olsson believes, however, that it is a misunderstanding, the study does not include any graded physical exercise and thus no medical risks.

- There are no such risks, it is stupid if you have to put it bluntly.

The details in the ethical review application clearly showed that the statement "the study does not include any graded physical exercise" was false.

 

[Sean]

ACT seems weird to me. I don't get why the average person with FM or ME/CFS of a few years standing would want someone who doesn't have pain or ME, 'assisting' them, telling them how to manage better, and 'act' for one's values, when frankly one has to learn to leave a lot of valued stuff behind, and be allowed to grieve it from time to time. And realistically deal with moment to moment pain and occasional glimpses of pleasure.

Who can really help you through this but a fellow sufferer?

This. The whole of the current clinical model is based upon the assumption that the clinician has some superior insight to offer the patient, when they quite clearly don't, and won't admit it.

 

[mango]

For what it's worth. The Andreasson/Jonsjö team has apparently widened their current ME study on low grade inflammation to include both burnout and post-COVID. Webpage here, forum thread here.

I believe this is part of their efforts to try and subgroup patients by combining psychological and biological data; an intent they have previously stated in, for example, research plans submitted to the Ethical Review Authority.

In their ACT research plan (2015) it says that the aim of evaluating symptoms in relation to psychological, neuroimmunological and endocrinological factors is to define what patient groups wiil have the best effect of ACT, and that the goal is to improve mental health, physical function (including the ability to work) and quality of life for adults with CFS.

 

[vsou]

I have done both CBT and ACT and found them extremely helpful—for anxiety and depression.

It doesn’t make any sense to me to use either for ME/CFS and I find efforts to do so extremely inappropriate and concerning.