CBT for ME that is accepted by the community.

[shak8]

You can access the short list of cognitive distortions (upon which CBT is based) on Wikipedia and memorize them. That way, you don't need someone spoon-feeding you them. You apply it immediately. Over and done with. Teach them in high school.

And there are other things to plague one's mind other than these cognitive distortions, like the propensity of having human guilt.

Instead we are descended upon by an army of theorist-practitioners. CBT is only one tool in a good therapist's repertoire.

I ask myself: is this MUS-CBT-PACE miasma a northern European cultural stance of (Calvinist): "work, work, pull yourself of out bed, you aren't sick, just get up and get on with it" ? Why the disbelief in the 9000 research articles, the physical pathology causing ME?

I wonder how ME is viewed in Japan or Indonesia or other countries.

Are psychologist so lacking in imagination that they cannot go beyond their quotidien concepts of what illness can do to the human body? Number one problem: they do not have medical training!

I do agree that trained, knowledgeable (sorry can't spell) and empathetic nurses would likely be the ideal therapists for PwME who need emotional support. If nurses find serious psych problems beyond their scope of practice, they can refer out.

 

[Hoopoe]

I ask myself: is this MUS-CBT-PACE miasma a northern European cultural stance of (Calvinist): "work, work, pull yourself of out bed, you aren't sick, just get up and get on with it" ? Why the disbelief in the 9000 research articles, the physical pathology causing ME?

I wonder how ME is viewed in Japan or Indonesia or other countries.

Yes it appears to be partially cultural.

The dark side of a strong work ethic may be a hatred towards those who are seen as giving in to fatigue, or who don't work and don't have a cast iron excuse.

 

[NelliePledge]

The IAPT CBT I had was much more like training sessions I’ve had at work where it was about getting basic messages about say health and safety or discrimination or data security where everyone in the organisation had to have the same sessions. Eventually they put these on the Intranet as computer based training. Known as CBT

This bears no comparison to my sessions with my counsellor which are her supporting me to think through distressing issues and practical problems - acting as a sounding board- no worksheets or checklists involved.

 

[JemPD]

This is just my opinion but I doubt very much this applies to too many people. Although I do think at times people may need to be reassured by some of the things you mention. A good counsellor could help with anyone stuck in distress despite reassurance. I still don't think CBT is the most efficacious way to deal with this.

I dont disagree @Snowdrop I didnt say it applied to lots of people or that CBT was the most efficacious way to deal with it. I possibly didnt word that very well. I am no particular fan of CBT, quite the reverse. - Personally i detest it because i was badly harmed by the whole 'positive thinking' thing. I did not have CBT (see below)i just meant that it can have value when people are struggling with thoughts that aren't helpful, phobias & stuff - i was meaning that i felt that was the only time it has value, I wasnt defending it per se.

I was indicating that it's remit should be limited to that, not that it is the best thing for that problem. Of course a good counsellor can help with that. And so for much of the time & for many people, can a good friend who understands ME - but only if they aren't under the impression that ME = tiredness you can push through if you try hard enough.
I simply said "it's valuable when" - meaning these are the circs in which it may have value. I have edited my post's first line to clarify that

@JemPD

Also, I should note that I responded to your post before reading through (I read to as far as the quote).

While I accept that CBT has clearly helped you I would argue that using that truth to argue for CBT in general may do more harm defending it than good IMO.

I agree with others that there are a number of ways to get help that don't involve CBT and avoid the very real downside of the CBT expansion into all aspects of illness.

I didnt say CBT helped me - i never had it... i said

I've had psychotherapy (humanistic approach - which isnt about technique but is an egalitarian approach, rather than a freudian 'therapist knows best' one) but it wasnt for my ME.

and that it helped me with the fact that for the first few years i struggled emotionally because I felt that not being able to push through my illness was being 'weak'. The therapy wasn't for the ME it was a trauma related issue that occurred some yrs after the ME started, it just happened to help me to manage my ME better because the therapist happened to be enlightened about the realities of ME.

Let me be crystal clear.....I am not in any way 'using my truth to argue for CBT in general' or for any kind of psychotherapy in general or specifically. Any more than i would argue in general for anything else that had helped me.
If you read my post again you will see i said that any kind of psychotherapy shouldn't be offered to PwME as a matter of course, any more than it would be to someone with MS - and what i meant by that was that it shouldnt be offered to PwME any more than anyone else who is struggling with the impact and adjusting to a severely disabling life changing illness.

I only said (in response to an OP asking if any kind of CBT could be helpful/accepted by the community) that psychotherapy can be helpful sometimes, but not offered as a matter of course, and that any kind of therapy will be harmful if the therapist believes that ME is caused/perpetuated by unhelpful beliefs ( ie that the cognition 'i am suffering from an organic illness' is unhelpful and inaccurate).

Also I don't think that saying that something can be helpful in certain circumstances "promotes the expansion of it into all aspects of illness". All kinds of things are helpful in certain circumstances that would be harmful in others. But i do agree that all psychotherapy needs kicking out of the 'multidisciplinary approach' and put back into the services for people struggling emotionally/psychologically, to be accessed separately as needed.

 

[NelliePledge]

Same. For my actual mental health problems, I found self help books more helpful than IAPT CBT lol. But maybe the therapist that I got was just an idiot.

I don’t think the IAPT staff are idiots they just aren’t professional counsellors psychologists. Or if they are they are over qualified for the actual job they are doing limited to working through the manual in a mechanistic way which must be soul destroying and probably explains the bad staff surveys and turnover they get.

 

[JemPD]

I can add my ten cents. Firstly there is the nurse in Scotland who seems to be very popular. He seems to offer people a great deal of support as well as helping people with pacing etc
. Secondly the closest therapy I've come across as suitable for folks with M.E. is health psychology. I developed some issues a few years back which required support. Health psychologists are trained to help disabled people cope with their health problem or help treat any psychological problems unrelated to your health but from the viewpoint of a disabled person. At no point have they insisted on 'treating my M.E' and I've been able to go at my own pace. I really liked the fact that I was being treated just as any other disabled person would be; respectfully.
I'm find it tragic that people can't access mental health support because of the threat of having your M.E. 'fixed' ie inappropriate confrontational practices that push people into relapses.
Also I was so ill at the beginning of the illness that I just needed care, pushing my brain into thinking about anything was too much. Particularly needed to be told it was okay to be ill and let go of my life as it had been.

Thats fascinating @Shinygleamy because I'm aware of someone who saw a health psychologist who had the exact opposite experience, i'm so pleased you had a good one.
But it brings me back to my point that the type of therapy/counselling/psychology etc isnt the main point, but rather the belief and attitude of the therapist is. ETA: when it comes to supporting people with ME

 

[JemPD]

I do agree that trained, knowledgeable (sorry can't spell) and empathetic nurses would likely be the ideal therapists for PwME who need emotional support. If nurses find serious psych problems beyond their scope of practice, they can refer out.

Completely agree. As others mentioned up thread happens for PArkinsons patients etc (sorry dont have the energy to scan through to quote.

The dark side of a strong work ethic may be a hatred towards those who are seen as giving in to fatigue, or who don't work and don't have a cast iron excuse.

Yes i'm afraid I fell into this category - to my eternal shame. Hence my having such difficulty when it happend to me... Needless to say i changed my thinking radically about a lot of things over the yrs.

 

[Snowdrop]

Secondly the closest therapy I've come across as suitable for folks with M.E. is health psychology.

With regards to health psychology I think it might be useful to know:

Health psychology differs from traditional psychology. Its basic premise is that people are healthy and need only short-term treatment. Unlike traditional psychology, where there is often a focus on pathology with the concomitant need for long-term therapy to gain appropriate insight, health psychology focuses on a short-term approach to help individuals cope with the health issues that affect them. Health psychology often uses a brief cognitive-behavioral model, while traditional psychology generally uses a long-term psychodynamic model.

Source: https://www.medscape.com/viewarticle/447435_2

 

[Hutan]

In my view its not the type of therapy thats important imo, it's the beliefs of the therapist. Any counsellor/therapist who understands that ME is a seriously life impacting disease with all that goes with it, can give supportive listening & help you work through things.

I'm currently working with our regional health authority on some online guidance for Allied Health covering both chronic fatigue and ME/CFS. It's part of the HealthPathways online information service. 'Allied Health' covers people such as physios, occupational therapists, dieticians and counsellors - also chiropractors, probably acupuncturists and more. The guidance is looking similar to the one we did for doctors and nurses.

It explains things like PEM and activity management/pacing. It mentions that the patient should observe how various types and levels of activity affect their health, be it positively or negatively, so that they can make informed choices. It mentions the range of severity in ME/CFS, reinforcing the idea that it can be an extremely debilitating illness. It mentions that patients may have had negative experiences in the medical system and may have had difficulty getting the impact of their illness acknowledged and in accessing support services that can help. It says that the cause of ME/CFS isn't known but that there is no evidence that it is caused by faulty thoughts or behaviours, and that there are currently no effective treatments.

It gives guidance on when an allied health service provider should refer their patient to a doctor - this includes the identification of PEM in someone who hasn't been diagnosed with ME/CFS.

It provides links to useful professional groups who can provide more specific and up to date information, like Physios for ME, where they exist, and to other reliable sources of information including the CDC and Emerge websites and the regional patient support group.

I don't think we need a special 'CBT for ME'. As others have said, we need better informed health service providers who can tailor their service to the needs of people with ME. Some people with ME/CFS might want a counsellor, so the need is for counsellors who understand the impact of chronic illness and know some basic things about ME/CFS.

 

[Amw66]

Same. For my actual mental health problems, I found self help books more helpful than IAPT CBT lol. But maybe the therapist that I got was just an idiot.

Sadly idiots proliferate

 

[NelliePledge]

Sadly idiots proliferate

If the manual you have to work to is idiotic it is an invidious situation it doesn’t necessarily mean the individual member of staff is an idiot. they may not know any better because that is how they have been trained and it is all they know. They may realise it is a pile of tripe but they are stuck working there until they can find alternative work.

 

[JemPD]

I'm currently working with our regional health authority on some online guidance for Allied Health covering both chronic fatigue and ME/CFS. It's part of the HealthPathways online information service. 'Allied Health' covers people such as physios, occupational therapists, dieticians and counsellors - also chiropractors, probably acupuncturists and more. The guidance is looking similar to the one we did for doctors and nurses.

It explains things like PEM and activity management/pacing. It mentions that the patient should observe how various types and levels of activity affect their health, be it positively or negatively, so that they can make informed choices. It mentions the range of severity in ME/CFS, reinforcing the idea that it can be an extremely debilitating illness. It mentions that patients may have had negative experiences in the medical system and may have had difficulty getting the impact of their illness acknowledged and in accessing support services that can help. It says that the cause of ME/CFS isn't known but that there is no evidence that it is caused by faulty thoughts or behaviours, and that there are currently no effective treatments.

It gives guidance on when an allied health service provider should refer their patient to a doctor - this includes the identification of PEM in someone who hasn't been diagnosed with ME/CFS.

It provides links to useful professional groups who can provide more specific and up to date information, like Physios for ME, where they exist, and to other reliable sources of information including the CDC and Emerge websites and the regional patient support group.

I don't think we need a special 'CBT for ME'. As others have said, we need better informed health service providers who can tailor their service to the needs of people with ME. Some people with ME/CFS might want a counsellor, so the need is for counsellors who understand the impact of chronic illness and know some basic things about ME/CFS.

That sounds really good @Hutan

 

[Amw66]

I'm currently working with our regional health authority on some online guidance for Allied Health covering both chronic fatigue and ME/CFS. It's part of the HealthPathways online information service. 'Allied Health' covers people such as physios, occupational therapists, dieticians and counsellors - also chiropractors, probably acupuncturists and more. The guidance is looking similar to the one we did for doctors and nurses.

It explains things like PEM and activity management/pacing. It mentions that the patient should observe how various types and levels of activity affect their health, be it positively or negatively, so that they can make informed choices. It mentions the range of severity in ME/CFS, reinforcing the idea that it can be an extremely debilitating illness. It mentions that patients may have had negative experiences in the medical system and may have had difficulty getting the impact of their illness acknowledged and in accessing support services that can help. It says that the cause of ME/CFS isn't known but that there is no evidence that it is caused by faulty thoughts or behaviours, and that there are currently no effective treatments.

It gives guidance on when an allied health service provider should refer their patient to a doctor - this includes the identification of PEM in someone who hasn't been diagnosed with ME/CFS.

It provides links to useful professional groups who can provide more specific and up to date information, like Physios for ME, where they exist, and to other reliable sources of information including the CDC and Emerge websites and the regional patient support group.

I don't think we need a special 'CBT for ME'. As others have said, we need better informed health service providers who can tailor their service to the needs of people with ME. Some people with ME/CFS might want a counsellor, so the need is for counsellors who understand the impact of chronic illness and know some basic things about ME/CFS.

This

 

[Amw66]

If the manual you have to work to is idiotic it is an invidious situation it doesn’t necessarily mean the individual member of staff is an idiot they may not know any better because that is how they have been trained and it is all they know. They may realise it is a pile of tripe but they are stuck working there until they can find alternative work.

Yes, this is very true. I know of a couple of therapists who worked at CAMHS and at that time it was largely a one trick pony with a set script.
Many kids also worked out what they should say to " please" the therapist , especially if personalities were an issue, so overall efficacy was questionable.

Both therapists left after a couple of years.
I really hope that the experience is different now

 

[James Morris-Lent]

Would love to know which paper you are referring to!

Here's a thread on it -
https://s4me.info/threads/personali...fatigue-syndrome-1999-wood-and-wessely.11524/

 

[Yessica]

I'm currently working with our regional health authority on some online guidance for Allied Health covering both chronic fatigue and ME/CFS. It's part of the HealthPathways online information service. 'Allied Health' covers people such as physios, occupational therapists, dieticians and counsellors - also chiropractors, probably acupuncturists and more. The guidance is looking similar to the one we did for doctors and nurses.

Thank you for working on and doing these guidances @Hutan Is there a link to the guidance you did for doctors and nurses? Would love to see it and the one you're working on now too when it's done.

 

[FMMM1]

I actually think this is the wrong approach. Health care professionals should not be advising patients on the basis of models or guidelines but on the basis of knowledge of evidence. That has always been the way doctors work until recently and it remains the way specialists work.

And why provide guidelines for practitioners who have nothing particular to offer? Why not ensure that people with the knowledge - who in this case might be doctors or nurses with specialist training - are given the job of advising?

I don't see the need for a 'course'. My arthritis patients did not attend courses. They talked to me repeatedly over many years and we dealt with issues stepwise when they were at the front of the patient's mind.

I don't know many health care professionals dealing with PWME but I do know a few. I know of one particular nurse with a huge amount of experience who talks to patients regularly either in a clinic or at home and who seems to me to work just on the basis of what we know from research and common sense. I suspect she is at least as good as a someone medically qualified. I know of clinical psychologists who see patients in clinics and I would not let them within a mile of anyone under my care because they clearly have no understanding of reliable evidence. They assume that they know that they can make people better without understanding that they are not in a position to know that without controlled trial evidence.

There is a strange divide between nurses and doctors on the one hand, who are people who use whatever methods they think are justified to help ill people, and 'therapists' on the other, who are often people who are trained to apply specific theories through specific techniques whether or not there is any reason to think they work. The distinction is not black and white. Occupational therapists fall somewhere in between and often on the former side.

@Grigor I think this is a very interesting suggestion by @Jonathan Edwards i.e. instead of having a separate (psycological) specialist why not use those with a medical background, and knowledge of the disease (ME), and get them to "counsel" those they treat.

I assume that James Coyne had certain specific psychological approaches in mind when he said that e.g. for people with terminal cancer psychological approaches can work - to help improve the quality of your remaining life. But why not look at the integration of valid psychological approaches into the care provided by biomedical staff - doctors and nurses?

I also like the focus on evidence; if a course of "treatment" is proposed then valid indicators should be included i.e. to assess whether the treatment works. I don't mean questionnaires.

There may be a role for other support staff e.g. how to access social security benefits; however, that's not really treatment to be delivered by biomedical or psychological staff.

 

[Barry]

I imagine that a pwME's energy envelope limits are large uninfluenced by the person's behaviour (unless they push their body too hard, and thereby deflate their envelope disastrously), and much more influenced by the physiological issues of ME/CFS. So I suspect the envelope will expand, shrink, stay the same as per the physiology. But wherever it is, being able to avail themselves of their limits as best they can would inevitably be good for pwME. If CBT could genuinely help pwME to understand, discover, and work to, but within, that envelope then I think that would be good. But any presumption such CBT might help them to expand it, just by doing that, would be into dangerous territory I think.

 

[Woolie]

I can't help wondering if maybe "designed solely for ME" is actually part of the problem? Why not offer people with ME the same regular kind of supportive CBT that is offered to people with for example MS, stroke, SLE/lupus and other severely disabling chronic illnesses?

In practice, I think it all comes down to the individual beliefs of the practitioner, and some just can't "let go" of the idea that addressing our psychological problems might fix our physical ones. If the person believes ME to have a major psychological component, and they know you have ME, then the entire process is doomed from the start.

In my experience, many mental health practitioners and psychologists believe that their interventions can at least ease our symptoms - if not completely eliminate then - but most will not tell you to your face. This probably isn't that unusual, most health professionals are likely to overestimate the role of their particular specialty in curing a person's problems, from physiotherapists to nutritionists to fitness trainers.

I say this from experience. I went to two counsellors for help building coping stratgies when my health started deteriorating and I stood to lose my job. I found out much later that both saw my ME as a symptom of my psychological problems. The result was, they focused on things that weren't helpful to me. When I worked out why, I felt betrayed and invalidated.

The third time I saw a mental health specialist, it was a psychologist, and by then I had been given an alternative diagnosis, so ME never came up. That experience was entirely different. It started from full acceptance of the physical problem, and then built on ways of working with it.

So I would say there is no "good" and "bad" CBT, only overconfident practitioners, and bad case formulation based on a bad model of disease causation.

My recommendation: if you want good mental health help, lie about your diagnosis if possible.

 

[Woolie]

With regards to health psychology I think it might be useful to know:

Health psychology differs from traditional psychology. Its basic premise is that people are healthy and need only short-term treatment. Unlike traditional psychology, where there is often a focus on pathology with the concomitant need for long-term therapy to gain appropriate insight, health psychology focuses on a short-term approach to help individuals cope with the health issues that affect them. Health psychology often uses a brief cognitive-behavioral model, while traditional psychology generally uses a long-term psychodynamic model.

Source: https://www.medscape.com/viewarticle/447435_2

For the record, I don't think this is very accurate. In this blurb, health psyc is being favourably compared to something they have called "traditional psychology", which is supposed to be based on a psychodynamic model. That sounds more like "nineteenth century psychiatry" to me. Also, I've seen the content of a few Health Psyc programmes, and they definitely cover BPS type stuff - reducing "pain catastrophising" and stuff like that. So this blurb doesn't accurately reflect what Health psychs are actually being taught.

A quick look at their flagship journal "Health Psychology" and you'll see what I mean (includes papers by Wearden, etc).