CBT for ME that is accepted by the community.

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.

 

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.

 

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

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

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.

 

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

 

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

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.

 

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

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

 

Sadly idiots proliferate

 

That sounds really good @Hutan

 

This

 

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

 

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

 

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.

 

@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.

 

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.

 

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.

 

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).