CBT for ME that is accepted by the community.

[Grigor]

So I often get in discussions with BPS folks and the criticism some of them have is that we patients reject psychological treatments as a whole.

As a counterargument I often refer to the Energy Envelope Theory from the DePaul that is not considered controversial by the community and that is has similarities with Acceptance and Commitment Therapy.

https://me-pedia.org/wiki/Energy_Envelope_Theory#:~:text=The envelope theory suggests that,and symptoms of severe fatigue

The criticism they have is that EET is more about pacing, behavior and has too little to do with the cognitions, emotions etc. I haven't read enough about the EET but that could be true.

So I am looking for a more classic CBT model/treatment that respects our disease mechanism. Is there a CBT model designed for ME?

Thank you!

 

[Peter T]

So I am looking for a more classic CBT model/treatment that respects our disease mechanism. Is there a CBT model designed for ME?

I tried CBT some eight or so years ago and was lucky enough to have a very amendable newly qualified but bright practitioner who was happy to do lots of background reading into ME and importantly who grasped the concept of PEM.

At that time I was oscillating between mild and moderate, but had real problems pacing myself, problems accepting that I needed to impose restrictions on what I do; so regularly over exerting and regularly crashing. I would get angry and frustrated and push myself into doing too much.

I had previously worked on pacing with a regional specialist ME/CFS service and done all the activity diaries, recording everything I did and producing detailed graphs of my activity in quarter hour intervals. So it was not that I did not have an understanding of the benefits of pacing and of the possible strategies, it was that I was just bad at accepting that I needed to do it, bad at accepting that I had limits on how much I could do.

We agreed [my] problem was [accepting the need to] restrict any specific exertion to below my PEM trigger threshold and restricting my total activity over a day or a week to below what would worsen my condition. We then agreed specific objectives, which included scheduled rest, just not doing some things, ensuring any period included a balance of activities, including activities that were purely for pleasure as well and being up front with others about my limitation (a sort of coming out).

This seemed to help make life easier for and I think definitely helped me cope as my condition deteriorated to oscillating between moderate and severe, including some years of continuously severe. Obviously this is purely anecdotal and this CBT service provided within my GP surgery was discontinued, so I have no idea if my practitioner ever worked with anybody else with ME.

Dr Ellen Goudsmit talks of ‘good‘ and ‘bad’ CBT, but I can not remember any references for this and it could just have been in Blog comments. Further I don’t know if she was involved in formalising anything for ME. However despite having very ‘bad’ evidence for the ‘bad’ CBT, we have no evidence at all for ‘good’ CBT for ME.

It is interesting that here in the UK the way NICE describes CBT in their current ME/CFS guidelines is in conventional non BPS terms, despite the fact that the only research I am aware of looked at the form of CBT envisaged by the BPSers. So the existing outgoing guidelines already have the internal contradiction defining CBT as one thing, but basing their recommendations for that on evidence relating to something different. I wonder if the BPSers involved in drafting these guidelines consciously did this, just as they are still being disingenuous when they say ‘but CBT is used with such as cancer or MS so why do people with ME object to it’, when CBT helping people cope such as cancer is very different to the CBT designed to cure ME.

[added clarifications]

 

[Grigor]

However despite having very ‘bad’ evidence for the ‘bad’ CBT, we have no evidence at all for ‘good’ CBT for ME.

Thank you. Yes indeed. That was my impression as well. It's a shame though. It would be helpful to have a clear "good" CBT designed solely for ME.

Do you agree that the EET is too much focused on behavior /pacing and too little on cognition/emotions?

 

[mango]

It would be helpful to have a clear "good" CBT designed solely for ME.

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?

I'm curious, a question for those of you who believe there is a need for something different just for pwME: what do you think would have to be different in a ME only model, and why?

(It seems to me that for example learning to live with functional and neurocognitive impairment, emotional distress, stigma, activity limitation, participation restrictions in society, and the need for energy conservation isn't at all unique to ME.)

 

[Kitty]

what do you think would have to be different in a ME only model, and why?

Very much agree with what you say about similarities – there may be differences too, though.

For instance, the history of harm and abuse caused by BPS practitioners has to be acknowledged (and might need to be part of the treatment for those who've been seriously harmed); the offer to patients would have to be made very carefully, being clear that it's an option and not a compulsory part of treatment; and more flexibility about delivery might well be necessary, including shortened / flexible length sessions and the option of home visits.

I'm sure there are other considerations, but those are the ones that occur first. As you say, though, the actual programme of treatment would probably take a pretty similar course.


ETA: in the UK, it would also need to be made very clear to GPs that CBT shouldn't be imposed on patients who don't need it, or who are resistant to it because of the history.

 

[Milo]

I cringe when CBT is promoted as part of the ME treatment. Some of our experts in the field will say ‘the good kind of CBT’. What do they mean? And why would everyone with ME need CBT? Adjustment to a sick state? Learning about ME- which involves learning about central sensitization and how there is such a thing like sleep hygiene and why we should all not be in bed all day. Then they would tell you that you need to learn about grieving and adjusting. Then they would go on to teach you about healthy eating habits and that if your heart rate goes up when you get up, it’s because of central sensitization. And then there is pacing and they will go through that stuff in excruciating details, as if you were in primary school and did not understand grown up information.

I despise group therapy as part of the treatment package of ME- for one, most of us long haulers know all of this information. For two, it’s a waste of my time, and does not change anything. For three, i can spend my precious energy doing something more productive, or something that improves my quality of my life.

CBT is all about correcting the ‘unhelpful beliefs’. And in the last 10 years sick with this disease, i am absolutely convinced that being lectured on my behavior or my attitude is not going to change the fact that i live with this disease and without medical treatment i may never get better. I refuse to support such program that promotes acceptance and soft treatments, but is not looking for biomedical treatments and the science to understand the nature of the disease.

i think there is nothing wrong in asking and getting help when you struggle with one aspect or many aspects of living with ME. I would call this more counselling and not so much CBT. That is usually focused on what you need at a specific time and is best performed one on one, or along with a spouse if needed.

Anyways, that’s just me.

Edit to add: i am no proponent of central sensitization theory, but i wanted to give an example ofvthebkind of information that is shared out there to explain ME.

 

[Jonathan Edwards]

As a counterargument I often refer to the Energy Envelope Theory from the DePaul that is not considered controversial by the community and that is has similarities with Acceptance and Commitment Therapy.

The 'psychological' terminology is all very confusing but I think the key difference between genuinely 'psychological' therapies and EET is that a psychological therapy is one that I based on a validated psychological theory.

Even if we allow that some of the improvement in PACE was genuinely due to CBT, what the trial shows is that the underlying theory is invalid. If it were valid then subjective improvement would have been accompanied by a spiralling upwards of functional ability. It wasn't.

So my answer to any BPS person criticising PWME for not wanting psychological therapies is that there is no reason to do so if there is no known valid theoretical model. We can see from the history that the theoretical model can never have been validated in the first place.

You might ask then what is the justification for CBT for people with cancer or stroke. In one sense I personally doubt there is any either. On the other hand there is the pragmatic psychological theory that people who are chronically ill feel comforted by having someone to discuss their distress and fears. That theory is well enough validated. There is no doubt that many people report feeling comforted.

 

[James Morris-Lent]

Well they've found enough people to fill up cbt trials and keep clinics running for decades so I don't think anybody can seriously think there's a problem with all patients rejecting cbt/psych interventions out-of-hand.

Even Wessely published that paper finding that cfs patients do not have more anti-psychiatry attitudes than other people.

The fundamental problem is not a distasteful psych diagnosis, it's that the interventions don't work and the PACE theory is pretty well disproven.

The psychiatric nature of the BPS theory becomes a specific problem because of the consequences of the belief that patients can pretty easily choose to be well again. Practically speaking this makes it hard for patients to get the help they need, since according to BPS theory, it's actually bad for them to get any help (other than CBT!). Furthermore, even if it doesn't harm you directly, it is simply maddening to be treated at every turn within the medical system as some sort of psycho when you are not (There are all sorts of TV episodes about this. It shouldn't be that hard for people to understand.).

 

[Blueskytoo]

I was referred to my local hospital’s Liaison Psychiatry service when I’d been ill about 2 years and through a neurologist I’d seen (don’t get me started). He said I was depressed, though how he had the professional experience to diagnose me remains a mystery, but the psychiatrist I saw at the LP department said I wasn’t, which I knew but which did make me feel somewhat vindicated (up yours, snotty patronising neuro man!).

However, the psych kept going on about secondary gains and traumatic childhood (which I really didn’t have) although he was a sweet man and genuinely trying to help, but when he offered further sessions I declined, oddly . He did suggest I see their Nurse Practitioner who was an ME specialist and I did find some useful help from him. I’d pretty much come to terms by that point with losing my job (I was a teacher) and my mobility (wheelchair user for a year at this point) and my independence as well as the impact on my family (husband and three teenagers), and was through the worst of grieving for what I’d lost, so I didn’t really need much emotional support, but he was very helpful in working with me to identify the boom and bust cycle I was very definitely in at that stage. I’d pretty much got my baseline for that point in my illness down by this time but I definitely needed a bit of help to stop doing too much on days I felt better and therefore crashing badly afterwards for days. We worked on a doable daily plan, building in longer rests and breaking activities up into smaller chunks with rests in between, all of which was useful and which I’ve mostly stuck to in the 9 years since despite a slow and inexorable worsening from moderate to severe. (EDIT - just want to clarify that I stuck to the general principles of resting and breaking down tasks into smaller chunks with rests in between rather than an actual activity plan. My slide into severe was caused by other incidents including extra medical stuff and bereavement and other very stressful issues which have all taken their toll over the years, nothing to do with sticking to an unrealistic activity schedule.)

I managed three sessions with the nurse - the first two were about the baseline and activity recording, and the third was when he suggested I increase my baseline by five minutes a day for two weeks. I did this, because at that stage I didn’t know better, and spent the next three months recovering. I was too ill to go back and never did, and I remember feeling disappointed that our sessions had changed from feeling supported and being actively helped to change behaviour that was clearly not doing me any good to being told I could do more when I knew I already had a baseline that pretty much worked as long as I resisted overdoing it on “better” days.

So on the whole, the CBT part of my “treatment” was helpful and effective because it was based a little on me having ME but mostly on having a chronic illness and making changes because of that. It definitely helped that he knew of ME despite being of the “stress/HPA” school, but a lot of what he taught me was applicable to other chronic illnesses as well. I still think it was worth going to se him for that alone, although obviously as soon as we started to veer into GET territory I hit the usual problem in that it doesn’t bl**dy work for ME and often makes us worse. I wish I’d never agreed to try that, I never fully recovered from the relapse it initiated. But the CBT part was definitely helpful and gave me tools to change damaging behaviour that I’ve used ever since.

Edited for clarity.

 

[Trish]

From my limited understanding of CBT, the C part is about helping people to recognise their unhelpful thoughts such as repetitive thoughts of being a failure or being worthless or needing to push through pain, to examine those thoughts and learn ways to replace them with more accurate and positive thoughts.

Then the B part is that this change in your thoughts leads to a change in behaviour to your benefit so you cope with life better and can function more normally in society.

The negative part of this is if the therapist thinks they know better than the patient what the changed thoughts and consequent behaviours should be, rather than taking the time and being perceptive enough to help the patient sort out for themselves whether their thoughts are having a negative impact on their lives.

The therapist described by @Peter Trewhitt who understood the need to pace and helped him achieve it used CBT to good effect. I dont think I have ever come across any other instance of such a positive experience of CBT in someone with ME. From Peter's description, it was not only about acceptance, but about helping sort out the practicalities of how to pace effectively in the individual's particular circumstances.

I think that sort of approach does not necessarily require a therapist, but does require someone who understands ME and PEM really well, and can help with the practicalities of life changing reduction in activity and breaking up activity into smaller bits with rests in between. It's not something that can be prescribed in a formulaic way, because every individual has a different and fluctuating energy capacity.

I dont think any of this has to be the domain of therapy. For example, the Workwell clinicians describe prescribing exercise broken into tiny chunks of about 30 seconds with rests in between. And they help their patients work out practical ways to break up their daily activity, and how to use heart rate monitoring to inform when to rest.

The fact that it is medical advisors who are expert in your condition to both provide practical strategies for pacing, an instrument that gives objective evidence of the need to stop and rest, and validates the reality of the need to pace I think is far more powerful and effective than any therapy could be for learning to pace in ME.

Personally I think I would have found acceptance of my limitations by both myself and my family, friends and colleagues would have been immeasurably better with this sort of objective approach.

 

[Grigor]

Thank you everyone for answering.

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?

I recently saw a conversation with professor Rosmalen who was part of the Dutch health Council and a for 2 years and stated that PEM seem in ME is the same as seen in MS. While there are only a few pilot studies that show otherwise this is a problematic but not uncommon view.

So for me having a model that points that out would be already very helpful. Even though it's indeed very simple to "just" offer supportive CBT there are plenty of caveats that many therapist are not aware of.

Even Wessely published that paper finding that cfs patients do not have more anti-psychiatry attitudes than other people

Would love to know which paper you are referring to!

I dont think any of this has to be the domain of therapy.

I agree with that. We don't really need it to be but I do think it would be very helpful to have a document /study /model designed especially for psych whatever to read and understand. It could be very simple.

Anyways. From what I understand there isn't anything especially tailored for ME. Thank you!

 

[Hoopoe]

Do patients need CBT?

I think I would have been able to adjust better to the illness had there been someone to tell me this is a real and serious illness that I need to learn to live with.

A lot of depression could have been avoided if other people had been more accepting of my illness instead of doubting and denying.

It would also have been useful to have a better understanding of my limitations and capabilities.

One reason I'm skeptical about CBT is that it reduces problems to faulty thinking on part of the patient when in reality there is a lot of uncertainty (meaning it's hard to know what is right and what is wrong thinking) and the social context it also so important. Nobody is going to do well if they are surrounded by doubters and disease deniers who expect you to function normally despite being impaired.

Patients need social change and clarity on all aspects of their illness more than they need CBT. By clarity I mean a diagnostic test, a good way to understand how much patients are really able to do and better understanding of the course and onset of the disease, the involved mechanisms (is it childhood trauma or an autoimmune disease), which subsets patient falls into and so on.

 

[Kitty]

I think that sort of approach does not necessarily require a therapist, but does require someone who understands ME and PEM really well, and can help with the practicalities of life changing reduction in activity and breaking up activity into smaller bits with rests in between.

This is why I think funding should go into provision of specialist ME nurses, not CBT practitioners. Most comparatively new patients need access to someone who can offer advice on learning to live with ME as well as possible; spot symptoms that may be amenable to treatment, or are not typical of ME and ought to be investigated further; link them to local services and support groups; warn them about quack therapies and useless supplements offered online by people out to profit from them; and offer a bit of support during especially tough periods.

 

[Sean]

Even Wessely published that paper finding that cfs patients do not have more anti-psychiatry attitudes than other people.

Which was when their spin changed from 'patients are anti-psych', to 'a small hardcore militant group of anti-psych patients and hangers on (possibly violent) are preventing the vast majority of nice good patients from getting treatment'.

And what @strategist & @Kitty said.

 

[Trish]

think I would have been able to adjust better to the illness had there been someone to tell me this is a real and serious illness that I need to learn to live with.

A lot of depression could have been avoided if other people had been more accepting of my illness instead of doubting and denying.

It would also have been useful to have a better understanding of my limitations and capabilities.

This is why I think funding should go into provision of specialist ME nurses, not CBT practitioners.

I agree with both of these comments. We need medical people to take ME as seriously as a chronic phyical illness in the way they do MS and Parkinsons' disease (PD).

As far as I understand it from a friend with PD, they see their GP for general stuff, a consultant neurologist occasionally for diagnosis, occasional follow ups and a specialist Parkinsons' nurse for all the rest.

The nurse can recommend treatment changes, give support and informed advice on management, refer for OT for aids such as wheelchair and home adaptations, and physio for exercise/physical therapy and refer back to the consultant when major symptom or treatment changes happen.

I don't think they have ever been offered psychotherapy or CBT as part of the PD service, though they could have been referred to the general CBT/counselling service via the GP if they also had psychological issues, just as anyone can.

 

[Mithriel]

When someone is diagnosed with a disease they need information about how to cope with it, how to do any therapy and how to take medication as well as particle help with money, employment and benefits then any aids which would be of use. If they then need help with emotional problems that can be included.

This process is well worked out for diabetes. When my grandson became insulin dependent the clinic offered a place on a course where he could learn about the disease, he saw a dietitian and there was a nurse he could contact for any questions he had.

When I was diagnosed with type 2 diabetes I was given lots of leaflets and joined up to an NHS website called MYDiabetesMyWay where you can find your results and medication. It has now become infected with BPS but only in a "try mindfulness" sort of way. The nurse did ask, in passing, if I was anxious or depressed about the diagnosis bit has never asked me again.

Changing your cognitions by definition assumes your cognitions are wrong and that is rarely the case. If I am grieving, that is a valid reflection of what I am going through. If I ask for help with it, then I am saying I want to change my thoughts but CBT for anyone who is not psychotic and unaware of the real world should only be given to someone who wants their thoughts to change.

 

[Trish]

Sharing with permission from the author a couple of points by another member on a members only thread that I think are worth sharing here:

Taking my life-altering limitations seriously when there is no explanation is challenging. That challenge leaves room for the unhelpful kind of self-doubts. Those self-doubts are fostered by an environment that offers pseudsoscientifc explanations. The cognitive-bahavioral explanations have been the most harmful because they have become an essential part of healthcare and are imposed on us when we need healthcare.

I think it could only work if therapists acknowledged that their clients might not need their service at all if they received practical support to manage the essentials of daily necessities and, above all, were believed by their doctors.

 

[Jonathan Edwards]

But the CBT part was definitely helpful and gave me tools to change damaging behaviour that I’ve used ever since.

I understand that you got value out of the advice but is this in any sense 'CBT'. I spent my life explaining to people about their arthritis, what to hope for and what to accept as the natural path of their illness and what we knew about the best way to cope in terms of activity and work and so on. I would see them regularly over a period of years and discuss whatever was uppermost in their concerns at the time. I didn't see that as CBT but just the ordinary support function of a doctor. I very rarely asked someone else to do it either because they were unlikely to know more than I did about the illness or what to do or I had reason to think they believed in phoney theories about effects of activity on joints or mechanisms of pain.

 

[FMMM1]

The 'psychological' terminology is all very confusing but I think the key difference between genuinely 'psychological' therapies and EET is that a psychological therapy is one that I based on a validated psychological theory.

Even if we allow that some of the improvement in PACE was genuinely due to CBT, what the trial shows is that the underlying theory is invalid. If it were valid then subjective improvement would have been accompanied by a spiralling upwards of functional ability. It wasn't.

So my answer to any BPS person criticising PWME for not wanting psychological therapies is that there is no reason to do so if there is no known valid theoretical model. We can see from the history that the theoretical model can never have been validated in the first place.

You might ask then what is the justification for CBT for people with cancer or stroke. In one sense I personally doubt there is any either. On the other hand there is the pragmatic psychological theory that people who are chronically ill feel comforted by having someone to discuss their distress and fears. That theory is well enough validated. There is no doubt that many people report feeling comforted.

@Grigor I agree with what @Jonathan Edwards has written (above).

I work at a very junior level in Government (UK devolved administration policy - planning policy i.e. not health). If I'm writing to the Minister re this issue then the first question is what is the problem? With PACE I guess (haven't checked) it was the 225K people in the UK who have disabling fatigue and who are unable to participate in society in the normal way e.g. work, attend university ---. I then put forward options e.g. do nothing ---. In this case (PACE) they went for a study on CBT and GET. The key thing in policy is to include indicators i.e. to establish whether the intervention works. In this case the question is whether (as Jonathan has highlighted) you're seeking to improve "functional ability" e.g. ability to be more physically active - there were positive comments on this site recently re this paper* which assessed "functional ability" as expressed through physically activity (measured objectively using activity monitors --- not questionnaires!).

An alternative is that (as Jonathan has highlighted) "people who are chronically ill feel comforted by having someone to discuss their distress and fears", or, my daughters words come to mind, "it sucks to be you". I spoke to James Charles Coyne, after he gave a talk on PACE at Belfast Castle (2016), and he explained that e.g. if you're terminally ill then yes psychological interventions have been shown to help.

So if the Government is funding psychological studies then are they focused on helping you to cope with your disabling fatigue or helping you to get back to a "normal life" --- if these psychological treatments accept that currently you cannot return to a normal life (biomedical science hasn't shown ways treat disease), and have valid indicators (assessing how well you are adapting to your altered life) - then that seems acceptable to me. However, the Regulatory Impact Assessment has to clearly say that "psychological intervention" will not address the economic loss of 225K people unable to work etc. Also there are no savings in social security benefits etc.

If your proposing PACE to your Minister, on the basis that it will help to address the economic impact of 225K people being unable to participate in the economy (work) and reduce social security payments, then you need valid indicators e.g. as a minimum activity monitor data.

A thought occurs that PACE could be highly toxic to Governments - why? If there is a perception that your Governments view is of people who are unmotivated, unwilling to get out of bed --- and you base your policy on PACE (invalid study) then that negative view may resonate with the electorate --- if I were giving advice it would be to disown PACE --- that's presumably what the Westmnster debate and the revised NICE guidance are about --- disowning PACE.

To summarise - PACE is a piece of crap --- an invalid study used as a basis for Government policy---


*Accurate and Objective Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Disease Severity with a Wearable Sensor - https://www.researchsquare.com/article/rs-48360/v1

 

[Trish]

To summarise - PACE is a piece of crap --- an invalid study used as a basis for Government policy---

Making the economic argument for governments on PACE style therapy for ME should be very straightforward. Not only does therapy cost money itself, but at the end of treatment more patients were out of work and on benefits. End of story.