UK: MEA calls for GET & 'false illness beliefs' CBT to be ditched as primary treatments for ME

[Tom Kindlon]

FWIW
CBT.
Page 118

#988: ME moderate before course, remained moderate after course. Symptoms were the same after. Course not appropriate to needs.

“What I took from the course could have been condensed into 10 minutes. Don't catastrophize your situation! Try to avoid black and white thinking. But I simply do not rate it as a treatment for ME.”

 

[Tom Kindlon]

An example of somebody made worse by CBT (though it may have been CBT designed for depression)
Page 120-1

#1015 ME before course moderate, became severe after course. Symptoms were very much worse after. Course not appropriate to needs.

“I had two courses of CBT, one with a psychologist and one with an RN therapist. CBT was great for helping with lowering stress, anxiety, negative thinking patterns, etc. Would probably be great for anyone to engage in (healthy or ill).

BUT was not effective at all for treating ME.

It was irrelevant for that, except perhaps in that slightly lowered stress was less draining.

At the time, my doctors were convinced that my symptoms must stem from depression, and had convinced me as well. Consequently, I was fully committed to the programme and very motivated to follow their suggestions.

There was no need to discuss false "illness beliefs" because I did not have any. I believed my issues were purely psychological, and treated them as such. I was advised to try to ignore the messages of fatigue that my body was sending me, and to be as active as possible anyway – take walks, see friends, etc.

In retrospect, this was a terrible mistake for me, since it led me to push on in ways that caused a progressive and dramatic decline in my physical functioning. When I got so bad that I was bed bound, I finally received an accurate diagnosis, which explained FAR more of my symptoms than depression ever had.

If I had been only very mildly ill, I could see the lowered stress being helpful, since stress often seems to put extra strain on the body and make symptoms worse, but if I was that mild I don't know how I would have noticed that anything was wrong in the first place.

My level of functioning going into the CBT was not ideal. I had just left work. But at that time I could still drive myself, be independent, care for my own basic needs, etc.

After treatments, I was bed bound and unable to care for myself, feed myself, bathe myself, etc. I got so bad that I had difficulty holding my own head up even temporarily. And false beliefs of illness did not factor into it at all, except in that I had falsely believed the illness to be psychological. I should not have, and wish that I knew then what I know now.

During this time, I was also prescribed some antidepressants, which also had a negative rather than positive effect.”

 

[Sean]

Thanks for this, Tom. Can't be fun reading through these nightmare stories. Distressing enough just reading a few extracts.

 

[Sasha]

This is such a catalogue of abuse. This is just horrific. The BPS school have destroyed the trust of a generation of ME patients in the medical profession.

 

[Bob]

It's horror story after horror story of appalling medical practice. Time and time again stress and trauma seems to be caused by the 'therapists' and the 'therapies', on top of the already-traumatic experience of dealing with a new illness. Many of the patients felt abused and undermined by both the therapist and the nature of the therapy.

The medical establishment should be reading these first-hand accounts of what seems to be abuse rather than a therapeutic experience in many of the accounts given.

I notice that there seem to be quite a few people who weren't immediately made worse by the therapies but who later deteriorated because of bad decisions made after the therapies completely failed to provide good advice that was relevant or appropriate to the needs of the patient. Or outright harmful advice was given. Much of the advice, and the nature of the 'therapeutic' interventions, seemed to cater to the needs of the therapists rather than the patients.

 

[Bob]

Interesting point that the therapy sessions themselves, plus the travel to/from the sessions, didn't fit within the confines of the prescribed exercise/activity for one of the patients. That rather makes a mockery of the therapy and therapy sessions.

As someone pointed out, graded exercise isn't practical for exactly this story of reason. i.e. once you've done your prescribed activity for the day, it means you can't do anything else, such as: pop to the local shop if you need food; meet a friend; get to your therapy sessions; have a shower; wash the dishes; go up the stairs to the toilet, etc.

 

[Sean]

The undeniable core 'therapeutic' tactic here is deceitful double-bind intimidation.

Take a long hard look, modern science-based medicine. This savagery is being inflicted in your name.

 

[Tom Kindlon]

FWIW
CBT Page 121:

#1019: ME moderate before course, remained moderate after course. Symptoms were the same after. Course not appropriate to needs.

“I felt the period of the course was too long as the time it took to travel to the venue used a lot of energy, then to sit in the group with three professionals judging what you were saying and then telling you how you should be thinking telling you not to plan things.

I found the last half hour very beneficial were we had coffee and talked amongst ourselves hearing others way of dealing with things and to know I was not alone in the way I was thinking. The amount of us who had all had a virus and can pin point the beginning of our restricted life. None of us were depressed but continually being told we were – very negative.”

 

[Tom Kindlon]

FWIW=For what it's worth.
The ones I'm marking with that I don't find as interesting as the other ones but thought I'd post also (am not posting all the comments of course).

 

[Tom Kindlon]

FWIW
CBT Page 121:

#1037: ME moderate before course, remained moderate after course. Symptoms were somewhat worse after. Course not appropriate to needs.

“I was made to feel like I wasn't trying, my depression was not recognised. More encouragement was given to those who made most progress. I felt more depressed after the course, but felt compelled to say I had enjoyed it, almost too afraid to contradict the therapists.”

 

[Tom Kindlon]

FWIW
CBT Page 121:

#1047: ME moderate before course, remained moderate after course. Symptoms were somewhat worse after. Course not appropriate to needs.

“I found the therapies quite patronising, as they were common sense approaches already applied to my life. And as they did not work in a realistic set up, it significantly reduced my optimism of overcoming the condition, considering it was a take it or leave it approach, if the therapies did not work, it was tough, as there was nothing else that could be offered to help.”

 

[Tom Kindlon]

FWIW
CBT Page 122:

#1088: ME moderate before course, remained moderate after course. Symptoms were the same after. Course not appropriate to needs.

“Just unhelpful. I don't think a single member of the group was well enough to get to all the sessions, and I would need a day to recover after it every week. It was a 'one size fits all' course, not in any way tailored to the patients. There was a general atmosphere of 'if we didn't get better it was our own fault'. One girl was doing the course for the third time – so not cured then...”

 

[Tom Kindlon]

FWIW
CBT Page 123:

#1173: ME moderate before course, became severe after course. Symptoms were very much worse after. Course not appropriate to needs. Part only attended. Reason given – it was too tiring.

“Increase in painkillers, had 3 sessions and then had to stop going and doing what I was asked to do as I had become very much worse.”

 

[Tom Kindlon]

CBT. Page 124.

(It's not definite this CBT was designed for ME/CFS specifically)

#1206 ME mild before course, remained mild after course. Symptoms were the same after. Course partly appropriate to needs.

“I feel the course of CBT helped my initial diagnosis of depression, and I utilise the tools of CBT continually to help maintain my mental health.

However because I was encouraged to do things, i.e. continue at school as much as possible and engage socially, I feel my M.E. worsened because I was continually pushing myself to do more than my body was really capable of.

I ended up much more ill than before the course. It is impossible to know whether this would have happened anyway.”

(Note that this wasn't counted as a disimprovement though it looks like it was)

 

[Tom Kindlon]

FWIW
CBT
Page 124

#1226: ME moderate before course, remained moderate after course. Symptoms were somewhat worse after. Course not appropriate to needs.

“Made me feel worse; too much for me to attend and was a huge effort increased anxiety and fatigue, I couldn't confide in with therapist and he was unprofessional when making inappropriate comments and also provocative.

I hate going there but as it was me who wanted the support I daren't not attend and wondered whether this would go against me. The only benefit I feel I have had is some relaxation techniques and I could have had those from elsewhere.”

 

[Tom Kindlon]

FWIW
CBT
Page 125

#1242: ME moderate before course, remained moderate after course. Symptoms were the same after. Course not appropriate to needs.

“I've had CFS for over 10 years and really felt this course was not for me, even though I was interviewed by the course leader to assess my suitability prior to joining. All the other people on the course had been recently diagnosed.

The emphasis was on full recovery and I do not think this helped me. We were basically told that if you change how you think, you can get better from CFS, which is essentially the same as saying it is a mental illness and we are 'thinking' ourselves ill. I found this very disheartening.

As a scientist I read a lot of relevant literature regarding CFS studies showing evidence for a biological basis of the illness, so this type of treatment annoys me. In what other chronic illness would 'exercising a bit more' and 'changing how you think' be a treatment?

The pacing advice fine but I already do all that and have done for many years. I have excessive daytime sleepiness and need to sleep for at least an hour every afternoon (this does not interfere with my night time sleep).

I sleep as soon as I get home from work – if I try not to I am so unwell I cannot get out of bed to eat dinner or watch TV or even speak to my husband!

I was basically told on the course that I have 'trained' myself to sleep during the day and need to gradually stop doing it. I tried so hard during the course to do this, but it made my fatigue symptoms much worse and I just could not sustain it. As soon as the course finished I went back to my normal afternoon nap routine.

I think the course should have supported people with any activity that clearly helped them manage their symptoms (such as daytime napping for me).”

 

[Tom Kindlon]

FWIW
CBT
Page 125

#1243: ME moderate before course, remained moderate after course. Symptoms were very much worse after. Course not appropriate to needs.

“I did not appreciate that the Therapist told me that CFS was in the past (meaning before course started) therefore it DID NOT exist !!!”

 

[Snowdrop]

This is such a catalogue of abuse. This is just horrific. The BPS school have destroyed the trust of a generation of ME patients in the medical profession.

It is horrific. And yet the response from advocates, dr's and patients has been very muted. If there is going to be any change it's going to take courage to stand up to these giant abusive asses to effect change. I'm not saying to be strident and abusive in turn but to not back down not be polite and conciliatory trying to find common ground and bring everyone to a happy middle ground or what ever. I don't think that has been working and I don't think that's going to change anytime soon.

With all the positive things happening the UK seems to be peddling backwards and the abusers seem to be working very hard indeed to keep it that way. Even Julia Newton who does decent research is attached to the NHS through her hospital affiliation and doesn't seem to find CBT/GET to be a problem. Just my observation and thoughts FWIW.

 

[Tom Kindlon]

FWIW
CBT
Page 126

#1299: ME moderate before course, became severe after course. Symptoms were very much worse after. Course not appropriate to needs.

“The course meant that I could do nothing between sessions except recover. It was all I did outside of the house for three months and left me feeling very ill due to the exertion of going and the concentration involved.

This in itself was very demoralising, especially as some of the things on the course did not apply to me or make sense to me in terms of my illness.

I did also try to go to one-to-one CBT. I went to one session and it was far too much for me to be talking that intensively for an hour. I was not well enough and had to say no.”

 

[Tom Kindlon]

FWIW
CBT
Page 126

#1325: ME moderate before course, remained moderate after course. Symptoms were the same after. Course not appropriate to needs.

“It was pathetic, as a response to a devastating illness. They were well meaning but ignorant.”