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

[Tom Kindlon]

(Not important)

In the Pacing section, but really a mixture.

Page 151

#747: ME moderate before course, became mild after course. Symptoms were very much better after. Course appropriate to needs. Part only attended.

“It was a multi component programme to teach sufferers of ME about the illness and how best to try and cope with it or even improve. Pacing and CBT has completely turned my illness around, although I am still unwell I can function much better than I could before and can actually get out of bed more often than not which is good.

I was on Duloxetine and Pregabalin and at the start of my treatment these were changed to Fluoxetine and Tramadol. My level of activity has increased enough to allow me to do some jobs at home but sadly I am still not able to return to work just yet.

The GET and any increase in physical activity for example running, cycling, swimming etc. renders me too ill to get out of bed so this did not help at all.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 151

#771: ME moderate before course, remained moderate after course. Symptoms were the same after. Course appropriate to needs.

“I felt it validated my need to rest and made me more aware when I was overdoing things and pushing into the 'danger zone'.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 151-152

#887: ME moderate before course, remained moderate after course. Symptoms were the same after. Course appropriate to needs.

“Firstly it was just wonderful to meet other people with similar problems. It was also wonderful to be assured that it wasn't all in my head or that I was lazy.

The idea of pacing is extremely sensible and although I wouldn't say it enabled me to increase my levels of activity it gave me the courage to manage things I had to/wanted to do by ensuring I had adequate rest periods.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 151

#1013: ME moderate before course, remained moderate after course. Symptoms were somewhat worse after. Course not appropriate to needs. Part only attended. Reason given – it was too tiring.
“The pacing suggested did not take into account other people I live with or normal living. It required a rigid routine that I cannot keep to.”

 

[Tom Kindlon]

(Not important)
Pacing
Page 152.

Sounds like "graded pacing"

#1129: ME moderate before course, became severe after course. Symptoms were very much worse after. Course partly appropriate to needs.

“Looking to improve your physical functionality is important, and doing so systematically and progressively sounds sensible, but unless the clinicians can accept that there are limits that can cause a crash, that other things like mental activity and job routines have an impact that can stop this progress, this is a dangerous and blinkered 'fittest' approach.”

 

[Tom Kindlon]

This person wasn't happy!

(Not important)
Pacing (that's the section of MEA report its listed in)
Page 152.

#1313: ME moderate before course, remained moderate after course. Symptoms were somewhat worse after. Course not appropriate to needs.

“The "ME Intervention" was insulting, overpowering and awful!”

 

[Tom Kindlon]

CBT
Page 155

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

“Suffered severe damage from attending the introductory sessions. I was also actually horrified and insulted to find out what this "CBT" actually is.

Positive mental attitude renamed e.g. do you feel worthless ? Do you feel useless? Have you lost interest in your appearance? Do you need a kick up the backside to do something (need motivation).

What a cheek! This is very much like a cult, X Cult. Do people actually get paid for preaching and
teaching this rubbish does this actually qualify as a job?

I actually worked for a living , hard physical work and used my brain also, if this is all I had done as a so called job I do not think I would ever have reached this state.

Surely this is simply a questionnaire for depression? Would you give this treatment to cancer patients instead of chemo, no? Then why give this crap to ME patients?”

 

[Tom Kindlon]

Example of coerced therapy

CBT
Page 156

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

“This course might have been useful at the start of my illness but I had already been ill for over 10 years and had learnt most of the information given through experience. I had also learned through trial and much error that graded exercise had a negative effect both on my health and my morale.

The only reason I undertook the course was because my employer would not release my pension on health grounds until I had done it. My ME specialist had referred me as a result, but did not think that it would be of help.”

 

[Artstu]

I was going to post this in the closed thread, but it closed as I typed, and if I don't post it now I won't type it again.

In all my years, I've heard nothing bad about the therapists and read about only one negative report re Prof. White.

I remember reading loads of negative comments about therapists in this very thread, not sure which page they start on.

http://forums.phoenixrising.me/inde...hed-as-primary-treatments-for-me.37782/page-6

 

[Tom Kindlon]

(CBT section)
P156-7

#105: ME severe before course, remained severe after course. Symptoms were somewhat worse after. Course not appropriate to needs. Part only attended. Reason given – I did not like the course.

“Answering all questions is tricky: their approach and their beliefs were quite sophisticated, e.g. they 'told' us their objectives ('ME-sympathetic') but these were quickly revealed as lies (as they switched into 'ME-hostile'). They also moved between Pacing and GET-style approaches with shifty slight-of-hands.

They were overtly 'on-our-side' and hyper-aware of ensuring we felt safe and taken seriously, etc. then would slip in their 'evil'. They also used a lot of psychological techniques (sub-consciously, I'm sure) to manoeuvre the group into their desired state of acceptance of CBT-GET style thinking – like blanking things people said that were counter to their belief-system, or encouraging the group to recognise such things as 'Negative-Illness-Causing-Thinking'.

It was subtle but powerful – like mind-control, like a cult. I studied cults as a part of my Social Science studies when I was well, before, and there is no distinction between the CBT approaches of these 'clinics' and cults in terms of the way they operate. I believe they are dangerous and unacceptable as a part of any serious medical care system.”

https://twitter.com/i/web/status/681561440352747520

 

[Tom Kindlon]

(CBT section)
P.157

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

“All of my CBT/GET took part in Hospital when severely affected. I was denied all medications including pain control, as this was said that this would enforce my belief ME was a physical illness. I was denied any measuring of blood pressure/pulse/respiration as again I was told this was a negative enforcer.

When I relapsed I was told I was trying to ruin the programme of recovery and if I did not improve I would be discharged. When I failed I was also told I was a useless person who cannot be bothered to make an effort to recover.”

https://twitter.com/i/web/status/681563781932036096

 

[worldbackwards]

When I failed I was also told I was a useless person who cannot be bothered to make an effort to recover.”

I recognise that one.

 

[Tom Kindlon]

(CBT section)
P.158

#140: ME severe before course, remained severe after course. Symptoms were somewhat worse after. Course not appropriate to needs. Part only attended. Reason given – I did not like the course.

Extract: “Distressing, brainwashing and misinformation which describes what we suffer from as deconditioning and behavioural habits. I had to educate them and I felt I was always on the defence. One specialist nurse was stubborn and kept referring me to the manual, instead of acknowledging what I said.

Agenda driven, back to work attempts by the government based on erroneous CF and deconditioning has nothing to do with ME. A lot of the 70+ references quoted in the manual were not even supportive of the therapy. Some were on astronauts, the elderly, heart disease patients and athletes! The complete untruths about the illness not being a virus, no underlying disease process and that we are just deconditioned. If people need support, counselling would be more appropriate, not brainwashing CBT. Totally unethical and damaging. Glad I was able to stand up for myself. Others sadly can't or don't and they suffer more from this unethical therapy.”

https://twitter.com/i/web/status/681568451945566208

 

[Tom Kindlon]

FWIW
(CBT section)
P.158

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

“I do not enjoy being told what to think. I asked repeatedly for a definition/explanation of what CBT was. I don’t think she was trained enough to answer.

She wrote to GP saying I had an unhappy childhood. Rubbish. I got her to retract it. As for thinking differently she couldn’t grasp that not expecting to get better was a protection mechanism against daily disappointment but didn’t stop me hoping to get better. I don’t expect to win the lottery but buy a ticket. We were not compatible.”

 

[Tom Kindlon]

(CBT section)
P.159

197: ME severe before course, remained severe after course. Symptoms were somewhat worse after. Course not appropriate to needs.
“The course leaders were not open and honest about their belief that "CFS" is psychological and we were just deconditioned. I think they knew that if they were honest about that then people would leave!

After the CBT/GET course I declined from severe to very severe and my pain medications increased vastly. I wish I had not agreed to go on the course.

They should be honest about their beliefs as to the cause of the "syndrome". I was trying to be a good patient to my GP and to "show willing" by agreeing to go, so I was devastated when I realised they were suggesting it was all psychological. I tried hard with the GET and cut back on resting and napping and it all made me worse. Disaster!”

Note: It was confirmed this is a correct report although respondent said the degree of severity of ME remained the same after the course but the remarks indicate otherwise.

Aside: Though perhaps not explicit coercion, the patient "was trying to be a good patient to my GP and to 'show willing' by agreeing to go"

https://twitter.com/i/web/status/681571546452766720

 

[Tom Kindlon]

FWIW
I don't find this as interesting as most of the others. But initially when I was reading it, I thought it mustn't have been a CFS course until the last paragraph where it is made clear it is a CFS service course. Also gives an insight into group courses.

P.159
(CBT section)

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

Extract: “The OT offered me a place on the CBT course as there was nothing else available to offer, she thought it might be of benefit to me so I agreed to try it. Initially I was meant to be attending a group course.

The first session was held in a morning (the time I usually sleep) so it was really difficult for me to make it there. The hospital doesn't have anywhere suitable for a group so the session was in a hired room at the local MS Society centre. The session went on for over 2 hours, by which time I was feeling absolutely awful.

The group setting also made me uncomfortable, I arrived and found myself sat in a circle of people I'd never met before and was expected to openly announce to the group who I was and my diagnosis (and 'how it made me feel emotionally') and a brief medical history.

I found this really intrusive and uncomfortable and did not enjoy the process at all. It became apparent that I had been ill for a lot longer than anyone else present (15 years as opposed to 3 years max.) and that I was the only person in the room who hadn't also been diagnosed with clinical depression.

I found the experience to be very disturbing, the other group members didn't seem to know much about ME and appeared depressed, being incredibly negative, wanting to spend the session moaning and crying about how rubbish their lives were and I was left feeling really dragged down by the whole experience.

The OT is a lovely lady, but has only worked for the 'CFS service' for about two years, having previously worked with people with depression. I felt she was sympathetic but didn't really understand.”

 

[Tom Kindlon]

FWIW
CBT
Page 160

Again, I don't find this as interesting as a lot of the others but it does show the practical problems that can make doing such courses and following the instructions difficult

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

“The programme was intended to teach us to manage our illness. It didn't help in my circumstances. If I had a full time carer it may have been different. I needed all of what energy I had to listen to my son when he came home from school, to get food into the house and to try and cook one a day. I didn't have any spare energy to spend doing things suggested by the CBT.”

 

[Tom Kindlon]

FWIW
CBT
page 160

Again, I don't consider it as interesting as many of the others but does show some issues that can arise e.g. a type of bullying.

#367: ME severe before course, remained severe after course. Symptoms were the same after. Course partly appropriate to needs. Part only attended.

“No change in meds... The person was quite condescending and did not agree with me doing a bible course. She told me to stop study... This was what got me through to where I am now. I had been bedridden for two and half years with a four year old and no support asides few neighbours. So it was important to me to get well.

She got quite annoyed with me on our second to last session when I refused to agree I was starting to feel better. My body did not feel better. It was still as weak as before.

It became very evident that she was after a statistic for her notes so I did not go back to the final apt. as she was quite bullying.

I would have liked someone to have been in with me but this was not possible. So she could really get away with saying what she did including saying bad comments about Jesus name. Knowing full well that was my belief.

She did not understand. Nor did she want to. Just statistics to say they were doing something!

 

[Tom Kindlon]

FWIW
CBT
page 160
Again, I don't consider it as interesting as many of the others but does show they're probably going to try to find some fault in you.

#374: ME very severe before course, remained very severe after course. Symptoms were the same after. Course not appropriate to needs. Part only attended.

“The psychiatric nurse visited me three times, talked about my mental approach to life and activity, and told me I was well already advanced in CBT techniques (I had done some professional training prior to becoming ill, so applied such techniques naturally); I think he suggested I was a 'perfectionist' and encouraged me to 'lighten up'. But he felt I didn't need any more help after the three sessions.”

 

[Tom Kindlon]

FWIW
CBT
page 161

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

“The therapist told me that ME was/is a psychological condition and that it was perpetuated by false illness beliefs.”

This is the position CBT manuals come from (in UK, Netherlands, etc.) but patients aren't always told this.