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

[Tom Kindlon]

CBT section:
page 161-2

#537: ME severe before course, remained severe after course. Symptoms were the same after. Course partly appropriate to needs.

“I desperately wanted (and still want) to get better, so I believed what I was told by the Clinical Psychologist, that “the illness had left my body” and that it was only my belief that I was ill that stopped me from getting better.

As a result I went back into denial about how ill I was and subsequently suffered a number of major relapses. At the end of the course I had more symptoms and had to use more painkillers. My health has never even got back to my pre- CBT and GET level (using your scale I went from "moderate" to "severe").

My main psychological symptom, dealing with the massive frustration of this illness (which has robbed me of my career, friends, active lifestyle and more) was completely & unhelpfully ignored.”

Note: It was confirmed this is a correct report although respondent said the degree of severity of ME and symptoms did not alter after the course but the remarks indicate otherwise.

https://twitter.com/i/web/status/681619740893122561

 

[Tom Kindlon]

FWIW
CBT
Page 162

Not the most interesting but is an example of somebody who felt coerced into doing it

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

“The psychologist who delivered the CBT seemed disengaged. Privately, the OT in charge said the course wasn't intended for people like myself. My doctor and the consultant psychiatrist both said I do not have psychological issues and CBT would not be appropriate. I needed to attend the course in order to apply for ill-health retirement.”

 

[Tom Kindlon]

FWIW
CBT
Page 163

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

“The WORST and most damaging thing was disingenuousness. The pretence that she believed me fell to pieces when it became obvious that she did not. I think it incredible that this is precisely what the PACE Trial instructed its CBT therapists to do. It is in breach of the Declaration of Helsinki.”

 

[Tom Kindlon]

FWIW
CBT
Page 163

#760: ME severe before course, improved to moderate after course. Symptoms were the same after. Course not appropriate to needs.

“Mandatory to be assessed by a psychiatrist initially (1998) – condition of agreeing to CBT was taking SSRI fluoxitine. I refused as recent research had indicated this was of no value whatsoever, Psychiatrist unaware of this! Agreed to take Sertraline as alternative. No other help with any medication for pain etc. etc.

Completed the course as requested with great difficulty i.e. physically difficult getting there. Great mobility problems.

The psychologist admitted I knew more about ME/CFS than he did and there was nothing more they could do for me. No follow up. The graded exercise component was poor, badly constructed and made me much worse.”

 

[Tom Kindlon]

FWIW
CBT
Page 163-4
Not the most interesting but is an example of the "sleep hygiene" issue

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

“The CBT was completely useless as the OT seemed to think that we had an unlimited amount of money and kept on telling my Mum about expensive items we needed to buy such as an anti-glare screen for the television which we could not afford.

I actually got more depressed during the course and was unable to complete my sessions with the OT as she had very little idea of how ME affected me. She basically told me that since I slept for 10 hours throughout the day and during the night that I needed to go to sleep at 10pm every night and wake up at 8am so that I could stay awake all day. That is not possible for me as my sleep varies greatly and when I need to sleep I need to sleep and cannot stay awake.

I did not get on with her at all and could not complete the course because there was not another OT available in the County that I could see so I was discharged and have never received any more treatment.”

 

[Tom Kindlon]

CBT
Page 165

A good example of somebody reporting psychological harm I think

#866: ME severe before course, remained severe after course. Symptoms were the same after. Course not appropriate to needs. Part only attended. Reason given – it was too tiring.

“The course made me feel as if I was responsible for giving myself M.E and if I was the one stopping myself from getting better and recovering as if I was holding myself back in life. This made me feel more depressed and worthless in society because I was ill. I felt a failure because I could not make myself better with mind over matter.”

https://twitter.com/i/web/status/681626009678942208

 

[Tom Kindlon]

CBT
Page 166

Another example of people reporting psychological harm:

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

“A group session was not good as they had people who had minor ME, who exercised every day and who work. Then two people – me being one of them – who had severe ME. And were wheelchair and bed bound. We felt suicidal after being there.”

https://twitter.com/i/web/status/681939016023969792

 

[Tom Kindlon]

FWIW
CBT
Page 167

More psychological harm though no mention of suicide unlike last one.

#1036: ME very severe before course, remained very severe after course. Symptoms were somewhat worse after. Course not appropriate to needs. Part only attended. Reason given – I did not like the course.

“I felt even more frustrated that we were being told what to think-brainwashed into believing we are just lazy and this distressed me greatly-everyone in the group had varying degrees of disability and the 'support' should have been tailored to each individual – very disenchanted with the service – I was supposed to receive the second session of the CBT course as I said I couldn't go due to ill health – I am still waiting for the invite as promised me!!!Though I shan't be going!!!”

 

[Tom Kindlon]

FWIW
CBT
Page 167-8
More psychological harm though no mention of suicide previous one.

#1057: ME severe before course, remained severe after course. Symptoms were the same after. Course partly appropriate to needs.
“I felt like it put a psychological emphasis on my condition which made me feel responsible for my own fatigue and therefore had a negative effect on my self-image and self-esteem.

I have subsequently received a pacing/GET programme which has freed me from the feelings of guilt and shame that can be (mistakenly but nonetheless) associated with a psychological condition, particularly one which can appear to the outside world to be "put on".

The CBT forced me to spend a lot of time on introspective reflection which did not allow me to focus on the positives and push forward as best I could within my limits.

The long wait for treatment (over 9 months from initial referral) may also have limited my selfhealing as I felt that once I got the treatment they would do the right things when I felt I was probably doing all the wrong things which I later found out was not true.”

 

[Tom Kindlon]

CBT
Page 168

#1095: ME severe before course, remained severe after course. Symptoms were the same after. Course not appropriate to needs. Part only attended.

Extract: “My own view is that CBT, as it was delivered e.g. 'I collapsed after gardening last week' to be 'reconfigured' in one's mind as something like 'I worry about my symptoms and therefore this worry caused me to collapse after gardening last week', is total rubbish.”

https://twitter.com/i/web/status/681944426961342465

 

[Tom Kindlon]

FWIW
CBT
Page 168

#1104: ME very severe before course, remained very severe after course. Symptoms were the same after. Course not appropriate to needs.

“I was not listened to and it was just imposing on my personal affairs that had no relation to my illness.”

 

[Tom Kindlon]

FWIW
CBT
P168

#1143: ME severe before course, became very severe after course. Symptoms were very much worse after. Course not appropriate to needs. Part only attended. Reason given – it was not working.

“Complete waste of time, taught me nothing I wasn’t doing myself, relapse are totally physical/viral, flu like symptoms, etc. a silly guess only by medics who won’t research.”

 

[Tom Kindlon]

FWIW
CBT
P169

Includes psychological harm

#1208: ME severe before course, remained severe after course. Symptoms were very much worse after. Course not appropriate to needs.

“She outright told me that ME is classified as a mental health disorder. She had no conception of the physical symptoms and was focused only on psychological problems. She told me she had not trained in CBT. She suggested that I 'picture a blue bubble around myself' to lessen stress when talking to people I find stressful. She had me feeling the desk as a mindfulness exercise completely oblivious to the extent of the physical pain in my body and that feeling up her desk really wasn't going to do it for me. She wasn't even a good counsellor which is what she is trained in. She was lacking in empathy and care. She was unable to 'hear' what was said to her because she had already made assumptions about the symptoms and experiences someone with 'CFS' should be having.

Her preconceptions and rigid adherence to the CFS model training got in the way of her ability to interact in a humane way with me. I came away feeling let down, frustrated and traumatised by her. At the end of the sessions she wrote to my GP saying that I initially had severe malaise and pain but that I had improved as a result of seeing her. This was an outright lie!

She said that I still had 'flare-ups' – either she had misunderstood that my symptoms are constant and just fluctuate a bit or it was another lie!

I feel her letter could affect my benefits claim. She told me that she couldn't write in support of benefits claims because it is a 'conflict of interests'. When I asked her to elaborate on this she refused.

My encounter with her was entirely counter-productive and harmful to me both psychologically and physically.”

 

[Tom Kindlon]

FWIW
CBT
p170

Some psychological harm

#1220: ME severe before course, remained severe after course. Symptoms were somewhat worse after. Course not appropriate to needs.

“I found the two courses of CBT I tried (I tried a second as was desperate to succeed and become well) to be quite damaging psychologically as to make me doubt my own illness and severity. I still have problems with this today. In the end it had no positive effects on my illness. It felt like an attempt at brainwashing me into believing I had no illness.”

 

[halcyon]

My question is why are all these severe patients being given CBT when that's against NICE guidelines?

 

[Tom Kindlon]

CBT
P171

#1293: ME severe before course, remained severe after course. Symptoms were very much worse after. Course not appropriate to needs. Part only attended.

“I was only given one session of CBT as I was told I was 'not co-operating' because I refused to believe that it was all in my mind.

Just getting to the course left me completely exhausted and unable to communicate effectively or think straight, so the whole thing was a nightmare. The practitioner shouted at me in the end for not co-operating and I never went back to the hospital. It was a really horrible experience.

 

[Tom Kindlon]

CBT
P171

#1319: ME severe before course, became very severe after course. Symptoms were very much worse after. Course not appropriate to needs. Part only attended. Reason given – I did not like the course.

“It was institutionalised bullying. I felt ripped apart. Course introduced as supporting a physiological condition, but delivered to make us change our beliefs claiming this would make our symptoms disappear.

Belief and debate about the physiological reality of the disease was classed as proof of imbedded psychological error and obsession. Lies, deceit, passive aggressive techniques, psychological bullying, encouraging the group to single out, ignore or negatively judge members who held "beliefs" of physiological causation was the core of their approach.

I approached them with evidence and reports (Chief Medical Examiners, Gibson, etc.) which they had no knowledge of. Tried to engage them in intelligent discussion about causation, treatment and concerns and invited them to speak with the local ME support group – to all of which they had major psychological barriers!”

 

[Tom Kindlon]

CBT
P172-3

Last sentence mentions psychological harm

#1397: ME very severe before course, remained very severe after course. Symptoms were the same after. Course not appropriate to needs. Part only attended. Reason given – I did not like the course.

“The psychologist providing the CBT claimed that she had helped to rehabilitate someone who had suffered polyneuropathy (Guillain-Barre Syndrome), and seemed to think that my condition was similar.

I have severe orthostatic intolerance and struggle even to sit upright without tachycardia and severe fatigue afterwards (this symptom has been present from the very start of my illness before any deconditioning took place), something she did not seem to understand, rather believing that it was more to do with deconditioning and that would to respond to rehabilitation over time. I was really looking for help such that I could better cope with my symptoms (particularly pain and fatigue) that cause me a lot of distress, rather than to be rehabilitated. We were concerned at this, and we asked her to contact an ME/CFS specialist with whom we had consulted such that he could better explain my illness (the psychologist refused to do this).

The psychologists behaviour was questionable, at one point she suggested that I took on a sick role because it meant that I might receive more attention as a result, when in fact my partner has precious little time because of the demands of his employment, our own small business, and menial tasks around our home. The psychologist also seemed to think that if they could somehow convince me that all my symptoms were the result of deconditioning I could then blithely ignore my illness and begin rehabilitation.

For example, I also have sensitivity to light, the psychologist insisted that I have all the curtains in my room opened during the consultation, and then asked if I felt OK? I subsequently explained that it was uncomfortable, but the psychologist said that it would pass. What the psychologist was not there to see that evening (nor could believe or understand in the following week’s consultation) was the subsequent pay back in pain and fatigue that occurred that evening and persisted for the next few days.

So much of what the psychologist said seemed trite and hackneyed, like a more formal version of things we had heard when seeing unsympathetic physicians that did not specialise in psychology but would offer advice in this respect in spite of this. The psychologist also seemed to be more interested in pieces of paper (including a series of tick boxes) that they had in front of her, rather taking time to talk to me, listen to me, and understand my illness.

We ended the consultation after only 5 sessions as I was starting feel more stress as a result of them, and certainly did not feel any benefit.”

 

[Tom Kindlon]

CBT
p173

#1402: ME severe before course, remained severe after course. Symptoms were somewhat worse after. Course not appropriate to needs.

“Whilst my CBT practitioner was sympathetic and understanding, I feel that she was put under pressure from her employer to put the demands of my PHI insurer before my health. The whole focus was on getting me back to work, pushing myself and increasing my activity levels to facilitate a return to work. The result is that I crashed and suffered a relapse. I feel that the CBT practitioner's duty of care to the patient was severely compromised by the corporate machine.”

https://twitter.com/i/web/status/681969962425147393

 

[worldbackwards]

My question is why are all these severe patients being given CBT when that's against NICE guidelines?

I had GET before NICE. So little is known at a GP level that they'll throw you in for anything if they've heard it's good.