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

Tom Kindlon

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Page 104


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

“Whilst I have some faith in the concept behind the programme I am fearful of being completely honest with my practitioner as he remains extremely critical of anything short of absolute progression and success and strongly and brusquely implies that it is entirely my fault if only little or no progress is made between sessions.

I feel like a failure and that it is my fault that I am still suffering with ME symptoms and not fully well and back in work. My GP is extremely supportive and encouraging but has nowhere else to refer me if I am dismissed from this course, so I carry on despite feeling remorselessly dejected with every visit.”
 

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CBT. Page 104


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

I was told that my illness could be cured by positively thinking that I was not ill and I should use meditation and stress/anxiety relieving techniques to control my symptoms and carry on with work and normal activities as much as possible. I had to say to myself "I am not ill, this is just a passing phase, keep going, these symptoms are due to my thoughts, relax".

I was told that when I was not improving, but getting worse it was because I was not doing the relaxation exercises properly, or was not trying to tell myself that it was all in my mind. In other words it was my fault I was feeling so ill. Consequently I tried so hard to work and carry on that I eventually collapsed and was bed bound for over a year and so distressed because I thought it was all my fault and I must be mentally ill.”
 

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CBT. Page 105
Person talks about it is difficult to do spontaneous activity with the regimes. Also difficult if live on own.


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

“I found the people who ran the course were very caring, and sympathetic, and they made it clear that they did not wish to force or persuade me to participate in the course if I felt it didn't suit me. I was made to feel that I was completely free to participate or drop out of the course at any time, without prejudicing my wider treatment.

The people who ran the course did not seem to be able to adapt the course to my specific life-style when I explained to them that it didn't suit my lifestyle. The expectation of the course was that I would plan all of my activities extremely carefully and methodically.

I could not see how this could practically fit in with anybody's life-styles, and particularly mine. For example, according to the methods we were expected to employ, if I had already carried out a particular day's prescribed activity, then I could not carry out any spontaneous activities, such as going out to buy a pint of milk, or having an unplanned meeting with a friend. The method was completely impractical, especially for someone who lives on their own, and for someone who doesn't like to plan their lives carefully in advance.

I explained this to the people who ran the course, and they were sympathetic but unable to explain how the therapy was practical or helpful.”
 

Tom Kindlon

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Down as an improvement but looks like the therapy gave the person false confidence/over-confidence which led to a deterioration in the long-term

CBT (Page 106)

#422: ME moderate before course, became mild after course. Symptoms were somewhat better after. Course appropriate to needs.

“Course was excellent, practitioner excellent, very interesting and knowledgeable. Improvement was significant at time of course but when tried to return to work, my condition deteriorated and I became worse than ever and developed fibromyalgia too.”
 

Sean

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I did however find that reflecting on the psychological aspects of the course was worthwhile and is helping me to live with my condition. The CBT component of the course emphasised this at the outset and did not promise any potential improvement in pain and fatigue.
WTF? o_O
 

Tom Kindlon

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Counted as no change but he/she says
I believe pushing myself to meet the targets set each time, ultimately made me worse and developed within me a deep sense of mistrust and disillusionment
CBT page 108

#475: ME moderate before course, remained moderate after course. Symptoms were the same after. Does not say whether or not course appropriate to needs.

Extract:
“The 'specialist' seemed very biased and unprofessional, at one point he even rolled his eyes when referring (sarcastically) to people who are bed bound. He actually stated at our first session that he guaranteed he would make me better if I promised to do what he said and stop reading books or the internet and not be part of any support groups.

He was paid via the health insurance I had through work. When I eventually lost my job (and therefore my health insurance) he dropped me like a ton of bricks and offered me no further assistance, saying I had already had more sessions than I would have got on the NHS and his advice was that if I intended to get any further help from the NHS that I should 'lay it on thick' with regards to the psychological effects or I would get someone straight out of university.

My whole experience was appalling and he got paid £150 per session via my insurance. I believe pushing myself to meet the targets set each time, ultimately made me worse and developed within me a deep sense of mistrust and disillusionment.“
 

Tom Kindlon

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FWIW, CBT pages 108-9
Example of psychologisation among other things:


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

Extract: “I was happy with the point I had reached in my life, but there was some effort especially by the psychiatrist who assessed me to persuade me 'I was suffering from depression or anxiety'. The counsellor interfered in all areas of my life (including those going well) in an unhelpful way.

There was no consideration as to whether I was well enough to attend the hospital or do the sessions or the work between the sessions. When I told them the sessions had interfered with my ability to do my job there was no suggestion that they would stop the sessions.

When the counsellor caused me distress (by trying to get me to change travel plans) and I reported this back to her at the next session, she said any distress she caused was my problem (and continued to cause me distress right up to the last session).

When I said I had mobility problems and would a wheelchair be helpful (also so I could use my limited energy properly) she felt this was an example of 'hysterical conversion'.

There was at all times attempts to fit the problems to psychiatric illness. I was also accused of somatising my symptoms, however I was subsequently diagnosed with other physical health problems which needed treatment/operations and a lot of the symptoms I complained about turned out to have a physical basis not a somatic one.”
 

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CBT Page 111

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

“The course was well organised but it is not appropriate for people with ME/CFS given the effort involved attending the course which for me had a severe detrimental effect.

I now believe that ME/CFS sufferers are the most motivated group of people and this is the problem. This type of approach means they will do their very utmost to participate but sadly and ironically this is the very thing that makes them worse. That is what happened to me and I am a trained nurse and understood all the theory which is presented well, however hard it is for me to believe as a medical person, it is without doubt harmful.

It is like making a cancer patient travel to 12 sessions to enable them to 'manage' their cancer. It is wrong, inappropriate, dangerous and resulted in me losing career and any previous function I had.

I was so so grateful to have been accepted on the course, so ridiculously relieved that someone was taking this seriously I wept with joy and hope. They tell you to only do five minutes at a time but expect you to travel to and attend a long course.

It used to take me all day to get there and back on two buses because I could no longer drive. In the end it is accepting the ambiguity of the disease that is the key and continuing research in the meantime. As humans both patients and doctors struggle with ambiguity.”
 

Tom Kindlon

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Page 111


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

“The therapist(s) were hostile to the idea that I had a physical illness.”[/QUOTE]
 

Tom Kindlon

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Page 112

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

“Far too exhausting, to me it's not a suitable treatment for M.E. I am on more medication after the course for pain etc. The course caused more stress and anxiety which I was unable to cope with.”
 

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Page 112

#584: ME mild before course, became moderate after course. Symptoms were somewhat worse after. Course not appropriate to needs. Part only attended. Reason given – it was not working

“Sorry but negative view. Endless talking, very slow, and often just stating common sense management strategies which I'd worked out myself in order to cope with day to day life. No use, just very patronising and frustrating...a bit harsh but true.”
 

Tom Kindlon

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The ME Association say CBT could be useful for psychological problems or coping (can't remember exactly what they said) but plenty of complaints about the effects in this domain also.

For example:

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CBT
Page 112

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

“Even though I accept that I have some mental health problems, the course was insensitive, humiliating and hugely damaging to my situation. I have never recovered from the damage that this, and later, ill-judged therapies inflicted.”
 

Tom Kindlon

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Page 114

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

Felt very pressured into being "well" that I should be able to make myself well enough to be back in school by sleeping at proper times and exercising.

At the end felt hostility towards the therapist as I felt she didn't listen to what I was saying and didn't feel she understood (although she was a pleasant and nice enough woman). I think she believed so strongly that it was a psychological illness (even though she found me to be well adjusted and not show any signs of depression or being a "school avoider" etc. to back up her theory).

She signed me off and wished me well and said she wasn't able to make me well. We left it that. I believe it is a physical illness which causes psychological effects due to the changes it creates in your life, and she felt it was a psychological illness which created physical manifestations of symptoms. So in the end we agreed to disagree but in good terms.”
 

Tom Kindlon

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Page 114

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

“The course practitioner didn’t understand ME at all. Her suggestion that ME was "part physical part psychological" was an attempt to brainwash me into believing that I could think myself better. The practitioner expected improvement in my symptoms just because I was "thinking differently" and pressure was placed on me to claim that they were improved when they were not.”
 

Tom Kindlon

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Talks about the practical problems for a single parent to do the course and follow the advice

CBT
Page 114-5



#694: ME moderate before course, remained moderate after course. Symptoms were the same after. Course not appropriate to needs. Part only attended. Reason given – the course was cancelled.

“Although it was called CBT he seemed more keen to get me to do breathing and relaxation techniques than talking. He seemed to think this was how I would recover.

I was stressed out at being ill but understandably because I have a child to care for too. I found a lot of things he suggested completely impractical because when you're a mum you can't just have six weeks off, or do half an hour of activity and then shut yourself away in a back room to meditate for an hour.

I felt they didn't try to understand me, he said he was there to look after my needs not those of my son, but didn't seem to understand I was a struggling single mum.

In the end they cancelled my sessions. I missed one session because my son was off school sick and I left about 6 messages on their phone for another appointment but I just got a letter saying I'd been discharged back to my GP.”
 
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The ME Association say CBT could be useful for psychological problems or coping (can't remember exactly what they said) but plenty of complaints about the effects in this domain also.

For example:

FWIW
CBT
Page 112

Hi Tom

These are the recommendations relating to CBT, GET and Pacing that are presented in the Executive Summary of our report:

RECOMMENDATIONS
Our part 1 recommendations are based on the full results from our survey in respect of the three main therapeutic approaches to illness management, and are as follows:

Cognitive Behavioural Therapy (CBT)

We conclude that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS.

CBT courses, based on the model that abnormal beliefs and behaviours are responsible for maintaining the illness, have no role to play in the management of ME/CFS and increase the risk of symptoms becoming worse.

The belief of some CBT practitioners that ME/CFS is a psychological illness was the main factor which led to less symptoms improving, less courses being appropriate to needs, more symptoms becoming worse and more courses being seen as inappropriate.

Our results indicate that graded exercise therapy should form no part of any activity management advice employed in the delivery of CBT, as this also led to a negative impact on outcomes.

There is a clear need for better training among practitioners. The data indicates that deemed lack of knowledge and experience had a direct effect on outcomes and remained a key factor even where courses were held in specialist clinics or otherwise given by therapists with an ME/CFS specialism.

However, our results did indicate that when used appropriately the practical coping component of CBT can have a positive effect in helping some patients come to terms with their diagnosis and adapt their lives to best accommodate it.

CBT was also seen to have a positive effect in helping some patients deal with comorbid issues – anxiety, depression, stress – which may occur at any time for someone with a long-term disabling illness.

An appropriate model of CBT – one that helps patients learn practical coping skills and/or manage co-morbid issues such as those listed above – could be employed, where appropriate, for ME/CFS as it is for other chronic physical illnesses such as multiple sclerosis, Parkinson’s disease, cancer, heart disease, and arthritis etc.; and we recommend all patients should have access to such courses as well as access to follow-up courses and/or consultations as and when required.

Graded Exercise Therapy (GET)

We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.

One of the main factors that led to patients reporting that GET was inappropriate was the very nature of GET itself, especially when it was used on the basis that there is no underlying physical cause for their symptoms, and that patients are basically ill because of inactivity and deconditioning.

A significant number of patients had been given advice on exercise and activity management that was judged harmful with symptoms having become worse or much worse and leading to relapse.

And it is worth noting that, despite current NICE recommendations, a significant number of severe-to-very severe patients were recommended GET by practitioners and/or had taken part in GET courses.

The other major factor contributing to poor outcomes was the incorrect belief held by some practitioners that ME/CFS is a psychological condition leading to erroneous advice that exercise could overcome the illness if only patients would ‘push through’ worsening symptoms.

We recognise that it is impossible for all treatments for a disease to be free from side-effects but, if GET was a licensed medication, we believe the number of people reporting significant adverse effects would lead to a review of its use by regulatory authorities.

As a physical exercise-based therapy, GET may be of benefit to a sub-group who come under the ME/CFS umbrella and are able to tolerate regular and progressive increases in some form of aerobic activity, irrespective of their symptoms. However, identifying a patient who could come within that sub-group is problematic and is not possible at present.

Some patients indicated that they had been on a course which had a gentle approach of graded activity rather than a more robust and structured approach of graded physical exercise. There were some reports that patients were told they should not exercise when they felt too unwell to do so. These led, for some, to an improvement in symptoms or to symptoms remaining unaffected.

However, we conclude that GET, as it is currently being delivered, cannot be regarded as a safe and effective form of treatment for the majority of people with ME/CFS. The fact that many people, including those who consider themselves severely affected, are being referred to specialist services for an intervention that makes them either worse or much worse is clearly unacceptable and in many cases dangerous.

GET should therefore be withdrawn by NICE and from NHS specialist services as a ‘one size fits all’ recommended treatment with immediate effect for everyone who has a diagnosis of ME/CFS. This advice should remain until there are reliable methods for determining which people who come under the ME/CFS umbrella are likely to find that GET is a safe and effective form of management.

Pacing

Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme.

The benefit of Pacing may relate to helping people cope and adapt to their illness rather than contributing to a significant improvement in functional status. Learning coping strategies can help make courses more appropriate to needs even if they do not lead to immediate or even longer term improvement in symptoms.

For some, improvement may be a slow process so, whilst they may be somewhat better by the end of the course, the improvement is not enough to take them into a better category of severity for some time, perhaps not until they have self-managed their illness for a few years.

Pacing can be just as applicable to someone who is severely affected, as to someone who is mildly or moderately affected, although additional measures need to be taken to ensure that a person who is severely affected has equal access to services.

However, proposed increases in activity, both mental and physical, must be gradual, flexible and individually tailored to a patient’s ability and circumstance, and not progressively increased regardless of how the patient is responding.

There must be better training for practitioners who are to deliver such management courses and all patients should have access to suitable courses, follow-up courses and/or consultations as and when required.
 

Tom Kindlon

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Here's the quantitative data regarding CBT and mental health. I don't find the case to recommend CBT for anxiety, depression and stress that convincing. If you give lots of things, one might find people saying it helped their anxiety, stress and depression a little. Also if one looks just at people who have depression, anxiety and stress at the stress, there can be a regression-to-the-mean type effect (i.e. improvements might just be due to the passage of time and looking at people who qualify at a particular moment in time)
Effect on Mental Health and ME-CFS Symptoms CBT.png
 
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Tom Kindlon

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Page 117-118

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

It was clear that the course leaders considered we were mentally ill and had "abnormal illness beliefs". The course encouraged us to IGNORE and PLAY DOWN distressing physical symptoms, particularly pain and exhaustion, and they kept stressing that what we were experiencing was normal aches and pains and tiredness.

The course leaders took pains to come across as friendly and nice but frequently made inappropriate remarks. The course encouraged me to push beyond my boundaries and I got significantly worse following the course. I then immediately stopped CBT/GET.

The CBT had no effect at all as I realised that the intention of it was to try and make me believe I was not ill. That, together with the fact that I realised at that point that I would get no medical help whatsoever from the NHS, made me more depressed and anxious than I had been before the course! The course led to a significant worsening of the illness.”
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FWIW
CBT
Page 118

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

“I undertook this course a long time ago (2005). At the time I didn't know much about CBT but I had heard it might be helpful and I felt I had reached a plateau in terms of recovery and was desperate to move forward/progress. It was me who went to GP and persisted in asking him if I could attend. He didn't know much about it either.

I attended the sessions and they were useless. It took a great deal of effort for me to continue going there (even though it’s only 10 minute drive to venue) and the counsellor seemed to have very little real understanding of M.E.

Afterwards I felt no better and the ways in which I had learnt to manage my condition (on my own) seemed to be all put into question. The whole thing made me unsure and I felt no better. It made me feel insecure and as if here was another thing I'd tried and failed at. I wish I had never gone and not persisted in pestering the GP.”
 
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Tom Kindlon

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Page 118

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

X clinic programme had very negative effect as I felt inadequate for not getting better.... "continuing to feel ill after illness was over. It is your body playing tricks because your mind still believes you are ill".”
 

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Page 118

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

The overall effect of the CBT course was to increase my illness. It was not appropriate to my needs, it drained my time and energy, and the extra exertion over 12 weeks triggered symptom flares and a worsening of the illness from which I have never improved.

It would be better if the medical and psychiatric professions would recognise that ME is not appropriately treated with CBT and that the additional activity of completing such a course only causes symptom flares and worsening of illness.

Requiring ME patients to try CBT is like requiring cancer patients to smoke. We already know that exertion, whether mental, physical or emotional, worsens ME symptoms. CBT and GET are therefore contra-indicated.”