• Section 1: Introduction/Overview: Smoke and Mirrors
• Section 2: Recommended background reading
• Section 3: Research and articles which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the 'behavioural' paradigm of M.E. and the use of CBT and GET on M.E. patients
• Section 4: A summary of the available medical research
• Section 5: Patient accounts of CBT
• Section 6: Patient accounts of GET
• Section 7: Conclusion/Summary of key points Includes a Printer-friendly versions/Downloads section

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Name: Andrew Porter Country: UK [Online]

The use of CBT, also known as Reverse Therapy in the UK, was to increase my level of physical exercise, and reduce the amount of sleep I had. Sadly, this caused all my symptoms to intensify, hence I became depressed through feeling so ill. Consequently, I had to be treated for depression after giving up the CBT protocol.

The use of CBT in the UK is dominant in dealing with M.E. as psychiatric medicine dominates, just as happened with Multiple Sclerosis and even Asthma. Sadly, psychiatry dominates in the UK, especially as it makes it a lot cheaper for the National Health Service to remove patients from what would otherwise be difficult and expensive investigations and treatments.

Name: Mark* Country: UK

I became ill in February 1993, just a few days after receiving a tetanus booster. The original diagnosis (no one noticed the tetanus booster at the time, or if they did, they didn't mention it - and no one's mentioned it since) was "acute stress". To this was later added "anxiety" and "depression".

My GP recommended I take longer and longer walks every day. This I did - until I literally dropped. After a very worrying struggle to get home again I realised this was not such a good idea. I kept trying to exercise, however, and it made me worse and worse, till it got to the point where I had no choice in the matter any more: I was bedridden most of the time. When I *was* able to go out, I couldn't do so without using a walking stick.

I also received a series of counselling sessions. The relaxation and visualisation exercises were fine, but the attempts at juggling disorientated and exhausted me. I never did learn.

In 1995 I was persuaded that I should stop using my walking stick and "think positively" and not "buy into" my condition. I struggled for about two months, but eventually had to go back to using the stick, as not only was my balance dangerously bad, but also the sheer physical strain of trying to walk unaided was making me worse generally.

That year I also followed a course of CBT. It did help me come to terms with the fact that I might never be well enough to work again (not a joyous realisation at the age of 40) and helped me cope with my handicaps, but I also eventually noticed that I was overdoing things physically - because I was trying to ignore my limitations, of course. To me, that is the worst danger of CBT when it comes to illnesses like M.E.

A couple of years later I managed to get a prescription from my GP which allowed me to have a discount when paying for a block booking of sessions at the local Fitness Centre. The first stage of the regime was using a treadmill and exercise bike. Total disaster. I had to give up, it was making me so bad. (I lost my money, including what I paid for the compulsory trainers, which were no use to me otherwise!)

The routines I have been taught over the years by physiotherapists (who were cognisant with the effects of M.E.) have been useful - but these involve very gentle exercises and stretching - nothing like Graded Exercise.

I know from hard experience how damaging pushing oneself both mentally and physically can be. I still overdo things, because, when I'm "well" enough, I keep trying. I still hope that eventually it will help, but after 12 years, common sense tells me that this is wishful thinking.

Name: Simon*

I had 6 sessions of CBT, at the time I was severely affected by ME/CFS had difficulty walking and standing for any length of time. My local support group (Susssex ME/CFS Society) heavily promoted CBT as the answer to all our problems. I had to pay privately to see a psychologist £45 per hr and had to travel 25 miles each way. The journey was the worst part.

On the first visit the psychologist claimed he could put me right in about 6 sessions - he gave me false hope. By the end of the third session I was no better and was starting to the notice that the same ground was being covered in each session, we were going round in circles and getting nowhere.

By the final session we had both come to the conclusion that CBT wasn't going to make any difference, my psychologist decided it wasn't what I needed after all - shame it took nearly £300 to reach that conclusion. Interesting nearly every Dr I have seen since being ill isn't a great believer in CBT for CFS - so I don’t really understand why it is pushed so much.

Name: Clytie Country: Australia

CBT can be of enormous help to anyone suffering a long-term and profoundly disabling illness like ME/CFS. However, it's important to understand up front what it can't do. It can't change the physical realities in any way. The illness remains the same.

Name: Rose

My psychologist expected me to concentrate on talking to her for an hour after a long car journey. (I need to lie down for most of the day.) She clearly had no knowledge of M.E. (C.F.S.), & set me totally unrealistic tasks, then became cross because I hadn't done them. She told me that the pain didn't matter, it wouldn't harm me to complete her set tasks. It struck me that the money she was being paid (by the British national health) could have been much better spent on something helpful.

Name: Julia Country: UK

I had 10 (I think) sessions of CBT at Barts hospital a couple of years ago and am responding to your request for experiences of this. I had had ME nearly 15 years when I started the CBT, and felt strong enough mentally in myself to deal with any 'brain-washing' type stuff that might have come my way, and in fact there wasn’t really any of that. I took up the offer of CBT partly to see what all the controversy was about and I have to say I did not find it a bad experience, but rather irrelevant.

My CBT counsellor was a pleasant woman, and we spent quite a lot of the time talking about the very recent ending of my long-term relationship. Although I ended the relationship and so was not completely devastated, there were issues to clear up, and as my ex-partner was black and so was my counsellor, I found her perspective interesting. She did do some sort of psychological tests on me, but pronounced me 'normal' and then seemed not really to know quite what to do with me.

I can't say I got nothing out of the sessions, but what I got was very minimal and certainly did not improve my ME - which anyway I didn’t expect it would. Oftentimes any sense of support from the sessions was cancelled out by the exertion required to get to the hospital, of course! However, there was a small positive spin-off I think in that I was able to educate the counsellor about ME, recommending 'Stricken' and 'Shattered' for her to read. She was open-minded enough to respond positively, but unfortunately was only on a temporary contract, so if her perspective was changed by the reading it probably wont do PWME much good.

Name: Harmony58*

Good mental health is best for everyone including doctors and therapists. The problem with this particular therapy is that the premise doesn't work with organic disease since the assumption is that if you change your thinking you change what is happening to you. The problem is that you cannot think your way out of any organic disease, not even the heartbreak of psoriasis.

Attitude changes can work wonders for most of us, not just our teenagers, but it doesn't cure biological disease. There are many much less expensive therapies that are a great deal more effective in helping people to cope with this devastating illness.

Name: Jaomi

I was made to try cbt by my doctor who referred me to a clinic who apparently "specialised" in cfs and cbt. I didn't like the course because it was set around the idea of having 4 thirty minute rest breaks everyday for the rest of your life (that's what the course I went on was anyway). I couldn't see how that was supposed to improve my life in any way. I’m unable to work with my current symptoms, but if having these rest breaks, even if my symptoms improved, no employer is going to want someone who has to have 4 thirty minute rest breaks at the same times everyday no matter what. So I would be in a no better situation.

I also couldn't cope with the idea that the illness was caused by overactivity as it was described in the group sessions I went to. This seems to blame the ill person for causing the illness and I don't agree with that. None the less I tried to stick with the program but found it impossible. It’s impossible to be able to take a break at the exact same time everyday, four times a day, there are too many variables to everyday life. Such as if someone visits, or there's an emergency or if you have a child or anything. No healthy person needs this, neither do those with cfs, it just adds stress and removes hope indirectly by placing blame. I would not recommend it.

Name: Richard Country: UK

A parent's view - When my eldest daughter was finally diagnosed with ME (after 3 months of doubts and tests) we were given an appointment for what was planned to be the first of many CBT sessions.

I took my daughter along and we listened and the woman stared taking notes of my daughter's history - where she was born, what she did, what she liked, what her grandmother's name was, her grandfather etc. and started saying that she was looking also for any trauma which might have occurred. I listened and kept reasonably quiet, as I wanted my daughter (then 13) to explain.

This woman then asked to speak to my daughter alone.

We came away with a feeling that this was going nowhere.

I had already examined, with my wife, all of the past and tried to see what might have caused it, was there anything that had happened, or was happening, which might affect her health.

I look back now in amazement that I even countenanced any such session for what was and is a biological illness. But, and this is something I sometimes forget, I was a new parent of an young ME sufferer and I was going with what the hospital suggested - just following through and probably still dazed by all of this.

We didn't know about ME and we were looking for anything to help.

After coming away from that first meeting we discussed with my daughter we both agreed this was not what was needed. Apart from the exhaustion she experienced in travelling there and back she felt it achieved nothing.

After all, any person with a modicum of common sense is going to analyse the situation and look for possible causes and then methods on how to deal with it. We don't need another acronym to help cope. We can do that ourselves.

We didn't repeat that experience. It was totally useless from our point of view and I had doubts on the skills or qualifications of the person giving this.

Isn't it coincidental that when they ask for 'volunteers' for money-wasters such as the PACE trials in the UK the people they want are 'new ME patients'? I.e those who have so little knowledge about ME and are probably still reeling from the sudden and devastating onset of a strange illness.

The psychiatrists really know something about manipulation.

Name: Owen* Country: UK

Firstly, It took 8 months to be diagnosed with ME/CFS. I was given counselling which I could barely attend and spent some of my sessions lying on the carpet of the psychologists floor. I had lots of blood tests etc. I was told that people with depression have high cortisol levels, that’s funny I said, I barely have any. Anyway I had to attend just to get some sick pay from work. I was then reffered to Manchester and diagnosed with CFS, since then I have since I private doctor who says I have ME, not CFS, bloody confusing. Anyway I was given no decent advice and told I needed CBT/GET. I attended therapy and was told there was no way I could do GET. I had CBT instead, but it made me worse or no improvement, as I could barely speak. I consider CBT a waste of time for the patient and a waste of money for the NHS. It has not helped me/made me worse. I am bed bound/housebound under care of parents at 32 years old.

I would also like to say that on my health forms for insurance industry it was written anxiety/depression were objective symptoms chronic fatigue syndrome. Work that one out.

CBT/GET for ME patients is like giving psychological therapy to a cancer patient before they have had chemo.

Would it not be more appropriate to spend more money on providing care and medications to help recovery and then once better engage patient in neuropsychological therapy.

Name: Rob

The fact that people with CFS are referred for CBT, or any other kind of psychotherapy, as a treatment for their CFS makes as much sense as referring a diabetic. Yes, your way of thinking toward your illness can change, but I think the foremost reason people with CFS are referred for psychotherapy is the belief that it's all in the patient's head.

Comments from Greg Crowhurst of the 25% M.E. Group to the Gibson Enquiry; December 2005

• Page 2: Patient accounts of CBT (continued)
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• Page 6: M.E. patient surveys on CBT

• Page 1: Patient accounts of CBT