ME Association comments on today’s news reports about the online CBT Trial for children | 1 November 2016

November 1, 2016


The ME Association position on CBT, GET and Pacing is made very clear in the summary of the MEA ‘patient evidence' report on CBT, GET and Pacing:

www.meassociation.org.uk/how-you-can-help/introduction-to-our-cbt-get-and-pacing-report/

In particular, in relation to GET, we have stated that NICE should withdraw their recommendation that everyone with mild to moderate ME/CFS should be offered GET.

We also believe that there should not be any further clinical trials of this type of activity management while patient evidence consistently indicates that over 50% of people with ME/CFS (including children and adolescents in the MEA report) report that GET has made their condition worse.

As noted in all the BBC press reports this morning, appropriate management of sleep, pain and activity (in the form of pacing – as was referred to by the young person who was interviewed for the BBC Radio 4 Today programme) are three key aspects of ME/CFS management.

And when done properly, these can all can be important factors in aiding any natural improvement to take place.

But they are not ‘cures' for ME/CFS and do not help everyone to improve.


SOME PEOPLE DO FIND CBT HELPFUL, BUT…


As noted in the results and recommendations section in the MEA report, some people with ME/CFS do find CBT helpful when it consists of a package that helps people to cope with living with the emotional consequences of a debilitating illness like ME/CFS and includes sensible, pragmatic advice and information on activity, pain and sleep management (as some courses of CBT do).

But we do not believe that CBT, which is based on a flawed model of causation involving abnormal illness beliefs and behaviour, has any role to play in the management of ME/CFS.

And we would not approve of any research involving CBT that wanted to try and support this psychosocial model of causation.


THE UNACCEPTABLE FACE OF ME/CFS NEWS COVERAGE


Finally, to return to the BBC press coverage this morning, whilst it was encouraging to note that while it was being stressed on several occasions that ME/CFS has a biological basis/cause, it was completely unacceptable to then find that news bulletin coverage on BBC Radio 2 was then referring to an illness that caused children to miss school and have mental health problems.

Dr Charles Shepherd
Hon Medical Adviser
ME Association.


CONCLUSIONS AND RECOMMENDATIONS FROM THE MEA REPORT


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 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 elsewhere 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 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 becoming 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 worsening symptoms 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’.

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 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 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 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.

For some, improvement may be a slow process so, whilst they may be somewhat better by the end of a 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.

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. Importantly, it can prevent symptoms from becoming worse.

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.

As with CBT, there must be better training for practitioners who are to deliver such management courses. 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 and therapists must be taught to recognise that.

All patients should have access to suitable courses, follow-up courses and/or consultations as and when required.

Note: Please see Sections 4 and 5 for our full conclusions and recommendations. Caveats are set out in Section 6.

6 thoughts on “ME Association comments on today’s news reports about the online CBT Trial for children | 1 November 2016”

  1. Define psychosocial. I nitpick but I am an equal opportunities nitpicker. If something is wrong, it’s wrong, irrespective of whether I like the people. If I am asked about this, I will flag up this example of a reluctance to learn top notch psychological medicine. You need more expertise re psychological interventions. One thing I know: the fear-avoidance theory behind CBT has little social in it. (The operant conditioning theory that underpins GET does but people have stopped noting the conditioning element of GET. Still I’d class the theory behind GET as purely psychological).

    Perhaps this unwillingness to pay attention to detail is one factor why we are having such great problems challenging the CBT/GET approach in the UK. In the USA, patients are protected by Jason and Friedberg and groups as well as specialists listen. Here, I see evidence that groups are still happy to ‘make things up’ or rely on dodgy sources. Nothing will improve until this attitude changes. Get great info and arguments. Most of the above is fine but it lacks the wow factor. You have to show journos that you know your stuff and you’re not doing that. Forget surveys. Try science. My article provides heaps of arguments against GET including stats, as published in the Lancet. Always better than a survey.

    I wonder who, eventually, you will listen to? A male prof, white?

  2. I have had CFS/ME for ten years. I am also a Dr of Psychology and charted scientist. I can say without doubt the illness that I have is not psychological. Most of my symptoms lead me to believe my illness is neurological. I speak of my illness because I am aware of differences between CFS/ME patients. I have to be honest and say that pacing and GET have helped me. Short duration low intensity exercise is a lifeline for me. Whilst it does provoke my symptoms, in the long run I gain more than I lose in terms of energy and sense of control. I am currently off work following a major relapse but I am slowly improving. I have mild to moderate symptoms. I have real concerns about the approach mentioned in BBC news today. This is treating the symptoms..it is not a cure. Funding research that provides a better understanding of CFS/ME and then develops treatments on that basis would be more appropriate. I am not fully convinced about the role of sleep. I can have a great nights sleep and still feel like my body is a dead-weight the next day. It doesnt correlate with me at least. Recently I have slept poorly but actually managed to have some good days afterwards. Do we really fully understand what is going on beneath the surface? We cannot hope to cure an illness when we still don’t know enough about it. Just feel that the wrong people are getting research grants.

    1. I entirely agree with what you (Dr C) say. I have had CFS for 15 years and I have tried various approaches. I concluded that the condition is probably physiological and the psychological aspect is a result of the physical and cognitive symptoms, i.e., one gets depressed about not being able to do what one wants to do. What is not mentioned is the co-morbid chronic muscle and joint pain that necessitates constant use of strong pain-killers (Pragabalin and Codein, in my case). Short duration low intensity exercise is a lifeline for me as well and I now adopt a boom and bust approach to activity as this is better than a constant state of light activity and a feeling of not being able to achieve anything of consequence. For example, I used to enjoy mountain biking but had to give that up but I now have an electric mountain bike that I cane ride when I feel good, without having to return home after 5 minutes. We do not understand what is going on and too many people are researching ways to manage symptoms instead of identifying cause… the wrong people ARE probably getting the grants!

  3. Thanks for the response to the media Dr Shepherd.

    I’ve commented at the end of the other article on this site. In addition – the young person interviewed did in fact only use the word ‘pacing’ at the end of her interview, and talked about the activity, and physio in the approach she received. The difference I don’t think would come across to listeners. Dr E.C. describes their approach to patients as an “increasing programme” of activity management, the aim is for increasing “red activity” by “10% each week.

    management

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