Ba Stafford explains some of the thinking that went into the survey questionnaire
The aim of CBT is to remove negative attitudes and improve the day-to-day functioning of people with both physical and psych-iatric illnesses. It involves addressing negative beliefs and actions that can affect physiological processes. In relation to ME, a course of CBT is often based on the idea that the illness is largely maintained by unhelpful psychological beliefs and behaviour.
GET is a form of planned exercise that aims for gradual, progressive increases in aerobic activities such as walking or swimming. It is based on the principle that a main factor maintaining the illness is inactivity, resulting in lack of fitness and stamina (ie de-conditioning). Gradual, ever increasing, exercise within the individual’s limits is thought also to help improve confidence in physical ability.
Pacing is an energy management strategy in which people with ME are encouraged to achieve an appropriate balance between activity and rest. The hypothesis is that, if people with ME use their energy wisely, then their limited energy willgradually increase. The aim is to prevent people entering a vicious circle of over-activity and setbacks (what is known as ‘boom and bust’).
But what does it all mean? I mean, in practical terms? That’s what we hope to find out.
Doing some background reading, I started with the sections about CBT, GET and Pacing in the January 2002 report to the Chief Medical Officer (‘the 2002 CMO report’) and the Department of Health’s (DOH) response to it. The report was not intended to be a comprehensive clinical guideline but it was a welcome start of a process of improving awareness and understanding that the DOH hoped would lead to improved diagnosis, management and treatment.
Two years ago, another MEA survey found that, while the vast majority of people found pacing to be helpful, or very helpful, significant numbers (see table below) reported that CBT was of no benefit and that GET made their condition worse.
The University of York’s list of trials relevant to ME/CFS (“The York trials”) dates back to 1994. It is dated 2006 and therefore notes the trials that the NICE Guidelines Committee would have looked at when making their guidelines. Out of the 16 that are described as ‘behavioural treatments’ trials listed, nine were on CBT and five were on GET. There were none on Pacing.
The NICE guidelines were issued in 2007.
That was followed up by AfME’s 2008 What Progress? survey of 2763 members which reported:
Then came our 2010 survey. That brought forth a sack full of heart-rending letters from people about the adverse or lack of effects of some therapy courses.
Janet Thomas was a trustee for a short time before her health forced her to retire and, with her husband David, had taken on the responsibility for that survey.
They still regret that they did not have time to reply to those letters individually – and writing that serves as a reminder to me to say to you – we have allowed a lot of space on the form itself for you to tell us what you think it would be helpful for us to know.
In early 2011 the results of the PACE trial came out. This was “a comparison of Adaptive Pacing Therapy (which, to my medically ignorant mind seems no different to Pacing), Cognitive Behavior Therapy, Graded Exercise Therapy, and Standardised Specialist Medical Care for chronic fatigue syndrome (the explanation of SSMC is easy to understand but, being irrelevant to this article, I won’t include it for lack of space).
We will be criticising that trial in our overall submission to the NICE guidelines review committee when we know the date of the review and so that is where our objections about it belong, not here.
Of interest here though are the PACE trails results for the three therapies:
As you can see, they are very different to the other survey results.
The 2002 CMO report, the AfME and MEA surveys and the PACE trial made it clear that someone should take things further and elicit some comprehensive and up-to-date evidence that could help to resolve uncertainty.
Meanwhile although, as a charity, we do not recommend any specific treatment for ME/CFS and will not until one has been researched through a trial and found to be beneficial, our best recommendation has been to go with Pacing – because surveys have indicated clearly that it has the most favourable results.
Pause for thought in Huddersfield
In October last year, The MEA was in Huddersfield with the Kirklees Independent ME Support Group at our annual medical conference. One of the panellists said that GET had aided her greatly.
Cross examination led to an assertion by another panel member that what she had actually been given was Pacing therapy under the guise of GET.
Maybe that was so – or maybe her GET therapist was a specialist ME GET practitioner who knew what was needed for her in terms of graded exercise and what else was needed to accompany it.
Whatever – it was agreed that the whole situation about the three therapies was a muddle which needed sorting. But for that meeting, the seeds of thought about this new survey may not have ripened.
On to December when a young relative, diagnosed last summer with ME, was sent on a CBT course.
To quote from her course notes: “Don’t use your body as a cue to guide your actions, instead stick to your structured plan of set activity no matter what symptoms you are feeling. Don’t see rest or avoiding activity as a safety net/cure; rest and avoidance does not reduce your symptoms and prevents the body building tolerance”
This doesn’t look like CBT to me – it looks like an inappropriate GET and very bad advice for a person with ME/CFS.
And so it became obvious that it is not just us who should be saying:‘But what does it all mean?’ It should be just about everybody.
How many different models are there for each of CBT, GET and Pacing for ME sufferers? What is it about all these models that is good, bad or indifferent – what do each of the therapies actually involve? Does CBT include an element of GET and Pacing? Does GET include an element of CBT and Pacing?
Does Pacing include an element of CBT and GET? And if not, should they? What specialist knowledge about ME do the practitioners have? Is it the failure of some of them to fully understand the nature of ME/CFS that leads to therapy failures?
What works well for people some people and possibly not others? How many courses are properly tailored in proper consultation with participants?
I could go on but you get the gist.
Hopefully this article will generate your enthusiasm to complete the survey form. And don’t forget to spread the word to people who no longer term themselves ‘sufferers of ME’ because the more people who can give us evidence, the more useful this survey will be.
I am going to email almost everyone I have in my contacts list as most of them will know at least one person with ME. Perhaps you would consider doing that?
More than a ‘chocolate teapot’ survey!
In July 2011 Dr Kristina Downing-Orr, Clinical Psychologist wrote in The Psychologist magazine: “CBT and GET are as useless as a chocolate teapot. In fact they cause more distress because clients are usually blamed and abandoned…. CBT cannot cure a broken leg and it won’t cure CFS”.
I quite fancied putting that somewhere in the announcement to the survey, partisan though it is, because the image is comic (though the subject matter is very serious) and I fancied this becoming known as The Chocolate Teapot Survey!
However, apart from the prejudicial view she takes, which is inappropriate to a survey questionnaire, I think we might find she is not correct
except that we do not expect a cure but an improvements of symptoms, albeit gradual (and she is right about the broken leg)!
I think we might find there is something in all three therapies – positive and negative – that could be made use of when it comes to making use of these approaches in everyone who comes under the ME/CFS umbrella.
Perhaps they already are if the right medical practitioners are involved? Perhaps some practitioners already borrow from the other therapies and make a better practice? Who knows yet – those are some of the many things we hope to find out.
What are our hopes and expectations for this survey? We hope that it will be well supported because the bigger it is, the more effective it will be. If all the ME charities and local support groups help to send it out, it should be.
We expect that it will bring forth some clear evidence and hope that in turn, that evidence will bring forth a good clear medical research project and funding for it. We expect that, even before that research, people will be given a clearer picture and hope that it will help them to cope better with their illness.
We hope any lack of expertise among practitioners is addressed. We hope shortage of practitioners is addressed. We hope that the NICE guidelines review committee find the report useful because it is clear that survey evidence is very important to NICE guideline committees.
Acknowledgements
Former MEA trustee Janet Thomas and her husband David have been a huge help – giving me the benefit of the knowledge and experience they gained from our 2010 Illness Management Survey and suggesting questions.
I have had help from the ever-patient and knowledgeable Dr Charles Shepherd.
Professor Derek Pheby (Project Co-ordinator of the National ME Observatory) appraised our draft.
Liz Lipscomb of Vantage Point Research (www.vantagepoint research.co.uk) set the survey up – designing the forms, making sure the questions all worked, and putting the survey up on the computer. Liz has huge research expertisein this area and has given us the benefit of it.
Gill Briody, in the office, helped with the logistics of getting out the paper survey forms.
I could not have done this without any of them.
Finally – I stress that this is a totally impartial survey. There is no point in having one that is anything else.