Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up.
Clin Rheumatol. 2011 Jan 15. [Epub ahead of print]
Núñez M, Fernández-Solà J, Nuñez E, Fernández-Huerta JM, Godás-Sieso T, Gomez-Gil E.
Rheumatology Service, Functional Readaptation Unit, Hospital Clinic, Barcelona, Spain, mnunez@….
Abstract
Chronic fatigue syndrome (CFS) produces physical and neurocognitive disability that significantly affects health-related quality of life (HRQL). Multidisciplinary treatment combining graded exercise therapy (GET) cognitive behavioural therapy (CBT) and pharmacological treatment has shown only short-term improvements. To compare the effects on HRQL of (1) multidisciplinary treatment combining CBT, GET, and pharmacological treatment, and (2) usual treatment (exercise counselling and pharmacological treatment) at 12 months of follow-up. Prospective, randomized controlled trial with a follow-up of 12 months after the end of treatment. Patients consecutively diagnosed with CFS (Fukuda criteria) were randomly assigned to intervention (n = 60) or usual treatment (n = 60) groups. HRQL was assessed at baseline and 12 months by the Medical Outcomes Study Short-Form questionnaire (SF-36). Secondary outcomes included functional capacity for activities of daily living measured by the Stanford Health Assessment Questionnaire (HAQ) and comorbidities. At baseline, the two groups were similar, except for lower SF-36 emotional role scores in the intervention group. At 12 months, the intervention did not improve HRQL scores, with worse SF-36 physical function and bodily pain scores in the intervention group. Multidisciplinary treatment was not superior to usual treatment at 12 months in terms of HRQL. The possible benefits of GET as part of multidisciplinary treatment for CFS should be assessed on an individual patient basis.
Not surprising.
I attended a similar sort of group in England, and while I was grateful for their efforts, something just wasn’t quite right.
The approach to the illness is often to quick come up with a new set of goals. What I noticed in my conversations with the other group members, is that perhaps a little more focus on coming to terms with the emotional implications of the condition is more desirable than jumping straight into goals.
For example, a lot of people who have M.E are slow to accept they even have the condition and when people accuse them of just needing to try harder and things being in their head, they actually hope that is the case.
Often when you come to accept something isn’t quite right and seek more medical help, you will be at a low point having consistently retreated on goals and aspirations – in essence riding a wave of failure – one that you may feel deeply responsible for.
I think before M.E patients are handed a new list of goals, confidence needs to be built from the ground up and in my experience these services are far too focused on getting tangible results to satisfy performance surveys.
A lot of younger people with M.E can become subjugated somewhat by older family members who fail to endorse their condition. Some patients need help to become confident enough to face such misdirected criticism to create a home atmosphere that is even conducive to improving their health through careful pacing and lifestyle changes.
The people running these courses are quick to point out that M.E sufferers need to cut back on stress but conversely spend far too little time working on the sources of such stress.
Ultimately, it felt like the people in my group, myself included, were all wearing masks trying to show how good we were at fighting the illness. Masks that did slip from time to time.
The real problem might just be that, very few Drs seem to be able fully empathise with the nature of the illness. Since they lack experience of the condition, they are unable to identify the necessary psychological hurdles M,E patients need to face.
There are many conditions that reduce quality of life that need a form of bereavement counselling to help sufferers come to terms with their limitations.
M.E is treated differently in that we are rushed to the ‘getting better’ stage which as this study demonstrates, simply isn’t working out for everyone. Also M.E presents different psychological implications due to the scrutiny and disbelief sufferers are faced with.
In many cases people don’t just have their quality of life destroyed, they are ostracised to boot.
I agree with your comments Matt and my own experiences would endorse yours I feel.
There is a feeling among those directly delivering these ‘techniques and/or therapies’ that it is the ‘only’ way and that said methods will somehow transport us back to health.
It is I feel a ‘fault’ in the delivery and in the belief. These are ‘management’ techniques only. They can help – see MEA Survey re GET specifically – some sufferers and they can worsen symptoms for others.
My great fear is that inpartiality has been eroded by the practices you describe. This is not true in every case but things have to be more realistic. And a personal assessment MUST take place before any GET for example is entertained.
Let’s move away from the ‘pro-forma’ advice and approach.
There is no treatment for CFS. Until there is techniques like CBT and GET – while useful – need to be ‘marketed’ and ‘delivered’ realistically.
My other fear is that now CBT and GET are seen by some sufferers as the ONLY thing available to them from the NHS. You might agree. I do not. But that is the impression and again it is wrong.
Having said all that. Until such time as those diagnosed with ME or CFS or ME/CFS or whatever the ‘label’ – can be specfically divided and treated through proper research then the NHS has very few options.
What it can do though is do it better.
For my benefit, and perhaps the benefit of others reading, what other treatments have been made available?
In my case I’ve had a course of B12 Injections (Since I had no positive effect during the initial 10 injections, I suspended the course as apparently it’s sort of hard to come by for sufferers of other conditions).
Also I was once referred to the London Homoeopathic Hospital (A subject I knew little about, but at the time I was at the ‘try anything’ stage).
I did a course of CBT in around 2003, a one on one course, but subsequently relapsed about a month afterwards. The opinion I formed about CBT is that I found it useful as therapy as I was able to talk about a lot of the difficulties I was facing, but terrible physically.
Matt.
Did you receive B12 injections on the NHS?
And if so was it specifically because you were deficient in that area or because you ‘had ME/CFS’?
I am interested to learn just how different are the approaches of NHS GP’s.
Personally I have been declined ‘treatment’ through B12 injections on the NHS repeatedly. And for ‘good reasons’ I believe.
Such a struggle ‘consistency’ is it not?
When a person is able to accept the disease and manage their health well, what is left? How do they intend to tackle the actual disease? And when will the form of CBT offered be the same as for cancer or MS? Do you think people with those diseases would accept being told there is nothing wrong. Isn’t it time for these medics to accept what ME is, and that it isn’t caused by aberrant beliefs? This prejudice and discrimination must end.
JT while I can’t agree with your comment about being told ‘there is nothing wrong’ as it hasn’t happened to me personally through the NHS – I do think we are of similar feeling on this one.
See my thoughts above.
We are.
I should add that they don’t always tell you they ‘believe’ there is nothing wrong. As evidenced by the PACE trial. Nice to know lying and manipulation is acceptable because we have this disease.