Ellen Goudsmit, psychologist:
As a patient with a progressive form of myalgic encephalomyelitis (ME), a psychologist who trained in Clinical as well as Health Psychology and a specialist in ME and chronic fatigue syndrome (CFS), I consider that I may have a useful contribution to make in the debate about the needs of people with fatigue syndromes and the treatments mentioned by Santhouse et al. I am in the unhappy position of being familiar with both sides of the couch, as it were. For the record, I differentiate between ME and CFS because the assumption of equivalence has not been tested and I don't recognise myself in many descriptions of CFS.
As Sandhouse et al suggested, people with ME and CFS need better access to specialist clinics. As things stand, too many patients are left to cope on their own and even the most sympathetic GP is limited in what he or she can offer, courtesy of NICE.
What patients, groups and professionals like myself have been arguing for years is that CBT and the other approaches noted by Sandhouse et al are neither appropriate nor particularly helpful for everyone with fatigue syndromes. However, the article illustrates that we're simply not believed.
As a psychologist, I recognise that CBT and GET can alleviate fatigue and that many patients feel better, if only for a few months. However, I submit that too many commentators have overlooked the methodological flaws in the various trials and that they have overstated the results. For example, a recent review supports an earlier meta-analysis that effect sizes tend to be modest (1). Moreover, there are doubts about the value of the different elements within the interventions, e.g. CBT may help simply because it provides support and an opportunity to vent our frustration (2). Similarly, research using objective measures have shown that improvements following CBT can not be attributed to increases in activity (3). So why continue to include it and risk a relapse?
There are also other arguments that we need more flexible and individualized programmes. For instance, there is no evidence as yet that CBT and/or GET help those of us with neurological symptoms like muscle weakness, vertigo and visual disturbances. As for the tendency for some of us to develop multiple sensitivities to chemicals and foods, it's disabling and extremely depressing but often psychologised, trivialised and ignored.
There is now enough evidence for therapeutic options which are as effective as CBT and GET, but more acceptable (4,5). However, NICE misclassified them under the wrong headings so didn't realise that there were alternatives and those of us who alerted them to the problem were dismissed.
In terms of my own experience, I know that things can get worse. Some of my friends are more disabled than me; they too have tried all the therapies offered by their consultants, but these have not halted the progession of their disease and some are now barely able to eat a normal diet. We're all living on hope and it's hard.
Articles like those by Sandhouse et al reinforce the impression that editors and researchers are keen to lump everyone with fatigue together because it's neat and tidy. We're human, we dislike complexity and we prefer simple solutions. CBT and GET seem to solve a lot of problems but they rely on the asssumption that any differences within the CFS population are of no clinical significance. They depend on the concept of CFS as an entity with no ongoing pathology such as infection.
They are perpetuated by discussions which dismiss evidence to the contrary.
And above all, they need decision makers to question the knowledge and credibility of the patient. Even those who are Fellows of the BPS (British Psychological Society).
What I don't see is an impartial, evidence-based approach. I see a textbook example of group-think, where dissident voices are unwelcome and relegated to the letters page. I see an 'obsession' with CBT and GET. I understand it, but the scientific process requires more objectivity and we will all be better off if we accept that there's more to CFS than fatigue.