According to a study published by the Lancet on 18th February CBT and Graded Exercise Therapy (GET) really DO treat ME/CFS.  Really? So what’s new then?

It was at least 8 years ago that I sat in a meeting of the Hertfordshire based ‘Hermes’ trust on the treatment of ME/CFS with speaker Professor Tony Pinching, the then Principle Medical Advisor to the trust Action for M.E. and lead Advisor for ME/CFS to the Department of Health and as well as Chairman of the Investment Steering Group that devised the process and criteria for setting up the new services; oversaw the assessment of bids; and allocated funds.  I remember very clearly, while there was loads of empathy, even sympathy for those with CFS/ME, his assertion that CBT and GET actually worked was met, at least within my earshot, with alot of huffing and puffing that ‘didn’t he think we’ve tried all that, and it doesn’t work?’.  The Action for ME’s own survey carried out in 2008 revealed another set of lacklustre results though they were generally more favourable to conventional strategies than the survey of 2001.  On the one hand there was some support for CBT with 50% saying that CBT was helpful. In comparison the 2001 survey (31% of membership, ca. 2,338 replies) scored CBT at only 7% beneficial with a massive 67% of those that responded claiming it made no change (26% claimed it made them worse).  So CBT shows a marked increased effectiveness in a 7 years span.  On the other hand, the 2008 survey (2,763 replies) claimed that of those who had received GET 45% reported some improvement in comparison with the 2001 survey that reported that only 34% found it helpful.  However, a huge 50% of those surveyed in 2001 claimed that Graded Exercise made them worse.   Are these figures really showing us anything we didn’t already strongly suspect?  

The most recent study published in the Lancet mid February 2011 and funded by the Medical Research Council (MRC) surveyed 641 patients with 30% returning to normal levels of fatigue and physical function after treatment with Cognitive Behavioural Therapy and GET.  The recommendation is that all patients who can physically get into a treatment centre should have access to this kind of treatment. 

So what’s the preliminary conclusion from these studies and figures?  Perhaps as ME/CFS gains more credibility as a ‘disease’ sufferers are responding better to conventional psycho-medical interventions.  As one commentator once reported: how can I get help for my condition, if at first, I have to prove I am ill? Perhaps campaigners, now having received to some extent the much needed recognition, have enabled sufferers to respond better to treatment because the need for credibility has been met.  I wonder if they might respond any better with the persistence of this strategy as clinicians perceived as experts deliver more CBT and GET?

I notice the media recently no longer seems to be so littered with debates over the mind versus body conflict with respect to ME/CFS.  What seems to be more the emperor’s new clothes, is the effectiveness of CBT.  There are a few outspoken opponents to the widespread ‘official’ evidence that CBT works, one of whom is Dr Oliver James who maintains: CBT is ‘Cheap, quick and simplistic and naturally appeals to the government.  Yet the fact is, it doesn’t work.  After treatment, two-thirds of those who had CBT have relapsed or sought further help.  Methods that go beyond the symptoms to the heart of the matter are infinitely preferable to CBT’, argues Dr James.

Much intellectual debate surrounds the relative merits and demerits of a clinical talk therapy such as CBT.  As another commentator has observed: CBT isn’t more effective, it’s just more researched.  And being more researched it can be held out in the intellectual arena for debate and discussion over its relative usefulness.

However, in my experience and in the words of one commentator Dr Greg Mulhauser  – ‘the evidence suggests that the abilities of individual therapists may be a more significant factor in determining outcome than therapeutic orientation’.  In my opinion, it is impossible to control all of the variables that might affect the positive outcome from a talk therapy intervention:  from the attitude and life experience of the therapist, to the readyness of the patient to engage with what they need to confront to change their mental, emotional and physical health. 

As someone who has worked with many dozens of sufferers of ME/CFS, many find themselves on a long and winding road on their way to recovery, one they had least anticipated treading, and at the frontline of all those initial few steps is the NHS.  The need for accountability means that conventional strategies have their hands tied by the tradition of clinical trials, the need for scientific rigour and accountability, and most importantly the relevant studies to ensure continued or increased financial provision.  In my opinion, all of that waters down and often damages that elusive patient-therapist relationship that is at the heart of mental, emotional and clearly physical wellbeing on the journey to recovery.  As Dr Oliver James suggests, approaches that reach the heart of the matter, and I might add here, by therapists and counsellors who have that mysterious je ne sais quoi which is not teachable via intellect, are infinitely superior to those interventions that follow a clinical model of deliverability.  And I could go further and suggest that that was never more so the case than with this particular client/patient group where need for individual validation and recognition become a central driving force in the psychology of people with ME/CFS.

So is this recent claim that CBT and GET actually works just a ruse to receive more of that much validating funding from the government?  Are these improved results from 2008 over the 2001 survey, and the most recent ‘independent’ study more about just how the variables are being measured, or the fact that ME/CFS sufferers have moved on as a group?  Or are we just looking at the experimenter affect: what we are looking for we can confirm, one way or another? After all, the recent figures are no longer produced by the Interest group that represents itself but by the government funded MRC.  If we want to make an assertion that something works, something as variable and unique as talk therapy or Graded Exercise Therapy and that elusive patient/therapist relationship, maybe we just have to look for supporting evidence in the right places.

When the NHS sets up a department called, PNI (psychoneuroimmunology) or even better, the Mind-Body department, I wonder how many other conditions will suddenly find their roots into the mental, emotional and, now I’m pushed, the spiritual aspects of disease?  I wonder then how many specialists in their field, may have to liaise with a more earthy, integrative, and holistic viewpoint that medical science currently excludes from much clinical data that is collected about various bodily diseases and how many years before the Great Unification Theory reaches medical science?  I hope soon.  It will take a critical mass of patients away from convention, or a movement of frustrated physicians within conventional avenues to instigate the much needed changes that may one day lend a more wholesome and humanist approach to health and wellbeing.

If you are an independent psychotherapist or hypnotherapist working with clients with ME/CFS click here to read more about my approach to CFS.