Hi, Just wondering if there is an easy or simple reply to a Doctor who recommends GET /CBT ? Obviously I want to convice them that it is pointless but I would like to know what the best evidence is for this or the best evidence that this is a physical illness. I know there are plenty of papers out there but is there one or two bullet proof papers that my Dr. cant challenge ? His usual reply is, its not replicated or two few patients etc.He acknowledges that some people dont accept the outcome of the PACE trial but these are the NICE guidelines.
I think you are taking the right approach of trying to come to some shared position on this with the doctor.
There are no bullet proof papers. Your doctor can indeed challenge all the stuff out there on the grounds that it is not replicated or too few patients etc.. However wide he opens his eyes there is nothing unequivocal to see. The Norwegian phase 2 rituximab trial is strongly suggestive of an immune mechanism for some cases but it needs confirmation. So I would suggest agreeing with him so far.
And at least he acknowledges that PACE has its critics. You might be able to persuade him that dissent is a bit stronger than that. The Norfolk and Suffolk health area has recently proposed setting up an ME/CFS service expressly not endorsing the psychological approach and NICE. The arguments against PACE showing a positive outcome can be summarised as:
1. It was unblinded and the primary outcome was subjective and this means that the trial fails on the most basic requirement for sound methodology.
2. CBT is designed to alter beliefs towards greater optimism so it is not surprising that patients receiving CBT said they were more optimistic at the end, if only to be kind to their therapists. So this primary endpoint of reporting sense of wellbeing is useless.
3. In contrast, the objective measures in the trial showed fairly conclusively that CBT and GET produced no clinically useful benefit.
4. Nobody actually knows what it would be about a CBT session that helped, even if it did, so there is no way to extrapolate from PACE to routine service. Perhaps the most ironic aspect of CBT is that one of the most eminent proponents of this approach voices concern that there are hardly any trained CBT therapists in the NHS - so patients are unlikely to get 'real CBT' if referred for it (maybe even in the PACE trial?). And since we do not know if CBT works we don't actually know what 'real CBT' should be like anyway!!
The problem is that if you do not want to see a talking therapist then the GP does not have anything else of proven worth to offer so it is hard to blame him for not offering anything else. What I think is a pity is that referral to someone with extensive experience of talking to PWME and trying to help them manage their illness has to be called 'CBT'. A number of people on PR say that they have been grateful for the help of such people - even if they were helpful as people rather than as 'therapists'. If I were a GP in this situation I would feel the best thing to do was probably to find someone who has been talking to PWME for years who seems sensible and ask them to help. I have a suspicion that that is more likely to be a physician with a special interest than a 'trained therapist' but I simply do not know.