And that makes it hard to have a 'biomedical basis cast in stone' because it isn't cast in any stone in the literature. We cannot say to NICE 'we have decided that ME is biomedical and you have to agree'. All we can say is that there is no evidence that the psychiatrists either have any coherent theories or trial based evidence for their approach being of any value. In a court of law the relatives are not allowed to tell the judge that the defendant has to be acquitted because they say so. The judge has to decide on evidence. The problem we have is that the psychiatry people have been doing this. If we use the same tactic we have a very weak position.
I understand set in stone is not the best of phrases, what I mean is that surely the committee needs to be aware of, and take into account the whole body of research on the disease for it to be able to come to an informed decision on any treatments for ME/CFS.
After reviewing the evidence, the IOM report concluded that ME/CFS is a serious multi system disease, and that it is not a behavioural disorder. They clearly thought there was enough scientific evidence to come to this conclusion.
The remit of the 2007 guidelines was to look solely at the research on treatments and not at any biomedical evidence about the disease.
Now that may be absolutely fine for most diseases because research on treatments will have been based on the available science on the disease, but with ME/CFS, the only treatments, CBT/GET and LP, are not based on available evidence, on the contrary all the biomedical research is actively ignored by these researchers and anyone reading those papers will be oblivious of its existence.
So it seems to me it is essential ( hence my use of the phrase set in stone ) that the committee is fully aware at the start of the process of the scientific evidence and takes that into account when assessing the research on treatments for ME/CFS. Without that knowledge how can they do their job?
And how can they assess patients’ reports of harm from CBT/GET if they are unaware of all the scientific evidence, if their only knowledge of ME/CFS comes from the treatment papers where ME/CFS is viewed as a behavioural disorder what credence would these reports have?
If they reject the CBT/GET research, what might they then recommend as an interim solution for treatment?
Without knowledge of the scientific evidence they may well be led to conclude ME/CFS is a MUS and recommend patients are seen at MUS clinics for generalised CBT/activity management etc until such time as there are other treatment option, thus bolstering the whole notion of MUS and keeping ME/CFS in the hands of the psychiatrists.
