Those politicians who have agreed to participate in this CPG, in my opinion, are entirely correct in refusing at this point to accept anything other than an intention, at some future point, to propose a seperation of ME and CFS, until then it is entirely likely that anyone in Scotland who has a diagnosis of 'CFS' is as likely to have 'ME', in which case it would be counter productive to force a minority 'opinion' on the group.
I personally agree that all patients with all types of fatiguing illnesses need to be looked after, medically and socially.
But I believe that it is vital that we move towards acknowledging that there may be subsets involved in CFS/ME.
And for me, it is vital that future research investigates sub-sets, using more selective criteria, whatever they may be.
The ICC is one such potentially selective criteria.
The CCC is now starting to be used for research in the USA. This is a positive development, in my opinion.
There is the issue of post-exertional malaise, which is often considered to be a cardinal symptom of ME.
In my opinion, patients with this specific biomarker need to be investigated as an exclusive and distinct group.
I think that they also need to have therapies and treatment specifically tailored for them.
And patients with other fatiguing illnesses need to have research, therapies and treatments tailored for them.
And then there is the issue mis-diagnoses which needs to have more focus and resources placed on it.
In my opinion, it is essential to investigate sub-groups in research.
Maybe if patient charities, politicians, the medical profession and researchers start acknowledging the differences, and catering for the different sub-sets of patients, then we might start to make progress in understanding the nature of the various sub-sets.
It's not surprising that many ME patients in the UK want to be separated from any suggestion that they suffer from either a psychological illness, or a 'fatiguing' illness without other symptoms. It seems to me that the vote at the CPG on ME was probably an attempt to do just that. It seems quite reasonable to me. Asking for 'ME' to be recognised as a discrete biomedical illness is part of the same process of having ME properly recognised as a biomedical illness.
It seems to me that there might be more evidence to suggest that patients with post-exertional malaise might have a distinct illness, than there is to suggest that all fatiguing illnesses are identical. So, if we are following the evidence, then those who call for 'ME' (if it is defined by 'post-exertional malaise') to be considered separately from other fatiguing illnesses might have the balance of the evidence on their side. It seems like a reasonable position to me, depending on the fine details.
It's not the patients who got us into the current mess. It was the establishment. And it is the establishment who continues to propagate the mess. I don't blame any patients for wanting a better situation, or for pushing for a better situation.
Maybe the CPG on ME aren't aware of the strength of feeling about the issue, and why it is such an important issue for many patients. Maybe their awareness will increase now that the majority have voted for the motion.