The truth is we know absolutely nothing about a 'disease' underlying each individual's situation. We do not even know if all people with ME/CFS have the same problem. As I have tried to emphasise in my Qeios piece, it is time to handle this entirely on the practical evidence, not on theories about oxygen or psychology.
Characterizing ME/CFS as progressive is another matter. It seems to be up to a point, at least for most. It's almost parasitic in that it debilitates but doesn't usually kill.
We do need theories to be postulated, if only so they can be tested and lessons learned including that any particular theory is way wide of the mark. The problem is that the theories being put forward appear to me to be no more than cursory speculation, often looking at only a very small part of the presentation of ME/CFS.
Worse still is the holding on to speculative cursory theorising, whether biological or psychological despite evidence refuting or not being explained by the theory. This gives the impression to Society something definitive is known, when in fact all that is known is that we know nothing about what causes ME/CFS, why it presents at so many different levels of severity and why for the unlucky minority ‘progression’ in increasing severity continues until a point is reached where life for the ME/CFS patient can become unsustainable in the normal physical, social and medical environment the vast majority of other people can cope with or benefit from.
We do know ME/CFS is one of the most disabling and difficult to cope with illnesses for both patients and those who care for them including HCP’s. This Inquest has written this message large for all to see.
Giving full cognizance to that knowing and not denying it by characterising the illness ME/CFS in the HCP domain as ‘functional’ is a very necessary first step to getting back to more ‘practical’ based health and social care, which I know from long experience was more easily accessible before speculative and unfounded theorising on the ‘functional’ nature of the illness ME/CFS really took hold in the HCP mindset from the 1990’s onwards.
We really do need to be clear as ME/CFS advocates (and as patients), about the health care barriers we are up against and what needs to change and then ask for that change in every forum and way open to us as individuals and as organisations.
Patients can exercise choice in the medical treatment they consent to and that they do not. Their choice should be respected not only by HCP’s but by Politicians and Health Care Policy Authorities who by law are not empowered to impose their own health care choice preference on individuals except in the most rare of circumstance when the individual cannot make their own choice.
It looks very much to me that a targeted programme of re educating HCP’s away from habitually ‘functionalising’ ME/CFS is an immediate major priority. It is clear that it is in all respects not just a failed theory of ME/CFS but over the last 30 years or more a damaging failed ‘practical’ response to the illness ME/CFS.
That we continue to know absolutely nothing ‘about a disease’ ME/CFS after all these decades despite considerable resource being put into providing (inappropriate’) health and social care for ME/CFS is a lesson that should be very much taken notice of.
