As I understand it, there are two separate issues: 1) the general problems with the NHS, and other national health systems for which governments are responsible, and 2) the specific problem of the system’s failure of people with ME/CFS, responsibly for which lies with governments, institutions, organisations and individuals, much as
@Sean said
above.
I see what you mean but isn't this expecting things back to front?
It is a bit like expecting Esso and Shell not ensure they do not pollute the sea, without bothering to ask them. If challenged Esso could say 'all we know is that we were asked to find people some oil, if we bothered about the sea others would have done it cheaper'.
I’m not sure I agree. Rightly or wrongly, Shell and Esso’s job is to maximise profits for their shareholders. It is the responsibility of governments, consumers and society to ensure that they are incentivised to protect the environment. The job of doctors is to improve people’s health – whatever system they are working in. If the system they are working in is failing those whose health they are responsible for improving, then they have a moral and professional responsibility to try to change the system. That means speaking out, as so many doctors are now doing when they themselves are experiencing ME/CFS-like symptoms following acute covid-19.
You cannot blame the MRC for that. The MRC is not designed to 'come up with' anything. It is a source of funds and a mechanism for deciding what to fund. I am not convinced that much that was worth funding ever got turned down to be honest.
Sorry if I’ve missed where you explained this, but who or what are you suggesting is to blame for the lack of progress that has been made in understanding ME and helping patients for the past 30 years? What do you think should have been done that wasn’t?
I accept that there has been a lack of high quality research proposals but who is responsible for that? If nobody is responsible, that is a failure of the system. Who is responsible for that? Those within the system or those to whom it is accountable (ie government) or both?
This overlaps to some extent with some of the questions I asked you on your
Winter Reflection thread, which I’d be very interested to hear your thoughts on:
Robert 1973 said:
Jonathan Edwards said: “Things change but mince pies still taste good and there are things worth working at - like what the heck is ME?”
Reading this made me wonder, what more can we do to help answer this question?
It seems we may be winning the CBT/GET battle, which is a huge stride forward, but what else? In
another thread you wrote:
“I was persuaded that there was a real disease called ME/CFS by listening to patients' accounts of their disabling illness. For the previous forty years I had not been persuaded there was a disease called ME because I was aware that there was no reliable evidence for pathology on investigations.”
This made me wonder how many other brains there are out there like yours that could be helping to answer this question but are currently uninterested or unaware of what the question is and how important it is? How can we help to get these minds interested and involved? How do your friends and colleagues respond when you tell them about your interest in and involvement with ME? Do you think attitudes among disinterested medics and scientists are changing? What more can we do? Maybe this is a question for another thread.
Sorry, too many questions, but I hope you can answer them, as I think it helps us to understand where we need to focus our attention to effect the necessary changes.