hotblack
Senior Member (Voting Rights)
Something I’ve been thinking about. And we’ve discussed in bits elsewhere. But thought a thread may be useful (edit: title changed to reflect the aims a bit better and be less clickbaity).
Slightly selfishly I think severe should be the focus of campaigns and lobbying but also think there is a practical point of differentiation here. Something which makes ME/CFS stand apart.
Loads of conditions want better services and they’re all campaigning for them. I see this closely with PD these days and imorovements are of course needed. The problems of variation across the country, not enough specialists and a scrabble for limited resources. Arguments over what treatments work or should be available. These are common in many conditions.
And we need to be realistic that prioritisation happens and those where this is a proven treatment those options with the clearest outcomes will come out on top. ME/CFS cannot win here. Politicians and NHS leaders and managers hear these requests and campaigns all the time and tbh I think switch off to a degree or at least it all merges into one blob.
What makes ME/CFS and particularly more severe forms different and unique is that the biggest problem is IMHO not the lack of services or treatments to help us but that what services exist and the wider health system actively harm us. How you define harm maybe varies but it seems pretty clear health services routinely act in way which is detrimental to our health.
That avoiding seeking care for non ME/CFS issues is entirely normal for so many is the big issue here along with clearer evidence of harms from inappropriate handling of cases of people with the.most severe forms of ME/CFS. And this is at all levels of the NHS and other health services. We all discuss it all the time. That there is no example of good care to hold up is damning in itself. Most other conditions can at least point to something to say this is what we want.
So this is why I say severe should be the focus with the priority being to on stop interactions being detrimental to our health. II guess it doesn’t because it’s a fight rather than a nice working together with people thing. And those who are more mild are more able to lobby for things.
But honestly the approach of asking for services for mild and moderate people is never going to work for severely affected people (as has been proven) and I doubt it’ll work for mild and moderate either. This is something which is clearest with the most severe but affects us all.
If we can ensure someone has some responsibility and accountability and then things will change and we can expand from there. Treatments will only come when the science allows but stopping making people worse can be done now. It seems quite a simple ask.
Slightly selfishly I think severe should be the focus of campaigns and lobbying but also think there is a practical point of differentiation here. Something which makes ME/CFS stand apart.
Loads of conditions want better services and they’re all campaigning for them. I see this closely with PD these days and imorovements are of course needed. The problems of variation across the country, not enough specialists and a scrabble for limited resources. Arguments over what treatments work or should be available. These are common in many conditions.
And we need to be realistic that prioritisation happens and those where this is a proven treatment those options with the clearest outcomes will come out on top. ME/CFS cannot win here. Politicians and NHS leaders and managers hear these requests and campaigns all the time and tbh I think switch off to a degree or at least it all merges into one blob.
What makes ME/CFS and particularly more severe forms different and unique is that the biggest problem is IMHO not the lack of services or treatments to help us but that what services exist and the wider health system actively harm us. How you define harm maybe varies but it seems pretty clear health services routinely act in way which is detrimental to our health.
That avoiding seeking care for non ME/CFS issues is entirely normal for so many is the big issue here along with clearer evidence of harms from inappropriate handling of cases of people with the.most severe forms of ME/CFS. And this is at all levels of the NHS and other health services. We all discuss it all the time. That there is no example of good care to hold up is damning in itself. Most other conditions can at least point to something to say this is what we want.
So this is why I say severe should be the focus with the priority being to on stop interactions being detrimental to our health. II guess it doesn’t because it’s a fight rather than a nice working together with people thing. And those who are more mild are more able to lobby for things.
But honestly the approach of asking for services for mild and moderate people is never going to work for severely affected people (as has been proven) and I doubt it’ll work for mild and moderate either. This is something which is clearest with the most severe but affects us all.
If we can ensure someone has some responsibility and accountability and then things will change and we can expand from there. Treatments will only come when the science allows but stopping making people worse can be done now. It seems quite a simple ask.
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