Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
I'd like to give a very brief explanation of how the health system works in the UK, in case it helps anyone understand the UK perspective.
All medical policies relating to our NHS (which probably about 99.9% of us use as our only health service) are determined by NICE (National Institute of Clinical Excellence), which is an arms-length (independently run) government body.
NICE is run by bureaucrats, independently of the government, and is supposed to base its decisions on scientific evidence, not on politics.
I believe that NICE determines some 'rules' that our NHS doctors are obliged to follow, and it also lays out some 'recommendations', that most of our doctors will follow, because otherwise they would have to do their own research, and make their own decisions, and they would also be more exposed to civil litigation if they did not follow NICE recommendations.
NICE officially names our illness as 'CFS/ME', although patients often refer to it as just 'ME' (and doctors often refer to it as just 'CFS'!)
The NICE guidelines for CFS/ME mention a few different diagnostic criteria, and recommend certain criteria over others, and give reasons why. (I can't remember the specifics, except that the CCC are specifically not highly recommended in the guidelines.)
Now, I personally believe that it's a good thing that we have the new ICC so that the patient community can push for its use, if we all decide to. It's something else in our toolbox. I've now read most of the paper, and I really like the ICC, myself.
But NICE will not be carrying out their next review of CFS/ME policy for a year or two (can't remember the exact date), and nothing can change in the UK until they do so. When NICE carries out their next review, then the patient community can try to get them to consider the ICC for adoption.
Before then, we can try to make sure that politicians, patient organisations and the media know about the new ICC.
Unless our largest patient organisations come down heavily in favour of using the ICC, then NICE will not seriously consider adopting them, partly because NICE is a very conservative organisation and things change at a snail's pace, but also because our whole system is totally monopolised by the psychiatric lobby. Also, our patient organisations are very conservative and tend not to (i.e. never) push for radical change.
So things over here are pretty bleak.
Who is our principle government advisor for CFS/ME? Yes, you've guessed it, it's Prof White, the arch-psychiatrist. (Well, I think it's him - I'm not 100% certain about that.) (And I think Wessely also advises.) So every time we contact the government to ask for change, they ask their advisors (e.g. White and Wessely) for advice, and the message comes back that we've got it all wrong, we are mistaken, and we are barking up the wrong tree. It never gets beyond that. It's like banging our heads against a brick wall.
We can continue to put pressure on politicians and patient organisations for change, and to make sure that these new criteria are known about and have a high profile. I do like the suggestions that people have made, re making sure that doctors, and the media know about the new criteria.
I had hoped that our new government would make changes when they got into power just over a year ago, because they had been in opposition for so long so I thought that they would have had a lot of contact with the ME patient community. But nothing has changed. One of the coalition partners (the Liberal Democrats) did have a good policy proposal, of setting up an independent body of ME experts to oversee the distribution of funding for scientific research into ME, but we've not heard anything about this since they got into office.
Anyway, I just thought I'd point out why maybe some of the UK members of the forum are not jumping for joy about these new criteria, even if we are very enthusiastic about them (and I am very enthusiastic). Nothing happens over here until the bureaucrats say so, or until we get an enlightened government, and that's not for want of putting pressure on the government and having loads of high profile, high status, advocates over here.
I hope that this message hasn't come across as really negative. This is just my experience of the world of ME in the UK, since I've been ill.
There have been changes for the better in the UK system since I became ill about 8 years ago, but it's a very slow process, with two steps forwards, one step back.
At the time of the next NICE review of CFS/ME, I can guarantee that there will be a lot of political action over here from ME patients, and the patient community may well decide to heavily push for the adoption of the ICC.
For me personally, I really like the criteria, and I hope they are adopted swiftly by researchers.
If these criteria are adopted by researchers immediately, or soon, then I think that this will bring great benefits to our community.
All medical policies relating to our NHS (which probably about 99.9% of us use as our only health service) are determined by NICE (National Institute of Clinical Excellence), which is an arms-length (independently run) government body.
NICE is run by bureaucrats, independently of the government, and is supposed to base its decisions on scientific evidence, not on politics.
I believe that NICE determines some 'rules' that our NHS doctors are obliged to follow, and it also lays out some 'recommendations', that most of our doctors will follow, because otherwise they would have to do their own research, and make their own decisions, and they would also be more exposed to civil litigation if they did not follow NICE recommendations.
NICE officially names our illness as 'CFS/ME', although patients often refer to it as just 'ME' (and doctors often refer to it as just 'CFS'!)
The NICE guidelines for CFS/ME mention a few different diagnostic criteria, and recommend certain criteria over others, and give reasons why. (I can't remember the specifics, except that the CCC are specifically not highly recommended in the guidelines.)
Now, I personally believe that it's a good thing that we have the new ICC so that the patient community can push for its use, if we all decide to. It's something else in our toolbox. I've now read most of the paper, and I really like the ICC, myself.
But NICE will not be carrying out their next review of CFS/ME policy for a year or two (can't remember the exact date), and nothing can change in the UK until they do so. When NICE carries out their next review, then the patient community can try to get them to consider the ICC for adoption.
Before then, we can try to make sure that politicians, patient organisations and the media know about the new ICC.
Unless our largest patient organisations come down heavily in favour of using the ICC, then NICE will not seriously consider adopting them, partly because NICE is a very conservative organisation and things change at a snail's pace, but also because our whole system is totally monopolised by the psychiatric lobby. Also, our patient organisations are very conservative and tend not to (i.e. never) push for radical change.
So things over here are pretty bleak.
Who is our principle government advisor for CFS/ME? Yes, you've guessed it, it's Prof White, the arch-psychiatrist. (Well, I think it's him - I'm not 100% certain about that.) (And I think Wessely also advises.) So every time we contact the government to ask for change, they ask their advisors (e.g. White and Wessely) for advice, and the message comes back that we've got it all wrong, we are mistaken, and we are barking up the wrong tree. It never gets beyond that. It's like banging our heads against a brick wall.
We can continue to put pressure on politicians and patient organisations for change, and to make sure that these new criteria are known about and have a high profile. I do like the suggestions that people have made, re making sure that doctors, and the media know about the new criteria.
I had hoped that our new government would make changes when they got into power just over a year ago, because they had been in opposition for so long so I thought that they would have had a lot of contact with the ME patient community. But nothing has changed. One of the coalition partners (the Liberal Democrats) did have a good policy proposal, of setting up an independent body of ME experts to oversee the distribution of funding for scientific research into ME, but we've not heard anything about this since they got into office.
Anyway, I just thought I'd point out why maybe some of the UK members of the forum are not jumping for joy about these new criteria, even if we are very enthusiastic about them (and I am very enthusiastic). Nothing happens over here until the bureaucrats say so, or until we get an enlightened government, and that's not for want of putting pressure on the government and having loads of high profile, high status, advocates over here.
I hope that this message hasn't come across as really negative. This is just my experience of the world of ME in the UK, since I've been ill.
There have been changes for the better in the UK system since I became ill about 8 years ago, but it's a very slow process, with two steps forwards, one step back.
At the time of the next NICE review of CFS/ME, I can guarantee that there will be a lot of political action over here from ME patients, and the patient community may well decide to heavily push for the adoption of the ICC.
For me personally, I really like the criteria, and I hope they are adopted swiftly by researchers.
If these criteria are adopted by researchers immediately, or soon, then I think that this will bring great benefits to our community.