Insearchof, I've brought your quote over from the other thread because I think it's more appropriate to discuss it on this thread. Thanks insearchof, for sharing your views on these issues. I find your views very interesting and helpful. First of all, apologies for this enormously long post... It's a subject that I'm very interested in exploring, but I understand if other people don't have the energy or the same interest in it, so I'm not making assumptions that people will be inclined to engage with this. I think that most of our disagreement about these issues probably comes from the different way we use the terms 'ME' and 'CFS'. Both the terms can be used in a strictly evidence-based sense; or also a political (official) sense; or a personal sense. For example, I believe that I suffer from 'ME' and that's how i refer to my illness. But I am officially diagnosed with 'CFS/ME'. And if I lived in the US, then I would probably be officially diagnosed with 'CFS'. I have never been officially diagnosed using the strict definitions of 'ME', but I still refer to my illness as 'ME'. When I talk about the 'ME community', I'm talking about it in a practical sense, and I not talking about people who purely have an actual 'ME' diagnosis. From a UK perspective, when I talk about the 'ME community', I'm actually talking about ME patients who only have a 'CFS/ME' diagnosis. In the UK, a diagnosis of 'ME' is not available, unless, possibly, if you go private. But almost no one goes private in the UK, so there isn't an 'ME community'. So when you talk about an 'ME community', there isn't one in the UK. Not when using official nomenclature. So when you talk about an 'ME community', based on diagnostic definitions for 'ME', in the strictest scientific sense of the term 'ME', then where is this 'ME community' that you speak of? We don't have one in the UK at all. And I suspect it is a tiny, minute, community in the USA and Canada, only for those who go and see specialists such as Dr Bell or Byron Hyde. So I don't know where you would find an 'ME' community, unless self-diagnosed, or one of the fortunate few patients of Bell's, Hyde's etc. So if you don't have an ME community, then how can you make changes in the ME community? The way that I see it is that the disease 'ME' doesn't officially exist at the moment, in a wider practical or political sense, either in the USA or the UK. Governments are blind to it, society is blind to it, many scientists are blind to it. Officially speaking, ME only truly exists in the WHO classifications, medical history books, old research papers, and a very very small number of clinicians, with probably just a hundreds of patients between them. Only 'CFS' and 'CFS/ME' officially exist, in a wider practical sense, in the USA and UK at the moment. So my opinions are coming from a place of practicality and pragmatism for the wider community who are diagnosed with 'CFS' in the USA, or 'CFS/ME' in the UK. I believe that making incremental changes to the CFS and CFS/ME diagnosis is more likely to move us towards the ideal situation for ME patients in a shorter time frame, than attempting a make an immediate change to the ideal political situation for ME patients. I believe that we are more likely to take patients, scientists, researchers, advocacy groups, governments etc. with us, if we advocate for incremental or step changes to the current situation for the CFS diagnosis. And in the current political climate, almost everyone with 'ME' gets diagnosed with 'CFS' or 'CFS/ME'. So when I talk about using the CCC as an improvement for the 'ME community', what I actually mean, is that I think it would be an improvement for all those patients who have 'ME' but are currently diagnosed with 'CFS/ME'. This is why I wanted us all to have this conversation, because every time someone talks about 'ME' or 'CFS', we all mean different things. You only refer to 'ME' in the very strictest sense, whereas I often use the term 'ME' to cover everyone I know who has a 'CFS/ME' diagnosis in the UK, and a 'CFS' diagnosis in the USA. If I were to refer to the 'CFS community', then many people would think that I was only referring to people who have idiopathic 'CFS', so I usually refer to it as 'ME'. I'm now trying to have more clarity and accuracy in my use of nomenclature. The changes that I am proposing for CFS or CFS/ME definitions are aimed at making the lives of both CFS and ME communities better. I see this happening because I believe that if the CCC, for example, were used for a CFS definition then this would bring benefits to the ME community through more specific criteria being used on a vastly larger ME patient population (i.e. ME patients with a CFS diagnosis) than currently is the case. Most ME patients have a CFS diagnosis in the USA, and all ME patients in the UK have a CFS/ME diagnosis. I referred to these communities as an 'ME community' because I know that I, and the people I know, have 'ME'. But officially speaking, I should refer to the 'CFS' or 'CFS/ME' community. So, yes, when I suggest using the CCC, it would apply to the current 'CFS' community in the USA, and the 'CFS/ME' community in the UK, if we are using official nomenclature. Of course, when using the official name ('CFS' community), this would include patients with undiagnosed 'ME'. I believe in taking a pragmatic approach forwards for our wider community, which will take all the patients, researchers, scientists, governments etc. with us in making incremental changes that would benefit our community. I acknowledge that you (I'm going to attempt to paraphrase you, so please correct me if I've got your position wrong), believe that nothing except the strictest interpretation of 'ME' is permissible, in a political and wider practical sense, and anything else goes against us. My opinion is that it would be a stepping stone to less confusion than the current political situation, but I agree that it's not an ideal situation. Yes, I agree that it would continue to bury ME in CFS, but in my opinion it would be a better situation than we have now, in the political sense. If I truly believed that we could take everyone with us (patients, advocacy groups, scientists, researches, the medical profession, and governments) in one large step to make everything as it should be for ME patients, then I might agree with your approach to this issue. But I think you are mistaken if you think that would be immediately possible, without incremental changes. I think that incremental changes are the only realistic way we have of making changes. I understand what you mean when you say that the CCC should only be applied to the 'CFS community', and not the 'ME community', but then we need to define what the 'CFS community' is. If we define the 'CFS community' as everyone who currently has an official diagnosis of 'CFS', then this would include a lot of 'ME' patients. So in this case, practically speaking, the CCC would also be applied to patients with ME. I think that I am approaching this issue from a mainly pragmatic and practical perspective, whereas you prefer to approach it from a strictly scientific perspective. As long as we are both clear about exactly what we mean, then I think we agree with each other on the facts, but differ slightly about the way we would expect to implement changes for the CFS, CFS/ME and ME communities. I believe that most of the disagreements on the forum about this subject arise from mixed and confused use of the terms 'ME' and 'CFS'. for example, you might be clear in your own mind about what you mean by the term 'ME' and 'ME community'. But like I said earlier, your definition of 'ME community' is different to mine. And my definition of 'ME' is anyone in the UK with a 'CFS/ME' diagnosis. I should be more clear about what I mean. When i talk about the 'ME community', I'm referring to people with 'ME' who mainly have a 'CFS' or 'CFS/ME' diagnosis. Like I said earlier, I'm going to be more careful with my words now, so this thread has been very useful to teach me that. Everyone has a different approach to this, and that's why I set up this thread... For example, the IMEA, are proposing scrapping the term 'CFS' and replacing it with the term 'ME', which I don't disagree with, but then that leads to all sort of arguments about what diagnostic criteria should be used, and what happens to people with CFS who don't meet the new criteria. These things need to be thought about. And their proposals also lead to the other discussions we've had on this thread, about people with mild ME, or recovered ME. How do they fit into the proposed diagnostic criteria? No one seems to be having those discussions in our community, except here in this thread. I agree. ISO, Would you acknowledge that the scientific situation and the political situation are two entirely different things for people with ME? Thanks for the discussion ISO. I appreciate that you might not be able to fully respond to this ridiculously long post. ISO, I do acknowledge and understand all the discussion points that you have made.