It may seem that way to people posting here but to the ME who have had that diagnosis from before CFS times it is important to get resources for them. Also for any other undx'ed ME patients.
I'm not seeing a willingness here to understand the position of the old ME patients or to accept that they have the right to determine their own medical treatment and future.
Some old PWME don't find this obtruse or think that the debate is difficult. It's been the same goals they have been fighting for decades. I don't find it hard to argue for a clinic for "PWME only" and not NICE because I was seen by ME doctors pre-CFS and before NICE. I'd like to see another doctor with an interest in ME and some research done on this patient populations. If we have a clinic with a well defined ME group (whatever the criteria) then it will be easier to apply for research.
In the UK they have been shuffled into fatigue clinics that they don't want to be in. For the Scots XPG to be talking about a clinic they want to avoid the AFME influence that has been trying to bring the fatigue clinics to that area.
There's nothing obtruse or small or difficult to understand here unless one wants to complicate it to things that it isn't. The ME patients would like research that proves what other patient populations they are like/ the same as but this is secondary to having a XPG that represents them, clinics that treat them and research that could provide a cure.
Pre-CFS ME patients are voting for their interests. It's simple. It may not be understandable to other groups but they are not accountable to other groups. It's up to the pre-CFS ME patients to determine their own future. I fail to understand why other groups would find this a problem. It's up to them to fight for their own clinic and own XPG if they want one.
If PWCFS or PWCF disagee with the way PWME are going about this or fail to understand their objectives it is all the more reason for the two groups to be seperated. We can only work together with mutual respect.
I do agree with much of this, and I do agree that the argument of the "PWME" should be heard respectfully. But there's an issue of language here that those people on the "PWME" side should always keep in mind: the definitions in the US are different and the label "CFS" means something different there. All too often, this whole argument looks rather too much like a comedy sketch with a group of people arguing about "how big is your fanny?", and neither of them having a clue what the other actually means. "I say potato, you say potato, all the more reason for us to be separated"...
"PWME" should also bear in mind that at least a large proportion of their "post-CFS" ME comrades in the UK, and all their US-based ME comrades - in other words certainly the large majority of people with the same illness as themselves - are in the "PWCFS" group.
So the part that begins to make me feel uneasy is when I read this:
If PWCFS or PWCF disagee with the way PWME are going about this or fail to understand their objectives it is all the more reason for the two groups to be seperated.
In the US, everyone with ME, CFS or whatever knows their illness as "CFS" - or perhaps "ME/CFS". ME has (pretty much) never existed there as a diagnosis. So if a US PWCFS disagrees with the way a UK PWME is going about this, then I hope when you say that's a reason for them to be separated you are not talking about a medical or clinical separation.
Simply: in the US, pretty much anybody with ME is diagnosed "CFS", and most of them don't understand why you're making a fuss about the name. What is more important to them is campaigning for biomedical research and medical treatments. The argument about the name looks petty and nonsensical from there; if it were understood that when you say "CFS" you mean "CF", thanks to Oxford, it might begin to make sense. Somehow a line has to be drawn that doesn't include CF people in our research and treatment, and if there is any sense in the argument going on in the CPG, then that is what it is really about. The inclusion of the "CF" group, and the desire to separate them from "ME", is what is really driving this situation, I suspect.
So I hope that "PWME" will try to bear in mind that in reality the difference between "PWCFS" and "PWME" is a name, and nothing more than that.
If there are two distinct conditions ME and CFS, then you're plenty likely to have CFS and call it ME, and plenty likely to have ME and call it CFS - regardless of what the names are
supposed to mean.
And I think we are unlikely to make any political progress while the naming issue divides people with the same illness from each other, and divides people with the same interests and concerns from each other. If only we could all campaign together for some common goals we would have so, so much more weight. Could we not all campaign together for more biological research for both "PWME" and "PWCFS"? Could we not all campaign together for subtyping, the removal of the Oxford "CF" component from "ME/CFS", and the use of CCC in all research? Or full screening for undiagnosed conditions for all people with CF, ME, CFS, ME/CFS and CFS/ME?
I doubt it, because my fear is that if we get close to agreeing on anything like that, some PWME will find something that the PWCFS can't agree with and make that issue more important than all the common goals. But I live in hope...
Just one more attempt at finding some way we can campaign on a common platform. Can we all campaign for a 3-way subgrouping: CF, Fukuda ("CFS"), and ICC/CCC ("ME")? All research should then define, for each of its patients, which group they are in. Mixed cohorts would be fine if the ME subgroup were well-defined within the mixed cohort, and the ME results were therefore presented separately and compared with the CFS results. Mixed treatment centres would also be fine if all the patients were defined according to one of these 3 groups and treated with that in mind.
There are legitimate concerns from the "PWME" argument. They are essentially the same concerns and interests as the "PWCFS" group, they just draw the line of definition in a different place and/or use different names. It's Russian Dolls: both are trying to argue the same thing but from a different perspective so that the argument
seems different. The "PWCFS" don't want to be lumped in with Oxford-style "PWCF". The "PWCFS" hate the CDC's telephone cohorts and the loose definitions - it's just the same issue with different names and lines drawn in different places. There's nothing legitimate that the PWME are saying that the PWCFS don't understand from their own experience. So is there really nothing we can say to find a compromise that allows everyone to campaign on the same side? If not, then the only possible explanation would be a triumph of dogma, and my reference to Kinnock would be valid.