And secondly, I have found the repeated insults, on this thread (many of which have now been removed), offensive. Such offensiveness divides us, and does not pull us together.
I think we should all try to understand each other's opinions, and try to understand what motivates people with different opinions, rather than attacking honest and compassionate people just for having different opinions.
I don't mind if people have different opinions to myself, but I do mind if people use offensive language about people who I have sympathy with.
Ironically, the people on this thread who have been complaining about people who want to 'divide' our community, have been doing exactly that, by insulting those people.
Ok well I've been through the thread and I can't see any insults or moderation, but I'll take your word for it, Bob.
Taking a vote on exclusion is a divisive measure (should the vote have succeeded) far more so than any reaction I might have had or anyone else's to which you have objected.
No group should be able to dictate a vote that will affect significant (relative) numbers of patients that they do not represent especially on matters that boil down to OPINION.
The trouble with our condition and what some term the 'politics' surrounding it - is that there are too many OPINIONS from so-called experts.
Indeed, I can honestly say that one of the largest psychological pressures I have personally had to deal with over these years have been triggered by enduring the latest EXPERT opinion.
We wouldn't be where we are if there had been a sufficient argument that maintained Myalgic Encephalomyelitis as the name of most relevance. It would then have satisfied many patients I am sure as it would have been in-line with the WHO.
I think when it comes down to it this is the big issue for many. Why can't our condition be called what the WHO once apparently said it should be called?
But you know as well as I do that - apart from the issues about psychology etc. - no aetiology has ever been forthcoming that firmly endorses that link.
NICE acknowledge we have a neurological condition. Historically, because CFS was the preferred term by doctors who objected to ME based on lack of proof (quite rightly so if you think of it from their point of view) we now have a merger viz. CFS/ME.
It is the best that can be hoped for in the circumstances and any attempt to (again) separate the two will take a significant scientific discovery that firmly endorses the nomenclature as well as providing the aetiology.
Chances are and in my opinion this will never include all those who now meet the criteria established by NICE. Chances are and in my opinion Encephalomyelitis is probably not the correct term for most people in the 'pot'.
However, without evidence, the recommended treatments (if you are able to work with your GP and obtain more personalised e.g. drug interventions etc.) appear suitable for all largely as management strategies should you need them or benefit from them.
One has to ask, if 'ME' were to become a separate 'pot' NOW what people who fit whatever the criteria (of the many out there) was determined to be the ONE - expect in terms of improved treatment?
There is much that NICE do not say, much that could be improved, but splitting the 'community' - which would entail everyone be re-diagnosed based on SUBJECTIVE assessments - is wrong.
Now, previously on this thread, 'we' might have been rather abridged in our responses. But IMO that is ONLY because we have had this conversation about a gazillion times before - and the publication of the ICC Criteria has not changed it one iota.
I don't know even if in Scottishland they take the lead from NICE or have their own Guideline? Holmsey - can you tell me? But here in Englishland and even in Dragonland across the mountains - we do.
What would actually change if that vote had gone through? Do patients expect that suddently everyone would get to see a neurologist? Have a scan? What treatment would they be hoping for? Whatever changes they hope for will not be achieved by voting to exclude a population - many of whom probably don't even know about the issues anyway.
It would be extremely helpful if someone could post some evidence of the point of view from either 25% Group and TYMES trust. There must have been something said, that can be reposted. I shall take a looky-loo at their Facebook if I must.
Nobody who is aware of the issues likes the name CFS. 'We' all HATE it. But 'we' cannot change history can we? It is unfortunate but there we go. And btw I was diagnosed with ME way back in the iron ages, so I've been through this mill myself.
Not that that means anyone need agree with me of course
Anyway, if you did vote for 'ME' then who's criteria and opinion would you adopt? What would happen if specific evidence was later found that blew the theory out of the water? And why do you think that 'ME' has not been evidenced with an aetiology, or with proof of 'inflammation of the brain and/or spinal cord' in the last c. 50 years?
Of course I suppose we could adopt a name that has little relevance - like CFS - but you are right. The above vote did have far more to do with it than simple nomenclature and we all recognise that.
Ok. Not even sure if any of that made any sense whatsoever. Shove some links to those other groups that were involved or to a transcript of the meeting - if anyone is able and I'll take a butcher's.
TTFN