1.
I don't agree with everything said in those two posts Neilk linked to, but I think they make some good points and are worth reading, particularly the second one, which is a good summary of a lot of the issues with the name.
A lot of work went into those posts, which I appreciate. I particularly note the following in the name question:
This is just to get a sense of what people are thinking and to generate ideas, not to try to determine what the final name should be.
I agree that these kind of surveys are more a means to get discussion going, than to get a definitive final result.
2.
One thing I do agree about with the critics, (and the one thing I think the IOM got seriously wrong), is the way the IOM handled the name issue.
What they should have done was put forward their reasonings on the different names, the pros and cons, added SEID to the list as a possible replacement, and said to the patient community, and the medical community:
What do you think about all this?
I think that would have worked okay.
In fairness to the IOM and the authors, they had a specific remit, part of which was to recommend a new name. We can hardly blame them for then doing so. The fault lies with the original remit.
3.
From the second link:
A current conflict in the patient and advocacy community thus seems to be between those individuals favoring the unqualified support of the IOM...
Unqualified? Hardly.
4.
Regarding the name itself:
A particularly interesting result in the above survey is the
good showing of Ramsays Disease (RD), coming third as both first choice and total mentions. Given it has not been a widely used name, and so is coming from behind, it might even be a better result for it than the immediate numbers suggest.
Ramsays has the following advantages in the name game:
i) Compared to ME and CFS it is relatively uncontroversial and carries minimal historical baggage, (far as I know).
ii) It makes no technical claim (about symptoms or pathology); and hence
iii) is free from a major source of disagreement – technical accuracy – that plagues all other names under serious consideration; and
iv) does not need to be changed as our technical understanding of the disease improves and changes.
But perhaps most importantly,
v) it may be the only name that could get widespread agreement and support from the patient community.
The only serious objection to RD I have heard so far is that the WHO discourages eponymous names (naming diseases after people or places), which is a fair point to make, and one we have to deal with.
But to be blunt, the WHO and the general medical authorities can get stuffed on this, they don't have to live with the definitely non-trivial consequences of a zoo of shitty names and the whole ongoing debate over it all.
I support the general principle that it is better to name diseases after their basic technical features.
But that requires that those features are well characterised. When they are not, then eponymous names have a legitimate, even necessary, role as a placeholder.
Best I can summarise, the basic facts we are dealing with on the name issue are:
CFS has to go.
ME & CFS (and ME v. CFS) have too much historical baggage, including that there is too much long-standing resistance within the medical profession for any form of ME.
Technically based names have real problems in this kind of situation. (Proof: ME & CFS. Enough said.)
As far as I know, CFIDS and NEID have remained localised mostly to north America and not used much elsewhere as primary names, either by patients or in the formal scientific literature. They are also both technical names.
SEID is not selling as well with patients as might be necessary to make it work. It is also a technical name, (though about as good a technical name as we will get at this point, IMO).
Whatever name is chosen has to stick (which means no serious controversy, or revisions required), and obviously it also has to be relevant.
Which, by my simplistic reckoning, means that Ramsays is the one left standing.
With Ramsay-Gilliams (or Gilliam-Ramsays) Disease as possible variations, if we want a more international flavour.
If the patient community can present a (more-or-less) united front behind one of the Ramsay based names, then I think we have a good chance of bringing the medicos along with us, which we have to do, whether we like it or not.
One thing is for sure, if we continue to be so divided amongst ourselves on the name issue, the various authorities will not pay much attention to our views on it, and we will lose this very rare chance to have a say. This is an issue we patients must deal with and put to bed. It is costing us far too much time, energy, goodwill between ourselves, political capital with the rest of the world, and opportunities to get other stuff done.