Hi Mark,
I agree with many of the comments that have been made so far. (I haven't read all comments yet.)
Perhaps not everyone will agree, but I agree with others who have said that the committee, itself, is the wrong place to focus purely on objections about the process. Once we arrive at the point of presenting evidence to the committee, our attempts to stop the process have failed. The committee's remit is to carry out the work of defining diagnostic criteria, and they will be deaf to our complaints re process, and legally unable to act on such comments. They have a legal contract that they will fulfil unless instructed otherwise by the government departments.
I agree with Tania that perhaps one minute, out of seven, could be dedicated to stating any objections and concerns about the process. I also agree with Tania's comments re which objections should be raised.
I also agree with Sparrow, who said that they might stop listening if we start off by bombarding them with a long list of complaints and objections.
But I do believe that our objections should be stated succinctly for the record.
I believe that the main focus should be on pressing home (in strong terms) the importance of separating ME from CFS and CF (or separating ME from CFS/CF). And making sure that they know that if ME isn't separated (as either a subgroup or distinct entity) from CFS/CF then many in the patient community will have considered the process to have been an utter waste of time. (Perhaps we could set up a forum poll to support this assertion? e.g. the poll question could be something like: "Will the IOM process have been valuable if, at the end of the process, ME has not been defined as a separate subset or separate entity to unexplained chronic fatigue?" In such a question 'ME' would have to be defined loosely.)
There are many other issues that could be raised but, IMO, the most crucial issue that they need to understand is the necessity of defining ME as a separate subset or separate entity.
Like others have said, they also need to understand that ME is not fatigue, and that the primary symptom of ME is not necessarily fatigue (e.g. it can be malaise, post-exertional malaise, post-exertional pain, exhaustion, weakness or autonomic nervous system dysfunction, etc.) I think it would be helpful to highlight this, in strong terms.
Also, as others have said, the committee needs to be aware that there is abundant CFS (i.e. Fukuda, Oxford etc) research which describes CFS as a functional disorder, and that such research must be ignored/dismissed when defining ME. I'm not sure how to best go about discussing/presenting this, because there is some very good ME-related research done under the 'CFS' name. And there is relatively little research done using CCC/ICC definitions. (There are also the historic Ramsay and
London 'ME' definitions that I don't know a great deal about, and I'm not particularly familiar with the research they have produced. But much of it would be considered outdated by now.) Perhaps we (i.e. as a group project for members of the forum) could collate a list of research papers that we believe describes ME and ME symptoms, as opposed to CFS, to submit to the committee?
I think the name issue isn't so important, and it could be a major distraction, but I think that 'Neuro Endocrine Immune Dysfunction' (NEID) would be a very good name. (But perhaps far too unrealistic in terms of wishful thinking!)
Otherwise 'ME' (even just as an abbreviation) would be an acceptable name to me.