Hope123
Senior Member
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@Sean - You're right about the work not disappearing (just because of a name change) but there will be significant questions about who that research applies to when an unvalidated set of diagnostic criteria are used.
Unvalidated diagnostic criteria might not be a huge issue from a clinical perspective (and then it again it may be a disaster if the diagnosis rates sky rocket because providers start diagnosing a lot of people without ME as having SEID, rendering the diagnosis meaningless). However, it will assuredly be a major issue when it comes to research.
The SEID diagnostic criteria has never been validated (think PACE trial, the Oxford criteria and how that study has been viewed given the known properties of the Oxford criteria - thanks to people like Lenny Jason). That's a huge problem for a criteria you are hoping will be universally adopted. My guess is that this is likely a deal breaker once folks start to appreciate the implications.
I would also add that neither have the CCC, ME-ICC, or Ramsey ME criteria been validated; testing criteria parts is not the same as validating the whole. There have been recent papers, including some by Jason asking for studies to come up with better definitions. If we're going to apply that type of criticism to Oxford (which I think is justified), we can't just say "But that doesn't apply to what (however, "what" is defined) I like/ believe in/ etc." In fact, this is another gap I see in the research -- I'm surprised no one has tried to validate these criteria in the last decade (even with the poor funding picture, there are things that could have been done) -- and even the protest letter from experts notes that CCC needs further research, refinement.
Science to me is not about picking and choosing what I *want* to be right; it's about trying to find the truth regardless of how I feel about it. I've participated in projects where the data were contrary to what I initially believed. I understand some people don't function that way but that is how medicine/ science ideally functions. We've already seen the problems with prioritizing beliefs/ conjecture/ opionion ala people who want to believe that this illness is an exercise phobia or can be treated with GET/CBT -- they went with their beliefs, not what the evidence showed. As a scientist, I also am alert to the need to change my ideas as the evidence shifts, not cling onto things just because it's tradition or the most popular viewpoint. That would not be good science.
Also, the recommendations say specifically for the criteria to be re-visited in no less than 5 years and the explanation in the text is that the criteria can be modified to include any new research findings. The Committee worked with existing evidence as detailed in the report. There is no presumption this is the final word.
It's also difficult to predict whether the numbers diagnosed will rise or fall ahead of the criteria being applied. As a physician, the symptom complex described is pretty unique to me and not something I see when I look back on my practice. So the numbers may actually do the reverse, that is go down, much as when ME-ICC or CCC criteria are applied in papers to people with CFS, it's only a % (50% in the Nacul study) of people with CFS who fit CCC or ME-ICC.
It's a long report so I understand people have not had a chance to read it entirely but many of the issues people believe are missing from the report are in it. It's just not immediate if you haven't given a through look. One thought is look at the table of contents and exec summary and pick out which items you want to read. I've read numerous IOM reports -- related to my pre-CFS like -- and this is usually how I start.