Solving the ME/CFS criteria and name conundrum: the aftermath of IOM, 2020, Jason & Johnson

Yes, consultation could be good.

Though I'm not sure how easy it will be to ever get agreement.

Some people only want myalgic encephalomyelitis on its own while it's unlikely many in the medical establishment would be happy with that, though they can live with ME in combination with another name e.g. ME/CFS. One possible change would be to have a different second name, such as ME/SEID.

There was consultation with various stakeholders in the early 2000 regarding the US coordinating committee's suggestion for NEIDS (neuroendocrine immune dysfunction syndrome), which was then adjusted to CNDS (chronic neuroendocrine immune dysfunction syndrome) with ME as a subgroup, but it never took off, partly or perhaps mainly (I can't remember at this time) because some people only wanted ME on its own.

 

I'm pleased to see this:

 

I was originally diagnosed with ME in the late 90s. My consultant told me that he would use the combination ME & CFS - I'd have to dig through paperwork to see if it was ME/CFS or CFS/ME.

He told me this was because some in the medical profession didn't acknowledge ME and only used CFS. That if he didn't use the terms they used it might give them the excuse to try to diagnose something else instead (perhaps a mental health issue that he didn't believe I had) or to simply ignore his input, because they didn't believe that ME existed.

 

That list looks like exercise intolerance, not PEM.

 

That is a direct implication of the IOM report, and from memory was emphasised in that report or the associated discussions.

 

This is a point I have been making for five years. SEID+exclusions might be workable as a research criteria, but as has been discussed since 2015, how PEM is operationalised is critical.

 

Yet the research indicates that some of those with MS do not have PEM. We need to be able to identify PEM objectively, and currently only repeat CPET seems to do that, and its not ideal as a general test.