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

[Dolphin]

Careful consideration of illness terminology is important, as label associations have a direct effect on treatment and outcomes [32]. The type of label used to describe an illness has a direct effect on attributions regarding its cause, nature, severity, transmission, and prognosis [33]. The IOM’s attempt to develop a new name encountered a number of obstacles, and the SEID name has generally not been used by the patients or the professional community. Certainly, changing the name is a complex endeavor, and it was probably naïve to try to impose a new name like SEID on a diverse patient community, especially with little input from major constituent groups. Bringing together key gatekeepers (including patients) and respecting and valuing their views on this matter represents a different process that might be more successful in bringing about a consensus for a name change, as will be further articulated below.

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.

 

[Dolphin]

I'm pleased to see this:

Research criteria and clinical criteria do not need to be the same. Generally, research criteria aims to achieve good specificity levels, while clinical criteria can be useful in many contexts with lower specificity levels to increase the sensitivity levels. A patient with ME/CFS could also have another illness, and excluding this person from a clinical diagnosis of ME/CFS could create barriers to treatment.

 

[Invisible Woman]

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I know other people have said the same, about ME not being used by the medical profession in the U.K., but I have to say this isn’t my experience. My GPs call it ME, it says ME on my medical notes and Consultants from all specialties use ME when talking to me and corresponding with my GP. Am I the only one?

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.

 

[alex3619]

I appreciate that itemising PEM is difficult, but they've made an awful attempt with that list

That list looks like exercise intolerance, not PEM.

 

[alex3619]

I'm pleased to see this:Research criteria and clinical criteria do not need to be the same.

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

 

[alex3619]

This may be true if the criteria are used literally, but the lack of exclusions was designed with clinical practice in mind so that people wouldn't end up not being diagnosed because they had another condition; with research cohorts, I expect most, if not nearly all research groups would add on exclusions.

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.

 

[alex3619]

Leonard Jason himself found that the Fukuda et al criteria if just assessed on paper without exclusions could lead to some people with Multiple Sclerosis and most people with Lupus to be diagnosed with CFS

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.