A lot of us don't have a problem with the SEID ctlriteria. There was a huge amount of data reviewed by experts to agree upon it. It is meant for clinicians and it's simple and easy to follow for busy clinicians.
The point is to get more patients diagnosed, which may be helpful in fighting for disability status. At least the patient has a name for the problem (ME/CFS) which may bring him or her to resources that can help.
A more stringent criteria might be useful for researchers, but from what I can see, patoents with a lot of underlying problems can fit the ICC criteria. I don't believe, nor do the scientists, that this is one biological problem.
Take the NIH study going on. Many of us didn't qualify, as a single viral episode didn't set us off. I didn't qualify, as my cancer treatment triggered my ME/CFS, yet I fit the ICC criteria and my labs match pretty well with what the scientists have been finding. I've tried getting into studies at Stanford, but I'm either too old (over 50), on too many drugs and supplements, and getting better, so they fint want to study me.
So, even if they use the ICC as a gate for research, it's not going to help patients like me who aren't represented in the studies.
But, it is useful to recognize I have a second major illness to be able to realize what I'm up against, plan my life accordingly, and do the due diligence to whittle away at the complex set of underlying problems (which are many, as they seen to be with many other patients) causing my symptoms, which have been lessening over time.
It serves me no purpose to debate the criteria. Dr. K is a brilliant, caring, competent doctor who diagnosed me with ME/CFS the first time I saw him, while numerous other doctors hadn't, and I have been improving under his care and that of my other doctors.
Whats needed is a follow up video with a rundown of testing and treatments, which should include a functional medicine approach as well as conventional medicine, which has too limited a set of tools to fully help us.
