I wonder how many threads must be derailed by this same debate about ME vs CFS vs SEID and whether we all have exhaustion, fatigue, malaise, neuroimmune symptoms or what, and whether we are sick according to Fukuda, ICC, CCC, or IOM criteria. Or whether we don't if we have anything that can exclude us from this disease.
Is it important to win this particular debate at a cost to whatever information was presented at the start of this or any other thread?
As pointed out by
@Cort and
@Mary, the significance of the Komaroff article in JAMA is that it brings long-needed attention to this illness to the general medical community from someone with credibility, and helps doctors to understand that this illness is not all in our heads and functional, somatic, or psychiatric in nature.
This should be something to celebrate!!! Wow! Attention in JAMA! Wahoo!
And, what do we do? We stomp all over it, call out our contempt for the content, the nomenclature, and even whether we are fatigued....
Truth be told, we are all individuals. None of us has the exact same disease - the same genetics, the same etiologies. the same list of symptoms, the same labs, and the same responses to treatments.
So, there is never going to be a perfect article that matches exactly each one of our illnesses. Therefore many of us will always be able to pick apart the patient selection criteria, symptoms, labs, and other data reported, because it doesn't match our specific experience with this illness.
Therefore, let's attack every thread mentioning ME/CFS or CFS if you think you only have ME or every thread mentioning ME only if you think you have CFS, or any thread that refers to fatigue, or exhaustion, or neuroimmune symptoms, or pain, or headaches... Is this what we really think is productive???
As a patient, I care about getting well. We need doctors to know about this illness/these illnesses, we need various sorts of tests and various sorts of treatments. And for this disease to be more broadly known about, so more of us can have access to doctors who are curious, willing to learn, and willing to try tests and treatments to figure out what can help us improve. So, it would seem to be productive to discuss new threads in this light and examine how news like this can help us toward the goal of more patients getting well, instead of tearing each other apart which seems a bit self-destructive as a patient community.
On my journey, it really hasn't been productive to dicker about ME or CFS or ME/CFS. None of them have gotten me tests or treatment. My doctors have found 16 other ICD10 codes that do qualify for diagnostics and treatments, which have been tremendously helpful. And, my doctors and I have also found that reading all the research articles and finding the ones that best match the description of my illness and my labs and then applying the learnings, if possible, to my situation has been driving progress. It has also been helpful to examine pros and cons of concepts in a forum like this, but that's very difficult to do if people derail each thread with debates about the correct name for the disease, the correct criteria, and the correct symptoms, which is ludicrous given the range of patients and their experiences here.
I wonder what will happen as a result of Komaroff's significant, though imperfect article... With all those views, wonder who is reading it and what conclusions they'll come to?