It's not grievance politics for people to explore how different aspects of who they are mediates their experience of the disease and discuss how that relates to the broader community. Those concerns may not feel relevant to you, but they are relevant. If more men are pushing harder longer because of societal expectations and making themselves sicker before proper diagnosis and treatment, that's relevant. If black people do the same for differing reasons or receive judgments that discourage seeing doctors and delay diagnosis, that's relevant. If women get mistreated more frequently and more severely by the medical community than men, that's relevant. These are all crude examples, but the things that make us different can radically change how we experience life and attention should be paid to addressing inequities that arise from these differences.
We didn't want dentists on CFSAC when I first got sick because we needed doctors that could better understand our situation and help us to move forward, doctors with relevant expertise and sufficient experience with patients and the disease. The difference Klimas made when she sat on the panel compared with some of those other empty suits was night and day. Just as Klimas' breadth of experience and her personal investment made her a better advocate for patients on that panel than those dentists, so too does a more diverse body of advocates raise the possibility of better, more rounded advocacy that considers the needs of all patients.
And, yes, many things will fall away once the biology is recognized. But even after that, patients' diverse experiences will still matter. If a cure is developed, but only a fraction of patients can afford it, does economics not matter? If you can only get that cure by uprooting your lives and moving to some distant municipality, does your location, family life, etc. not matter? If that cure works less often on black people or latinos or asians because they weren't included in the studies on which it's approval was based, does race and ethnicity not matter?
All these things matter and dismissing them as irrelevant doesn't seem that different to me than people at HHS telling us we should be fine with dentists leading our advisory panel or psychologists reviewing our researchers' grant applications. People want their concerns to be advanced by people who understand their needs, and that's all I see here.
Yes, I agree that qualities outside biology do have relevance, but there is a risk in giving them too much attention. For example, men are under-diagnosed, having had exactly that experience myself I can attest to it. Until recently or even continuing up to now, it's likely that there is under and perhaps over diagnosis for different ethnic groups. Perhaps some ethnicities are more inclined to suggest their doc consider a ME/CFS Dx, perhaps it's for a bundle of other reasons.
To me, why it's uneven is less important than making a correct Dx available to anyone who has our condition, disease or whatever we have. Understanding what the truck it is and creating a sufficient number of
competent ME/CFS specialists a PCP can refer to with valid enough criteria that it doesn't remain a "Dump Difficult Case Here" sign means that one has good odds of eventually getting the right Dx, whether they're 16, 61, man, woman, etc.
Nobody needs to worry about whether you'll be under/over Dx for diabetes, high blood pressure or a compound fracture due to some physically irrelevant social factor. Our disease or diseases will never be so simple to detect or manage, but we can at least get from being a Dx with a vague and inconsistent meaning to something with A) well defined definition(s) and B) a combo of objective and patient reported criteria that approach being reliable. At that point it won't matter what you look like, what will matter is what's broke and how the brokenness can be ameliorated or perhaps cured.
--------------------
"If that cure works less often on black people or latinos or asians"
Well, at least in the USA, none of those are biologically significant and exclusive categories. Latino is meaningless altogether, as a Latino is likely to be partly from Spain, part from other European countries and/or part from whoever settled in the Americas 40,000 years BC. In the USA, someone checked off as black is likely from a combo of Africa (which itself has dozens of ethnicities), Europe, England +/or the Americas pre-15th century. Asia ... it's kinda big. Does that mean India (which caste?), Indonesia, Russia or China? In China, do you mean Han, Mongols or Uyger? Do the Native Americans who immigrated from what is now Russia count as Asians? Or are they Caucasian?
"White" isn't a race; an Italian is not an Inuit, they have demonstrably different appearance, heat/cold tolerance and they thrive on different diets. The Greeks ain't the Danes, they're not even the French. Yet they're all assigned the same bureaucratic checkbox. In the USA, people are classified as white if they don't fit any other official category, making that checkbox almost meaningless. There are not too many people who are 99 44/100 % Anglo-Saxon in the USA, unless you count Elizabeth Warren. Spending very limited resources on the theory that XYZ ethnicity's cells work in a clinically significant different way than QRX's sounds like something from the 18th century.
