My first thought is that an elusive condition and lack of research go hand in hand. The tougher an issue is the more research it needs. So they always go together.
The history of ME and CFS is the history of people testing what they think it might be, and failing, or establishing biomarkers that are not always replicable, or testing treatments that do not work. This goes back a long, long way.
This in part has little to do with the researchers or their competence. First, they need to test every hypothesis. An hypothesis failing means its one more to tick of the list of possible issues. This is not as glamorous as discovering the mechanism or a cure, but its still important. Second, they discover things along the way, and these help inform the next cycle of testing.
I think stigma for the most part does not affect research (but greatly affects patients). Stigma within academic institutions, and medical institutions, does. Stigma within government bodies that oversee grants also causes problems. Generally stigma leads to us being treated badly. If it biases grant acceptance, or academic approval, then stigma can impact both research and researchers careers.
Where stigma interferes with research and research opportunities I have another name for it ... prejudice. They have decided what ME is or isn't, without sound evidence, and are making decisions based on that. This is particularly bad with researchers who had a pet theory, and it failed to be proven, and then they decided to opt into psychological explanations, or dismiss the disease entirely.
Low quality research, and particularly psychobabble where they claim to have answers but cannot provide sound evidence of such answers, does bias things a lot. Its one of the reasons I oppose psychobabble, quite apart from it being irrational and without a scientific basis.
There is another story here, one I have told before and recently noticed Montoya saying the same thing. Things don't go solved till we have the technology to solve them. The deeper the issue is in the complex morass of biochemistry and physiology, the bigger the breakthrough is required to solve it. The latest technologies used in ME are mass spectrometry and the nanoneedle, plus perhaps more I am not aware of, or don't know much about, like the latest advances in MRI. Prior to that we had the 2 day CPET. Its not longer the latest test though, just still very important.
MS, gastric ulcers, heart disease, many cancers .. these all needed technological breakthroughs to make advances. Technology is critical. Sometimes though it does not take much. In the case of gastric ulcers, H. pylori was roughly identified about 108 years before Barry Marshal proved it was causative. Identified 108 years earlier, not proven as causative, and it was really the entire family that was identified, not the specific pathogen. So there are cases where breakthroughs are not just from technology, but someone taking that extra step and testing the prevailing assumptions. Barry Marshal deserves his Nobel prize, as did his collaborators.
