I think there are a wide range of reasons why the field of ME/CFS has been held back; with many of the reasons mentioned in this thread. We know for a fact that there has been a certain amount of wrong-doing, because it has been documented. e.g. the CDC siphoned off funds meant for the CFS program and redirected it to other programs. I think this was said to have come about because of a culture at the CDC which belittled CFS as an entity. Anyone who took CFS seriously was ridiculed. And so it became culturally acceptable within the CDC to divert funds away from the CFS program. How such cultures come about in the first place is probably a mix of things, including ignorance, group-think, self-interest, vested interests, office politics, etc., all playing their part. I think it all comes down to human nature, and the world of ME/CFS reflects the world at large whereby people want to protect their own interests, and some groups are more successful at it than others.
If you get various separate groups of people who all have an interest in the same outcome, but for different reasons, then it can create a tide or a current where everything starts moving in that direction. In the case of ME/CFS, I think we've seen this situation where there are various self-interested groups all pulling in the same direction, but all for their own reasons, and the resulting tide has been moving in a direction that's not in the interests of patients.
Conspiracy might be too strong a word for it, but if conspiracy means two or more people making self-interested plans that happen to harm the interests of others, then conspiracy has had a part to play, as it does in many areas of life. But that doesn't mean a single, widespread or coordinated conspiracy. I think a pattern of behaviour by authorities (health care authorities and government agencies and funding bodies) has fallen into place, because it's suited a large number of players, and this pattern of behaviour can sometimes look like a coordinated conspiracy. Governments have wanted easy answers, so they've accepted the authoritative and easy answers given to them in relation to ME/CFS. Health authorities simply want some answers, rather than no answers, and cognitive-behavioural interventions have provided those easy answers; They're false answers, but they take the pressure off the authorities to be seen to be doing something. Health insurance companies want cheap answers for a long-term expensive health conditions that are difficult to manage: and the cognitive-behavioural model has provided some answers to the insurance industry. The media will go along with the prevailing wind, and run with any story that is presented to them. Funding bodies are inevitably influenced by internal and external politics and pressures, and so are influenced by vested interests: everyone wants the funding for themselves. And the psychiatric lobby in the UK seem to have undue influence over health policy for ME/CFS and funding decisions and possibly certain areas of academia; or at least they have in the past. All these factors have combined into a pretty powerful force that can superficially look like a single widespread conspiracy.
But in reality it's a bit of conspiracy, a huge amount of ignorance, a large degree of convenience, muddle, various politics at play, self-interest, vested interests, group-think, human nature, and cultural norms.
But I think the single biggest issue is simply the vacuum that is created when there is no knowledge. ME/CFS is basically a huge vacuum, so large that it's like a black hole, and it sucks in the whole wide gamut of humanity, with everyone pursuing and promoting their own interests. As soon as this vacuum is filled with some real solid knowledge (ie. a biomarker or treatment), things will be transformed over-night, with such speed, that our feet won't touch the ground and we won't look back on the sordid history of this disease. Just as MS and Parkinson's patients are no longer haunted by times gone by.
That's my take on it anyway. But perhaps I'm playing down the conspiracy angle a bit here - I often think there is much more going on. I do think a degree of conspiracy has been observed and uncovered, but to suggest that there is a single powerful conspiracy playing out against patients' interests is undoubtedly wrong and to suggest it is also counterproductive because people switch off when they hear that kind of talk.
I think we need to continue to fight our corner, to push for more funding and better recognition etc. If my wishes had any influence, then my two priorities would be 1. biomedical research funding and 2. clinical centres of excellence staffed by immunologists, neurologists, rheumatologists, pain specialists, sleep specialists, occupational therapists, counsellors (for those who need help adjusting to chronic illness), and where other potential causes of ME-like symptoms, flu-like symptoms and fatigue are also screened (e.g. by specialists in cancer, autoimmunity, genetic conditions, rare illnesses, infections, sleep conditions, etc.)
