2) Delusions of power (yours and mine) when it comes to influencing governmental decisions
I wouldn't put it quite that way. Its more that we are not piloting this ship. We can huff and puff from different directions but the prevailing winds, mostly from government, set the course. Its the issue that we are largely excluded in decision making, and that government agencies in many countries are using managerial processes, EBM, in biased ways to get their desired outcomes, either intentionally or fortuitously.
I assert again the IOM process is not science. It never left government. The IOM were subcontracted. Consensus processes are political and managerial. They have their place, and that place is indeed about setting policy, and it can sometimes get it right. However in controversial and under researched topics the risk of serious error and bias are huge. Please note this is risk, not certainty.
Let us look at ME at the UK. The typical ME patient in the UK is offered nothing useful, and there are policies that harm them. The NICE guidelines are not fit for purpose. CBT/GET clinics are worse than white elephants, it appears (and they could do studies to try to refute this if they dared) that these are herds of white elephants raging through the populace and harming sick people who cannot get away. NICE is a government recognized institution that works on EBM principles. The IOM has a similar role but structured differently.
ME is massively under diagnosed in the US and around the world. CFS is more commonly diagnosed, and its massively under diagnosed and misdiagnosed if the data so far is right.
We have very little influence on adoption of ME. Ditto SEID. Ditto getting rid of Fukuda.
Who has influence in research circles are funding agencies and the researchers. A researcher chooses definitions and applies for grants. Lately they have been using PEM based diagnoses, including the CCC. Its that research that has, in my view, had far more impact than all the advocacy we can do. We could probably do more if we could encourage our researchers to use better research definitions more consistently, but our impact on ICD, insurance and the average primary care provider is dismal. One of the best things we ever had was all those researchers supporting the CCC. It was only appropriate that many in advocacy backed them.
Whatever we do now will have to have major impact in just years. The landscape is changing fast and our efforts will likely have to be refocused again in just a few years.
Which means that long term goals are likely to achieve nothing in the current climate. We need to be thinking about short term strategy, and influencing the process for the next review if it happens.
The IOM report promotes increased medical education, a new CDC toolkit, the burying of Fukuda, and non recognition of psychogenic therapies. These are all good things we can capitalize on. This does not mean we should ignore the political travesty that led us here.
The IOM report highlights seriously inadequate funding and research. W can capitalize on that.
Its researchers who decide on definitions. There is nothing stopping any of them using an ME definition, but funding can still cripple their efforts if a grant review panel does not like what they are doing.
We can advocate for more say in the process. We typically get ignored, with a paltry input for a limited time period on a limited range of issues.
This is like my fifth attempt to post this. It keeps failing to post.