I think one of the ways things will move along for this community is via the courts.
However, getting interest in that is difficult...money not being available...
That is one possible route but how?
Who do we sue and on what grounds?
I don't say this to derail your idea (which is a common way to do things, devils advocating something into oblivion is extremely common) but i say it as if we are to go this route how do we do it?
That's genuinely not true. My OH has worked for various cancer charities, lung charities, a heart charity, asthma etc. etc. All do basic research funding for initial studies that are too small and too speculative to get public funding. The charities' roles in most conditions is to fund studies to get enough initial results to put in a research application for a wider study. This is not an ME/CFS thing.
All roads lead to Rome.
We can accept a bunch of ridiculous nonsense that limits ourselves or we can say we will forge a path to get where we want to go no matter what.
We don't ignore the lessons of history or other diseases but we should not constrain ourselves by them or accept when organizations who continue to act in bad faith say we are now your friends.
Also we already have a fair bit of private money, how much of OMF's funding is public beyond the one study? I seem to recall just the Pineapple fund donating more money then NIH.
Thing is, the NIH doesn't generate research applications. Shouting at it to do more is pointless if it is not receiving sufficient applications and if it is not rejecting an unusually high proportion of ME/CFS applications; unless you want it to accept lower quality applications than for other diseases. That suggests the issue is earlier in the life-cycle: either not enough funding for pilot studies or not enough researchers interested in it.
Two responses.
Your saying that people who have applied and who we are involved with ME research today are all substandard actors, OMF, Nobel prize winners, Dr Klimas and a whole host of others are simply not up to ME research. Thats what your saying.
That also leads to the implication that we need to start from scratch and write off every asset we currently have.
Secondly if we choose to believe an organization who is obviously BSing us then why are we bothering at all?
We might as well accept this disease will never be treated in our lifetime because we accept failure by playing by rules designed for failure.
If many want to go that route (even if they deny it) then more power to you.
Perhaps the other thread i started about euthanasia and at what point should be consider it should be our focus instead of research towards a treatment and cure. Why hedge our bets when we are going to lose anyways or go in circles that will have us chasing our tails for the rest of our lives?
Lets look at the arguments here
We need private research to get public money - there is no law that says this and its a divide and conquer argument
We want younger researchers - If you have no future in a field why would you enter it?
Ignore malfeasance up till now because we have turned a new leaf - gaslighting, gaslighting, gaslighting. How gullible are we?
There are not enough applications - they have driven everyone away and how many times should they cry wolf?
We only fund a percentage - Then tell us that percentage and fix that stupidity. There is no law saying you can only fund a percentage of applications
There are not enough people in the field - you don't get more people by making it impossible to enter then claiming your not.
Its a chicken an the egg problem - In the past they have told peoeple not to apply and more then a few anecdotes have mentioned how its a career ender to enter.
Its a Mexican standoff - NIH knows the good players, they can approach them and ask them to submit applications again or review the denied ones and mention they are willing to approve variations of them now if updated. Maybe Stanford will once again become a legitimate medical institution or maybe all funding for other diseases will now be withdrawn if they are affiliated with Stanford...
So the question is are we willing to let them play us? If the answer is yes then we must lie in the bed we make. Stockholm syndrome, falling for lies /gaslighting and jumping through hoop after hoop means we will fail.
If they want to act in good faith its not hard to do. This is not happening at present, they are playing us and winning.
