There are no law out there saying that a pharmaceutical company is obligated to put a ME-designated drug on the market, which implies to fund clinical trials and pay for drug development.
This is not how things go, unfortunately. Pharma follows the money. Cancer, HIV, erectile dysfunction, male pattern baldness is where things are at.
Moreover, in order to 'get' clinical trials, there needs to be one of our ME expert, ideally, to work with pharma. Which means, we need a larger base of physicians experienced with ME and co-morbidities. Centers of Excellence would help this process greatly.
Also in order to send a strong message to pharma to invest in ME, we need the Pace trial retracted and the Cochrane reviews demolished as well. Because as of now, the best treatments for ME are CBT and GET.
The best that patients can do is to build a relationship with NIH to ensure the best possible case scenario study, funding opportunities for new researchers to enter the field, and speak with their political representant to vote funding money.
The need for biomarkers is crucial for us to move forward.
Don't blame pharma.
@searcher I am not pointing the finger at you but I am simply commenting on where the conversation has been going