Oh God....I am freaking a little. Its not going to be 17 years is it??? I had envisioned 5....10 at most for some new treatments to help us. We have had this conversation before....but 17 freaking years...anyone?
Most of what I'm going to post is atiose i.e.since Alex has covered this so well above
Nancy Klimas is one of the authors of a paper looking at drug repurposing as a possible means of treating Gulf War syndrome [Title: "Using gene expression signatures to identify novel treatment strategies in gulf war illness"]. Here are a couple of extracts:
1) "repurposing of Food and Drug Administration (FDA) approved drugs offers a fast cost effective solution for discovering novel treatments. This is all the more true for conditions with no known treatments."
2) "Conclusion
Of the associated drugs, immunosuppressants currently used in treating rheumatoid arthritis, and hormone based therapies were identified as the best available candidates for treating GWI symptoms."
Ron Davis, from memory said that the focus should be on understanding the disease. Look at the conclusions above (point 2) "immunosuppressants" and "hormone based therapies". There are a bunch of highly respected scientists working on the immune system and one who I can think of working on hormones in ME/CFS (Jonas Bergquist -funded by OMF). Once you understand the disease then (as Alex has said) a doctor can prescribe off label i.e. any drug proven to be effective.
Ron Davis has also recently said that we may not need to develop a drug [
https://www.omf.ngo/2018/05/01/dr-ron-davis-wbur-video/ - about minutes into the video]. Possibly this was in response to Jen Brae's comment since she was involved in the same panel discussion.
At this stage we are making statements based on limited knowledge. When you know the cause of your disease then you can say with more certainty.
Alex is correct i.e.we'll need advocacy to deliver diagnostic tests and treatment. A guy once said to me that a politician wants to know what response they will get to decision x, y, z i.e. when they are canvassing for reelection. Here's my example (based on part in reality) take a candidate who has supported the delivered of access to an improved treatment (expensive drug) for breast cancer. Half the doors they knock will be opened by a women and there will be an opportunity for the candidate to tell the good news story i.e. I delivered ---. Ron Davis reckons that the different expression of symptoms may be relevant [same video]; so possibly we can benefit from the leverage those with other diseases (e.g. lupus?) have. We can look at Jen Brae's impressive advocacy work as a way forward.
For all of my comments above I still fear that some of those with ME/CFS will have to wait years for proper diagnosis and treatment. However, for some of those with ME/CFS, I think that current research COULD POTENTIALLY deliver significant improvements regarding diagnosis and the management of the disease e.g. in a relatively short time period (2 - 5 years).
To pick up on one of Alex's points; we need to contribute to the advocacy. As I think Cort Johnson said we are fortunate to have Jen Brae as an advocate.
