ME is a disease with lower quality of life than most diseases. If one only considers mortality rate, I guess it would be hard to see ME as a genuine public emergency like the AIDS crisis. Although patients do die from suicide (which may be taken as evidence that it deserves the "psych " label although suicide when faced with an incurable disease like this is clearly rational) at a higher rate than the general population , they dont tend to die directly of this illness. But if you go by quality of life and also amount of people affected , this illness would be seen as a public health emergency. I'm aware of NIHs rules for funding and that they generally don't make allocations for specific disease but I'm sure that agencies like NIH can make exceptions in the case of a public health crisis. Or at least appeal to congress for more help. So my question to you is--do you consider this an emergency/crisis or not? If it's not a crisis, i guess the "wait and see" approach is morally justifiable.
I would like to repeat my question here. Its not some kind of gotcha. It's a very genuine and important question.
I know that throwing funding at a problem doesn't automatically make it solved. But I have to think that if the NIH or CDC thought this was a public health emergency the way, say, an ebola outbreak in the United states was , that thwy would throw a ton of funding at the problem , but not just as a one time thing... And they would not stop until it's solved.
People who actually want to get an answer, rather than just have a job in a lab or be famous.
This is a noble thought but while there is basic science that can be done without much funding there seems to be still a connection between financial resources and ability to work quickly on a problem. Expensive equipment , more lab assistants, all these things that require more pay.
We will probably not see eye to eye on this, although I think we probably see eye to eye on one thing: that the existing literature for this illness is low quality and does not tell us that much about the illness. Which is why I think it's so urgent that we accelerate the pace of research.
You have your experience as a scientist that informs your viewpoint. I have the unfortunate experience to have severe ME. I can say honestly that I doubt I will make it another year with this disease if we do not see breakthroughs. I don't want false hope and i know at this rate nothing is coming. What I do hold onto is the possibility that , even if patients are not experts on science, they can somehow pressure government bodies to fund research into this illness at levels commensurate with the disease burden.
I do have to ask, if you had severe ME I wonder if your opinion on this would be different. Before ME, I had experienced many kinds of ordinary suffering, broken legs, fevers, broken heart, depression and anxiety--and this beats all of them by a mile. It's hard to even describe how hellish it is to have
to watch your life disappear and not have anyone around you do anything about it. I really thought of doctors as superhuman before this.
If the NIH spends 500 million on ME research and nothing comes of it then we can guarantee that they will say what the MRC said in 2002 - we have poured money into biomedical research and got nothing out so let's forget it.
I guess I don't think that there are zero competent scientists in the field. While i share your opinions that research up to this point has been low quality I do think part of that is due to low funding. Low funding creates low quantity , low speed of replication , etc. I do think there are at least a few competent scientists in the field and I also think that generous grant grant opportunities could bring in the kind of scientists you're talking about --competent people from a different field without a particularly narrow focus on ME.
