My "problem" with this study is that i'm not looking for something that despite there's something major wrong somewhere inside of me will give me something that will make me feel a bit better but will leave me in this state for ever.
I don't think we need "palliative" care (is this the right word for us? i mean something that will only improve how you feel while you're still stuck or going down), we need them to find what's wrong and find how to fix it. So if resources are so limited as they seem to be, i think they should be spent in that direction. But of course it's good if you've found something that helps you.
I know that a lot of people have that point of view, and I understand that argument, but I do strongly disagree, I think it's a bad mistake to think about things that way, even though it's a common way to think.
Of course it should be the top priority to find our what ME/CFS really is, how it works, what is wrong. To try to understand the disease, so that you can get to the cause. Then -
maybe - you will find it is possible to permanently "fix" or "cure" the problem, and hopefully you will at least be able to stop more people getting it in future.
Also I agree that if we are looking at certain specific research budgets, and those budgets are very small, then while those budgets are far too small, there is an argument to concentrate all that money on fundamental research like you say.
However...
For a start we don't know where the money came from for this study. It didn't come from the MRC for sure, and it didn't come from the MEA, they just reported the study. So it depends where the money came from, whether what you are saying applies. Nestle were involved in the study. If they funded some or all of it, and that money is all new money, then the argument does not apply.
Then, I'm afraid, if we are realistic, as we should be, we have to consider: there are conditions that are in practice incurable, and there are even perhaps conditions that are
in principle incurable. Until we know much more about exactly what "ME/CFS" is, we just don't know for sure whether it will ever be possible or realistic to find a cure. A retrovirus is actually a pretty classic examples of this. If it has overwritten sections of your DNA, how do you propose to get that DNA back? Main contender for an answer that I have heard, is to engineer nano-machines that are programmed to edit the DNA directly. But solutions like that might not happen this century. The sorts of problems that need to be solved in order to talk about cures for retroviral infections - well, some of them are
very hard problems indeed. These are harsh truths, but we have to be realistic: these things are possible.
But this case doesn't have to mean there is no hope though, not at all. It's possible something is ultimately incurable but you may be able recover 99% functionality, or be able to be perfectly OK so long as you take treatment Y once a year, or it's possible that something is not curable but you can get 100% better so long as you avoid toxin Z, and we all now decide to phase out toxin Z...
Or: suppose it
can be cured, but it will take 20 years to find a cure. Do you want to just sit and wait for that cure, and research only that, or do you want to spend 10% of the money looking for effective pain relief, if there's a chance you can answer that question in 2 or 3 years? I think most people would rather wait 22 years and have no pain during that time, rather than wait for only 20 years in chronic pain.
Of course these are all abstract examples, because we just never know how long an unknown problem will take to solve. Even more importantly, we just don't know what kind of research might lead to a breakthrough - it could come from almost anywhere. How do you want to understand the condition; how will you discover clues? Maybe the big clue that helps us understand what is happening could come from a finding like this! Suppose somebody reads this study and says "aha! That gives me an idea!" and they put it together with some other piece of information and unlock the puzzle. You just can't predict what might be important.
So I agree that it's most important to try to understand the illness at a fundamental level, but I think the intelligent approach is to cast the net as wide as you can, try many different approaches, gather as much information as possible, and increase your chances of success that way. I also think it's intelligent to look at things that are helpful to some people, and to explore those things and find out
why they help. That is sure to lead to more information about the condition, and that can easily be how you work towards a complete understanding and a complete cure. Pain relief is worth researching as well. It is not an "all or nothing" approach that we need.
Finally, coming back to this particular study. OK: it's pretty thin, pretty weak. But it
is scientific evidence of people getting worse after eating the white chocolate, for example: that can become evidence to prove that there is something physically wrong. It is scientific evidence that here is something that helps, a little bit; next questions:
why does it help? and can we find 10 more things that help just a little bit each? Can a powerful 'flavinoid pill' have a more powerful effect? All of this can be useful.
I don't want to have to defend that this particular study was worth doing; it certainly doesn't seem like it was worth spending very much money on, but who knows? I just think that we need as much good, solid research as we can get, from as wide a range of sources as we can get, looking at lots of different angles, including exploring what makes somebody feel better or worse. Then maybe the whole picture will come together, one day...