SOC
Senior Member
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I agree. Anything decent is better than nothing. We have to make forward progress even if it's small and/or relatively minor in terms of overall impact on the disease.I think that if we let everything be coloured by (understandable) resentment over how little has been done for us in the past, we'll end up greeting every good new thing as though it's a piece of shit and I think we've seen a lot of that lately.
I think it's important not to drive researchers away who are, as msf says, seriously trying to help us with the resources available to them. It's not their fault that they're having to start where they are and that we're 20 or 30 years behind where we should be.
I think we should welcome this kind of initiative.
My frustration is that research money is being spent on side issues when we don't have the research funding for the main, core issues. Shouldn't THAT come first? Shouldn't the focus at this point be on finding out what this illness really is, getting biomarkers, addressing things closer to the root? Then we can work on the secondary details. Poor sleep is not at the core of ME/CFS. That isn't to say that improving sleep wouldn't make a lot of us feel better. I know that sleep meds have made my life more bearable. But sleep meds already exist. Most of our top specialists know which ones work best for PWME. It's just a matter of using them. I know that doesn't happen in the UK, so this research may help patients in the UK get better treatment for sleep disorders related the ME/CFS. That's good, but it's not a big thing in the overall progress in ME/CFS research.
I'm grateful for all the decent research dribs and drabs we get, but I'm also a bit angry that I have to be grateful for these relatively piddly research projects. It feels like being grateful for getting a half cup of rice to eat every day. If you're starving, the half cup of rice is a big deal, but it's not really what you need and it's not solving the real problem of why you're starving. I'm frustrated that we're getting these dribs and drabs instead of the major research we really need. We deserve better.