Join and support charities or create them (if you don't happen to think they are doing enough/what you want) perhaps? How many people have been supposedly diagnosed with this condition?
UK 250,000 - 1,300,000 (depending on your prevalence data). How many belong/support existing charities? A mere fraction. Minuscule. Nada. I think the largest charities over here have barely 3-4,000 members. Why? (Rhetorical question kind of...)
When I look at other neuro research in the UK I see charities making major contributions. I mean in comparison to 'us' these are well organised, well funded and well supported. So there is a problem I think.
Half in not most the people who comment on the ME Association Facebook page or on their website are not members. Why? (Rhetorical question kind of...) When does 'advocacy' become all about criticism? Shouldn't it also be about support and promotion of a cause as well?
Anyway, it seems to me that in order to gain momentum and weight with the 'authorities' one needs to be a charity of sorts and to act on behalf of ones members. All these 'pressure groups' one sees about the place I am not convinced carry sufficient power or organisation. Criticising the 'system' ain't gonna get you nowhere. One needs to work with these people to change things not lay into them.
So we need good ME/CFS organisations with good projects/ actions and then we need to show the support of many patients. The organisations need to talk to the governements and ask them about their plans to increase funding, build medical centres,....they should tell us their plans for it and if they will not keep their promisses or we will not be glad with their plans then the patients have to take actions (letters, faxing, demonstrations,....). I think its really time for strong advocacy - with the nice one we didnt move.
I also would like to see more funding. I think there are 3 sourcess:
- federal funding
- patients donations
- private donors
we and our organisations have to advocate better for federal funding which is really poor. They know that we have right for more money but they know that till now we are really weak community, bad organised so they just ignore us.
I think also patients should also donate if they can. But it also needs better organsation. Now, when I want to donate somewhere I have impression that my money will not help because noone does it. I think if the patients will see that the others donate and they feel that its worth - they will donate. I think like this we could get some millions a year for research studies.
I agree with what the two of you have said here. We are many, this is not a rare disease. So the circumstances, apart from our poor health and the uncertainty and sometimes controversy around the illness, are actually quite favourable for us. The prevalence is quite high, the economic impact is severe, we are a big potential market for the pharmaceutical industry, it sounds like things should move by themselves, because the necessary ingredients are there. Unfortunately this is not what happens. Why?
I don't know the answer to that questions, but i guess there are a number of reasons. I feel as if we are still at a point where we have not crossed a certain threshold yet, from where things could then pick up steam and would start to roll. As soon as a biomarker is identified and accepted this might happen. But for the moment it seems to be us who have to give the push.
So, as other people on this thread have said, i think in order to be effective, we need organisations who will do that job. Individuals can have an impact too, but i don't think it's enough. Governments (and we need them), medical institutions, large donors, etc., they all need a serious and reliable partner they can work with. And this can only be an organisation of some sort.
That's why i think people should join and/or support these organisations, and as has been said, found new ones, if they are not happy with the existing ones. And the organisations should work together, where that is possible and makes sense. The Coalition 4 ME/CFS and EMEA are good examples.
At least here in Switzerland, where i'm part of an association, i can see that a big part of the problem probably lies within the organisations. Members often have wrong ideas about ME/CFS and are pursuing tracks that won't help them much and won't move the cause forward. I'm talking about things like homeopathy and such. I've met a number of people who actually believe they can beat ME/CFS with the help of that kind of alternative practitioners. It's like they seem to think ME/CFS means some sort of individual journey, where you need to try one approach after the other to find out what works for you and get closer and closer to getting your health back. I don't think that makes much sense, since it's very costly, consumes a lot of time and energy, and is not the way things work with any other illness i know about. Also it's simply not supported by scientific evidence.
A number of people i've met seem to want help and an answer today, no matter wheter it makes sense, from a scientific point of view or not. And then they forget to make that investment in the future, to push for more research and to donate to it, if possible, which will, at least in my opinion, leave them in this loop forever, trying one practitioner, one method after the other. I think people have to understand that at the moment, unfortunately, the mechanism behind ME/CFS is not known, and there is no treatment that will make a majority of people well again, and so, while they are of course free to go look around for something that might help them, they should do whatever they can to make sure there is scientific, serious, research being conducted in order to finally find out what ME/CFS is and how it can be treated successfully. Where there is not yet enough understanding of ME/CFS and how research works, how it was possible to find treatments for other illnesses, like we want it to happen in our case as well, organisations first have to educate their members about these things. Before this has happened, an organisation will not be able to do much.