Hi all, this is something i have been thinking about for a very long time. It's great that people raise funds for research as this will help us all in the long run, hopefully with breakthroughs that will provide answers to the cause(s) of M.E and bring treatments.
However, i am aware that there are treatments available now that are helping many to improve the quality of their lives and enable better functioning. For some it is methylation treatments, for other immune modualtors or antivirals. The one thing that links all of these is tests, and specialists. This all costs money.
There are many PWME who are living in very desperate situations, both in the US, Europe and worldwide, who cannot afford these tests and treatments and so they have such little hope. Some people post on PR and are bombarded with suggestions for tests, Doctors, supplements and drugs they should try. Some here simply cant afford even the most basis of these things, which could save lives and help people to help themselves if they had a little more functioning.
I dont know how it would work, and im not suggesting i set it up and run it on my own - but my idea is for a bursary system whereby people could apply for funds to pay for tests or treatments etc - or help with moving to a non moldy house etc. I have no idea about how the funds would be raised - but im sure some brainstorming could come up with some good suggestions. It would be great if this could be a PR charity - and perhaps some M.E docs could be encouraged to help the scheme by asking some of their patients to pay into a bursary scheme eg top earners pay 10% more (this is off the top of my head) of course it would also have to be administered by someone - who would be eligable and how would they apply would have to be worked out.
I just would love to see more people able to take advantage of the Doctors and treatments we already have, that some people have really benefited from.
What do you think?
Justy x
However, i am aware that there are treatments available now that are helping many to improve the quality of their lives and enable better functioning. For some it is methylation treatments, for other immune modualtors or antivirals. The one thing that links all of these is tests, and specialists. This all costs money.
There are many PWME who are living in very desperate situations, both in the US, Europe and worldwide, who cannot afford these tests and treatments and so they have such little hope. Some people post on PR and are bombarded with suggestions for tests, Doctors, supplements and drugs they should try. Some here simply cant afford even the most basis of these things, which could save lives and help people to help themselves if they had a little more functioning.
I dont know how it would work, and im not suggesting i set it up and run it on my own - but my idea is for a bursary system whereby people could apply for funds to pay for tests or treatments etc - or help with moving to a non moldy house etc. I have no idea about how the funds would be raised - but im sure some brainstorming could come up with some good suggestions. It would be great if this could be a PR charity - and perhaps some M.E docs could be encouraged to help the scheme by asking some of their patients to pay into a bursary scheme eg top earners pay 10% more (this is off the top of my head) of course it would also have to be administered by someone - who would be eligable and how would they apply would have to be worked out.
I just would love to see more people able to take advantage of the Doctors and treatments we already have, that some people have really benefited from.
What do you think?
Justy x