Not much is known about ME and more research is needed into causes, diagnostics, management of the condition, drug control and possible cures. However it's not a killer (not widely at least) and research funding is hard to come by.
Every so often I get an email from an ME group I belong to. Here's the most recent:
On the 1st of September Simon Winnall and Ian Winstanley embark on a great expedition to North-East Tanzania to climb Mount Kilimanjaro, the highest peak in Africa at 5,895 m. Simon and Ian funded the trip themselves, so all money raised will help fund the ME Research UK research programme. Simon's sister, Nikki Winnall, has suffered from severe ME for the last 8 years and is currently bed-bound with bouts of total paralysis, hence their wish to use the expedition to raise funds for research. As Simon says, "When Nikki was fit she used to love the mountains; she once walked from North to South Wales to raise money for Great Ormond Street Hospital. I hope by attempting to climb Mount Kilimanjaro we can raise funds and the profile of ME research." They expect that the climb will take 6 days, with the main challenge coming from the extreme altitude since there is only half the air to breath at the summit compared with sea level.
You can sponsor them by visiting their own webpage to download a sponsorship form, or you can sponsor them online via their own justgiving page www.justgiving.com/winnall . The guys will post a Kilimanjaro blog once they return so you can read about their adventures.
Steve looked across and said "oh, my mum's done that".
So let's not pretend these guys are doing something amazing by "funding the trip themselves" and struggling bravely up the mountain against all the odds to selflessly raise money for the poor, pathetic bedbound sister (get those violins going). It's two lads going on a fun holiday, with an aim to do something that grandmothers can do. BUT it is damn good of them to think of using their holiday jaunt to try and raise money to help people like Nikki, and I hope they do well.
I also hope they take lots of photos for her, and try not to make her be too pathetically grateful about whatever they raise.