I agree Esther, its a real problem. Thats why in my eyes it needs to be initiated by a recognised body, and it would need to be done in a profesional manner, rather than being done by just any old sufferer out there. I think making it an international effort would be beneficial too, even if that does make it more tricky to coordinate.
Alex - yeah it needs to be done properly. In my mind i could do it, its the sort of thing i was good at once, but in reality i woudlnt have the energy to pull it off well. Same goes for most people with ME I think, at least the last part...
I would not put myself in the most severe category for CFS but neither am I a mild case.
I've been able to complete a couple things by doing the following:
1) Accept that it won't be perfect and that good is reasonable enough. I am a perfectionist at heart but I can change.
2) Do a little but do it regularly. Big things can be done with small bites here and there. You know that old fable about
the old man who wanted to move a mountain but only had a spoon? No one thought he could do it but a spoonful
every hour for years does lead to success. Find a hero - a real person, personally known to you or someone famous - and get to know them. A lot of great people did not achieve overnight success; it took them years of effort and discipline. We only see the end product. Remember Nelson Mandela was in jail for 27 years before emerging
as South Africa's leader. Remember Laura Hillenbrand -- she took 7 years to write her second book due to CFS.
3) Prioritize. Figure out what you want to concentrate on, don't get distracted, say "no" to distracting things as possible.
4) Find others with similar goals. There are definitely people involved with advocacy on this forum and offline. Many
spoons move mountains faster. Join a local support group (in-person or online) if there is one near you; join
national/ state groups.
Too many people's greatest enemies are themselves -- others may limit you and you may have no control over it but you do have control over your own negative self-talk: I'm too sick, it won't be effective, I'm not smart enough, one letter won't matter, etc. etc. etc. The excuses could go on all day. A lot of people have great ideas and wonderful words but actions >>> words everytime. If you do something and it doesn't work out as you planned -- that's OK, learn from it and do better next time. To quote Mike Myers, from a very bad movie, "There is no such thing as failure; only early attempts at success."
Write a post here everyday? Write one less post daily, use that energy instead to write a short letter EVERY day (or every week, or every month) to someone influential (your mayor, the local paper, your Congressman, your local medical school, etc.); sure, you may not get a response but you never know. Ask for their help. Be polite, be creative. I write people I don't know about CFS and I do get a response, mostly positive.
In general, not just for CFS, people say they want this or they want that but too few are willing to do what it takes to get there. They wait instead for the result to fall into their laps or for others to do the heavy lifting. Ian Lipkin isn't the first scientist to encourage people with CFS to advocate more; Dr. Dan Peterson said patients weren't angry enough and they're both right.
