Pebble,
I've seen your other thread and now had a chance to read through this one. Tried to watch the film but my concentration is so bad today that I cannot follow it. Will try again later this week.
Really glad to see this discussion. In particular I like the fact that you make long posts but space it/break it up well so I can read parts of it.
My experience is from decades of belonging to, starting and ending support group for ME. I've belonged to both physical and internet support groups.
In the UK we have a ME Association and then a series of support group. The leaders of these local groups sound like what you are referring to? (and I am not one at the moment).Overall they do a tremendous job. They do, in some cases have things like online groups, penpals and support groups that meet. They have lists of useful doctors, info sheets, newslettersand other resources.
Once a UK ME group tried to set up a buddy system (as per the days of AIDS) but no one volunteered. The demand for the things that you asked about (services) would need a team of staff for each town to provide and managers. It would be huge and impossible for the badly sick to run. Due to that it could easily become corrupt.
Sometimes the group leaders get together to work on a national project. Many find local demands stop them doing things like this. They are already over-extended.
I think that the first group I set up was very good. We arranged meetings and had a penpal/phone list. We had more highly functioning people to run helplines and to campaign locally for us. We had lists of good local doctors and arranged meetings with hospitals. Produced information. arranged visits for the housebound. This was before CFS and the internet. Things changed and they weren't all good.
Currently I belong to several small or closed internet groups who campaign for ME on a national level. I've finally found kindred spirits and I'm not alone. None live close to me.
The reason that I gave up as a support group leader in one case was because of the huge number of chronically fatigued people, very upset and long term mentally ill people who tried to join the group. I couldn't cope with the care/help that they needed and I didn't understand their problems. This made me feel very lonely. I had my time abused, people lied to me, stole from my home, borrowed the library and didn't return things and tried to take over the group with their own ideas. We had people trying to sell complementary therapies and cures. So called patients joined just to do this. It was a nightmare. I was threatened and stalked.
Anyone setting up a group or trying to join a group needs to know exactly what illness it is for and this needs to be strictly policed. There needs to be common goals and a safeguard for protecting these. That's what works for me. I need to get clear boundaries now.
I find that now, in any geographical area I've been, that I simply can not find enough people with ME (as defined by Ramsay and my individual interest or the Canadian def) to finance a group and keep it going. PWME are usually too sick to come to meetings, organise things and their family members are sometimes strangely withdrawn and passive. Many of the long term ME people have now lost their parents and been abandoned by families and friends.
I just didn't find enough people I had the same goals with to set up groups often. We could widen the net of people and include others but it could possibly get very nasty. People start fighting over resources. Different goals and ideas over the illness. The housebound and bedbound get ignored. In the UK we have many desperate people who are fighting for benefits, fighting for treatment, housing and in a terrible state.
What I did in the end was find groups of ME people on a national level that I could work with and do this by email, mail, meetings once in a while and telephone.
It's a miracle though to find 2 ME people who can do much of this on an ongoing level. People get so sick that they cannot go on and projects take years. Many PWME cannot use the internet so it's not turned out to be the huge advantage that we thought.
I need local help and support but there is no one to provide it to me. Every single local ME person that I know is fighting for their lives. They are facing benefit cuts, poverty and family rejection. Others I know a little further afield who are in better physical condition are strangely passive and won't help others less fortunate. This is our stumbling block.
We need better help from the people who claim to have recovered. Why do we only hear from them when they want to sell us something? Better help from families. Why won't they lobby for us (family members who can anyway as there are entire families with ME). That is where our problem. We spend time fighting the established charities locally for resources as things are not set up for the housebound, seriously long term ill.
Time has a habit of eroding some positive changes. I negotiate with one SHA locally and then it changes. Set up one system and then we lose financing. Reach agreement with one govenment and then it's gone. Paid workers leave and are unreliable. Local businesses change owners all the time. Volunteers come and go too rapidly.
I need to help things move forward for me and PWME. It's been nearly 30 years. I'm probably not explaining this well but I now like to work on the big picture.
That's why I have given up on local ideas and now spend my time on inter/national campaigning projects instead. I am no longer lonely and isolated.
Sorry this is such a long ramble. Hope it helps someone.
