Firstly Foggy Friends has closed its 'News, Views, Campaigns and Petitions forum, because its too difficult to moderate apparently, so I can no longer so easily keep up with the latest ME news or debate issues close to my heart. Its true I read the ME Research and Invest in ME newsletters but my main avenue of socialising with other sufferers is now closed off. I always thought they were such a democratic, well moderated bunch of folks too
I've been complaining about it to a man called cazzh who offered to moderate it so it could be reopened. Needless to say they took no interest;
Hi,
Just read your comment on the closing down of the 'News, etc' forum and would like to say I'd really appreciate it if you either moderated the forum so it could be reopened or started something else like it for people like me who want to have serious discussions can do.
Because we, as an ME community, need to have serious discussions. So that the parents of 22 year year old women like Joanne Butler aren't persecuted to the extent they have to leave their home, when their daughter dies of natural causes, because people refuse to admit ME is a fatal disease. So that children and severely affected adults aren't torn away from their loving families to be tortured in mental hospitals. So that people like 19 year old Alison Hunter don't die of mutiple, horrendous abnormalities that wouldn't be out of place in a sci-fi film. So that children like me don't grow up bedridden in a blacked out room with triple glazing
We need to help all our fellow sufferers on a world wide level, not just a personal one. There is more serious things than a few hard words and hurt feelings at stake
There are things that can help us but we need to fight for them. We all deserve a point of view so that we can all benefit in the way we need.
There are enough ME chat rooms for the pretty ones who only want to chat about craft, shopping and kittens. We need somewhere where those who want to fight can debate, exchange ideas and support each other and those that really suffer
Thank you
Rosa x
His reply;
Hi Rosa and thanks for you message. I thought nobody had noticed my posts actually, lol!
Well I offered help and was contacted by no-one privately plus then one of the mods stated on the thread that they were not looking to expand the team etc? Well I have plenty of experience to offer where moderating difficult topics on busy forums is concered but they would rather carry on just closing threads down and removing boards instead so I shan't be offering again. As for running my own forum, that is a hell of a lot of work (have done it before - not ME related) and is not a job for just one person. It is not that easy to get 'good' mods either though with the pet forum I ran back then, I knew all of my mods in real life too and also gave them some training.
I agree with you that we should be able to discuss serious topics but now it seems that anything that remotely resembles 'politics' is going to get suppressed.
Why we can not be treated like adults and be moderated properly instead of them taking the easy way and just not allowing important, serious topics is quite beyond me but at the end of the day, it is their forum and they can run it any way they like. If they want to kill the forum slowly by refusing to allow civilised debate under the guidance of experienced and impartial mods then that's their look out. 
I may start my own ME political forum so if you'd be interested in that, let me know!
Another source of irritation is my local GPs. They've shown no interest in the results of Dr Wights tests, never offer me any interest or support, didn't even fill in my prescription for LDN. Basically they're a waste of time. I'm finally going to leave them though. So we soldier on...
All that and toothache on top :p
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