I've been ill for about 6 or 7 years now, and for the past 3 to 4 years I've been doing my little bit to campaign for a better deal for ME patients, while watching so many other individuals and organisations in our community do an immense amount of work campaigning for our community. We've had MP's, members of the House of Lords, patient groups and organisations, scientists and charities speak up for us. And then the latest UK research funding figures came out for 2009/10, and I realised that the progress we have made can only be illustrated by walking on a treadmill that's going in the opposite direction faster than we are walking. I'm feeling really defeated at the moment, in terms of making any progress with UK government policy, research and services for ME. And then to know that the LP research study on children is being carried out right now, as we continue to protest, with unknown damage being done to the children, makes me very sad. The only thing that gives me some reason to carry on being politically active is to think where we might have been if the ME community had been doing nothing... In which case Wessely may well have got his way entirely. I apologise to everyone for being so negative and for feeling so defeated, but I think I'm being realistic in pointing out that we seem to have achieved nothing! It was the latest MRC funding figures that got to me, along with the ongoing LP study on children. Together, they have both made me feel that our community is very disenfranchised right now, and politically very impotent. If anyone wants to give me a moral boost here, and tell me I'm wrong, then you'd be very welcome. Maybe I'm missing something. I'm very tempted to do nothing, forget it all, and wait for the XMRV truth to unfold. I think the UK ME community needs to have a big discussion about where we are, where we are heading, what we want, where we want to be heading, and how we can go about getting there. And I think we need to combine our resources and our efforts to get to where we want to be. The UK ME community seems to be very fragmented and uncoordinated. I think the UK ME community needs to come together, combine its resources and efforts, coordinate its actions, and work as a whole. It's probably impossible to achieve this, but the way we are working right now, seems to be almost pointless. Apologies again for being so negative and defeatist, but the evidence is in the research funding figures, and the fact that services for ME are still solely based on CBT, and are not improving. I'd like to make a list of politically active UK forums and UK patient organisations that I could send my ideas to, about coordinating our efforts. Does anyone know of any politically oriented forums in the UK where I might make these suggestions, or is work already being carried out in the UK to coordinate the efforts of the ME community? If so, does anyone know who is involved? Generally, I'm feeling frustrated and defeated and I think our community is politically impotent... So any feedback on this would be welcome.