I too live in the UK. You mentioned the long waiting lists to see a specialist on the NHS. I have at last found a really good GP. She's been doing all she can to help but thought it better for both of us if I saw a specialist. According to the guidelines you can be referred out of area if there are no local specialists. I couldn't believe that after all these years the NHS would fund my seeing someone who understood this condition. I knew the waiting lists were very long but I just needed to know there was a chance of a step forward. I'm not even getting non ME/CFS problems looked into properly. Two referrals were turned down. This is happening across the board, not just to ME/CFS patients. Governmental pressure to cut down on waiting list times means most referrals where there is no funding contract are being rejected. Now I'm back to doing my own research AGAIN, sourcing and funding my treatments AGAIN, and having to make important decisions without knowing enough facts AGAIN. Hospital wise my local hospital is useless when it comes to CFS/ME. It would be so much better if everyone with this condition had the opportunity to see a genuine expert but it's going to take a lot more goodwill and effort on the part of too many of the UKs medical profession.