Oh my gosh! I just talked with Ron and he told me what happened in that BBC interview! I'm so shocked! He was warned that the BBC was on the side of PACE and were totally biased. The people in the interview were 1 scientist (Ron), 2 doctors, and one caregiver who has 3 kids with ME/CFS. The first question was something like, Do you support taking sick kids away from their parents when they refuse to follow established protocols? Ron said they all gasped and didn't answer the question but talked about the protocols being totally wrong. Ron told him that the protocols in England are totally barbaric! He told him that England is the laughing stock of the entire world scientific community with regard to the treatment and protocols and bad science on ME/CFS. He said that when they tried to explain what was wrong with the PACE trials that the reporter just interrupted them and asked another question trying to get them to say something he could use to support his already formed ideas supporting the psychiatric model and PACE. He said they all did their best to tell the guy the real story about the British approach and the truth about the disease and how awful patients are treated in England. Ron and the others were all just disgusted. He thinks the guy will likely find some phrase he can use to make it sound like it fits his ideas. Ugh. It'll be interesting to see what he publishes. What the heck is wrong with the BBC? Has it turned into FOX news? I have always loved lots of stuff from the BBC. Gosh. Ashley was so grossed out that she wrote an amazing post for Facebook about it. Get Ashley mad and the woman can write! She's awesome. Here it is:
"If there is one thing you should take away from the disease, Chronic Fatigue Syndrome, it is fear. You should be deeply afraid that it will come for you, or someone you love. It can strike anyone at any time with no rhyme or reason. It is spreading around the country like wild fire with denial from the political world. Imagine a disease like ebola or the end stages of AIDS spreading across the world with no one of power willing to acknowledge it exists. Imagine your mom, your sister, or your son, gets sick and nobody will believe that it is real. But this disease doesn't end your suffering with death or a treatment like ebola or AIDS. This disease leaves you just moments before death for years. You are holding on to life by a thread, fighting with every fiber of your being while the disease laughs at you, because it's not going to kill you, it will leave you in the moment just before death for years, the rest of your life. Imagine that is your family, your loved one, your best friend. Imagine the government and every person around you telling you that there is nothing wrong with them, it isn't real, their disease doesn't really exist. While they are unable to move, bedridden, on feeding tubes in a dark room with no noise or sound. Just imagine that horror and be afraid. Be afraid that it just might choose you, and remember that fear the next time you tell me that my brothers disease isn't real."
I posted this here but I hope the thread doesn't get totally hijacked onto the topic of PACE and the BBC and British protocols. If people want to do that let's start a new thread. And put a link to it here so I can find it!