Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME. Dr. Dafoe’s son and Ashley’s brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell.
These statements were read at the Sacramento California rally on June 2, 2017.
“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 brother’s disease isn’t real. ”
“I send my greetings to everyone!
“I wish I could be there with you. My husband, Ron Davis, and daughter, Ashley Haugen, are in London at the Invest in ME International Research Conference, so I must stay home with our son, who is severely ill and bedridden with CFS and can’t speak, talk, move, or eat. We can’t ever all go anywhere together. This highlights that this horrid disease affects much more than just the patient! Caregivers, family members, friends, everyone who knows and loves the patient is very significantly affected. Sad, desperate, despondent. And this has been going on for over 40 years for millions of Americans and people all over the world! It’s so unbelievable that such ill people could be ignored, not believed, and left alone with few resources and no help from medicine or our government! I often feel like I’m in some kind of surreal horror movie. I look at my beautiful, gentle, creative, amazing son, who could be contributing so much to the world, and who desperately wants to, and then I think of my brilliant scientist husband who has the ability to figure out this disease, and then I realize that neither our government, nor many other sources of funds have stepped up to make sure that this disease is figured out and dealt with, just like other diseases that affect our citizens. It’s astounding, it’s unbelievable, and it’s absolutely not okay. I know NIH has increased commitment to help. However, I strongly believe that it is NOT ENOUGH. We have the ability to figure this out and ease the suffering of all these people and we could do it in a few years WITH ENOUGH RESOURCES! Ron always tells me, he and his team need $5 million dollars for 5 years to find the answers. I believe him! I have watched this amazing man do collaborative interdisciplinary science solving “unsolvable” problems for over 40 years. He can to it, with the team of fabulous scientists that he is able to gather. Why is this not happening as fast as it can? If people could personally connect with the suffering, I believe it could happen faster. We must all do all we can to show the government and the world the extent of the suffering! Send photos, Don’t be shy! Bring photos and recent science papers everywhere you go! We can speed this up together! I look forward to working with you till we get answers and my baby can come back to me!”
Goodbye to graded exercise therapy but concerns about physical activity programmes – Community Discussion
There were significant concerns about the recommendation of a physical activity programme in the draft ME/CFS guideline, even with the caveats attached. The recommendation that a physical activity programme should be considered if patients would ‘like’ to start one, was felt to imply that there is a choice or a desire involved, rather than increased physical activity being impossible for many.