“If we are truly going to build a world where everyone with ME gets diagnosed and has access to effective treatments, we are going to need to set our sights higher. We’ll need to shake up medicine and science itself.
Let’s link arms with the women’s movement, the disability rights movement, and with all people with chronic illness fighting for recognition and access to care, especially those with: Ehlers-Danlos syndrome, POTS, dysautonomia, endometriosis, mast cell activation disorder, multiple chemical sensitivity, chronic Lyme disease, fibromyalgia. We know we are cousins or at least, doppelgängers, and we don’t yet know why but we have to find out.
We will liberate ourselves and build the world that we need for our disease, but let’s never forget the fundamentals that have shaped what people with ME have had to face – the stigma of disability, sexism, and what is broken in the way medicine diagnoses, treats, and listens to patients.
And now, I want to talk to Washington. Francis Collins, you have the power to help end this criss and return millions of people around the world to their lives. You said “good science takes time.” I don’t have time. I am young now. I am alive now. And every day that you do nothing, I am losing my life. We have already lost so many people, to suicide, to neglect, to the severest forms of the disease. And we have already lost decades. The time to act is NOW. Half-measures, small steps, tokens, gestures, these are the same as inaction and we will not accept them. We will accept only what we need and deserve – massive investment and a plan, a real plan for what you are going to do to help cure ME.” ME/Awareness Month #jenniferbrea speech (Pic Repost from @yourachingart_m.e 😘) #nih #franciscollins #millionsmissing 👠 #dysautonomia #solvemecfs #meaction #mecfs #openmedicinefoundation #bedbound #invisibleillness #dysautonomia #housebound #chronicillness #chronicpain #fibromyalgia #lymedisease #soundsensitive #lightsensitive #skinsensitive #myalgicencephalomyelitis #spoonie #painsomnia #insomnia #migraine #brainfog #memoryloss #invisibleillnessawareness #mecfsawareness