I like the advocacy of this. TBH though, I don't even associate myself with M.E. anymore. If I tell someone that's what I have they quickly Google it and find Chronic Fatigue Syndrome. Then their whole attitude changes. "Oh, I knew some who had that, she was real tired for a few months" or " so your tired a lot huh? Maybe it's because you don't exercise"
I now just say I have either an acquired mitochondrial disease or a neuro-immune degenerative disorder. I believe those are both accurate and very honest about my condition while giving people a sense of the severity. I stay as far away as I can from saying ME anymore though
Sorry guys I didn't mean to change the direction of a positive posting, I guess it just triggered me because I would never tell anyone about this campaign due to them thinking this is the disease I have. It's the unfortunate reality but I will continue to distance myself from it.
Hi
@Aerose91 . I must say it made me sad to read your posts and to consider that the current state of public opinion/perception/policy regarding our disease could be so blatantly warped to actually cause pwME's to be embarrassed about their own disease. I don't fault you for thinking this way, in fact, I've also at times been tempted to avoid talking about M.E. so as to avoid smug expressions and dismissive comments. But I finally put my foot down and said no more. And I have gotten more into advocacy recently, including the P2P protest last month. There is too much at stake for too many of us to let other people's ignorant views hold up the relief we need.
But seeing what this oppressive stigma is still doing to many with M.E. just makes me sad and more than a little bit mad for all of us.
However, I hope you can take courage from one recent example of a legitimate hero (the man behind Unbroken) showing deep and genuine respect to a patient with M.E. I explain the amazing, true story in this recent
KnoW M.E. Challenge video. I have a feeling there are many people who don't know this story.
I think a new day is dawning for people with M.E. where we don't have to feel an ounce of shame about our disease, and instead we can boldly declare the urgent need for relief for a community of suffering people and where we loudly demand a halt to the unnecessary progression of new cases of M.E. that wrecks one life and one family every time the disease spreads unchecked.
Patients disabled by M.E. immediately need access to biomedical treatments, disability income, insurance reimbursement for all manner of tests and therapeutic procedures (as alluded to in Miriam Tucker's brilliant Medscape article
Wrong Name, Real Illness - requires free account registration to view) as well as specialized medical equipment such as power reclining wheelchairs, electric recumbent trikes, TENS units and other Durable Medical Equipment designed to alleviate or accommodate symptoms or improve quality of life while research into cause(s) and cure(s) can be aggressively funded and carried out.
None of this can happen until we speak up and say the name of our disease and get the healthy public to join us in both knowledge and spirit.
I am not trying to talk you into personally taking the challenge, especially if you are not comfortable saying you have M.E. However, I hope progress in public perception will come quickly for all of us, and beyond opinions, I hope for substantial increases in private and public funding into M.E. research. Further medical breakthroughs will join the growing scientific base already forming a picture of a devastating organic disease, and make it far easier for patients with M.E. to say what we already know in our hearts. We deserve biomedical treatment and we deserve respect.