I have become home/bedbound with M.E. (Myalgic Encelphalomyelitis), which is why my blogging has all but disappeared. When my energy allows, I have been writing a new entry bit-by-bit with the hope of getting it online soon. In the meantime, I must reblog this important entry by Sunshinebright about the MillionsMissing Project. I did manage to tweet in support on May 25th, so I feel good about participating in my own small way. Many thanks to all who made the Project a successful protest. Now the test is to see where we go from here: did the people we needed to reach listen? Time, and possibly continueing the MillionsMissing Mission, will tell…
Solve ME/CFS Initiative President Carol Head said that following last year’s Institute of Medicine report, there is no reason for the federal government to drag its feet on aggressively funding research on the disease.
“It is the role of NIH and CDC to care for the health of their citizens, and the health of those citizens is currently being funded by ourselves for ourselves,” Head said.
The protest included a series of demonstrations by ME/CFS patients and their loved ones at locations around the country and across the world, including: Washington, D.C., San Francisco, Philadelphia, London, Melbourne, Seattle, Atlanta, Boston, Dallas, Raleigh, Canada, the Netherlands and Belfast. Protesters in D.C. assembled outside the Department of Health and Human Services (HHS) headquarters. Other U.S. protesters assembled outside the regional HHS offices.
The shoes represent the active lives lost by the owners…
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I have given this link to my daughter, as she was just stating today that she thinks she may have ME also. It may just be the Autism. We have noted several times that both she and I share certain “traits” in our illnesses. This may explain why.
I follow “Onward Through the Fog,” a blog on blogspot, authored by Erica Verrillo, a talented person who suffers from ME (Myalgic Encephalomyelitis). Her reports and research are top notch.
In this particular posting, Erica reports on the similarity of some findings affecting Autism and ME/CFS. These findings have to do with brain inflammation.
A John Hopkins study acts as confirmation that excitotoxicity caused by chronic inflammation is central to autism.
A great question asked by Sunshinebright – #ME Where are we? A question I would like a great answer to.
Alas, I am doomed to be disappointed. As Sunshine pointed out, 2015 started out with a lot of optimism. M.E. was officially declared a real, physical disease by the IOM. This was a big win, as an estimated two million sufferers in the U.S alone, including myself, have been treated horribly by the medical establishment. M.E. had never been taught in medical school and doctors typically would “poo-poo” the symptoms effecting M.E. patients. We have been labeled as hypochondriacs and being mentally ill. The outcome of the IOM’s report would surely change things for the better – this was the hope. More research dollars to find a biomarker and, hopefully, a treatment that works (if not a cure.)
The truth: Doctors still have no clue what M.E. is. Money for research is still not coming from the NIH. Just this month, Dr. Ian Lipkin , a researcher, resorted to eating hot peppers in a challenge to raise funds. Very sad.
During the first half of this year, there was much going on in the Health and Human Service (HHS) Department and regarding ME (Myalgic Encephalomyelitis): we had the IOM’s (Institute of Medicine) outstanding, positive report (in my opinion) and then there was the P2P (Pathways to Progress) report. The former was indicative of forward movement in the cause of ME and the latter, was not.
We’ve been ignored.
There were stand-offs, delays, and hidden refusals when the FOIA was used to obtain documents vital to the ME cause.
And where are we? After all the hullabaloo and interviews of patients including Laura Hillenbrand, author of “Seabiscuit,” Jen Brea, co-developer of a movie, “Canary in a Coal Mine,” I ask again:
Where are we?
It looked like we had some strong headway for a while, in getting ME recognized as a VERY SERIOUS disease (which it is of course), and…
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At The Mighty, we know that sometimes kids can offer us a brand new perspective on the world. So, we decided to ask our readers who are parents to share some of the wonderful, unique and funny things their kids have said about their disability.
These were your answers:
1. “‘I’m not Autistic, I’m Cara.’ My now 9-year-old daughter said that when someone called her autistic instead of saying she had autism. Well played, baby girl. Well, played.” – Kim Vivanco
2. “My cousin says she has ‘Up syndrome’ because she’s happy, not sad.” – Cassie Collins
3. “My oldest son is in fourth grade and decided he couldn’t do his math homework because of autism. Nice try, kiddo.” – Stephanie France Fry
4. “My husband’s student once said, ‘I know I’m special, but why do they call me Ed?’ – Liz Gorgue Rosas
5. “My 3-year-old daughter tells others she has ‘terrible palsy.’ One of these days she’ll be able to pronounce ‘cerebral,’ but today is not that day.” – Ashley Mobley
6. “Another child asked my daughter what her hearing aids were for. She responded, ‘They are like glasses for my ears!’” – Kerri Goff
7. “My 4-year-old daughter overheard her father and me talking about her autism diagnosis. She turned and looked at us and enthusiastically yelled, ‘I awesome!’ Best mispronunciation she has ever made.” — Kendra Hopkins
8. “Our daughter sometimes wears a gastric drain bag to empty food that is too much for her to handle. She gets a lot of questions and stares. Once, when she was about 6 years old, a woman after a long hard stare said ‘OK, I have to ask, what the heck is that?’ Our daughter, without skipping a beat replied, ‘It’s my own personal slushy, you want to try some?’ I could have exploded trying to hold in my laughter. ” — Kate Sytsma
9. “Our oldest son, Xavier said to a friend, ‘My brother, Cooper, has autism. Do you know what that means?’
Xavier: ‘It means he likes his hotdogs not touching his French fries and that we give him extra time getting out of the car.’
Friend: ‘That’s cool.’
Xavier: ‘You know what else is cool about autism?’
Xavier: ‘Everything. Especially Cooper.’” – Makenna Dubay
10. “My son has worn ankle-foot orthotics for years. He used to be embarrassed and hide them under pants. If someone would say something he would cry. Then, one day, he chose to wear shorts. He was asked by a child what happened to his legs and he said, without hesitation, ‘I fell off a cliff and lived to tell about it.’ The child’s eyes got big and then he walked away, and I turned my head and just about choked through my laughing. Through the sarcasm, my son turned a corner on his disability!” — Julie Bayles
11. “One year at camp another camper asked my daughter, ‘Why do you use a wheelchair?’ to which she replied, ‘Because I’m awesome.’ When that response wasn’t enough, the kid looked at a counselor and said, ‘No, really, why does she use that?’ The counselor then said, ‘Because she gets tired quicker than you… and because she’s awesome.’” — Alexis Snyder
12. “I have tics, and I don’t mean the bugs.” — Kristy Madden Kassebaum
13. “My brothers and I all have autism, but this was my youngest brother’s way of explaining his Asperger’s syndrome: ‘If my dad’s head was a golf ball, my head would be a beach ball.’ Nobody understood what he meant except him and me, and that’s all that matters.” — Hannah Walker
14. “God had to level the playing field a bit for everyone else, so he gave me spina bifida.” — Jake Siem
Best Dentist Ever!
As someone with ME, and as someone with a daughter on the Autism Spectrum, this discovery is one of the most important medical events in recent history. Times are changing and researchers are finally picking up the pace studying neuro-immune issues. As my ME progresses, the hope for better understanding of the disease and better treatments may see fruition. Many with ME, MS, and Autism, to mention some of the many misunderstood neuro-immune diseases suffered by millions, might see a flicker at the end of the tunnel.
“They’ll have to change the textbooks.” This statement, by Kevin Lee, PhD, Chairman of the UVA Department of Neuroscience, is the result of a study at the University of Virginia School of Medicine. The study, awarded to the UVA Health System and funded by the National Institutes of Health (NIH), has shown there are heretofore undetected lymphatic vessels connecting the brain to the immune system.
Researchers knew there was a connection between the brain and immune system, but the vessels were completely hidden. Now, there are many new angles to exploring neurological disease.
This is a stunning discovery. It is difficult to explain how these vessels in the brain were overlooked when the lymphatic system was explored. New avenues of discovery are now possible and beneficiaries might be MS, Autism, Alzheimer’s and maybe even…
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Medical Marijuana- finally legalized in Florida after tons of red tape (Republican red). But when will it be available? And for whom? One may never know. More on this by Sunshinebright!
Medical marijuana has been one of the most contentious topics in the news these past couple of years.
State legislators can pass laws regarding “legalizing” this plant, but our federal government still considers it an illegal drug, and possession and/or use of it can still cause arrest, trials in court, and jail time for those persons caught in this illegal act by federal authorities.
In Florida, the legislature passed a bill in 2014, legalizing medical marijuana, in the hopes of avoiding a state constitutional amendment in the next election in 2016. There are contents in the bill that caused a legal battle, setting back the activation of the new law. (Please see my other posts about Florida medical marijuana here and here and here.)
Splashed over many headlines today, May 28th, 2015, is the announcement that Florida Administrative Hearings Judge Watkins, rejected claims by an Orange…
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With the optimism I felt upon hearing the outcome of the IOM report this week, it is sad to learn the report is being shut out in the UK.
While the ME community is absorbing the finer details of the recently published report by the US’s Institute of Medicine (IOM), the silence surrounding the IOM report in the UK media is almost deafening. Whatever one’s opinion regarding the finished product, this is a significant study produced by a major and respected United States organisation, part of the Unites States National Academies, concerning a disease that affects between 100,000 and 250,000 UK citizens. There has been extensive coverage in various media outlets in the US but reporting in the UK has been near to non-existent. Call me a cynic but had the IOM study concluded ME was a predominantly psychological condition and renamed it ‘Cannot be bothered to exercise syndrome’, I have no doubt, following heavy promotion by the Science Media Centre (SMC) and the likes of Wessely and White, the report would have been plastered all over the British…
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