Solve ME/CFS Initiative Takes Part in #MillionsMissing Protest

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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…

Sunshinebright

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.

seattlenetherlandscanada

Millions Missing demonstration in Washington, DC.  (Photo by Mary F. Calvert) #MillionsMissing demonstration in Washington, DC. (Photo by Mary F. Calvert)

The shoes represent the active lives lost by the owners…

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Body Image Experiment

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For many decades, the media has idealized their image of the “perfect woman”, going so far as to photo-shop pictures of models to inhuman proportions. Culture dictates that looks are important. The message comes across to females of all ages and shapes that they do not measure up. For many women, this expectation can damage their self-esteem.
In recent years, a backlash has been building against the media’s message, and rightly so. Many women, along with some men, are speaking out, their message being that beauty comes in all shapes and sizes. It is time for us to be comfortable in our own skin.
In the following video, presented by HLN, Amy Pence-Brown puts her message forth by stripping down to her underwear in the middle of an outdoor market. The response is heartwarming.

Brain Inflammation – Its Similarity In Autism and ME

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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.

Sunshinebright

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.
activated microglia
Excitotoxicity has been put forth as a mechanism of ME/CFS by a number of clinicians and researchers, including Drs. Paul Cheney, Jay Goldstein, Morris and Maes, Martin Pall, and, most recently, Jarred Younger.

 

 

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#ME Where Are We?

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A great question asked by Sunshinebright – #ME Where are we? A question I would like a great answer to.

M.E/CFS awareness -

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.

Don't be surprised...

Sunshinebright

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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Important Brain-Immune System Link Discovery

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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.

Sunshinebright

“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.

Maps of the lymphatic system: old (left) and updated to reflect UVA's discovery. Maps of the lymphatic system: old (left) and updated to reflect UVA’s discovery.

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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