Solve ME/CFS Initiative Takes Part in #MillionsMissing Protest

Standard

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…

View original post 24 more words

Body Image Experiment

Standard
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

Standard

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.

 

 

View original post

Shower Time for Woody

Standard

I know it has been a bit since last posting anything – a lot has gone on, some good, some not so much.

However, instead of going into all that now, I would rather have a laugh, as laugh therapy is a requirement in my life. It should be in yours also!

Today’s “medicine” is brought to you by Woody, a cat (of course!) who obviously appreciates a good shower.

 

Deez Nuts Speaks: Meet Brady Olson, The 15-Year-Old Candidate for President

Standard

Just to get your minds off “The Donald” and all the usual political stuff… I present an update on McCubbins (see my previous blog “Meow is the Time…” )

PHOTO: Brady Olson, 15, of Wallingford, Iowa, filed a statement of candidacy form under the name "Deez Nuts" with the Federal Election Commission in July.

Meet Deez Nuts -a high school boy in Iowa named Brady Olson. He is sharing his ticket with Limberbutt.

Candidate Limberbutt McCubbins is not the first non-human to become a presidential candidate. Others include a pig named Pigasus the Immortal in 1968 and Molly the Dog in 2008.

‘Klepto Kitty’ Goes Viral For Stealing Neighbors’ Belongings

Standard

There is an adorable thief (I mean, look at that face!) roaming around in Portland, Oregon named Snorri. While he takes may types of “goods”, he does seem to have a bit of a shoe fetish!

Untitled

(picture from Instagram)

The following is his story – written by Eliza Murphy for Good Morning America:

A life of crime has turned one cat burglar, now appropriately nicknamed the “klepto kitty,” into an overnight Internet sensation.

Snorri, an orange tabby cat from Portland, Oregon, has earned notoriety for being the neighborhood shoe-napper, snatching up innocent soles form their owners and bringing them home.

instagram.com/snorrithecat

instagram.com/snorrithecat

The cat’s stealing problem got so bad that his owner, Gabbie Hendel, decided to take action, installing a “cat collar camera” on the feisty feline to help determine where the random objects were coming from.

“The weirdest thing he has stolen was a baby costume,” Hendel wrote to ABC News. “I believe it is a monkey costume for baby.”
.instagram.com/snorrithecatinstagram.com/snorrithecat

The camera was paid for by cat-lovers all over the country on a GoFundMe page and has successfully helped catch the cat’s sticky-pawed ways in action, allowing Hendel to more easily return the obscure belongings to their rightful owners.

Snorri isn’t snobby about what he chooses to cat-nap, either. He’ll take everything from shoes, to hats, stuffed animals and even gardening gloves. His personal favorite, however, is definitely flip-flops.
.instagram.com/snorrithecatinstagram.com/snorrithecat

“I think he is such a funny guy, so much character,” Hendel wrote. “I’m glad that others get a kick out of it!”Sometimes though, her cat’s peculiar hobby can be a bit too much to handle.

“It’s a little time consuming, I am a medical student, so we will see how long I can keep it up,” she explained.

instagram.com/snorrithecat

instagram.com/snorrithecat

The videos of Snorri’s shenanigans are so compelling that Hendel has created a YouTube channel and Instagram account for his newfound followers to stay entertained (and locate their missing items).Despite the extra work, Hendel has cared about Snorri since the day she found him shivering in a stairwell.

“I thought that if he was still there in the evening I would take him in and try to find his owners,” she recalled. “He was there when I got home, in the same spot, so I brought him in and fed him. He scarfed down some food and fell asleep upside down. Looks like he steals hearts as well as shoes!”

 

#ME Where Are We?

Standard

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…

View original post 114 more words