Monthly Archives: July 2015

Is ME (Myalgic Encephalomyelitis) A Hidden, Mysterious Disease?

 

It isn’t.

It might seem like it, according to the treatment it gets from our highly-regarded Health & Human Services Department (HHS), National Institutes of Health (NIH), Centers for Disease Control (CDC) and other sub-departments of the huge HHS.

It seems like there is a vendetta against ME patients in the U.S., and also in other countries, where very ill patients are diagnosed and treated for psychosomatic illness, when they are really suffering from a multi-symptom, extremely painful and debilitating disease.

The whole body is affected.  Not just nerves; not just the brain, not just the lymph nodes; not just the immune system; not just the muscles, not just the major organs of the body – BUT ALL.

Another thing:  Approximately 80% of patients who are suffering with ME are women.  Some scuttlebutt I’ve heard has suggested that, since such a huge percentage of patients are women, some governmental entities may not put as great importance on funding for research for ME as they would if the disease was weighted differently.

The other 20% is comprised of men and children.  Yes, children!  Also, it is not unusual for members of the same family to fall ill with ME.  Outbreaks have also been reported within communities.

blue ribbon for me

Unraveling the “mystery” about ME:

 

  • Myalgic encephalomyelitis (ME) is a debilitating, often disabling, illness recognized as a neurological disorder by the World Health Organization since 1969.

  • After an outbreak in Nevada in the 1980s, the CDC coined the term “Chronic Fatigue Syndrome.”

  • There are no FDA-approved treatments and no diagnostic tools for ME.

  • Between 836,000 and 2.5 million U.S. residents are afflicted with ME, with 84 to 91 percent not yet diagnosed. True numbers are highly under reported

  • ME-related medical expenses and lost productivity cost the U.S. up to $24 billion annually.

  • In research funding, ME receives less money for research than hay fever, and ranks far below similarly disabling illnesses; such as:

  • 1) ME: About $2 per patient per year in NIH funding ($5 million in FY2015);

  • 2) Multiple sclerosis: About $250 per patient ($103 million in FY2015); and

  • 3) HIV/AIDS: About $2500 per patient ($3 billion in FY2015).

  • Patients with ME score more poorly on quality of life surveys than patients with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.

  • At least one quarter of ME patients become housebound or bed bound, often for years. Many become unemployed.

Loss of job as disease progresses has dire economic consequences for patients, families, and the country as a whole, when considering the loss of productivity.

Ask most any person in the medical community if they heard of “ME” or “Myalgic Encephalomyelitis” and, guaranteed, almost all will answer, “No.”  Ask if they’ve heard of “Chronic Fatigue Syndrome” or “Chronic Fatigue” and more often than not, they will say, “Yes.”  But, they really have no idea at all what it is.  I speak from my own personal experience.  The many doctors I’ve visited over the last year, when asked, had the identical response.  Also, this type of response is reported by patients when questioned about their doctor visits.  Too often, they encountered uninformed and uncaring doctors.

Medical schools should begin instituting information about ME in their curricula.

Thank the CDC representatives for that great faux pas 30 years ago in Nevada, while investigating an outbreak, when they imprinted “Chronic Fatigue Syndrome” (CFS) on all patients, and which, unfortunately, stuck.

The ignorance shown in the face of a “mysterious” disease 30 years ago is continuing.

 

[Indented information is from #ME Action]

[Image is from bingdotcom]

Ye Olde Wood Stork

 

Another exciting sighting!  It is to me, anyway.  These birds are still on the endangered list.  Their appearance is a rarity.

As seen right outside my bedroom window:

woodA lonely-looking soul.

A Horror of a Human

It’s gone viral. All over the world, in every media and social media imaginable. Lion-killer. He should get the book thrown at him in Zimbabwe. This guy is happiest when he’s killing animals.

Thanks, Donna, for this very moving piece.

Walking with the Alligators

cecil1
Cecil the beloved Lion in Africa
Picture credit: Unknown

What can be going on in the deranged, twisted mind of this absolute monster?

This gutless Dentist, Walter Palmer, from Minnesota not only finds pleasure in killing, but is also a repeat offender.

His latest victim, that he reportedly paid $55,000 to hunt, was a much beloved Lion and local celebrity at the Hwange National Park in Zimbabwe, Africa.

These are the words of the TV News story, not mine:
 “This man lured the Lion out of the safety of a sanctuary, then shot him with a crossbow and after tracking him for more than a day,  finished him off and skinned him.”

The beautiful black-maned Lion called Cecil, was quite accustomed to human interaction, so likely felt no danger, or fear.

He was basically a pet to the world, a hero, a star to be adored.

He could not have understood that he was about to be killed and to be hung on a wall, the…

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My Bucket List of Gratitude – By Lisa Gastaldo

When help is needed, good friends come through without being asked.

Kindness Blog

bucket listI’m creating my own kind of bucket list. Not the usual listing of things I wish to do before I leave this earth, but an accounting of the gracious drops of kindness that have filled my pail to the brim.

Whether the contribution was a single drip from an eyedropper or gallons upon gallons of generosity, all have buoyed my soul, washed away hours of pain, and carried me through turbulent trials.

And so I have decided to make a conscious effort to recognize these not-so-random acts. Some were as temporary as the morning dew, but equaling as cooling. Others have been like IVs, injecting nourishment continually. A few were summer storms: electrifying, powerful, and brief. Whether their perpetrators knew it or not, each and every one made a significant impact. They quenched my drought in spirit and left me flooded with gratitude.

Item Number 1: Clean House – Warm…

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Hands Transplant

 

A testament to dedicated, unbelievable surgeons, nurses and medical community and the courage of a little boy.

Warning:  Surgery is performed in this video, but just a little can be viewed.

If this isn’t inspirational, I don’t know what is:

 

#ME Where Are We?

 

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 as such, needed MUCH MORE grant money from the NIH (National Institutes of Health) for some serious and more timely research.

As far as I can see, we are not much further along in our battle – yes, I said, “battle” – to get concrete help for our ME patients – in order to get them out of the greatest “funk” – in the world.  My choice of word – being polite.  I am totally frustrated, angered, impatient, sad, screaming inside.

People running and doing walks, making videos, giving speeches, begging Congress, growing gofundmes on the Internet, writing articles in popular newspapers and magazines, yada, yada.

Still, I ask, “Where are we?

 

 

 

Out Of The Mouth Of A Marijuana User

 

Cyd Maura, is a responsible woman, a marijuana user, well educated, and no one would ever think she was a “stoner.”

Her short video explains her experiences and beliefs:

 

Nose Rubs

The “ayes” have it! Favorite petting spot.

Pussy Cats 3

Question:  Patches, what is your favorite spot for Mom to pet you?

Answer:  My nose!

Question:  Rusty, what is your favorite spot for Mom to pet you?

Answer:  My nose!

Moral:  Don’t ask; just do!!

nose rub

nose rub 2

nose rub 3

nose rub 4

nose rub 5

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Moonshine

 

I walked out of my house one evening and noticed the beautiful perfectly round moon, framed by the palms.  Had to get my old camera to preserve that sight.

Hope you like it:

moon

 

Header courtesy of http://www.freewebheaders.com

 

14 Wonderful, Unique and Funny Ways Kids Have Explained Disability

My granddaughter has Asperger’s on the Autism Spectrum. This post is a celebration of her and all the other kids who have what are known as “disabilities.” But, these kids DO NOT believe they are disabled. You will laugh at their senses of humor! 🙂

kraftycatcreations

-Fern

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http://themighty.com

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…

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