Monthly Archives: March 2014

Letter to President Barak Obama

I haven’t mentioned in any of my blogs that I am an advocate for patients suffering with the debilitating chronic illness commonly referred to as “ME/CFS.” I prefer to use “ME.”  “CFS” is a misnomer, and it is hoped that it will be dropped from the identifying name of this disease.

ME stands for myalgic encephalomyelitis.  M.E. is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems.  Symptoms can be multiple and vary from person to person but common symptoms include post-exertional malaise (PEM), cognitive problems (such as short-term memory loss and concentration difficulties-commonly referred to as “brain fog”), muscle and nerve pain (including fibromyalgia), muscle weakness, noise and light sensitivity, sleep and temperature disturbance, orthostatic intolerance (inability to sustain upright activity e.g. standing, sitting or walking) and sensitivity to foods, alcohol, chemicals and medicines.

I’ve been sending monthly letters to President Obama, usually referring to the HHS (Department of Health and Human Services), headed by Kathleen Sebelius.  This department oversees the NIH, the CDC, the FDA, and others, which have a great impact on how our government is supposed to care for the health of our citizenry.

Here is the latest one:

President Barack Obama
The White House
1600 Pennsylvania Avenue
Washington DC 20500

Re: The Department of Health & Human Services; National Institute of Health

Dear Mr. President;

Following are comments by ME/CFS patients and their caregivers, responding to a blog:
“The problem is that there is no leadership and accountability within the government, either by elected or non-elected officials.”
“This sort of incompetence continues throughout because no one in the government actually cares. It is just hand-wringing.”
“Meanwhile it is costing the government tens of billions of dollars in lost taxes and welfare.”
“I think a major reason why the government doesn’t want to help those of us with ME/CFS is financial. The officials do not want more people getting medical coverage from Medicare and Medicaid nor does it want more people to receive federal disability benefits. And the insurance companies do not want to pay for medical care related to this disease.”
“This is a time when disability benefits are being questioned for many people, if not outright denied, and when it’s harder to obtain Medicare and Medicaid. In fact, Medicare payments to doctors and coverage is being cut back somewhat.”
“The federal budget has been cut. Funding for agencies, which do medical research has been decreased overall for our disease and others. This isn’t a good time for medical research.”
“When the government shutdown occurred, a lot of programs were cut back. It was revealed by the media that funds had been cut back for the CDC and FDA for programs which monitor Salmonella and other food-borne diseases and for inspections of meat/poultry plants.”
“Our health is not a priority.”
“Finances are definitely a part in this government/insurance companies and combined interests.”
“Getting to the bio markers for ME\CFS has the potential of opening up that proverbial can of worms requiring insurance and disability payments AND proper treatment of a very physically sick large patient population group. AND, with that, the demand for answers from HHS, CFSAC, CDC and NIH and affiliations as to WHY ME/CFS has been largely ignored being LEFT to infect/affect/debilitate millions globally. AND, further questions–WHO has led and who continues to lead the movement AGAINST getting to the scientific answers to ME/CFS? WHY this discrimination? WHY the secrecy?”
“Finances for ME/CFS are merely a surface excuse and only part of the whole problem in lack of transparency and accountability regarding ME/CFS. For example, there is a budget of $16M annually allocated for male pattern baldness.”
“There is reasonable research funding available and allocated to many diseases. In contrast, ME/CFS receives pitiful funding; and of that $1M plus is being needlessly and foolishly wasted on the IOM (Institute of Medicine) contract instead of going to much-needed biomedical research.”
“I do think the government does not want to recognize one more disease because of the funding and research. I believe there was resistance to funding AIDS research and treatment for quite awhile. I think that the AIDS activists, especially ACT-UP and others who were really public, pushed the government to do the research and fund it.”
“I could also surmise that because this is primarily a woman’s disease (not all, I know), that there is even less interest in funding research.”
“But I agree it isn’t only finances; it’s politics. It’s lack of interest in taking on a new challenge, in breaking with the status quo. The disease is an enigma. It would take a real concerted, unified research program to find the causes, biomarkers and treatments. Does the government want to do this? Not really.”
“Dr. Ian Lipkin, virologist, is asking patients and relatives to donate for his research. This is crazy. The government could do it, and has tons more funds than our [ME/CFS] community has, obviously. It could easily give him $1 million, even $10 million.”
“I cannot understand at all how anyone could think that all of HHS’ malfeasance and nonfeasance isn’t intentional, since the whole thing has been a bad impression of a parody of a poor imitation of trying to make progress.”
I hope the above comments, which were in response to a blog, will make it obvious to you that this is an extremely important subject, affecting over a million citizens of the United States, and over 17 million citizens of the world.
Very Sincerely,

To date, I haven’t received a response, and I don’t expect to receive any.  But, we have to go forward and hope.  🙂

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South Florida Cities Rising Against Puppy Mills and Kitten Factories

I came across an article in my local newspaper this morning that caught my attention.  If you read some of my earlier posts this year, you will know that I love animals.  I try to be proactive when I can.

It’s been known for many years there are retail pet shops that get unwanted, sick puppies and kittens to sell to unsuspecting customers.  Don’t get me wrong.  I assume there are pet shops operated by people who have consciences and don’t operate strictly for greed, and who respect the lives of the animals they sell and the customers who buy their animals.

Cities rising up against puppy mills business.

Cities rising up against puppy mills business.

The operations of puppy mills and kitten factories are scourges that need to be erased.  All the animal rights groups, and cities that have societies against cruelty to animals, keep trying to stop the operations of these disgusting, cruel  places.

So, it was with a sense of relief and satisfaction that I am finding there are cities in my area that are starting to stomp down the reason for puppy mills:  greedy and non-caring retail outlets.  I hope other cities across the country will be passing more ordinances and laws to stem this abysmal tide that has risen exponentially.  Kudos to the cities that have done so already.  These laws are meant to make sure that any future pet stores can sell cats and dogs from only approved facilities.

Rest, Rebuild and Recharge

Excellent advice we should all heed.

Helping Children to Appreciate the Extraordinary Found Within the Ordinary

Ordinary can be extraordinary.

Kindness Blog

Helping Children to Appreciate the Extraordinary Found Within the Ordinary

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Where Is That Truck That Ran Over Me?

Yesterday, I had the pleasure of going for my every-four-week massage and chiropractic adjustment.  I like to keep in shape as best I can, and it is one of life’s pleasures that is very important to me.

Therapeutic massage.

Therapeutic massage.

I knew before going, my regular therapist would not be there, because she was away attending her son’s wedding.  My chiropractor has a new chiropractor practicing in her office.  I was told she, Dr. F., had been a massage therapist for 20 years before becoming a chiropractor.  So, I had Dr. F. do my therapeutic massage.  Halfway through it, she thought it was an opportune time to adjust my neck.  A great crack and then proper alignment was accomplished!

 

Neck Adjustment.

Neck Adjustment.

She then continued and worked on my shoulder and middle back.  She did a fantastic job!  I was advised to drink lots of water, because the massage was deeper than what I was used to from the other massage therapist.

My chiropractic adjustments went very well.  I was very pleased with Dr. F.’s expertise.

Went home, drank a whole bottle of water and, started to get things ready for supper.  After supper, I started to feel very tired.  Had extra water to help flush out the toxins that were loosened from my muscles during the massage.  Was so tired, that I couldn’t wait to get to bed and I found myself in bed way before my usual time.  Fell asleep immediately!

Fell asleep immediately.

Fell asleep immediately.

This morning, I could hardly move myself out of bed.  That massage was so great, that I felt like a truck ran over me!

Images:  bing dot com

Happy 80th Birthday, Gloria Steinem

We women have so much to thank you for, Gloria. Hope your elephant ride is an unforgettable experience.

Life in the Boomer Lane

Steinem

 

Gloria Steinem turns 80 tomorrow. Life in the Boomer Lane knows better than to assume that most people are aware of those people who have shaken up the world in ways that change us forever. So, for those of you who missed Gloria Steinem, here is a quick review: She was hot enough, as a young journalist, to go undercover as a Playboy bunny in 1963 to expose the misogynistic world of the Playboy empire. She was prolific enough to have authored several bestsellers. She was witty enough to have coined any number of memorable phrases, including “This is what 50 looks like,” on the occasion of her 50th birthday. She was creative enough to have co-founded New York Magazine and to have founded and run Ms Magazine. She was feisty enough to keep going, in spite of women who were threatened by the idea of taking their lives into…

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A Little Perspective

Taking stock of our good fortune.

Kindness Blog

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Practicing Gratitude

Gratitude. Here are serious reasons for it.

WordPress Perusing

Every so often, I like to peruse the different features that are available to me on WordPress.  I decided to do this yesterday because I realized I wasn’t receiving emails for postings by many of the bloggers I follow.

Inbox wasn't as full as I thought it should be.

Inbox wasn’t as full as I thought it should be.

At first, I thought these bloggers were not posting.  That was strange, because I really liked their postings, and when I decided to follow them originally, I expected they would be posting quite a bit.

Do follow blog

I decided to take a look at “Blogs I Follow.”  Well, of course!  That’s why I wasn’t getting emails about their postings.  I had to edit those bloggers on my list, and manually allow their postings to appear in my email inbox!  Duh!

Today, when I peeked into my inbox, I found many more emails from those “missing” bloggers.

Eeyore Has Special Friends

Came across this beautiful quote and just had to share it.

EeyoreImportant message for us all.