Monthly Archives: July 2014

Global Health: Time to Pay Attention to Chronic Diseases

I subscribe to many government newsletters and blogs.  One is the NIH (National Institutes of Health) Director’s blog.  His name is Dr. Francis Collins.

Today, I read Dr. Collins’ post about a global initiative, Global Alliance for Chronic Diseases (GACD).  The headline,

Global Health: Time to Pay Attention to Chronic Diseases

really caught my eye.  Of course, my first thought was, “M.E. is a chronic disease, it is also a global chronic disease.”

The members of the GACD are:  the United States, United Kingdom, Canada, Australia, China, and India, South Africa, Brazil, and the European Union.  They are meeting in Shanghai as I write.

However, my good feelings quickly found themselves dashed as a pumpkin would feel if it fell off the farmers’ truck onto the paved road on the way to market.  I mean – smashed!

Dr. Collins went on to write:  “While infectious diseases remain a significant problem in the developing world, cancer, heart disease, obesity, diabetes, and other non-communicable diseases are now among the fastest growing causes of death and disability around the globe. In fact, nearly three-quarters of the 38 million people died of chronic diseases in 2012.”

My thought:  “And add the more than 20 million sufferers of M.E. to that, plus the uncounted number who suffer from fibromyalgia, POTS and others I can’t think of to name right now.  We’re talking about a big chunk of the world’s population.

I don’t know if Dr. Collins will take the time and trouble to answer my comment on his post.  Here is my comment:

“A very interesting post, Dr. Collins. I was not aware that the NIH helped form the initiative, Global Alliance for Chronic Diseases (GACD). Non-communicable diseases (NCDs) have not been targeted much, as far as I can see from all my reading, and am taking heart from this report, that there will be a much greater focus. You must be familiar with “M.E.” (myalgic encephalomyelitis). It is also called, “CFS” (chronic fatigue syndrome), which, according to all experts, clinicians, researchers, patients and advocates, is a great misnomer, as it certainly is much more than “fatigue.” Since M.E. is a NCD, as far as anyone knows, will the GACD have this disease on its agenda anytime soon? My daughter has M.E., so I have a personal interest. I send letters to President Obama every month, describing M.E., and how it affects the lives of more than 17 million people globally, with more than 1 million in the US alone. If this isn’t a catastrophe, I don’t know what is. BTW, if you could help us out within the NIH and HHS, we surely would appreciate some more focus and funds for research for M.E.  Thanks again.”

Baby Boomers, Take Note

The National Institutes of Health commissioned the U.S. Census Bureau to report the population trends and other national data about people 65 and older.  The results are presented in a report entitled, 65+ in the United States: 2010.

The report documents aging as quite varied in terms of how long people live, how well they age, their financial and educational status, their medical and long-term care and housing costs, where they live and with whom, and other factors important for aging and health.  Rates of smoking and excessive drinking have declined among older Americans, prevalence of chronic disease has risen, and many older Americans are unprepared to afford the costs of long-term care in a nursing home.

Some good news, and some not so good news.

Aging in America is changing in fundamental ways. The report provides the number of older people and their age, sex, and race; it also tells us about their health, families, communities and future problems with caregiving, vital data to consider as we seek to meet the needs and address concerns of our aging population. The older population today is increasingly diverse, on a number of fronts.

Baby Boomers, take note:  A key aspect of the report is the effect that the aging of the baby boom generation — those born between 1946 and 1964 — will have on the U.S. population and on society in general. Baby boomers began to reach age 65 in 2011; between 2010 and 2020, the older generation is projected to grow more rapidly than in any other decade since 1900.

baby boomers soc sec card

Rates of smoking and excessive alcohol consumption have declined among those 65 and older, as mentioned above, but the percentage of overweight and obese people has increased. Between 2003-2006, 72 percent of older men and 67 percent of older women were overweight or obese. Obesity is associated in increased rates of diabetes, arthritis, and impaired mobility, and in some cases with higher death rates.

Research based on NIA’s (National Institute on Aging) Health and Retirement Study suggests that the prevalence of chronic diseases, such as high blood pressure, heart disease, chronic lung disease, and diabetes, increased among older people between 1998 and 2008. For example, in 2008, 41 percent of the older population had three or more chronic conditions, 51 percent had one or two, and only 8 percent had no chronic conditions.

long term care 2

The cost of long-term care varies by care setting. The average cost of a private room in a nursing home was $229 per day or $83,585 per year in 2010. Less than one-fifth of older people have the personal financial resources to live in a nursing home for more than three years and almost two-thirds cannot afford even one year. Medicare provides coverage in a skilled nursing facility to older and disabled patients for short time periods following hospitalization. Medicaid covers long-term care in certified facilities for qualifying low-income seniors. In 2006, Medicaid paid for 43 percent of long-term care.

Most of the long-term care provided to older people today comes from unpaid family members and friends.

Most of the long-term care provided to older people today comes from unpaid family members and friends.

Baby boomers had far fewer children than their parents. Combined with higher divorce rates and disrupted family structures, this will result in fewer family members to provide long-term care in the future. This will become more serious as people live longer with conditions such as cancer, heart disease and Alzheimer’s.

It is hoped that this report will serve as a useful resource to policymakers, researchers, educators, students and the public at large.

The good news is, if we are aware about possible problems in the coming years, we have a better chance to plan ahead.


[images from bingdotcom]

Finally, Positive Comments About the NIH

Many times I have expressed negative comments and disappointment with the National Institutes of Health (NIH) with regard to the lack of focus on M.E. (Myalgic Encephalomyelitis); however, this time I have more positive news about an entirely different topic that has come to my attention.  Liver transplants.  A major problem with preserving the donor liver while enroute to the recipient might now be solved.

This research is supported by National Institute of Biomedical Imaging and Bioengineering (NIBIB) and the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK), both parts of the National Institutes of Health.

Current technology can preserve livers outside the body for a maximum of 24 hours using a combination of cold temperatures and a chemical solution developed by scientists at the University of Wisconsin-Madison in 1983. The solution helps keep the liver tissue from dying while in transit to the recipient site. This has helped increase the number of successful liver transplants — but extending even further the time a liver can survive outside the body would provide many benefits, and thus increasing the chances of patients finding better matches while simultaneously significantly reducing costs.

The liver is perfused with a solution in this pump system before and after supercooling preservation. The blue color is caused by antifreeze that surrounds the components of the system to regulate the temperature. Source: Wally Reeves, Korkut Uygun, Maish Yarmush, Harvard University

The liver is perfused with a solution in this pump system before and after supercooling preservation. The blue color is caused by antifreeze that surrounds the components of the system to regulate the temperature. Source: Wally Reeves, Korkut Uygun, Maish Yarmush, Harvard University

To combat the difficult problems with long-term preservation of human organs steming mostly from the extensive tissue damage that occurs when organs are cryopreserved, frozen at temperatures of -320.8 degrees Fahrenheit, Martin Yarmush, M.D., Ph.D., and Korkut Uygun, Ph.D., investigators in the Center for Engineering in Medicine at Massachusetts General Hospital (MGH), Boston, have developed a four-step preservation technique that has tripled the amount of time that rat livers can be stored before transplantation.

A supercooled rat liver sits in the preservation solution in the machine perfusion system. Source: Wally Reeves, Korkut Uygun, Maish Yarmush, Harvard University

A supercooled rat liver sits in the preservation solution in the machine perfusion system. Source: Wally Reeves, Korkut Uygun, Maish Yarmush, Harvard University

The process must go through extensive testing and refinement before it could be considered for use in humans. But the technique’s achievement in being the first method to have a successful survival rate after the livers had been stored for three days and possible potential for four-day storage, has broad implications for the future of human liver transplantation.  It gives prospective liver recipients more hope for successful transplantation, and has the potential to finally cause the diminishment of the wait list.


You are not a Christian

The Hobby Lobby fiasco by the 5:4 vote of the SCOTUS is an insult to us all; not just to women. It is another in the never-ending “thumbing their noses” to our Constitution and smiling and shaking hands with Republicans who worry more about money, power and control – all going hand-in-hand. This so-called “do nothing” Congress has not “done nothing.” They have literally peeled away too many of our rights and privileges that we used to have and which we held dear.

QBG_Tilted Tiara

OLYMPUS DIGITAL CAMERAI have a bit of a bug, just a small itch I need to scratch. I tell you my dander is raised, my scalp needs to be scratched; all day I have been thinking of our Supreme Court and just how un-Supreme they truly our. I truly do believe it is time for all of us to take a long hard look at who we are as a nation, get up off our proverbial and begin to do something about the nation we want to be rather than simply complain. If we are unwilling to do something, we have absolutely no right to complain about the outcome.

No Corporation is a Christian and I can prove it, here are the core principles of being a Christian or living within the body of Christ.

  1. Professing a belief in Jesus Christ as Lord and Savior and following his teachings.
  2. Baptism into the…

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Advocating For M.E: Letter to President Obama

The "invisible illness"

The “invisible illness”

I am mailing my 8th letter to President Obama tomorrow.   I approach the content of my letters according to my thoughts and feelings of the day, and sometimes I get inspiration from something I read.  This is one of those times.  I refer to a blog I follow:  ME||WELLINGTON REGION ME/CFS SUPPORT GROUP INC.  Located in the UK.

July 2, 2014

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

Re: M.E. (Myalgic Encephalomyelitis) and The Department of Health & Human Services and NIH

Dear Mr. President;

This year is flying by. When you’re my age, time seems to go so much faster. As a senior citizen, I’ve had many life experiences – some good, some not so good. But, that’s life. If we can’t make adjustments to life situations as they occur, and make the necessary changes in our lives needed to continue on life’s path, we are in trouble.

Following that line of thought, change is necessary within the Dept. of Health and Human Services. Very necessary change. I’m referring, of course, to the lack of sufficient funds for research and the extremely slow-moving progression of recognition of a diagnostic criteria for the “invisible” chronic illness from which my daughter suffers. It is Myalgic Encephalomyelitis, (M.E.)  This disease is commonly referred to as CFS (Chronic Fatigue Syndrome), a misnomer. It is much more than fatigue. We, patients and advocates, are trying to delete CFS from “chronic” usage. Pun intended.

I am a blogger on WordPress, where I write posts about my life experiences and also about advocating for M.E. One of the blogs I follow included, in a recent post, a very definitive description of Myalgic Encephalomyelitis. This is reality:

Imagine if…one day you got a flu or a stomach bug…but it never went away; instead, it got worse…the flu-like state would be with you every day, and there would be pain, in muscles, joints, arms, back, legs, face…and this pain would sometimes be unbearable, so that you couldn’t move or stand up…then there would be nausea and headaches…and you would get repeated infections, anywhere and everywhere in your body…and dizziness and vertigo…and muscle weakness; sometimes you would be so weak that you couldn’t hold a cup to your mouth or lift your arms or turn your head…then you would get extreme sensitivity to light, noise, smell; they would make you sick…you couldn’t bear anyone to touch you; this would cause searing pain…then there would be times when your short-term memory didn’t work and you couldn’t remember words or articulate them…your brain would be so fogged over… on top of all this, you couldn’t sleep…and this would drastically limit your life and it could go on for months, years, decades or even for the rest of your life…”

Mr. President, welcome to the life and world of a sufferer of Myalgic Encephalomyelitis!  Would you believe that more than 3 times as much funding for research was allocated to studies of male pattern baldness than for M.E.?  True.

Please take this plea seriously. This “invisible” disease is serious, and is affecting more young people right now!

Very Sincerely,


Carol Carlson