Tag Archives: Dr. Francis Collins

Myalgic Encephalomyelitis Is Now A Real Disease!

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A guest blogger (Rivka Solomon) posted on Erica Verrillo’s blog, “Onward Through the Fog,” (both women are patients suffering with ME/CFS) and she tells her story of 25 years with this disease, and about her raised hopes upon learning that Dr. Francis Collins, Director of the NIH, has announced IT IS A DISEASE and deserves government research.  The U.S. government’s (at long last) recognition of this debilitating disease, has given hope to all sufferers, their families and friends.

There is one thing, upon reading Rivka’s post, that I hadn’t known before; that is, this disease has grown so widely, that there are past and current NIH employees who are ill with it, and also, employees working for and with the NIH who have family members who are greatly debilitated by the disease.

Again, it is not only what you know; it’s WHO YOU KNOW, that will make inroads possible.  A fact of life.

A popular saying I’ve heard many times:  Cancer is such a popular disease, that there isn’t one family which hasn’t been affected by it.  It seems to me, that, as Myalgic Encephalomyelitis is growing here and around the world, there may come a time when that saying will apply to this disease.

Our NIH researchers better move quickly and make up for all the thirty years of wasted time.

DO YOU HEAR THAT, DR. COLLINS??

 

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Dr. Collins Testified Before The Senate Appropriations Subcommittee

 

Dr. Francis Collins, Director of the NIH (National Institutes of Health), in his testimony, outlined what he intends to do with the very generous funds for the NIH that have been included in President Obama’s budget.

One of the major concerns he spoke about was the strides made in the treatment of cancer.  The quote below brought to my mind, “Why couldn’t this same research be applied to ME (Myalgic Encephalomyelitis)?  According to Dr. Collins, researchers have discovered a way to prevent the cancer cells from getting through the body’s natural immune system.

Our immune system has T-cells to stop and reject foreign cells; however, these same cells need to be told when not to go into overdrive when the cancer cells get through the body’s defenses.

Immune dysfunction is one of the major symptoms from which ME patients suffer.  Dr. Collins’ testimony regarding research which allows the normal immune response to be re-activated seems to hit the nail on the head, not only for cancer, but for ME as well.  The immune system in ME patients seems to give up:  it can’t seem to fight off the invading viruses’ strong hold in their bodies.

Please read the quote, and you will see what I’m zeroing in on:

“Researchers have long been puzzled by the uncanny ability of cancer cells to evade the immune response. What stops the body from waging its own “war on cancer?” As it turns out, our bodies have important built-in checkpoints to prevent our immune systems from running amok and killing healthy cells. Certain white blood cells called T-cells—the armed soldiers of the immune system—are designed to go after foreign invaders, but they also need a stop signal to prevent going into overdrive. One way to do this is through a receptor on the T-cell called CTLA-4 that inhibits its function. Tumor cells have figured out how to take advantage of this pathway by up-regulating CTLA-4; the result is to put the brakes on the immune system, giving the green light for the cancer to grow.

NIH-funded researchers have discovered a way to release the brakes by introducing a monoclonal antibody against CTLA-4, allowing the normal immune response to be re-activated. Dr. James Allison, who led the basic science efforts that led to these insights, was just honored with the receipt of the Lasker Award, the “American Nobel Prize.” Promising results in patients with metastatic melanoma and lung cancer are making this and other immunotherapies the breakthrough treatment of the future. After President Carter was diagnosed with stage 4 metastatic melanoma, he received immunotherapy as part of his treatment.”

Of course, I’m just a lay person.  I haven’t had medical training; however, my mind usually works in an organized way, and of course, I may be completely wrong about my idea above.  I welcome any opinions.  Anyone out there in the blogosphere?

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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.”