Tag Archives: health

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.

 

Email to HHS Secretary-Nominee Burwell:

Dear Secretary-nominee Burwell:

As you assume the important role of Secretary of Health, I want to be among the first to welcome you and urge you to fulfill President Obama’s directive to elevate the priority of ME/CFS or (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) at the National Institutes of Health and HHS.

I, and so many sufferers and advocates, prefer the name M.E. (myalgic encephalomyelitis), and prefer leaving off the CFS (which is the more common name).  This is because this debilitating disease is actually a multi-symptom  illness, and referring to it as a “fatigue” type of illness is doing it, and millions of sufferers, a disservice.  Also, it causes the world’s medical and political communities to misunderstand M.E., and to perpetuate this misunderstanding.  The World Health Organization (WHO) recognized this disease as M.E. – myalgic encephalomyelitis.

In 2012, President Obama wrote to Courtney Miller saying he asked NIH to do more scientific research on ME/CFS, fulfilling a promise he made her at a Town Hall Meeting in Reno, Nevada. Her husband has been severely ill with ME/CFS for years.  President Obama’s Promise was the first glimmer of hope that our government would approach this illness seriously.  My daughter suffers from it, too.

ME/CFS affects more than 1 million Americans like my daughter. It costs the U.S. government and our economy more than $20 billion annually in disability, Medicare, lost tax revenue and lost productivity, according to statistics.  It is as disabling as end stage renal failure and late stage AIDS. There are no FDA approved treatments to relieve patients’ suffering.

NIH only spends $5 million per year on scientific research on Chronic Fatigue Syndrome – less than when President Obama made his promise – while it spends $115 million annually for Multiple Sclerosis. Because of NIH’s commitment to MS research, there are now 9 FDA-approved treatments and MS patients can lead productive lives. That’s what my daughter and millions of others need. She needs a federal commitment to research ME/CFS. I ask you to immediately execute an important recommendation made by HHS’ Chronic Fatigue Syndrome Advisory Committee — that NIH issue an RFA (Request for Applications) for $7-10 million for researching biomarkers, etiology and treatments for ME/CFS.

My daughter, and millions of sufferers, have cognitive problems, deep pain, extreme exhaustion, immune dysfunction, digestive difficulties, terribly severe headaches and, quite often, cannot tolerate light or sound. You have the power to help her get her life, her health and dignity back. Please commit to a stronger federal response to her health crisis, and that of so many others.

Thank you for your attention.

When Chronic Fatigue Syndrome Harms Vision

M.E. (myalgic encephalomyelitis), also known as CFS, is a many-symptom illness. This article sheds some light on that.

WellME || Wellington Region ME/CFS Support Network

Blurring, intolerance to light, headaches from reading; these are just a few of the vision problems that often come with chronic fatigue syndrome.

 By Beth W. Orenstein

Many people diagnosed with chronic fatigue syndrome (CFS) also experience problems with their vision. Doctors believe that these vision-related chronic fatigue symptoms stem from brain dysfunction more than eye dysfunction. The signals that the brain sends to the eyes to let you know where you are and what you’re seeing may not be functioning properly when you have chronic fatigue syndrome.

Vision Problems and Chronic Fatigue Syndrome: It’s All a Blur

Most often, patients report having periods where everything appears blurry or seems foggy. “This will happen most commonly when they stand up and get lightheaded,” says Peter Rowe, MD, director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center in Baltimore.

Other vision problems that chronic fatigue syndrome patients…

View original post 97 more words

Notes on the ME Awareness Day, Special Episode, May 12th

blue ribbon for me

A little note about the date chosen:  May 12th was Florence Nightingale’s birthday.  Nightingale is thought to have suffered from ME for years, because she did most of her teaching from her home and much of it when she was bed bound.  This information was offered by Jennifer Brea, who was the moderator of the special episode through Thrive Show out of Princeton NJ, which can be seen on YouTube at this link.

The panel participants for the discussion were:

Jennifer Brea (Host and a patient suffering with severe ME) is the director of Canary in a Coal Mine, a documentary film about life with Myalgic Encephalomyelitis.  She also cannot travel much and when she does, needs a wheelchair.  She is mostly bed bound.

Leonard Jason is a professor of psychology at DePaul University and Director of the Center for Community Research. He has served on the editorial boards of ten psychological journals, and has served on review committees of the National Institutes of Health. He currently has NIH grants to study the epidemiology of ME/CFS among youth, and has a longitudinal study involving tracking college students before and after getting mono.

Ryan Prior is a journalist, film producer, and social entrepreneur from Atlanta, GA.  A former writer for The Daily Beast and USA Today, he is now executive producer and writer of the feature film Forgotten Plague (previous working title: The Blue Ribbon). The documentary focuses on the role that major new trends in Big Data and genomic medicine play in addressing ME/CFS and transforming the future of medicine. In conjunction with the film, he is co-founder of the Blue Ribbon Foundation which will promote the documentary and install first-year medical students at top neuro-immune institutes.

Jeanette Burmeister is an attorney, ME activist, writer, mother, and wife. You can follow her health journey on her WordPress blog, Thoughts About ME.  She is also an ME patient.

Beth Mazur is a fellow ME patient and the lead architect overseeing all technical planning for HealClick, a website focused on helping neuroimmune patients learn about treatment reviews from patients that best match them. Previously, she was a consultant and technical product manager for startup companies including Merced Systems and Jaspersoft. She also built open-source software for microfinance institutions with Grameen Foundation.

 

Llewellyn King is a journalist whose long career began in Southern Rhodesia (now Zimbabwe), where he was born and raised.  He was a correspondent for Time, UPI, London newspapers.  Before starting his own publishing group, he worked for many media outlets.  As Editor-in-Chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.  Also, he is the founder, executive producer and host of “White House Chronicle” on PBS.  He was a regular contributor on Voice of America, CNN, C-Span, NBC, “The Today Show,” “Meet the Press” and others.  Llewellyn’s interest in ME is due to a friend who is a sufferer.

Following are only some of the many comments made and questions asked of the panel (there were many more, but I think the sample below gives an idea of the thoughts on observers’ minds):

“I’ve heard several journalists say they’d love to cover ME, but they need something to write about.  What makes a story newsworthy?  What can we do to raise the profile of ME in the media?”

“What is needed is a concise, succinct description about ME for the news media to use.”

“How can we instigate and invigorate interest in patients to join advocacy work for ME?”

“Find the right patron in Congress to carry our banner – perhaps a newbie congressperson who is looking for a cause.”

“How can the law be used as a tool for change?  Do you think there is more potential for using the law in the US and other countries to advance ME advocacy?”

“How can we raise the funding needed for an ME lobbyist in Washington DC when we can’t even raise the funding for the much-needed research by interested and qualified scientists?”

“Change the name.  Stop using ‘CFS’.”

“Is the internet enough for an ME advocacy presence?”

The actual video lasts 1 hour and 45 minutes.  If you have the time and are keenly interested in learning about ME in the words of some of the people intensely involved, you will go away enlightened about what can be done in advocacy and you will find it to be quite compelling.

 

 

 

Llewellyn King’s long and remarkable career in journalism began in Southern Rhodesia (now Zimbabwe), where he was born and raised, as a 16-year-old foreign correspondent for Time, UPI and two London newspapers, The Daily Express and The News Chronicle.

Before starting his own publishing group, King worked for a pantheon of British and American media outlets. As editor in chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.

– See more at: http://www.whchronicle.com/author/llewellyn-king/#sthash.Ge0stfCE.dpuf

Llewellyn KingLlewellyn King’s long and remarkable career in journalism began in Southern Rhodesia (now Zimbabwe), where he was born and raised, as a 16-year-old foreign correspondent for Time, UPI and two London newspapers, The Daily Express and The News Chronicle.Before starting his own publishing group, King worked for a pantheon of British and American media outlets. As editor in chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.- See more at: http://www.whchronicle.com/author/llewellyn-king/#sthash.Ge0stfCE.dpuf
Llewellyn KingLlewellyn King’s long and remarkable career in journalism began in Southern Rhodesia (now Zimbabwe), where he was born and raised, as a 16-year-old foreign correspondent for Time, UPI and two London newspapers, The Daily Express and The News Chronicle.Before starting his own publishing group, King worked for a pantheon of British and American media outlets. As editor in chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.- See more at: http://www.whchronicle.com/author/llewellyn-king/#sthash.Ge0stfCE.dpuf