Tag Archives: patients

How Did Marijuana Fare In 2016 Omnibus Spending Bill?



While millions of Americans let out a sigh of relief, knowing our government will not shut down at least for another fiscal year, millions of Americans may not have been aware of marijuana legislation that was and was not included in the Omnibus bill.

According to an article in The Daily Chronic, the following marijuana re-authorizations for 2016 took place:

  • Department of Justice and the Drug Enforcement Administration will not have funding for interfering with state medical marijuana laws; and
  • The DOJ and DEA will not have funding to interfere with state industrial hemp research programs.
  • col

Unfortunately, the following individual provisions were not included:

  • To permit Veterans Affairs doctors to prescribe medical marijuana to military veterans;
  • To prevent the V.A. from denying services to veterans because they are state recognized medical marijuana patients;
  • To include Senate-backed language seeking to authorize financial institutions to engage in relationships with state-licensed marijuana business; and
  • To allow the District of Columbia to sell and tax marijuana.  (Currently, DC residents can grow, possess and share marijuana.)

The parts that stand out for me is:

  1. The fact that our members of Congress are still interfering with doctor-patient relationships in the VA; and
  2. Licensed businesses still have to pay their bills in cash instead of accessing banking services.

This is a very slow and frustrating process.

In the meantime, patients suffer and Congress shows it DOES NOT CARE about our very sick and needful military veteran citizenry.


And, rubbing salt in the wounds:  the licensed, lucrative, high tax-paying marijuana businesses are not allowed to use the same banks to which small, under-funded, and low tax-paying businesses across the country have access.

Is there something wrong with this picture?

[Images from bingdotcom]

[ Header image from http://www.freewebheaders.com ]

Dr. Ron Davis Debunks NIH Claims Of Fairness


The latest post from MEAdvocacy.org starts off with the title and first paragraph:

“Dr. Davis Debunks NIH’s Claims of Fairness”

Posted by Tracy Smith, Sept. 3, 2015

Dr. Davis’ accomplishments and his ideas of how his team will work in studying severe ME patients.  The deception emanating from the National Institute[s] of Health (NIH) is that ME/CFS funding is a priority for them, yet NIH have rejected Dr. Davis’ application for funding for his study of severe ME patients..  Due to some very generous private funding, Dr. Davis’ Big Data study on Severe ME will be starting but, there is a desperately need for government funding to keep it going.

Quoted from “MEAdvocacy.org

Myalgic encephalomyelitis (ME), is a complex disease involving profound dysregulation* of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport as well as cardiovascular abnormalities. The disease affects people of all ages, genders, races and economic levels.

Sunshinebright continues:

It is widely known in “ME circles,” that the NIH , has pointedly reduced, and kept very low over many years’ time, the funds allocated towards research for finding biomarkers, treatments and ultimately, a cure for this severe, debilitating disease.

The blatant deceptions coming out of the NIH; that “highly respected institution,” have them claiming that funding research for ME is a high priority.  NIH also claims that requests for applications and submission of applications have been forthcoming in very few numbers; and those which have been submitted, have been of poor quality.  NOT TRUE.

Due to the fact that these (false) claims are coming from such a prestigious, august government body, their claims – whatever they may be – are taken seriously – unfortunately, for ME patients, in this case.

The fact is that our ME community has seen a rise in the number of scientists and researchers from our American medical and scientific communities, and they are coming forward to begin the much-needed research for ME.  The backgrounds and experience of these scientists are of the highest caliber, and they have had their applications for NIH funding for their ME studies returned unapproved.

The NIH has approved a great deal of applications from many of the researchers who want to work on ME research for research grants ; however, the applications that were approved were NOT FOR RESEARCH RELATING TO ME.  When ME is listed as the disease on the submissions, the applications are not approved.

Quote from MEAdvocacy.org:

NIH has approved countless applications for studies from these same scientists, as long as it was not ME/CFS related.  Could it be that the famous virus hunter, Dr. Ian Lipkin as well as Dr. Mady Hornig, suddenly lowered the quality of their application when it came to ME?  Did Dr. Ronald Davis, the award winning inventor with decades of NIH funded research, abruptly lose his brilliance to be graded “not that great” by the application reviewer?

*dysregulation:  “Impairment of a physiological regulatory mechanism (as that governing metabolism, immune response, or organ function).” ~Wikipedia dictionary.

[ Header image from http://www.freewebheaders.com ]

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]

#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?




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

Volunteering Has Its Own Rewards

When I was in high school, I decided that I was going to be a nurse because I always wanted to “take care of people who needed help and to bring some happiness into their lives.”  At that time, I hadn’t realized what a noble calling that was.

One of my nursing instructors looked just like this!

One of my nursing instructors looked just like this!

But I thought that perhaps I should “test” myself and see how I would feel and react to a hospital setting and experiencing being with people who were ill and/or disabled.  I was totally lacking in that sort of experience.

So, during my Junior year, and during the summer, I volunteered in the “Jewish Hospital for Chronic Diseases,” in Brooklyn, NY, a hospital/nursing home for chronically-ill and disabled patients, with room for hundreds.  (I don’t think it exists anymore.)  The setup was in very large wards, containing approximately 20-30 beds.  No private rooms.  This was a hospital for indigent patients.

The hospital building looked somewhat like this - really old.

The hospital building looked somewhat like this – really old.

Those who were able, participated in a patient-controlled and staff-approved social club, and they managed to arrange for their own entertainment.  They were making the best of their situation – some would be there for the rest of their lives (many were young people).  In all the time I spent in that facility, I hardly ever saw visitors for the patients, but they seemed to have accepted their lot in life and they seemed happy and joyous and capable of, yes, excitement.  (Remember, I’m thinking back to the time I was a young teenager, and trying to experience again, my feelings and perceptions.)

There was an organizer/leader – his name was Manny, and he had his “secretary” and “treasurer.”  Manny was the most social person you could ever imagine.  He was wheel-chair bound and was one of the most intelligent, jovial, thoughtful people I think I had ever, and have ever, met in my life.  He was suffering from MS.

man in wheelchair

If the patients smiled and laughed any harder, I swear their faces would split apart.

Manny immediately put me at ease and welcomed me so warmly.  I told him I was there as a volunteer and had scheduled myself to give at least 10 hours during the week and some on the weekend as well.  I made his day and many more.  During the summer, I devoted more.  Visitors were a treasured commodity.

I found myself feeling that I found a second home.  The best thing for me was the feeling of great joy that I felt, in the giving.  Yes, volunteering had its own, unexpected, rewards.

Volunteering is more than it's cracked up to be.

Volunteering is much more than it’s cracked up to be.

[All images from bingdotcom]

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

Observing National Nurses’ Week – May 6-12, 2014

When I was a young woman, I wanted to study to become a nurse, but, at the time, my health thwarted that dream; however, I never lost my interest in all things medical.  I am so glad that nurses are being recognized for the stupendous job they do.

Observing 2014 National Nurses Week:

“Nurses: Leading the Way”
A statement by the Secretary Of Health and Human Services

Nurses are awesome. Tell us why by tweeting @HRSAgov or commenting on HRSA's Facebood page during Nurses Week, May 6-12.“It is only fitting that the theme for this year’s National Nurses Week is “Nurses: Leading the Way.” After all, nurses lead the way in showing an elderly patient how to manage his or her diabetes. They lead the way in making sure their patients – children and adults – get the vaccinations they need. They lead the way in helping our young moms learn how to care for their infants. And they lead the way in conducting research to promote high-quality life for those with chronic illnesses, and to help all of us stay healthy across the lifespan.

And nurses, our trusted advisers on health issues, led the way in reaching out to their patients, neighbors, and families to make sure they enrolled in health insurance coverage through the Health Insurance Marketplace. Nurses, who are on the front lines of health care, know firsthand how important coverage can be to their patients: to their health, their peace of mind, and their financial security.

We’re continuing to rely on nurses to help educate patients, some of whom had never had health insurance before, on how to use their newly acquired coverage to get the vital preventive and primary care they need. Nurses are also helping patients use new health information technology tools to manage their own care and ultimately improve their health.

That is why this Administration invests in workforce development, education, and training for nurses.

As a result of funding through the Affordable Care Act and other investments, the Administration has greatly expanded the National Health Service Corps and the NURSE Corps, two initiatives that provide educational loan repayment and scholarships in return for practice in the nation’s medically under-served communities. More than 3,680 National Health Service Corps and NURSE Corps nurses – including 1,889 nurse practitioners and 1,475 registered nurses – are providing care across the country to those who need it most.

In addition, during the 2012-2013 academic year, the Administration funded the training of 10,600 nursing students through advanced nursing education initiatives. These are just a few of the initiatives that support the education and training of nurses.

National Nurses Week culminates on May 12, the anniversary of the birthday of perhaps the most famous nurse, Florence Nightingale, the original nurse leader.  Please join me this week and all the weeks that follow in recognizing nurses across the country for following in Florence’s footsteps and thanking them for the critical work they do in bringing better care and better health to all Americans.”

Crowdfunding for ME/CFS Research

If you all have been reading my blogs, you must have read some about ME (myalgic encephalomyelitis).  My daughter has this debilitating chronic illness.  And, of course, I try to keep up with as much research as I can, and ways in which patients (and doctors, if they’ve even heard of it), are trying to “manage” their illness; in different ways, and with more success, than others.  And my daughter is doing her best in “keeping up” and advocating as much as possible.

I came across another blog by David Tuller.  David is a journalist who specializes in reporting about science and medicine.  He graduated from the Berkeley Graduate School of Journalism, and has articles published in the New York Times and other prestigious journals. He speaks about the disregard our government has towards this terrible, debilitating disease.  Between the pharmaceutical industry, medical insurance industry, psychiatrists and politics, ME patients are caught between “several rocks and hard places.”

In this particular blog, he talks about a scientific conference at Stanford, as well as the discussions prior to the actual meeting:

Crowdfunding For ME/CFS Research

by David Tuller, Dr.ph.  |  

In late March, hundreds of scientists, clinicians and patients gathered for a four-day scientific conference on the illness widely known as chronic fatigue syndrome but more appropriately called myalgic encephalomyelitis. (The scientific name means “painful inflammation of the brain and spinal cord;” most people these days refer to the illness as ME/CFS.)

Sunshinebright’s comment:  I was so glad to finally find an easy-to-understand definition of what “myalgic encephalomyelitis” means!

At the conference and a pre-conference gathering at Stanford, which I covered for the website BuzzFeed, attendees heard from researchers who are finding all sorts of physiological abnormalities in people with the illness. While efforts to find a single cause have not produced results, evidence presented during the meetings clearly demonstrated that something has caused patients’ immune systems to go into a state of hyper-activation. The resulting inflammation is likely to be the cause of many of the myriad symptoms that can characterize the illness.

The conference was organized by the International Association of CFS/ME, the main scientific organization related to the illness. The pre-conference meeting at Stanford provided researchers from the university the opportunity to present their own ongoing work related to immune dysfunction.

Patients were delighted by some of the research findings but disheartened by the government’s continued lack of funding support. In recent years, the National Institutes of Health (NIH) has spent only $5 million on the illness, while other conditions with fewer patients but more public recognition have received much more federal support. The scientists, too, are struggling to cope with the limited resources available, and many grumbled at what they view as the government’s long-standing neglect of ME/CFS.

One top researcher, Ian Lipkin, M.D., director of Columbia University’s Center for Infection and Immunity in New York City, has even taken the highly unusual step (for an academic researcher) of resorting to crowdfunding in an attempt to raise more than $1 million in donations for his research into infectious triggers of ME/CFS. While NIH recently granted Dr. Lipkin more than $30 million for translational research, it has refused his request for more funding for his ME/CFS efforts.


Important ME Research That You Should Be Aware Of

The more people this message reaches, the better. It is imperative that somewhere, down the line, someone will make a difference.