#MillionsMissing Protest Coverage

 

Sept. 27th was a day of national and international protesting and recognition of #millionsmissing.  ME, myalgic encephalomyelitis, is a greatly disabling, debilitating disease.

ME has been pushed to the sidelines for several decades by the HHS, CDC, NIH and governments around the world, as a figment of the patients’ imaginations.  The patients have been insulted with taunts and accusations that they are not really sick. Far from the truth.

We, advocates and patients who are able, must continue to make our voices heard.  We need more research and granting of funds by National Institutes of Health to continue and advance the research that has already been started by non-profit organizations with private donations.

We have lots to do to catch up and make up for the time lost and the lives lost along the way.  Millions are counting on the world to wake up and recognize ME as a devastating disease to the patients and families.

Please take a look at the site below to familiarize yourself with ME and what is being done to bring it to the forefront in the eyes of the world.

http://millionsmissing.org/protests/?mc_cid=5c6fc569e8&mc_eid=778f00ceea

 

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

 

The Election Isn’t The Only Thing On My Mind

 

At the top of my priority list is my daughter.

It was about 25 years ago, that she started noticing symptoms of loss of stamina, unusual tiredness, lots of pain, and seemed to be fighting low-grade flu-like symptoms every so often.  They were the types of feelings that we all just dismiss (was I really feeling so bad?) and go on with our lives, hoping those body signals of something “just not right” will go away.  And, to a point, they did, and no more thought was given.

But, every so often, they were there again.  Most times, they were almost unnoticed; other times, enough to force her to go about her daily activities of caring for her children, working full time, being a thoughtful, responsible person, by “pushing through” those symptoms, and then just falling into bed, exhausted.

This went on for so many years until about 15 years ago, when she was already living close by in Florida.  She came over for dinner one Sunday, with her then husband and her two daughters.  They arrived in late afternoon, before dinner time, and she told me she needed to lie down.  She was completely exhausted and just had to go to bed.  It was like an emergency, and I hurriedly prepared the guest room bed for her, and she practically fell into it as I closed the blinds.  She couldn’t move; and slept very soundly for hours.  When she got up, she didn’t feel refreshed, but she was able to dine with us and then they went home right afterwards.  It was from that point, that the symptoms would become more frequent and noticeable.

Going to work was and is not an option as of this past January 2016.  She really should have stopped work at least a year before.  Looking back, she kept up her pace with great difficulty because she was a single mom and her younger daughter was totally dependent on her, and she worried about finances.  She was living a physical, mental, stressful nightmare.

My daughter suffers with the disease that is the reason for the letter below which is circulating in the House of Representatives on behalf of MillionsMissing (a global movement for health equality) and is addressed to Dr. Francis Collins, Director of the National Institutes of Health.

Francis Collins, Director
National Institutes of Health
1 Center Drive, Room B1-126
Bethesda, Maryland 20892-0001

Dear Dr. Collins:

We write to thank you for your attention to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and encourage you to continue to strengthen the National Institutes of Health’s (NIH) efforts in ME/CFS biomedical research.

As you know, ME/CFS is a complex, debilitating, and chronic disease afflicting 1 to 2.5 million Americans. It costs individuals, the U.S. health care system, and our economy an estimated $17-$24 billion annually. Yet, as the Institute of Medicine noted in its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” there has been “remarkably little research funding” to date to discover its cause or possible treatments.

A number of us sent you a letter in March of 2014 to express support for ME/CFS research and are heartened by your commitment to advance diagnosis, treatment, and a cure for ME/CFS through a reinvigorated Trans-NIH ME/CFS Working Group (Working Group) housed within the National Institute of Neurological Disorders and Stroke (NINDS), and new intramural and extramural research programs that will bring new investigators into the field.

We encourage the Working Group to consider in a timely manner the input received through its recent Request for Information (RFI) regarding emerging needs, opportunities, and strategies for ME/CFS research and research training. We also ask that you provide us with the current status of this planning effort and the specific intramural and extramural activities planned for the rest of FY 2016, 2017, and 2018.

Thank you for your attention to these critical issues. We look forward to your response.

Sincerely,

Zoe Lofgren                           Anna G. Eshoo
Member of Congress           Member of Congress

The U.S. House of Representatives is currently circulating the letter asking the NIH to strengthen ME/CFS biomedical research efforts. NOW, is the time to contact your representative to ask him or her to sign the letter.  Representatives have only until Wed., Aug. 31 to agree to sign the letter so action must be fast.

Here is a “Prevalence of Well-Known Diseases” comparison chart by state, which compares the number of people in each state that suffers from ME, HIV/AIDS, Parkinson’s (PD), and Multiple Sclerosis MS).  Myalgic Encephalomyelitis (ME) is quite short-changed as far as NIH funding, research and timeliness is concerned.

The following websites will be helpful if you had or will contact your U.S. Representatives:

http://www.meaction.net/wp-con tent/uploads/2016/08/Script- and-How-To-1.pdf

https://drive.google.com/file/ d/0B8cZyk4UDCJkQkhfWHJRbU1BZlU /view?usp=sharing

https://docs.google.com/forms/ d/e/1FAIpQLSd3mTxetR874PxJjDA1 AwLDPna9fSNcaKoIx- YnldwGxEerCA/viewform?c=0&w=1

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

 

What is ME/CFS?

The Open Medicine Foundation – Nonprofit fundraising and support for a cure for Neuro-Immune Disease, Chronic Fatigue Syndrome, ME, Lyme Disease, Fibromyalgia and engages patients in research.

Please click on link below to get the real, true story in Q & A form:

Source: What is ME/CFS?

 

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

 

Why Is Big Pharma Fighting Legalizing Marijuana?

 

It’s obvious.

We all know by now that most prescribed pain killers (especially opioids) are addictive, and yet, our government bows down to Big Pharma and continues to allow clinicians to prescribe them indiscriminately.

Many, many committees, commissions, agencies , etc., have been holding meetings to discuss this problem.  Has anything been done?  Of course not.

All the “conclusions” of these “get-togethers” have amounted to: ZERO.

Now, we have something else to throw into the “pot.”

There’s a body of research showing that painkiller abuse and overdose are lower in states with medical marijuana laws. These studies have generally assumed that when medical marijuana is available, pain patients are increasingly choosing pot over powerful and deadly prescription narcotics. But that’s always been just an assumption.

Now a new study, released in the journal Health Affairs, validates these findings by providing clear evidence of a missing link in the causal chain running from medical marijuana to falling overdoses. Ashley and W. David Bradford, a daughter-father pair of researchers at the University of Georgia, scoured the database of all prescription drugs paid for under Medicare Part D from 2010 to 2013.

Medical marijuana is being used for medicinal purposes and not for “recreational” purposes.  There is this misconception held by very conservative groups:  medical marijuana will be used for recreational purposes or will lead to recreational marijuana use in order to get “high.”  Medical marijuana is used as medicine to relieve pain and other symptoms of chronic and/or serious medical conditions.

The graph above, published by Bradford and Bradford, Health Affairs, July 2016, sheds much light on the impact the use of medical marijuana has had and continues to have, on addictive drug use.

Let’s get on with it, elected officials!  Let the light shine through, and give our ill citizens availability to this plant that has many healing qualities, especially relief from many types of pain.  Some of your colleagues have seen the light and passed state laws allowing prescribing of medical marijuana.  Until the federal government passes a national law or properly amends the scheduling of marijuana, I hope more states will join the almost 30 states which have already passed marijuana laws.

Source:  Article in the The Washington Post by Christopher Ingraham

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

 

Are We Getting Closer To A Myalgic Encephalomyelitis Biomarker?

 

In #MEAction‘s latest announcement, we’ve learned that the National Institute of Allergy and Infection Diseases (NIAID) of NIH recently funded Dr. Derya Unutmaz’s latest grant application.  Dr. Unutmaz is the renowned immunologist at the Jackson Laboratory for Genomic Medicine.

[Dr. Unutmaz’s] research focuses on defining the optimal immune response and what happens during infection and chronic disease.

A few years ago Suzanne D. Vernon, PhD was introduced to Dr. Unutmaz, and knew his research focus was a very good fit for ME/CFS.  Dr. Unutmaz became intrigued with ME and the ongoing research to uncover its mysteries.  He decided to apply to the NIH for funding to expand the numbers of patient samples and types of quantitative analyses on the blood.

The National Institute of Allergy and Infection Diseases (NIAID) of NIH recently funded Dr. Unutmaz’s grant application. He will receive five years of funding – totaling $3,281,515 from the National Institute of Allergy and Infectious Diseases — to find better ways to diagnose and treat ME/CFS. Dr. Lucinda Bateman and Suzanne D. Vernon, PhD are Co-Investigators on this project and the Bateman Horne Center will provide the required blood samples and correlating clinical information for the participating samples.

We need Myalgic Encephalomyelitis information taught in medical schools and information disseminated to all doctors.

For too long, research in ME/CFS has been lean and under-funded for several reasons, including the shortage of accurately diagnosed patients available for research studies. The Bateman Horne Center – a clinic specializing in ME/CFS/FM and with a large number of patients who have been carefully and accurately diagnosed, and continue to be treated effectively – will partner with Dr. Unutmaz so that a Research Ready Army of well qualified patients can participate in this exciting research.

Source:  $3.28 million awarded for ME/cfs biomarker study.

See also:  Bateman Horne Center

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

[Alien image from bingdotcom]

 

Solve ME/CFS Initiative Takes Part in #MillionsMissing Protest

 

Solve ME/CFS Initiative President Carol Head said that following last year’s Institute of Medicine report, there is no reason for the federal government to drag its feet on aggressively funding research on the disease.

“It is the role of NIH and CDC to care for the health of their citizens, and the health of those citizens is currently being funded by ourselves for ourselves,” Head said.

The protest included a series of demonstrations by ME/CFS patients and their loved ones at locations around the country and across the world, including: Washington, D.C., San Francisco, Philadelphia, London, Melbourne, Seattle, Atlanta, Boston, Dallas, Raleigh, Canada, the Netherlands and Belfast. Protesters in D.C. assembled outside the Department of Health and Human Services (HHS) headquarters. Other U.S. protesters assembled outside the regional HHS offices.

#MillionsMissing demonstration in Washington, DC. (Photo by Mary F. Calvert)

The shoes represent the active lives lost by the owners of those shoes due to being stricken with this devastating disease.

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

[Video and photos from Solve ME/CFS Initiative]

Dr. Jared Younger: Innovative Research on Neuroinflammation, Pain, and Fatigue

 

What is it that causes the chronic, severe pain and profound fatigue in patients suffering from fibromyalgia and ME/cfs (commonly known as “Chronic Fatigue Syndrome”)?  On a youtube video, uploaded on March 28th, 2016, Dr. Jared Younger is questioned about his knowledge and research on how inflammation in the brain affects the rest of the human body.

Dr. Younger received his PhD in Experimental Psychophysiology at the University of Tennessee-Knoxville. He completed his post-doctoral fellowship at Arizona State University and the Stanford University of Medicine, before taking an assistant professor position at Stanford.

In 2014, Dr. Younger joined the faculty at the University of Alabama-Birmingham (UAB). He is currently funded by the NIH, the Department of Defense, and several nonprofit agencies to develop techniques for diagnosing and treating neuroinflammation, pain, and fatigue.

Dr. Younger starts off the program by explaining, in simple terms, how inflammation is a good thing and when it turns around and becomes a bad thing that our bodies experience.

Dr. Younger talks about the hormone Leptin (what circumstances cause an uptick in the levels of Leptin?); the role of the hypothalamus; what role do the vagus nerve, cytokines and microglia play?; and many other factors controlling the inflammation in the brain.

The questions posed to Dr. Younger are intelligent, and thought-provoking (IMHO).  Dr. Younger’s responses are enlightening and are easily understood by the average person who has an interest in the subject of how inflammation in the brain causes pain and fatigue.

One of the things Dr. Younger is asked refers to the use of LDN (low dose naltrexone) which has been found to be of help to many patients.

There is so much information correlating to chronic pain and profound fatigue and the inflamed brain.  I highly recommend this one hour video, if you have the time.  Watching only a portion can be quite edifying.

 

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

 

 

 

 

 

Study: Students With Disabilities More Often Suspended At Charter Schools

Continuing the discoveries of discrimination suffered by children, students, and adults with disabilities:

In a first-of-its-kind report, authored by Shaun Heasley, in “DisabilityScoop,” a study shows students in charter schools, who are suffering some disability, are being suspended at a rate higher than typical children in public schools.

When discipline records in nearly 5,000 schools were studied at the University of California, it was found that there are great disparities in all grades, according to a report from the Center for Civil Rights Remedies at the Civil Rights Project.

“It’s disturbing to see so many of these schools still reporting such high suspension rates because that indicates charter leaders continue to pursue ‘broken windows,’ ‘no excuses’ and other forms of ‘zero tolerance’ discipline,” said Daniel Losen, the study’s lead author. “And we know from decades of research that frequently suspending children from school is counterproductive.”

“The high-suspending charters need not look very far to find much lower suspending charter schools,” Losen said. “So these findings elevate the need for oversight of charter schools and a continuing review for possible civil rights violations. There should be no excuses for charter schools that fail to comply with civil rights laws.”

It is a sad commentary on our educational system and indeed, our social structure, when children and adults have to be faced with, and suffer, the prejudice and ignorance of citizens who should know better.

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

 

 

New Study: CBD Prompts Antidepressant-Like Effects

 

A Spanish study reported on “Marijuana.com’s blog” and taken from “ScienceDirect,” validates the CBD cannabinoid as having rapid acting antidepressant-like effects.

For the study, surgically modified OBX mice were first compared with ordinary mice and then both given the CBD cannabinoid. 30 minutes later, stunned scientists observed a noteworthy decline in hyperactivity, typically associated with anxiety and depression in humans.

There are 14.8 Americans who suffer from major depression, and this research is both encouraging and suggestive of a CBD cannabinoid that could be readily available and at reasonable cost.

---

According to the report, CBD protects nerves and protects against brain injury; it fights MRSA infections, which are resistant to antibiotics; it takes a preventative role against inflammation; it induces cancer cells to “commit suicide; and has other important significance in administering to human maladies.

---

For more information, please watch this video:

https://youtu.be/31SrjjgPbhU

---

[ CBD image from bingdotcom ]

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

---

Rapid response for inflammation control in songbirds’ brains could lead to therapies in humans

 

A biological process in the brains of zebra finches shows that the songbirds respond quickly to trauma and are capable of controlling the natural inflammation that occurs to protect the brain from injury. Understanding the process well enough could lead to therapies in humans to control inflammation and hasten recovery from brain injury such as stroke, says American University neuroscientist Colin Saldanha.

Chronic inflammation causes cell damage and the loss of important neurons that regulate memory, mood and movement. Being able to control and limit inflammation in an injured brain may preserve vital brain function.

This information may lead us to believe that possibly the scientific community will expand research on this important development that may affect patients suffering with Alzheimer’s, Parkinson’s disease, strokes and inflammatory diseases, such as M.E. (myalgic encephalomyelitis).

For more than a decade, National Institutes of Health has funded Saldanha’s research because of the implications it has for treating neurodegenerative conditions.

Source: Rapid response for inflammation control in songbirds’ brains could lead to therapies in humans 

 

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