Tag Archives: advocacy

Florida’s CRC (Constitutional Revision Commission) – Rights of Privacy

The following has been copied from an email I received from Florida ACLU.  So glad I received it.  It’s important to be aware of what our states are doing regarding our guaranteed rights.  It could be they are not “guaranteed” anymore.

Let us be aware!!

Our privacy rights are at stake.

On Thurs., Feb. 1, the Judicial Committee of the Constitution Revision Commission (CRC) is expected to vote on Proposal 22, a dangerous proposal that will eliminate important privacy protections from Florida’s Constitution.

What is the CRC?
Every 20 years, a commission is appointed to examine the Florida Constitution, hold public hearings, and recommend changes to the Florida Constitution that will appear on the ballot. Based on many of the proposals that are being considered, there are several that would be devastating to our existing constitutional protections.

Tell the CRC to reject Proposal 22.

What is Proposal 22?
This proposal abolishes Florida’s constitutional privacy protections, except for those relating to informational privacy. Florida’s Constitution provides greater protections against government overreach than the federal Constitution. It protects us from government surveillance, and government intrusion in personal areas such as marriage, intimate sexual relations, reproductive and personal medical decisions, parenting decisions, such as the right to home school or provide alternative forms of education to children, and more. If proposal 22 is adopted, these protections will disappear.

If we can stop the Judicial Committee from passing Proposal 22, this threat to our right to privacy won’t be put on the ballot.

Tell the CRC to protect our privacy and reject proposal 22!

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The DEA Is At War With Chronically Ill Patients – Again

An article on Forbes.com, written by David Kroll, caught my attention.

kratom plant

The Kratom Plant

First, it was and still is, Cannabis.  Now, it’s another plant.  A natural medicine – not artificially-produced, addictive, pain killers and human killers, known as “opioids,” by Big Pharma.

The U.S. Drug Enforcement Agency has filed a notice of intent (PDF) to place the southeast Asian plant called kratom to the most restrictive classification of the Controlled Substances Act. The plant, Mitragyna speciosa, and its two primary constituents, mitragynine and 7-hydroxymitragynine, will be temporarily placed onto Schedule I on September 30, according to a filing by the DEA today.

Mr. Kroll also states:

Various forms of kratom and teas made from the plant’s leaves are sold in cafes and on the internet. Their primary effect is to provide a short-lived peaceful and calm feeling that is described as pleasant. Consistent with this effect being opioid-like, anecdotal reports indicate that some users have used kratom to successfully recover from physical and psychological dependence on prescription opioids and heroin. Comments on my last report on kratom have also indicated the successful use of teas made from the plant in managing chronic pain without the side effects and addictive potential of prescription opioids like oxycodone, hydrocodone and morphine.

Research has shown why kratom might be a useful and safer alternative to prescription opioids:  its inherent alkaloids, metabolite and an oxidation product in the plant, minimize the opioid receptors in the body.  If the opioid receptors in the body’s cells were not reduced by not consuming kratom, you would have normal body’s “tolerance and dose escalation commonly seen with prescription opioids.”

Thank the CDC (Centers for Disease Control and Prevention – Its main goal is to protect public health and safety through the control and prevention of disease, injury, and disability) for “protecting public health” in this case; (as in the case of Cannabis – Marijuana) as well.

Last month, the CDC came out with a report that kratom “can be abused and that poison control centers have received over 660 calls between 2010 and 2015 regarding kratom intoxication.”  The report stated the plant kratom, had a “stimulant effect” and was “an opioid substitute.”  Opioids are suppressants.  How can kratom be an “opioid substitute” when it has a “stimulant effect”?  How can a plant be an opioid substitute when it actually lessens the effect of an opioid?  The plant lessens the dependency on opioids.

No scientific testing was done.  The DEA has acted only on CDC’s reports of use of kratom which showed:

  • Medical outcomes associated with kratom exposure were reported as: minor (minimal signs or symptoms, which resolved rapidly with no residual disability) for 162 (24.5%) exposures;
  • Moderate (non-life threatening, with no residual disability, but requiring some form of treatment) for 275 (41.7%) exposures; and
  • Major (life-threatening signs or symptoms, with some residual disability) for 49 (7.4%) exposures;
  • For 173 (26.2%) exposure calls, no effects were reported, or poison center staff members were unable to follow up again regarding effects.
  • One death was reported in a person who was exposed to the medications paroxetine (an antidepressant) and lamotrigine (an anticonvulsant and mood stabilizer) in addition to kratom.

The Drug Enforcement Administration includes kratom on its Drugs of Concern list (substances that are not currently regulated by the Controlled Substances Act, but that pose risks to persons who abuse them), and the National Institute of Drug Abuse has identified kratom as an emerging drug of abuse.

Among calls reporting use of kratom in combination with other substances (multiple exposures), the most commonly reported other substances were ethanol, other botanicals, benzodiazepines, narcotics, and acetaminophen.

Aspirin is a drug that could be abused; Tylenol (acetaminophen), Naproxen and Ibuprofen are drugs that could be abused.  Anything taken in huge doses, which are now “safe drugs” could turn into abusive drugs.  If a person’s intent is to inflict harm, it can be accomplished.

The last sentences of the CDC report are:

Kratom use appears to be increasing in the United States, and the reported medical outcomes and health effects suggest an emerging public health threat. Members of the public and health care providers should be aware that the use of kratom can lead to severe adverse effects, especially when consumed in combination with alcohol or other drugs.

The CDC report was based on 660 reports between 2010 and 2015 across the 50 states; more than half of which showed no harm or very little harm to those who consumed kratom.  I believe this is going “a little” overboard.

It is plain to me that the DEA and CDC are doing everything they can, to protect Big Pharma, even when it makes sense to only the DEA and CDC, for which we, with our tax dollars, are paying through the nose.  Again.  Yet.  Still.

Source:  Article by Forbes contributor, David Kroll

[Image of Kratom plant from Forbes.com]

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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?

 

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One of #MillionsMissing

My daughter has ME – Myalgic Encephalomyelitis.  She’s one of those “#Millions Missing.”  On May 25th of this year, there was a world-wide campaign during which millions of pairs of shoes were placed in front of government buildings to show support for the millions of patients who are “missing” from participating in a “normal” life.  A life which they, against their wishes, were forced to leave, due to the debilitating nature of this horrible disease.

There is no known scientific diagnosis; no cure; and no recognized treatment.  Expert clinicians are still experimenting with medications, supplements, etc., while trying to find ways in which to help their patients.  Some things work – but not for long – to help relieve symptoms.  Each patient reacts differently to these “experiments.”  No such thing as “one size fits all.”

My daughter’s symptoms started approximately 25 years ago.  It was not a sudden onset like many other patients.

It occurred slowly over these many years.  The last two years were the worst.  She was still working, but truthfully, towards the end of 2014, I was positive she couldn’t continue with her job.  I don’t know how she did it, and looking back, she doesn’t, either.

She sort of set goals for herself.  Just another month, just another week.  She finally gave it up at the beginning of this January, when her body just gave up.

She cut her hair years ago.  She didn’t have the strength to take care of it anymore.  She used to have such beautiful, long hair.

There were many other activities of daily living (ADLs) she had to stop.  Frugally managing her time and energy allowed her to hold on for another year at the work site.

It wasn’t only the profound exhaustion.  There is the pain – in every part of her body.  She has told me that even her hair feels pain during the worst days.  The viral outbreaks.  The painful and debilitating chronic migraines which could last for days and keep her in bed, immobilized.  Did you ever hear of a migraine in the optic nerve?  Now, I have.

The “brain fog” and the constant wanting to put her head down and sleep.  Concentration was non-existent.  All these symptoms, put together as they were, forced her to bed.  Work was out of the question.  And she suffered all these and more, while trying so hard to keep her job and not appear to be sick at the office.  They frowned upon “being sick.”

She spends most of her days either lying on the couch or in bed.  It’s not where she would like to be.  She is forced to give up a “normal” life.

Talking on the phone is exhausting, and many is the time I’ve told her to hang up because I can hear and feel the extreme effort in her voice as it slows and gets slurry.

ME patients ARE NOT LAZY; THEY ARE NOT MALINGERERS.  Too many patients have lost their families and friends and even doctors.  These people refuse to believe the patient is REALLY SICK and they crossed the patients off their “list.”  They walked away.  That may be the most debilitating and greatest loss of all.

I’ve touched on only a very small amount of her symptoms.  The general public will find it impossible to understand that which patients go through in trying to manage from day to day; hour to hour.

Each day is different.  She never can expect that the next day will be better.  Too many times, it is worse.  There really is no such thing as “better.”  Sometimes she knows she has over-spent whatever energy (spoons) she had on the day before, and her body lets her know about it, for sure, during the next few days at least.

Myalgic Encephalomyelitis is a multi-symptom chronic disease.  All patients do not suffer in the exact same way; however, they do share most of the known symptoms.  As I said above, “each day is different” for each patient.

Sweetheart, if you are reading this, remember I love you so very much.  Words are not enough.  You know.  It is there in the depths of my being.

This post is my ode to you.  You are the most inspiring person I’ve ever known.  And you happen to be my daughter! 🙂

 

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Meet Rik Carlson – ME Patient From Vermont

 

Imagine what it’s like to be so sick you cannot function.
Imagine there is no known pathology for your illness, only symptoms.

Imagine you are too weak to find your own voice… and because you are silent and confused, your physician says, “It’s all in your head.”

Imagine.

Because your illness is invisible, you disappear.

Rik Carlson was afflicted with a sudden onset case of Myalgic Encephalomyelitis on January 2, 1995 and 18 months later was passed the baton to form the VT CFIDS Association, now ImmuneDysfunction.org. He wrote the book We’re Not in Kansas Anymore: Chronic Fatigue Syndrome and the Politics of Disease and has written numerous essays about Chronic Fatigue Syndrome. In 2006 he testified before the Chronic Fatigue Syndrome Advisory Committee in Washington D.C. In 2009 he was part of the published Obama Biden Transition Team report on Health Care in America. In conjunction with Michael Thurston, Rik directed the film Invisible. He lives in Burlington with his wife Barbara, and their cats. Their son, David, is a Marine Corps Veteran and works with Veteran’s Services at the University of Vermont.

The movie, “INVISIBLE” gives voice to a select group of Vermonters who are gravely ill, and until now, have been out of sight. You will hear first person accounts from your Vermont neighbors as they talk about living their lives with Chronic Fatigue Syndrome, CFIDS, Fibromyalgia, or Myalgic Encephalomyelitis, the disease with a thousand names and no known cause or cure.

Please click on the link below and you will be taken to a new window to view the video.

https://www.cctv.org/stream-player-build?nid=118058

[ Source:  http://immunedysfunction.org/invisible.html ]

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New Jersey Federal Judge Paves the Way for Discrimination of Disabled Students By Religious Schools

Noticed on DisabiltyScoop:

A law suit was brought to the Haddonfield Friends School in Haddonfield, N.J. by Angela Rota, of Cherry Hill, N.J. in 2014, on behalf of her son Sky, who is now 12.

“As a private school with religious affiliation with the Religious Society of Friends (Quakers) and under the control of the Haddonfield Monthly Meeting,” [Judge Joseph] Rodriguez said, “the school was exempt from the Americans with Disabilities Act.”

The judge ruled that “Quaker schools are not required to provide services to students with learning disabilities, and that the small Quaker school had not discriminated against a 10-year-old fourth grader with attention dysfunction and dyslexia who was expelled in January 2014.”

“[Rota] said Haddonfield Friends should not be able to claim a “blanket exemption” on religious grounds because the school was not overtly religious, welcomed students from multiple faiths, and made no attempt to convert them.”

Sky was evaluated by a professional and found that, although he was a bright child, he suffered from learning issues, including attention deficit hyperactivity disorder, difficulties with listening and writing skills and dyslexia.

Sky’s parents’ concerns and professionally recommended assistance were ignored by the school, including the requested extra time for tests and providing individual and small-group instruction when there were writing exercises.  Also included in the suit were charges that his teachers belittled him in class.

SOAP BOX:

I believe we should be on alert.  Our hard-won rights are being washed away like the ocean’s water takes the sand as the tide recedes.  The Scales of Justice are weighted against those who are not in strong positions.  The weak are being pushed down and aside, as ultra conservatives are gaining (and have gained) stronger positions.

Disabled and minority citizens are finding their rights are being ignored in favor of those officials’ views who have louder voices and more power.  The “powers that be” are feeling their power, and they are puffing out their chests.  There is more than one way to interpret our laws and our Constitution, and those people are going for the strictest interpretation in order to keep the masses “in their place.”

People PLEASE VOTE.  Voting is the only way to make sure our “representatives” listen to our voices.   If they don’t, then they will have a very short time in office indeed.  The ultra-conservatives want it their way.  Our lawful rights are being stripped.

Religious freedom DOES NOT MEAN only for the few.  We don’t need to have the religious beliefs of some citizens rammed down our throats if we are not of that persuasion.

Freedom from discrimination of our beliefs is one of the most basic ideals.  It is the reason the original colonists came to these shores.  They wanted to practice their religion without discrimination.  Unfortunately, religious discrimination has reared its ugly head here, now.

Other forms of discrimination are appearing in stronger voices.  Religion and disability are not the only victims.  Sexual orientation is another.  I say, let live.  People of different sexual persuasion have a right to live the way they desire.  Are they hurting you, conservatives?  They want to live in peace like everyone else.

Recently, some discriminatory state laws have been signed into law, and some are in the state legislatures and will most likely be signed into law by governors.

Don’t let this continue.  Wake up!  The foundation of our country is in peril – literally and figuratively.

 

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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.

 

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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.

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The UN Is Assessing the World’s Drug Problem

 

united nations

An historic opportunity to achieve more humane and effective drug policy is at risk.

The 2016 UN General Assembly Special Session (UNGASS) on the world drug problem is an initiative that came from sitting presidents of Colombia, Guatemala and Mexico.  The UN General Assembly endorsed the call for an open, honest and evidence-based debate.

The UN General Assembly Special Session (UNGASS) will be convening in New York from April 19-21 and is the first such meeting in 18 years.

Since the deliberations began in Vienna in 2015, they have been neither transparent nor inclusive.  In other words, closed doors negotiations ensured that crucial priorities were neglected and outdated policies retained.

It is expected that the outcome of the April meeting will not result in meaningful change; however, there is evidence of ways to put people’s health, safety and human rights first.  These fundamental aspirations cannot be met without:

 Ending the criminalization and incarceration of drug users;

 Abolishing capital punishment for drug-related offenses;

 Empowering the World Health Organization (WHO) to review the scheduling system of drugs on the basis of scientific evidence;

 Ensuring a broad spectrum of treatments for dependent people and services designed to reduce the harms of drugs; and

 Allowing governments to apply different approaches to drug regulation in order to maximize public health, and destroy the power of organized crime.

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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 

 

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