Tag Archives: World Health Organization

Mama Chill in the UK Has a Blog on Blogspot

Mama Chill has M.E.  She doesn’t post often, but when she does, it grabs you.  She “tells it like it is.”  Please read her latest:

http://mamachillandme.blogspot.com/2014/09/far-from-cute-furry.html

 

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M.E. – Myalgic Encephalomyelitis “Canary in a Coal Mine” Report

Documentary Film Program Provides $1.5 MM In Grant Support to Filmmakers in FY2014

The Documentary Film Program’s (DFP) Spring 2014 grants totaled $975,000 awarded to 44 films, including four films from the Documentary Film Initiative in Asia. This total marks an increase from the Fall 2013 funding that totaled $711,500 in grants and awards across all stages of production.

 

The larger number of projects selected for support by Sundance Institute reflects a funding philosophy designed to embrace both existing and emerging mandates. Films selected include both passionate treatments of human rights issues and contemporary social relevance globally, as well as artful or cinematic documentary films that are compelling, creative, and meaningful for the culture at large. This expansive round has called for a greater number of film awards than ever before, in this case 44 films globally.

DEVELOPMENT
Canary in a Coal Mine  (Jennifer Brea, U.S.) and others.

A film about life with M.E., the most prevalent and devastating disease your doctor has never heard of.

Watch the trailer for “Canary in a Coal Mine” below:


What is M.E.?  And what is the difference between it and CFS?
It is an injury to the Central Nervous System. usually triggered by an infectious disease process, e.g. a virus, or by chemicals over stimulating the immune system.  (Some researchers believe that M.E. is only ever caused by a virus.  Others have commented that the same symptoms can be caused by chemicals.

 

M.E. is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems.

Prognosis is variable depending on how much and which part of the brain has been damaged.  Complete pre-illness recovery is rare but possible (around 6% of cases.)   Some improvement, even marked improvement (different from full remission) is more likely than complete recovery, although relapses can occur several years after remission.  Most cases stabilize at varying degrees of disability.  Around 30% of cases are progressive and degenerative  and degeneration of end organs may result in death. (One quote of early death rate in M.E. is 10%.  This figure includes suicides.  Early death from cardiac pathology is put at 2%.  Pancreatic failure can also contribute to early death.  Symptoms can be multiple and vary from person to person but common symptoms include post-exertional malaise (PEM), cognitive problems (such as short-term memory loss and concentration difficulties), muscle and nerve pain, muscle weakness, noise and light sensitivity, sleep and temperature disturbance, orthostatic intolerance (inability to sustain upright activity e.g. standing, sitting or walking) and sensitivity to certain foods, smells, alcohol, chemicals, light, noise and medicines.

M.E. is not the same as CFS (Chronic Fatigue Syndrome).  This is because there are currently 10 different interpretative criteria for CFS, some with a psychiatric and others with an immunological specification.  If the CFS criteria used involves damage to the Central Nervous System, then it could well be the same disease as M.E.  Other CFS criteria used focus on patients whose fatigue could be of psychiatric origin and this is not M.E.

The name M.E. has a long medical history of being a neurological disease, being classified in neurological textbooks since the 1960s.  It is a recognized disease by the WHO (World Health Organization) for at least 3 decades.

The name CFS was created in the 1980s with almost exclusive emphasis on the word ‘fatigue’, leaving out much pathology (structural evidence of disease) and previous physical M.E. research findings.  The vagueness of the term CFS is thus attractive to insurance companies, drug companies promoting anti-depressants for fatigue and government departments intent on saving money through benefits, support and research programs.  Any illness which has guidelines excluding pathology tends to not be taken seriously by medical and governmental authorities.

Therefore, the term CFS can be harmful as a label to M.E. sufferers because it can exclude pathology. Sometimes, however, researchers and medical staff use the term CFS to mean M.E.  So the situation is unacceptably confusing.  M.E. is a more specific name implying the pathology which has been found.

 

 

 

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.