Category Archives: Myalgic Encephalomyelitis

20th Anniversary Celebration of Osler’s Web

 

This 20th anniversary celebration of Hillary Johnson’s “Osler’s Web,” garnered dozens of media outlets’ coverage and comments by prominent people. Osler’s Web is Johnson’s documentary of the discovery of, and subsequent governmental treatment of, those terribly suffering patients with ME – myalgic encephalomyelitis, a multi-faceted symptom disease (also known as “chronic fatigue syndrome” (CFS) which is a misnomer and mistakenly gives the impression of a simple fatigue – which ME is not!). It is not an easy read but, to read it, will give you a real understanding about this greatly disabling disease and why it is so easily dismissed by those ignorant of, and unwilling to accept, its severity.

The following comment by a spokesman for the CDC (part of the NIH), government agency that is prominently mentioned in Osler’s Web), requires a looksee because it shows the historic illegal, harmful, negative and dismissive attitude of the CDC (Centers for Disease Control and Prevention} :

“Tom Skinner, a spokesman for the CDC, said his agency has gotten numerous inquiries about the allegations raised in Ms. Johnson’s book but is neither investigating them nor commenting on them. ‘We have not reviewed her book, and will not comment on her book and are not going to,’ Skinner said.”
— Dave Parks, Birmingham News

From the New York Times Book Review:  “Ms. Johnson’s book describes an important piece of recent medical history that might never have been recorded if it weren’t for her efforts.  Her carefully researched tale leaves us pondering the progress of medicine.”

Michael Kenney, Boston Globe:  “…a compelling, valuable story that takes the reader into the petty, back-stabbing world of high-stakes medical research… In Johnson’s hands, (the) cast of doctors and researchers, heroes and villains, takes on distinct personalities, and it is the interaction among them that moves the story unflaggingly along.”

Sam Husseini, In These Times:  “Ultimately, Osler’s Web tells the story not of one particular ailment and the havoc it wreaks on the human immune system, but rather the defects in our national immune system—the CDC and the NIH—which the world looks to for leadership.”

There are many more reviews at “Osler’s Web.”

 

[ header image:  http://www.freewebheaders.com ]

 

Advertisements

#MillionsMissing Protest Coverage

 

Sept. 27th was a day of national and international protesting and recognition of #millionsmissingME, 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.

Protest Coverage

 

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

 

Severe ME: ‘Took nearly 40 years to be diagnosed’

The story about an anonymous Australian person who has suffered with ME (Myalgic Encephalomyelitis) since childhood, is an example of how other patients around the world try to cope with this debilitating and misunderstood disease.

Featured Image -- 5293

ME Australia

by Sasha Nimmo

Between 24,000 – 60,000 Australians have severe ME.  This is the first in a series telling the stories of Australians with severe ME.

Given the wrong medical treatment and intervention harmed this patient’s health to the point of no return. Disbelief by medical professionals and community care workers made life even more difficult. This patient fears further mistreatment so asked to maintain anonymity.

Above is a picture of Basil, an affectionate miniature fox terrier and company during difficult times.

Even after so many decades of illness, this patient still holds hope in medical research and participates in studies at Griffith University’s National Centre for Neuroimmunology and Emerging Diseases, one of the few places studying severe ME.

This patient shares their story with us.

What was your life like before you became ill?
For me, it is not a straight forward answer as I have had mild ME since I was…

View original post 1,333 more words

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?

 

MJ

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.

fewer pills

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.

alien

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.

seattle netherlands canada

Millions Missing demonstration in Washington, DC.  (Photo by Mary F. Calvert)

#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]

Discrimination By Insurance Companies Against The Chronically Ill

 

Despite the Affordable Care Act (ACA), commonly called “Obamacare,” and its requirement that medical insurance companies accept those with pre-existing conditions, insurance companies have found ways to deny services while keeping their eyes on the bottom line at the expense of those patients who are the most vulnerable.

An article by Angela Ostrom, published in Newsweek, points to the denial of quality coverage to patients with epilepsy, cancer and a host of other chronic conditions.  New and creative ways are found in which medical insurance companies could “skirt around” the lawful charge and focus of the ACA.

“One common strategy is to design plans so that medications for conditions like epilepsy, cancer [ME, fibromyalgia, lyme disease and others] and HIV/AIDS are all but unaffordable.”

“Federal rule makers are set to change that. They’re attempting to prevent insurance companies from denying quality coverage to patients with epilepsy, cancer and a host of other chronic conditions.  If they succeed, they’ll have, at long last, achieved one of the ACA’s most important goals:  ending discrimination against sicker patients.”

It is widely known that Big Pharma is getting rich upon the backs of unfortunate sufferers of chronic and/or serious and life-threatening illnesses.  These patients have huge medical and prescription costs – a greater percentage than those of us who are blessed with good health.  The more ill the patient is, the higher their cost of medical care, of course; however, the more ill the patient, the less income.  A paradoxical situation, but that’s the truth of it.

“The ACA bans insurers from outright refusing to cover people with pre-existing conditions. Unfortunately, that provision didn’t actually stop insurance companies from turning away chronically ill patients—it just forced them to find new and creative ways to do so.

Cutting back on prescription medication.  It's too expensive.

Cutting back on prescription medication. It’s too expensive.

“Insurers place many or all medications for a particular condition on the highest “tier” of their drug formularies—the lists of medicines patients are allowed to take, or off the formulary altogether. For medications in the highest tier, individuals are often required to cover 40 percent—or more—of the total cost.”

“Sadly, this technique for raising the cost of essential and often lifesaving therapies is now standard.”

There are other tactics that medical insurance companies use in order to make it more difficult for very ill patients to get the medication and care they need.  Too many patients don’t buy the medication they need.  It’s too costly.  Many patients cut back on their dosage of medication, trying to make it last longer, but while doing this, they render the medication useless as it then has no beneficial effect.

On another note:

Assistance from governments – state and/or federal – is like trying to trudge through a mud slide several feet deep, while going against the slide’s direction of movement.  Not a good picture.

Social Security Disability applications go through an automatic first denial.  One applicant’s application was denied along with the explanation for denial that had totally nothing to do with the applicant’s reason for applying for financial relief.  It was evident that the federal employee didn’t take the time to actually read the application and accompanying documentation.  Or, he/she was under orders to automatically deny.  This tactic sounds more reasonable, since Social Security Administration keeps complaining about its bottom line.

As with too many federal agencies, the weakest keep getting pushed “under the rug.”

[Pill box image from bingdotcom]

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

 

 

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 ]

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