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.”

 

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#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.

Protest Coverage

 

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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

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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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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

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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.

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[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.

“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.”

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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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A Short Update From Younger Labs On This International Awareness Day for M.E.

 

Today is the International Awareness Day for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia, Lyme disease, and Gulf War Illness.  Dr. Younger posted a short YouTube video (link below) about some of the exciting things that are happening now in the world of chronic pain and fatigue research.  He knows of many strong initiatives to cure these diseases, and thinks we will be making some major advances in the near future.

 

 

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Interview With Linda Tannenbaum – Open Medicine Foundation

 

Very informative interview of Linda Tannenbaum by Llewellyn King.  Linda’s daughter has severe ME.  It was the searching in 2006 for an answer from more than 20 doctors and finding none, that brought Linda to decide to start the OMF.

The video is 18 minutes long.

Thanks to Corinne Himmelman for posting this on Google+.

 

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