Tag Archives: National Institutes of Health

Myalgic Encephalomyelitis Is Now A Real Disease!

me

A guest blogger (Rivka Solomon) posted on Erica Verrillo’s blog, “Onward Through the Fog,” (both women are patients suffering with ME/CFS) and she tells her story of 25 years with this disease, and about her raised hopes upon learning that Dr. Francis Collins, Director of the NIH, has announced IT IS A DISEASE and deserves government research.  The U.S. government’s (at long last) recognition of this debilitating disease, has given hope to all sufferers, their families and friends.

There is one thing, upon reading Rivka’s post, that I hadn’t known before; that is, this disease has grown so widely, that there are past and current NIH employees who are ill with it, and also, employees working for and with the NIH who have family members who are greatly debilitated by the disease.

Again, it is not only what you know; it’s WHO YOU KNOW, that will make inroads possible.  A fact of life.

A popular saying I’ve heard many times:  Cancer is such a popular disease, that there isn’t one family which hasn’t been affected by it.  It seems to me, that, as Myalgic Encephalomyelitis is growing here and around the world, there may come a time when that saying will apply to this disease.

Our NIH researchers better move quickly and make up for all the thirty years of wasted time.

DO YOU HEAR THAT, DR. COLLINS??

 

[Image from bingdotcom]

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

 

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Is ME (Myalgic Encephalomyelitis) A Hidden, Mysterious Disease?

 

It isn’t.

It might seem like it, according to the treatment it gets from our highly-regarded Health & Human Services Department (HHS), National Institutes of Health (NIH), Centers for Disease Control (CDC) and other sub-departments of the huge HHS.

It seems like there is a vendetta against ME patients in the U.S., and also in other countries, where very ill patients are diagnosed and treated for psychosomatic illness, when they are really suffering from a multi-symptom, extremely painful and debilitating disease.

The whole body is affected.  Not just nerves; not just the brain, not just the lymph nodes; not just the immune system; not just the muscles, not just the major organs of the body – BUT ALL.

Another thing:  Approximately 80% of patients who are suffering with ME are women.  Some scuttlebutt I’ve heard has suggested that, since such a huge percentage of patients are women, some governmental entities may not put as great importance on funding for research for ME as they would if the disease was weighted differently.

The other 20% is comprised of men and children.  Yes, children!  Also, it is not unusual for members of the same family to fall ill with ME.  Outbreaks have also been reported within communities.

blue ribbon for me

Unraveling the “mystery” about ME:

 

  • Myalgic encephalomyelitis (ME) is a debilitating, often disabling, illness recognized as a neurological disorder by the World Health Organization since 1969.

  • After an outbreak in Nevada in the 1980s, the CDC coined the term “Chronic Fatigue Syndrome.”

  • There are no FDA-approved treatments and no diagnostic tools for ME.

  • Between 836,000 and 2.5 million U.S. residents are afflicted with ME, with 84 to 91 percent not yet diagnosed. True numbers are highly under reported

  • ME-related medical expenses and lost productivity cost the U.S. up to $24 billion annually.

  • In research funding, ME receives less money for research than hay fever, and ranks far below similarly disabling illnesses; such as:

  • 1) ME: About $2 per patient per year in NIH funding ($5 million in FY2015);

  • 2) Multiple sclerosis: About $250 per patient ($103 million in FY2015); and

  • 3) HIV/AIDS: About $2500 per patient ($3 billion in FY2015).

  • Patients with ME score more poorly on quality of life surveys than patients with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.

  • At least one quarter of ME patients become housebound or bed bound, often for years. Many become unemployed.

Loss of job as disease progresses has dire economic consequences for patients, families, and the country as a whole, when considering the loss of productivity.

Ask most any person in the medical community if they heard of “ME” or “Myalgic Encephalomyelitis” and, guaranteed, almost all will answer, “No.”  Ask if they’ve heard of “Chronic Fatigue Syndrome” or “Chronic Fatigue” and more often than not, they will say, “Yes.”  But, they really have no idea at all what it is.  I speak from my own personal experience.  The many doctors I’ve visited over the last year, when asked, had the identical response.  Also, this type of response is reported by patients when questioned about their doctor visits.  Too often, they encountered uninformed and uncaring doctors.

Medical schools should begin instituting information about ME in their curricula.

Thank the CDC representatives for that great faux pas 30 years ago in Nevada, while investigating an outbreak, when they imprinted “Chronic Fatigue Syndrome” (CFS) on all patients, and which, unfortunately, stuck.

The ignorance shown in the face of a “mysterious” disease 30 years ago is continuing.

 

[Indented information is from #ME Action]

[Image is from bingdotcom]

National Insitututes of Health Awards Funds to Two Colleges for Undiagnosed Diseases Network

NIH has awarded the Medical College of Wisconsin and Baylor College of Medicine with more than $2.5 million over four years, depending on availability of funds.  These two centers are to be used as the DNA Sequencing Core sites for the NIH’s Undiagnosed Diseases Network.

This announcement has been published today by the GenomeWeb Daily News.

Since M.E. (Myalgic Encephalomyelitis) is considered an undiagnosed disease by our government (HHS; NIH, etc.), why can’t M.E. be included in the study of genome sequencing?

There are so many goings-on behind the scenes that the NIH doesn’t want the general public to find out about.  The whole scenario is scary.  It is easy to feel overwhelmed, helpless and, yes, bushwacked.

I don’t know anything about genomics – I’m not a scientist.  But, according to what I can decipher on Wikipedia, it is the study of genes, and DNA.  Now, this would be great if scientists could come up with a biomarker for this “undiagnosed disease,” wouldn’t it?  This has been the scuttlebutt going around amongst M.E. patients for a long time, and has been included in discussions amongst researchers who are chomping at the bit for funds to do just that.

Just sayin’

 

 

 

Mr. President, Can This Bode Well for M.E.?

NIH names new clinical sites in Undiagnosed Diseases Network

As reported in a recent blog, I subscribe to many newsletters and blogs from different departments in our government.  As a result, I get backlogged with the many emails in my inbox.  Today, I opened an email from the National Institutes of Health, dated July 1st.  Right away, my brain started to buzz with the action of neurons [from Wikipedia:   an electrically excitable cell that processes and transmits information through electrical and chemical signals].  Could this lead to some “buzzable” action that will mean NIH support for M.E.?  It may be farfetched, but my mind grabbed this thought and ran with it.

Another letter to President Obama:

Dear Mr. President;

The National Institutes of Health has awarded grants to six medical centers around the country to select from the most difficult-to-solve medical cases and together develop effective approaches to diagnose them. The clinical sites will conduct clinical evaluation and scientific investigation in cases that involve patients with prolonged undiagnosed conditions.

The network includes and is modeled after an NIH pilot program that has enrolled people with intractable medical conditions from nearly every state, the District of Columbia and seven foreign countries. The network builds on a program at the NIH Clinical Center in Bethesda, Md. that, for the past six years, has evaluated hundreds of patients and provided many diagnoses, often using genomic approaches, for rare conditions.

M.E. (myalgic encephalomyelitis), commonly referred to as CFS (chronic fatigue syndrome), is an officially-undiagnosed (mystery) illness for which there is no diagnostic criteria in the U.S. and has remained a mystery for over 3 decades. I strongly believe that it should be considered to be included by the NIH network.

Undiagnosed, or mystery, diseases are conditions that even skilled physicians cannot diagnose despite extensive clinical investigation. Our medical community knows very little about M.E.:  these symptoms are not part of the curriculum in medical schools; and most have never had patients displaying (presenting) the symptoms of the multi-faceted illness; in fact, many patients suffering from these many symptoms are referred to psychiatrists for evaluations. This is because the primary physicians are totally baffled by the patients’ symptoms, and since the patients “don’t look sick,” they wash their hands of them and “hand” them off to another specialty.

Mr. President, this is serious. Globally, there are at least 20 million sufferers and more than 1 million in the U.S. The people who are so sick have not many corners to look in for relief. As a matter of fact, most suffer from unbearable pain and need pain-reducing medication. These patients are having trouble getting the dosage they require because of a new policy preventing the filling of prescriptions for a dosage that is higher than the usual. These patients are not the “usual” patient. They are being denied the relief they require. They are not addicts and they have no intention of selling it.

Sincerely,

Carol Carlson

 

Letter to President Obama re: National Institutes of Health

Tomorrow, I’m mailing yet another letter to President Barack Obama.  This time, it’s in reference to Dr. Francis Collins, Director of the NIH.  There is a workshop planned for September 2014, which, in my opinion and that of other M.E. advocates, should not be taking place.  Please read on:

Re: M.E. (myalgic encephalomyelitis) and Dr. Francis Collins, Director of the NIH (National Institutes of Health)

Dear Mr. President;

Today, my letter is about the planned Pathways 2 Prevention (P2P) workshop, projected to take place September 2014 to discuss the “Role of Opioids in the Treatment of Chronic Pain.”

My daughter is suffering from M.E. Her quality of life is greatly diminished:  she has body pain all the time; suffers horrific headaches; and many other symptoms.

Chronic pain is a huge national problem, and there are many issues associated with opioid treatment. So you would think that NIH would have made an effort to involve stakeholders from across the chronic pain community, right?

There was no patient representation on the Working Group for the meeting. Working Group members provided their input at a meeting held August 28–29, 2013. Multiple advocacy organizations in the fibromyalgia community had no idea the workshop was even happening, including the National Fibromyalgia and Chronic Pain Association. At least one opioid drug manufacturer was also completely unaware of this Workshop – despite having a regulatory affairs office.

I, and many other advocates for ME/CFS, have asked Dr. Francis Collins to cancel the P2P Workshop and reexamine the best way to collaborate with the ME/CFS research and clinical community. The NIH has failed to engage stakeholders in a meaningful and substantive way. The P2P Program is simply not designed to do this, and now there is more proof of that from another planned P2P Workshop.

I think what we’re seeing is indicative of NIH’s mindset. Unlike FDA, which has made great strides towards incorporating patients’ input into decision making, NIH is an ivory tower of researchers with limited history of engaging patients and other stakeholders. It may not even occur to them that they need to do this. NIH is not just failing to engage with ME/CFS stakeholders in the P2P process; NIH is failing to engage with ANY stakeholders through P2P (Pathways 2 Prevention).

In closing, I would like to point out that this planned workshop’s purpose of discussing opioids in treatment of chronic pain has a direct impact on all patients who experience great pain, no matter from which disease they suffer. As an advocate for M.E., I ask that you investigate why no patients’ input is being included in the planned workshop, and why Dr. Collins has approved this project which may harm, rather than help, those who suffer great pain.

Sincerely,

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.