Category Archives: Institute of Medicine

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 ]

 

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]

#ME Where Are We?

 

During the first half of this year, there was much going on in the Health and Human Service (HHS) Department and regarding ME (Myalgic Encephalomyelitis):  we had the IOM’s (Institute of Medicine) outstanding, positive report (in my opinion) and then there was the P2P (Pathways to Progress) report.  The former was indicative of forward movement in the cause of ME and the latter, was not.

We’ve been ignored.

There were stand-offs, delays, and hidden refusals when the FOIA was used to obtain documents vital to the ME cause.

And where are we?  After all the hullabaloo and interviews of patients including Laura Hillenbrand, author of “Seabiscuit,” Jen Brea, co-developer of a movie, “Canary in a Coal Mine,” I ask again:

Where are we?

It looked like we had some strong headway for a while, in getting ME recognized as a VERY SERIOUS disease (which it is of course), and as such, needed MUCH MORE grant money from the NIH (National Institutes of Health) for some serious and more timely research.

As far as I can see, we are not much further along in our battle – yes, I said, “battle” – to get concrete help for our ME patients – in order to get them out of the greatest “funk” – in the world.  My choice of word – being polite.  I am totally frustrated, angered, impatient, sad, screaming inside.

People running and doing walks, making videos, giving speeches, begging Congress, growing gofundmes on the Internet, writing articles in popular newspapers and magazines, yada, yada.

Still, I ask, “Where are we?

 

 

 

The IOM Report – Key Facts

The synopsis report (Key Facts), released by the Institute of Medicine (IOM), captures the highlights of the rather long, full report.  If you wish to read the report in full, it is available for a cost.  There is a free download of the prepublished report, but it is difficult to read because the print is not clear, and enlarging the text makes it even more difficult to read.  Click here in order to be able to access the major parts of the report in pdf format (Adobe Acrobat Reader).  They are listed in separate sections at the upper left of the IOM site.

INSTITUTE OF MEDICINE

BEYOND MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME

FEBRUARY 2015 – Key Facts

What is the prevalence of ME/CFS?

1. ME/CFS affects 836,000 to 2.5 million Americans.
2. An estimated 84 to 91 percent of people with ME/CFS have not yet been diagnosed, meaning the true prevalence of ME/CFS is unknown.
3. ME/CFS affects women more often than men. Most patients currently diagnosed with ME/CFS are Caucasian, but some studies suggest that ME/CFS is more common in minority groups.
4. The average age of onset is 33, although ME/CFS has been reported in patients younger than age 10 and older than age 70.

What are the symptoms and other effects of ME/CFS?

There are five main symptoms of ME/CFS:
1. Reduction or impairment in ability to carry out normal daily activities, accompanied by pro-found fatigue;
2. Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort);
3. Unrefreshing sleep;
4. Cognitive impairment; and
5. Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down).

Other common manifestations of ME/CFS include:
1. Pain;
2. Failure to recover from a prior infection; and
3. Abnormal immune function.
4. At least one-quarter of ME/CFS patients are bed- or house-bound at some point in their illness.
5. Symptoms can persist for years, and most patients never regain their pre-disease level of health or functioning.
6. ME/CFS patients experience loss of productivity and high medical costs that contribute to a total economic burden of $17 to $24 billion annually.

What are the challenges in improving diagnosis and care for ME/CFS?

The cause of ME/CFS remains unknown, although symptoms may be triggered by certain infections.

Although there are therapies available to manage symptoms of ME/CFS, their efficacy is not known. There is no existing cure for ME/CFS.

There is an urgent need for more research to discover what causes ME/CFS, understand the mechanisms associated with the development and progression of the disease, and develop effective diagnostic markers and treatments.

Why is a new name for ME/CFS needed?

Several studies have shown that the term “chronic fatigue syndrome” affects patients’ perceptions of their illness as well as the reactions of others, including medical personnel, family members, and colleagues. This label can trivialize the seriousness of the condition and promote misunderstanding of the illness.

The term “myalgic encephalomyelitis” is not appropriate because there is a lack of evidence for encephalomyelitis (brain inflammation) in patients with this disease, and myalgia (muscle pain) is not a core symptom of the disease.

The Institute of Medicine (IOM) committee recommends the name systemic exertion intolerance disease (SEID) for this disease. This new name captures a central characteristic of this disease—the fact that exertion of any sort (physical, cognitive, or emotional)—can adversely affect patients in many organ systems and in many aspects of their lives.

PS:  I take great exception to the IOM panel’s finding that “there is a lack of evidence for encephalmyelitis (brain inflammation) in patients with this disease, and myalgia (muscle pain) is not a core symptom of the disease.”

To learn more, and to access the IOM committee’s proposed diagnostic criteria for ME/CFS, visit www.iom.edu/MECFS

Statement from Stanford University School of Medicine on Symptoms of ME/CFS

A statement cited from the Stanford University School of Medicine on the blog, “Living With M.E.” said of the illness known in the United States as ME/CFS was: “Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.”

Quite an accurate, albeit, brief description, without going into the issues in a more deeply manner.

When Stanford University speaks, the HHS, NIH, CDC, the IOM and all those other departments under HHS charged with direction and regulation of the health of citizens of the United States, should listen.

blue ribbon for me

 

[image from bingdotcom]

 

Brain Scans Yield Clues to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Findings might help doctors diagnose the baffling condition.

 

It’s not a secret that ME/CFS is a very difficult illness to diagnose.  Patients presenting multi-symptom complaints are often misdiagnosed or labeled as hypochondriacs.

There are clear differences in the brains of people with ME/CFS and the brains of healthy people, new research indicates.  One of the many symptoms is inflammation of the brain, shown by MRIs.

ME/CFS affects up to 4 million people in the United States alone.  This assessment (updated from a year ago’s 1 million) is reported by the U.S. Centers for Disease Control and Prevention (CDC).

The History of M.E (Myalgic Encephalomyelitis)

The History and Present of M.E (Myalgic Encephalomyelitis)

[Myalgic Encephalomyelitis]/ Chronic Fatigue Syndrome is one of the greatest scientific and medical challenges of our time,” said the study’s senior author, Dr. Jose Montoya, professor of infectious diseases and geographic medicine, in a Stanford report.

ME/CFS patients in the U.S. number more than MS and AIDS patients added together, yet, government funding for MS and AIDS research has been 4 times that of ME/CFS in recent years!

Despite the HHS, CDC, NIH et al’s negative and misguided attitudes of the last several years, and particularly the problems with IOM (Institute of Medicine) and P2P (Pathways to Prevention) Workshop, I have the distinct impression that there is more focus on finding a solution to the problems of ME/CFS than ever before.

Research in Nevada, and California is getting ramped up through mostly private funding.  If we depended upon the HHS’s funding up to now, nothing would be progressing in the necessary research; in fact, HHS has been doing everything it can to prevent progression in research.  My past posts on M.E. Advocacy will shed light on that.

The very active WordPress, Blogspot (Google) blogs and Twitter accounts of ME/CFS patients and advocates that I find, proves that we (ME/CFS patients and advocates) are not sitting on our hands in this fight.

As sick as so many patients and patient-advocates are, there is an inner strength (digging very deep down to find) that keeps everyone pushing to their limits and beyond.  And, they suffer physically for it for many days, weeks, months or even years.  More than 3 decades of being pushed aside and told “it’s all in your head and go see a psychiatrist for your depression” means it must stop.  NOW.

 

[Image from bingdotcom]

 

 

 

 

 

 

 

US District Court: HHS/NIH Violated Federal Law in Response to FOIA Request for IOM Documents

Jeannette Burmeister is a heroine. She fights with all her strength (doesn’t have that much, as she is an M.E. patient herself), to right a wrong. With it all, she perseveres with the patience of a saint. Thank you, Jeannette.

Thoughts About M.E.

I am pleased to give an update on my FOIA lawsuit:

Yesterday, the United States District Court for the Northern District of California ruled that HHSandNIH(government)violated the Freedom of Information Act (FOIA) when they improperly withheld documents from me in response to my FOIA request regarding HHS’s contract with the Institute of Medicine (IOM) for the study of diagnostic criteria for ME/CFS.

Accordingly, the Court granted my motion for summary judgment and ordered the government “to produce, within 60 days, all documents responsive to [my] request that are not covered by any exemption to FOIA’s disclosure requirements.” [emphasis added] The Court also denied the government’s motion for summary judgment asking for a dismissal of my lawsuit.

I believe that holding HHS and NIH legally responsible for their violation of federal law is a tremendous victory for our patient population. However, since this litigation is ongoing…

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