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

Meet Professor Jarred Younger

 

It looks like we have a new rising research hero for Myalgic Encephalomyelitis.  His name is Jarred Younger.  He is currently at University of Alabama Birmingham (UAB), and his bio more than measures up:

Professor Jarred Younger

“Jarred Younger received his Ph.D. in Experimental Psychophysiology in 2003 at the University of Tennessee, Knoxville. He then completed postdoctoral fellowships at Arizona State University and the Stanford University School of Medicine before taking an assistant professor position at Stanford. In 2014, he joined the faculty at the University of Alabama Birmingham, with a primary appointment in the Department of Psychology and secondary appointments in the Departments of Anesthesiology and Rheumatology. Prof. Younger’s goal is to end the chronic pain and fatigue that is caused by inflammation in the brain. He is currently funded by the National Institutes of Health, Department of Defense, and several non-profit agencies to develop techniques for diagnosing and treating neuroinflammation, pain, and fatigue.”

Younger and some other ME/CFS and FM researchers are taking a very different approach to these illnesses.  Cort Johnson introduced us to Professor Younger in his “Health Rising” blog.  Please click on the “Health Rising” link to read Cort’s in depth report on Professor Younger’s experiments involving the hormone, leptin and the main immune agents in the brain – the microglia.  I, personally, found Cort’s report very clear and I became excited about this new approach in trying to find the cause of the brain inflammation, the pain, the fatigue and the impaired cognitive functioning.
The notes below, taken from Professor Younger’s UAB research site, are a synopsis of the work projects ongoing in Professor Younger’s lab at the University of Alabama Birmingham:

“Current Projects

Short descriptions of our active research projects are provided below. If you have any questions about our projects, feel free to contact us by email at youngerlab@uab.edu. You may also call our main line at 205-975-5907.

Discovering the source of chronic pain and fatigue

We have found specific chemicals in the blood that may cause chronic pain and fatigue in many women. These chemicals are part of an immune system that may not be working correctly. We have received funding from the National Institutes of Health to contiinue testing the role of these chemicals in disease. If we are successful, we may not only produce an objective test of fibromyalgia and myalgic encephalomyelitis, also known as chronic fatigue syndrome, but we may also be able to develop more effective treatments for those disorders. Women participating in this study have blood draws over multiple days and record their symptoms on a handheld computer.

Daily immune monitoring in men with Gulf War Illness

After the 1991 Gulf War, many individuals in the military returned home with a range of unexplained symptoms. Most of those individuals experience chronic pain and/or fatigue. We believe that environmental exposures while in the Persian Gulf region may have sensitized the immune system, causing the symptoms of Gulf War illness. We are testing that hypothesis by measuring several inflammatory chemicals in the blood of people who suffer from the condition. Our goal is to learn more about Gulf War illness so we can develop effective and safe treatments.

Using botanical anti-inflammatories to treat Gulf War Illness

We now know that several botanical agents, such as mushrooms, nettles, and herbs, have anti-inflammatory properties that may benefit individuals with chronic pain or fatigue. Most of these products are available without a prescription, but they have never been tested in Gulf War illness. We are currently funded by the Department of Defense to test some of these supplements in individuals with Gulf War illness. If these anti-inflammatory products reduce symptoms, then we will learn more about what is wrong in people with Gulf War illness and make progress in treatments that make patients function and feel better.

Developing better methods for detecting inflammation in the brain

We believe that low-level inflammation in the brain may be the cause of many cases of pain, fatigue, problems with thinking or memory, and depression. Unfortunately, no tool is currently available that allows us to determine if someone has low-level inflammation in the brain. We are working on several solutions to that problem, using neuroimaging techniques such as diffusion tensor imaging, positron emission tomography, and magnetic resonance spectroscopy. We hope to make a safe, non-invasive and accurate test available for neuroinflammation. For these studies, we are currently recruiting people with chronic pain and fatigue, and healthy people.

Exploring the effects of opioid painkillers on the brain

While strong painkillers are important in managing pain, they may cause problems in some individuals when used for a long period of time. Some of those problems include addiction, changes in mood, and even increased sensitivity to pain. We are conducting brain scans on people who are starting or stopping opioid painkillers to determine how the drugs affect the brain and cause problems. With the information we gain, we hope to find ways to improve pain treatments and minimize their unwanted side effects.

Low-dose naltrexone and other microglia modulators for pain

Our lab has shown that low doses of naltrexone can be effective in reducing the chronic pain associated with Fibromyalgia. We believe the medication works by suppressing the activity of immune cells in the brain (microglia) that have become hypersensitized. We are now further testing this medication to see who it helps best. We are also testing other medications that may work even better than low-dose naltrexone.”

[Professor Younger’s photo is from University of Alabama Birmingham site]

Brain Inflammation – Its Similarity In Autism and ME

I follow “Onward Through the Fog,” a blog on blogspot, authored by Erica Verrillo, a talented person who suffers from ME (Myalgic Encephalomyelitis).  Her reports and research are top notch.

In this particular posting, Erica reports on the similarity of some findings affecting Autism and ME/CFS.  These findings have to do with brain inflammation.

A John Hopkins study acts as confirmation that excitotoxicity caused by chronic inflammation is central to autism.

Excitotoxicity has been put forth as a mechanism of ME/CFS by a number of clinicians and researchers, including Drs. Paul Cheney, Jay Goldstein, Morris and Maes, Martin Pall, and, most recently, Jarred Younger.

I strongly urge you to read Erica’s post regarding this important research discovery, and also, take a look at her other interesting and informative posts.

 

 

Changing Direction Can Be A Positive Thing

I have been blogging since January 2014, with just a few posts at the end of 2013, which is when I actually launched my Sunshinebright blog. My original intent was to post about things in my day and my surroundings that would, hopefully, put a smile on the faces of fellow bloggers who happened, by accident, to come across my posts. I received much encouragement from other bloggers when they read some of my early posts. I was trying to get the “hang of it” and was working to learn the ins and outs of WordPress. I’m still learning.

The “invisible illness”

As you can see, if you’ve read the last few months of posts, I’ve expanded into Advocacy for M.E. My daughter has it. I believe that the more people who advocate for their choice of advocacy, the more chance that some good will come of it in the way of government recognition (first recognition and then, hopefully, research) and also globally increasing familiarity with a disease (M.E.), which is one of those nicknamed “invisible illness.”

M.E. is a chronic illness.

There are, unfortunately, many diseases that cannot be seen outwardly, by the viewer – even close up. My daughter looks “normal” to anyone who sees her and who meets and talks with her. But, she is in pain all the time, and can point out where, in her extremities and other areas in her body, lymph toxins have accumulated. I was with her today, and could see and feel, while palpating, the areas where she has lymph swelling. I won’t go into other symptoms now.

M.E. means myalgic encephalomyelitis

So, even though, in my “About” page, I state the purpose of my blog, I have wandered away from my original purpose on many occasions. In so doing, my hope is that I bring about some understanding about M.E. (myalgic encephalomyelitis).

 

[Images from Bingdotcom]