Category Archives: ME/CFS

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

Advertisements

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 ]

 

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+.

 

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

 

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:

Jarred Younger

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]

MS vs ME/CFS: A “Fatigue” Disorder No More?

I subscribe to Cort Johnson’s “Health Rising” blog.  He has taken up the cause of those suffering with ME/CFS for a long time (he is one of the millions of patients).  As in one of my recent posts, the plight of sufferers of Myalgic Encephalomyelitis (ME) has been taking up space in headlines of top newspapers.

The current post on Cort’s blog, speaks to the similarities between MS (Multiple Sclerosis) and CFS (Chronic Fatigue Syndrome).  CFS is a misnomer for ME (Myalgic Encephalomyelitis); however, CFS seems to be a more recognizable name, since its coining by the CDC many years ago.

The issue that Cort addresses in this latest post is the “fatigue” suffered by patients who have the two diseases:  MS and ME/CFS.

He states:

Multiple sclerosis (MS) ranks amongst the most fatiguing disorders known.  Both ME/CFS and MS are fatiguing disorders – but is their fatigue similar?

 It is a major topic for research:  there have been 10 research studies in the last 5 months into illnesses with “fatigue” in their titles or because they are known to create abnormal, exhausting fatigue in the patients!

 

Cort goes on to describe the differences and similarities between MS and ME/CFS regarding:

  • Severity;
  • At what stage in development of disease does fatigue start to occur;
  • Types of fatigue;
  • What causes the fatigue to appear at different times of day;
  • Does weather cause changes in severity of fatigue;
  • How does exercise regimens affect patients’ fatigue;
  • How does exercise affect pain experienced by patients;
  • What other actions contribute to fatigue?

The word “fatigue” is a word that really doesn’t properly describe the bone- muscle- nerve-deep total exhaustion (and pain) experienced by ME/CFS patients; and yet, it is used offhandedly by the medical community, some scientists, the governmental agencies who are charged with caring for the health of their citizens, and others who are incapable of understanding the type of “fatigue” meant.

As part of his conclusion, Cort states:

Despite both disorders being associated with high rates of fatigue, people [with] ME/CFS and multiple sclerosis had very different responses to exercise – and display very different types of fatigue. The fatigue in MS is omnipresent, but is not greatly affected by exercise. The fatigue in ME/CFS is..

 

Finally, Newspapers Are Starting to Publish the ME/CFS Story

Julie Rehmeyer’s article about her own experience with ME/CFS, originally, and specially written for the Washington Post, has been picked up by the Chicago Tribune.

Julie Rehmeyer, science and math writer and contributing writer at Discover

Julie Rehmeyer, science and math writer and contributing writer at Discover

Rehmeyer is a math and science writer in Santa Fe, N.M.  A version of this article appeared originally at the science writers’ blog The Last Word on Nothing.

 

Ryan Prior, Medical Student at Stanford University

It is becoming more and more evident that there are so many more individuals than ever thought, who have the debilitating chronic illness, ME.  Since last year, the number of assumed cases of ME has gone from 1 million to up to 4 million in the U.S., and from 17 million up to 20 million worldwide!

Here is a young medical student, at Stanford University, named Ryan Prior, relating in a short dialogue, his own experience with ME.

Although he is supposed to be “recovered,” Ryan mentions the daily medications he is still taking and gives himself weekly injections and there is also a monthly IV that he gets.

So, his “recovery” really means that, as of now, he is better able to lead a more “normal” life, but with medical support.

 

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]

 

 

 

 

 

 

 

She Gives Hope To Other ME/CFS Patients

Below is a video of Carol E. Head, President and CEO of Solve ME/CFS Initiative.

Carol E. Head, President and CEO of Solve ME/CFS Initiative

Carol E. Head, President and CEO of Solve ME/CFS Initiative

She talks about her “personal walk” with ME/CFS, describing how she became afflicted with the illness.

She had goals and plans for her life when she was a young woman who had just graduated from Management School at Stanford University.

Then, she got the flu.  And you can guess what happened after that.

After going from doctor to doctor to doctor, she did seek alternative therapists, and, over the course of many years, started to see improvement, to the point where she was able to go back to work.

Her story, told briefly in this video, is reminiscent of most of all sufferers with M.E.

It’s not a long story, but you will be able to empathize with her, and take hope that it is possible to achieve some measure of improvement.