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“ME/CFS is actually more debilitating than most other medical problems in the world, including patients undergoing chemotherapy and HIV patients (until about 2 weeks before death).”   Canadian ME/CFS Consensus

“Research has shown that ME/CFS has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodyalisis.”       Hooper and Marshall

“My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses [HIV and ME/CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”         Dr. Nancy Klimas

ME/CFS patients perform drastically worse on their second day of exercise stress testing.  The performance on the second day of testing is a clear sign of post-exertional malaise. Healthy people are able to perform at 85 percent of their optimal aerobic capacity on the second day of testing, while chronic fatigue syndrome patients achieved only 36 to 76 percent results, worse than other patients tested while they waited heart or lung transplants.   (paraphrase of Staci Stevens, Pacific Fatigue Lab)

ME/CFS

(Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

Is much more than fatigue.

ME/CFS is a chronic, often severely disabling disease that affects the autonomic nervous system, immune system, endocrine system, among others. ME/CFS is unique in that it results in “…marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal, such as activities of daily living or simple mental tasks…”* causing relapses that can last for weeks.

ME/CFS affects more than one million Americans of every age, race, ethnicity, and socioeconomic group.

ME/CFS costs the United States over $20 billion/year in medical/disability costs and lost productivity**.

People with ME/CFS need treatments so that they are no longer destined to a lifetime of disability.

What must be done:

Provide ongoing research funding on par with equally disabling illnesses such as MS/ Parkinson’s. (e.g.-NIH budgets $6/ME/CFS patient for research vs. $270/MS patient for research ***.)

Thank you for remembering M.E.!

 Speak Up About ME!!

*Carruthers, Bruce M. (2011).

** Jason, Leonard A. (2008).

***http://report.nih.gov/rcdc/categories/

Background Information on ME/CFS

Diagnosis of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

A diagnosis of ME/CFS is based on the exclusion of myriad other illnesses as there are no specific diagnostic tests for ME/CFS.

Prevalence

At least one million Americans have ME/CFS and millions more suffer worldwide. The difficulty in pinpointing actual prevalence arises from the use, over time and between research groups, of different definitions and case criteria.

ME/CFS does not discriminate. It strikes people in all age, racial, ethnic and socioeconomic groups. Research has shown that it is 3-4 times more common in women compared to men, a rate similar to that of autoimmune conditions such as multiple sclerosis and lupus. Teens are more likely to get ME/CFS than younger children, and adults are more likely to get ME/CFS than teens.

ME/CFS is NOT a ‘minor disease’.

The disability rates among ME/CFS patients are similar to those of people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other equally serious diseases. Some patients endure years of being virtually home-bound or even bed-ridden because of ME/CFS.

Researchers at DePaul University estimate that every year ME/CFS costs the U.S. economy $17-24 billion*. Its prevalence, economic effect, disabling impact and chronicity make ME/CFS one of the most economically burdensome conditions of our time.

Fatigue and Post-Exertional Relapse

ME/CFS patients experience a fatigue severe enough to cause them to substantially cut down their work, educational and/or social activities. The Centers For Disease Control (CDC) calls this fatigue ‘severe, incapacitating, and all-encompassing’. At its most severe, it can leave ME/CFS patients house or bed-bound.

ME/CFS is unique in that it results in “…marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal, such as activities of daily living or simple mental tasks… ”** This post-exertional exhaustion (Post-Exertional Relapse or P.E.R.) further exacerbates the already overwhelming fatigue, causing relapses that can last for weeks.

Disabling, debilitating fatigue is a prominent symptom. So are headache, muscle pain, joint pain, unrefreshing sleep, loss of cognition, deficiencies in memory consolidation and working memory.

The symptoms of ME/CFS are highly variable and fluctuate in severity, complicating treatment and complicating the ill person’s ability to cope with the illness. Most symptoms are invisible, which often makes it difficult for others to understand the vast array of debilitating symptoms with which people who have ME/CFS must contend.

Other Symptoms
Many people with ME/CFS have orthostatic intolerance (OI) and/or postural orthostatic tachycardia syndrome (POTS).

Additional symptoms of ME/CFS include word-finding difficulties, inability to comprehend/retain what is read/said, a new inability to calculate numbers and impairment of speech and/or reasoning.

Other frequent symptoms include: chills/night sweats; irregular heartbeat; extreme sensitivity to heat and/or cold; inability to regulate body temperature; cognitive dysfunction; syncope; shortness of breath; chest pains; tinnitus; numbness, tingling and/or burning sensations in the face/extremities; visual disturbances and extreme photosensitivity; allergies; extreme sensitivities to noise/sound, odors, chemicals, medications; dizziness/balance/vertigo problems; sicca syndrome; irritable bowel; among others.

*Jason, Leonard, A. (2008). The economic impact of ME/CFS: individual and societal costs, Dynamic Medicine 2008, 7:6 doi:10.1186/1476-5918-7-6 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Published: 8 April 2008

**Carruthers, Bruce M., (2011), Myalgic encephalomyelitis: International Consensus Criteria

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdfJournal of Internal MedicineVolume 270, Issue 4, Article first published online: 22 AUG 2011

ICC SHORT VERSION http://www.meassociation.org.uk/wp-content/uploads/2011/07/ICC-short-version.pdf

Long version http://www.njcfsa.org/wp-content/uploads/2011/07/myalgic-encephalomyelitis-international-consensus-criteria07-2011.pdf

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3 Responses to “Severity of ME/CFS”


  1. 1 Denise April 23, 2012 at 4:28 pm

    I think this summary is well done. May I copy it, citing the url as source, for 1-page handouts?


  1. 1 Tory Majority Day 4: Balancing MECFS With Post UK Election Fallout | Disabled In Tory Britain Trackback on May 11, 2015 at 8:40 am

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