Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .

Key Features of Possibly the Most Underserved and Underdiagnosed Disease: Do You Have It?

By Linda Tannenbaum

A February Institute of Medicine report said up to 91 percent of people with chronic fatigue syndrome have not been diagnosed. These people are not receiving appropriate treatments or healthcare advice. If you feel tired often, how would you know if you have this disease?

ME / CFS, myalgic encephalomyelitis, also known as “chronic fatigue syndrome” or ME / CFS or a proposed new label, “systemic exertion intolerance disease,” includes debilitating fatigue that is constant or recurring. This is not tired because you’ve had a long day. It’s fatigue like you have the flu or like you are on chemotherapy. Some patients describe this as feeling like they have lead in their body or that they have no energy, like a dead battery.

But it has other symptoms, such as waking up feeling drained or like you have a hangover. Most of these patients take more time to transition from sleeping to awake activity. They may have insomnia or require more than eight hours of sleep, yet still not feel fresh in the mornings. ME / CFS also includes trouble with thinking abilities. This could include processing new information quickly (such as when given driving directions or asked to remember a phone number), doing math in your head or multitasking. Forgetting words or getting your “wires crossed” is commonly reported.

Another symptom, orthostatic intolerance, may make a person uncomfortable standing in one place long. The patient feels a strong urge to lie down or they may feel dizzy. Often patients unconsciously compensate by folding their legs when they sit down or shifting their weight from one leg to another when they stand, or avoiding lines, doing dishes at a sink or brushing their teeth at a sink. Other symptoms some patients experience include muscle pain, sore throats, swollen lymph nodes, sound and light sensitivity, headaches, easy bruising and vertigo. In all, about 60 different symptoms can occur with the disease, and each patient’s symptom profile may be different. [1]

One symptom or timing of symptoms has been described as the distinguishing hallmark of the disease. Referred to as “post-exertional malaise,” ME / CFS patients with mild or moderate cases may have brief periods without noticeable fatigue or other symptoms. But it doesn’t last long. Then within hours or days of the activity, the patient experiences a “crash” of feeling sick, so sick they can’t function. [2] It may last hours, days or weeks. Depending on how bad the episode is, the “crash” symptoms may include hoarse voice, debilitating fatigue, mental fog, headache, hot and cold flashes, nausea and vomiting. In these cases, some patients find they can start off at work feeling pretty good on Monday because they rested over the weekend. Then they find that by Tuesday afternoon or Wednesday, they are struggling to finish the work day. In addition to mental or physical activity, other triggers for a “crash” include infections, surgery, an accident or stress.

Severe cases, about 25 percent of the estimated 1 million Americans with the disease, struggle to take care of their daily needs, such as changing clothes and preparing a meal. [3] And some of those are totally bed-bound and too weak to feed themselves or even talk.

If you suspect you have this disease, you will want to rule out another illness that has a similar presentation, such as fibromyalgia, hypothyroidism, cardiac dysfunctions, an infection or depression. Of course, it is possible a person could have one of these other conditions and also have ME / CFS. Women ages 35-50 are at a higher risk of coming down with this disease. The second most common group to develop it includes boys and girls in their adolescence (ages 11-23). However, it can strike anyone, including men and young children.

The Open Medicine Foundation is focusing on funding research that will put an end to this disease and bring back vitality to the many women now suffering, benefitting them, their families and society. For more information visit www.omf.ngo.

References:

1. Berne K, Ph.D. Author of 1995 book: Running on Empty, The Complete Guide on CFS (CFIDS), by, pp 57-60, http://wwcoco.com/cfids/bernesx.html

2. Christopher D Black and Kevin K McCully, “Time course of exercise induced alterations in daily activity in chronic fatigue syndrome,” Dyn Med. 2005; 4: 10. Published online 2005 Oct 28. doi: 10.1186/1476-5918-4-10, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1280928/

Brown A, M.A., Evans M, M.A., Jones, N, M.A., and Jason, LA, Ph.D. “Examining the Energy Envelope and Associated Symptom Patterns in ME / CFS: Does Coping Matter?” Chronic Illn. Published in final edited form as: Chronic Illn. 2013 Dec; 9(4): 302-311. Published online 2013 Apr 12. doi: 10.1177/1742395313478220 PMCID: PMC3893101, NIHMSID: NIHMS544489, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3893101/

3. Pheby D and Saffron L., “Risk Factors for Severe ME / CFS,” Biology and Medicine, Oct.-Dec. 2009; 1 (4): 50 – 74 http://www.prohealth.com/library/showarticle.cfm?libid=15073

See original post on HuffPost. (OMF website updated in this repost)

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

 

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

###

About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of five prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo