Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work, with 25% homebound or bedridden. An estimated 15-30 million people worldwide have ME.
What is Myalgic Encephalomyelitis?
ME is a systemic neuroimmune condition characterized by post-exertional malaise, which is a reduction in functioning and a severe worsening of symptoms after even minimal exertion. The effects of ME are severe enough to leave 25% of patients housebound or bedridden.
As a spectrum disease, all individuals with ME experience a significant loss of physical or cognitive functioning, but the severity varies widely. On average, ME patients score lower on quality of life surveys compared to those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and various cancers. The onset of ME can be sudden or gradual, with symptoms fluctuating significantly from day to day and the disease’s progression measured in years rather than weeks or months.
Prevalence
An estimated 15-30 million people globally suffer from ME; this includes at least 1,000,000 Americans, 250,000 British people, 100,000 Australians, and 400,000 Canadians. Approximately 75-85% of those affected are women, and 80-90% remain undiagnosed.
Symptoms
Common symptoms include:
- Significant physical or mental fatigue
- Post-exertional malaise
- Debilitating pain
- Sleep dysfunction
- Cognitive dysfunction
- Neurological impairment
- Sensory sensitivity
- Severe immune dysfunction
Diagnosis
Currently, there is no single laboratory test that can diagnose ME. Diagnosis is primarily based on clinical criteria and the exclusion of other conditions with similar symptoms. Many specialist physicians utilize consistent biological abnormalities demonstrated in research settings to aid in diagnosis. Due to insufficient education and awareness about ME among healthcare providers, many patients remain undiagnosed or misdiagnosed.
Upright Flexion/Extension MRI
This medical imaging advance allowed seeing problems that eventually helped Jennifer Brea improve. Upright flexion/extension MRI is an innovative imaging technique that allows for dynamic evaluation of spinal conditions, capturing changes in the spine during movement. Here’s a summary of findings and relevant information based on recent studies and facilities offering this imaging modality.
Treatment
No FDA-approved treatment exists for ME/CFS. The CDC acknowledges that treating the disease is complicated by its unknown cause. Because symptoms vary over time for many patients, specialists often recommend highly personalized treatment plans that may change frequently.
Jennifer Brea, the filmmaker behind the documentary Unrest, has made significant strides in her battle with myalgic encephalomyelitis (ME), achieving a remarkable remission of her symptoms following surgical interventions for craniocervical instability (CCI) and tethered cord syndrome. Her journey highlights the complexities of ME and its potential underlying structural causes.
Background on Jennifer Brea and Her Condition
Brea’s struggle with ME began after a viral onset, leading to debilitating symptoms such as extreme fatigue, pain, and neurological disturbances. Her condition deteriorated to the point where she relied on a wheelchair for mobility. In 2019, after undergoing multiple surgeries—including a thyroidectomy that exacerbated her CCI—she reported that all her ME symptoms were in remission[1][4].
Surgical Intervention and Recovery
Brea’s surgeries involved stabilizing her cervical spine, which she believes addressed the mechanical issues contributing to her symptoms. Post-surgery, she experienced significant improvements:
– Physical Abilities: She regained the ability to walk, exercise, and engage in activities like water aerobics and weight lifting[1][3].
– Symptom Resolution: Symptoms such as post-exertional malaise (PEM), sensory sensitivities, and cognitive difficulties diminished substantially[1][4].
Jeff Wood, another individual with similar experiences, also found relief from his symptoms following neck stabilization surgery. He described his condition as position-dependent brainstem compression, suggesting that mechanical issues could lead to ongoing neurological problems[1].
Insights on ME and Potential Triggers
Brea’s case raises questions about the nature of ME and its triggers. Research indicates that collagen-degrading enzymes can affect ligaments, potentially linking infections like Lyme disease or viral illnesses to dysautonomia—a common feature in ME patients[1]. This connection underscores the need for further research into how structural issues may contribute to chronic illnesses like ME.
Advocacy and Community Impact
Despite her remission, Brea remains committed to advocating for those still suffering from ME. She acknowledges that stories of recovery can evoke mixed feelings within the community, emphasizing the importance of understanding and supporting one another through shared experiences[4][5]. Her journey not only serves as a beacon of hope but also highlights the necessity for continued research into the mechanisms behind ME.
In summary, Jennifer Brea’s experience illustrates the potential for recovery from ME through surgical intervention for underlying structural issues. Her story emphasizes both personal resilience and the broader need for research into chronic illnesses that remain poorly understood.
Documentary “Unrest”
Resources
- #MEAction New Patient Support Group
- IACFS/ME Primer for Clinical Practitioners
- Institute of Medicine – Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
- Myalgic encephalomyelitis: International Consensus Criteria
- CDC Website
Read More
[1] https://www.healthrising.org/blog/2019/05/21/jennifer-brea-chronic-fatigue-mecfs-recovering-story/
[2] https://www.hammertonail.com/interviews/jennifer-brea-conversation/
[3] https://lareviewofbooks.org/article/when-the-chronically-ill-re-mission-filmmaker-jennifer-breas-life-after-unrest/
[4] https://www.meaction.net/2019/05/21/a-letter-from-jennifer-brea-about-her-me-remission/
[5] https://www.meaction.net/2020/11/12/important-news-from-jennifer-brea/
[6] https://www.youtube.com/watch?v=i0VZ7KW0GCw
[7] https://www.imdb.com/title/tt3268850/reviews
[8] https://www.reddit.com/r/cfs/comments/pr808c/so_did_jennifer_brea_actually_have_cfs_or_not_im/
[9] https://www.youtube.com/watch?v=FIrXfSYFxC4
[10] https://www.unrest.film