“Of all the forms of inequality, injustice in
healthcare is the most shocking and inhuman.”
–Martin Luther King Jr.

Myalgic Encephalomyelitis (ME) is an acquired multisystem disease affecting 500,000 to over 1.5 Million Americans. Patients suffer profound debility, isolation, and in severe cases death [1, 2]. Patients suffer horrific symptoms from the disease’s neurological, immunological, and metabolic components as well as social abandonment. Every day, patients with Myalgic Encephalomyelitis live facing a want of medical knowledge and compassion.
 
Tragically, progress has been excruciatingly slow due to the United States Department of Health and Human Services (HHS) and the National Institute of Health (NIH) refusing to fund high quality biomedical studies. More than 60 years after Myalgic Encephalomyelitis's discovery there remain zero FDA approved treatments.

We are petitioning NIH to save the lives of Americans with ME and millions more people worldwide by immediately increasing the biomedical research and clinical budget for Myalgic Encephalomyelitis:

We urgently need

• A prompt and sustained commitment to increase dedicated research funding into the disease Myalgic Encephalomyelitis.
• A strategy for ensuring high-quality science via: use of the best research tools, expanded patient collaboration, a national patient registry and a shift to appropriate grant review.
• A nationwide research and clinical infrastructure that will facilitate researcher collaboration and care for patients.
• A research approach which selects a homogenous group (with the cardinal symptom of post-exertional neuroimmune exhaustion) via the best definitions (ICC [3] and CCC [4]).

Please Join Us And Sign! ❤️ 

More about Myalgic Encephalomyelitis.

Myalgic Encephalomyelitis is a post-viral onset disease which affects neurological, circulatory, and immunological systems. [5, 6]. Typically, a person with ME first presents with a respiratory or gastrointestinal illness such as a flu. This acute illness is followed by debilitating symptoms: unrestful sleep, insomnia, diminished cognition, dizziness, sweats, nocturia, widespread muscle pain and incoordination.

In the chronic stage sufferers experience not only these symptoms but a dramatic loss of functional capacity and a characteristic delayed 16-48 hr. intensification of symptoms after minimal exertion [3, 4]. Due to the lack of medical and social supports, sufferers must navigate daily living and basic needs alone with a level of impairment similar to congestive heart failure [7].

Some are killed by complications, some commit suicide, many are hanging within a breath of life. Large scale, and high quality, research is urgently needed. In the world's wealthiest country, thousands of patients are reduced to crowdfunding or pleas for public assistance, simply to stay alive…

Myalgic Encephalomyelitis sufferers around the world today are still dealing with the fallout of the CDC and NIH adopting a hostile stance towards them after an outbreak at Incline Village, Nevada. Discrimination remains pervasive but it is within our power to change this unjust situation.

The first step towards real change is acknowledging failure. And one of the most foundational premises of our country is that people can learn from the past if they are responsible enough to think on and modify their actions.

Please sign this petition for increased research into the biomedical mechanisms of Myalgic Encephalomyelitis, increased patient voices in research and increased hope!  

Please support people with Myalgic Encephalomyelitis by signing, writing your representatives and contributing, when possible, to patient charities and nonprofit research foundations.

With your help–the future need not be determined by the wasteland of the past.


Stories of people with ME. 

Full Request.

The Feds and ME: The Need for a Complete Relaunch of Research.

The Risk of ME following COVID-19.

References.

1. Jason LA, Richman JA, Rademaker AW, et al. A community-based study of chronic fatigue syndrome. Arch Intern Med. 1999;159(18):2129-2137. doi:10.1001/archinte.159.18.2129
2. Nacul LC, Lacerda EM, Pheby D, et al. Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care. BMC Med. 2011;9:91. Published 2011 Jul 28. doi:10.1186/1741-7015-9-91
3. Carruthers BM, van de Sande MI, De Meirleir KL, et al. Myalgic encephalomyelitis: International Consensus Criteria [published correction appears in J Intern Med. 2017 Oct;282(4):353]. J Intern Med. 2011;270(4):327-338. doi:10.1111/j.1365-2796.2011.02428.x
4. Carruthers, B M et al. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Guidelines A Consensus Document. Journal of Chronic Fatigue Syndrome, 2003 11:1, 7-115, DOI: 10.1300/J092v11n01_02
5. Ramsay, A. Melvin. Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free disease. Gower Medical Publishing. for the Mya; 1988. 2nd Edition.
6. Ramsay, A.M.; Dowsett, E.G. Myalgic Encephalomyelitis: Then and now, an epidemiological introduction. The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, edited by Hyde, BM, Goldstein, J, Levine, P, The Nightingale Research Foundation, 1992, pp. 81–84. 
7. Komaroff AL, Fagioli LR, Doolittle TH, et al. Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups. Am J Med. 1996;101(3):281-290. doi:10.1016/S0002-9343(96)00174-X