Everyone is at risk. ME/CFS occurs in people of all ages, races, and socioeconomic groups ¹¹. Women are affected at a rate of 3 times that of men ¹, but it absolutely affects men as well. Prior to the pandemic, there were an estimated 2.5 million people living with ME/CFS in the United States ⁹, but Covid-19 has drastically increased the number of people with ME/CFS to an estimated 9 million ¹⁷, as the disease is most often triggered by an infection.

ME stands for “Myalgic Encephalomyelitis”, which means muscle pain and inflammation of the brain and spinal cord. The WHO has recognized ME since 1969 ⁸. CFS stands for “Chronic Fatigue Syndrome”, which is a term the US government adopted in 1988 to refer to the disease. Most people find this name to be extremely offensive and misleading ⁶. The US government currently uses the term “ME/CFS” on their websites.

ME/CFS is most often triggered by an infection ² (an infectious episode near the onset of ME/CFS is recounted by 80% or more of patients ²⁷), but may also be triggered or worsened by other stressors, such as surgery, car crash, chemical exposure, and other physical traumas ². People with ME/CFS have radical abnormalities in their immunological, neurological, autonomic, and energy metabolism systems.

There are more than 60 reported symptoms, but its hallmark sign is that symptoms worsen with any sort of physical, mental, or emotional exertion. This symptom is referred to as post-exertional malaise.

Other common symptoms include extreme fatigue, sore throat, tender lymph nodes, muscle and joint pain, headaches, brain fog and cognitive problems, sensitivity to lights/smells/medications/chemicals, vertigo, sleep abnormalities, weakness and paralysis, allergies, frequent infections, orthostatic intolerance, temperature instability, increased thirst, and dramatic immune dysfunction ⁹.

ME/CFS is a very serious disease. 25% of people with ME/CFS are completely homebound or bedbound and 75% of people with ME/CFS are unable to work full time ⁹. Research has shown that people with ME/CFS have a quality of life score worse than type 2 diabetes, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease ⁹.

There are currently no diagnostic laboratory tests for ME/CFS, nor are there any FDA approved treatments for it ³. Furthermore, ME/CFS specialists are few and far between. People with ME/CFS and their families are often completely on their own, a terrifying reality given the gravity and volatility of the disease.

Your doctor is misinformed, but this is not shocking. Fewer than ⅓ of medical school curriculums currently address ME/CFS and less than ½ of medical textbooks contain information about the disease ⁹.

Some people with ME/CFS improve, some stay the same, some worsen ³, but the prognosis would dramatically improve with the appropriate clinical resources and research dollars. Every indication is that ME/CFS could be a solvable, treatable, and manageable disease ¹⁵.

ME/CFS has been neglected, stigmatized, and mischaracterized for decades, driving away both the medical and research communities ⁸, despite now affecting an estimated 9 million people ¹⁶.

The CDC has referred to it as a “hidden health crisis” ¹⁶ and a representative from the NIH has said that they “feel terrible” about it ¹⁴. While things have begun to change, they’ve hardly done so with the urgency and funding that this issue demands, especially given the neglect that’s befallen it. In 2022, multiple sclerosis received $121 million in funding from the NIH. ME/CFS received only $13 million ²¹, despite being a more common illness with a more impaired quality of life. ME/CFS is our nation’s most underfunded disease ²¹ with respect to the severity of the disease and the number of people affected.

Millions of people are living with one of the most profoundly disabling diseases with little assistance, acknowledgement, infrastructure, or systems of care. Everyone from children as young as 5 are affected to seniors in their 70’s ¹. Some people have been suffering for decades, more people are getting sick every day, and it's costing taxpayers as much as $362 billion a year ¹⁷.

ME/CFS is not just an issue for people with ME/CFS. It’s a story about extreme human suffering, the horror of not being believed, and the consequences of gender bias ⁹. This is a cause that everyone can get behind.

Share #NotJustFatigue with your family, friends, followers, colleagues, and representatives, and donate to ME/CFS causes.