For Family and Friends
Your family member or friend has told you they have ME, ME/CFS, or CFS. But what is that? They look fine and, on occasion, they seem perfectly normal to you. But they have days when they’re too exhausted to participate socially. Maybe they’ve told you they can’t talk on the phone, they can’t attend celebrations, or work like they used to, and you’re not sure what’s going on. It’s confusing because even doctors don’t seem to know what ME is, or how to help them.
Yes, it’s true that many medical professionals have little or no knowledge of ME because they have not learned about it in medical school. Whether you are a friend, family member, or medical professional who’s trying to understand someone with ME, I’ve provided peer-reviewed, medical studies and articles to help you learn that this is not somatic, not psychological, but a clinical illness recognized with a diagnostic code and by the international medical community.
It’s never too late to learn and to help someone you know who is genuinely suffering.
Below are links to scientific papers that explain what ME is and how a variety of illnesses can lead to ME, plus describe the debilitating symptoms that are making them worse over time, not better. Some quotes are provided so you don’t have to read long papers.
What is ME?
(Myalgic Encephalomyelitis is also known as ME/CFS and Chronic Fatigue Syndrome)
The CDC (Center for Disease Control) Overview of ME
This page has topics regarding ME to choose from:
A variety of the possible causes of ME are listed here:
International Primer on ME
This is a peer-reviewed document for physicians around the world to help them understand the disease, which has been largely misunderstood.
Quote from Page 1 (the 7th page of the document):
“Myalgic Encephalomyelitis (ME): complex, acquired multi-systemic disease Pathophysiology: Profound dysfunction/dysregulation of the neurological control system results in faulty communication and interaction between the CNS and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments.
Cardinal symptom: a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand. There are measurable, objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period. Note: Myalgic encephalomyelitis (ME) is the name recommended for those meeting the ICC.”
Peer Reviewed Paper on Parents as Caregivers for Severe ME begins by describing ME
“Individuals with ME, ME/CFS, and CFS are severely functionally impaired. Research utilizing the Health and Functioning subscale of the Quality of Life Index (Ferrans & Powers, 1985) revealed that the quality of life of a sample of individuals with CFS was lower than that of individuals with stage 1 human immunodeficiency virus (HIV), individuals post-chemotherapy treatment, individuals who received liver transplant operations, and those with coronary artery disease (Anderson & Ferrans, 1997). A longitudinal study (Anderson, Permin, & Albrecht, 2003) found that work-related disability in individuals with CFS increased significantly over time, and many ultimately ceased working altogether. Komaroff and Buchwald (1991) have found that 25 percent of a representative sample of patients with CFS reported being bedbound.”
Overview of the most common symptoms of ME, to understand what your friend or family member is experiencing:
Many illnesses can lead to ME
If it’s confusing to you that you’ve had the same sickness but did not get ME, consider this:
If you don’t drown when you fall into the ocean, does that mean no one will drown?
For various medical reasons, some who suffer from a serious infection will get a post-viral disease called ME and some won’t. Like the person that can’t swim, their bodies don’t have the tools to recover properly from the infection. Some get it from Covid19, some get it from Epstein Barr (mono), and some from Dengue or other illnesses. But not everyone with Covid or Dengue or Epstein Barr will develop ME.
Study of ME/CFS after a Dengue Outbreak in 2005
According to this article, 25% of people in a specific Dengue outbreak in Singapore in 2005 developed ME. Everyone who has Dengue fever (or any other infection) is, thankfully, not guaranteed to get ME. The researcher tries to figure out what might cause some, but not others during the outbreak, to develop ME. If they knew, they’d be closer to a cure, but they don’t.
"Significant post-infectious fatigue was observed in approximately 25% of the hospitalised patients. Risk factors for the development of fatigue included older age, female sex, and the presence of chills.
The study adds further confirmation to the fact that a wide range of infections, predominantly viral, can trigger an ME/CFS-like illness. It also adds some support to the disease model involving immune dysfunction (including excessive immune chemical/cytokine production), hypothalamic-pituitary-adrenal axis dysfunction, and autonomic nervous system dysfunction."
A peer reviewed study of an 11 year old who got ME/CFS from Dengue Fever
A discussion among doctors about ME/CFS and Long Covid mentions Dengue
Quote below is from page 9 of the discussion transcript.
“The next patient is 37-year-old female who in December 2017 she went for a vacation in Cabo San Lucas and she presented a few days after her vacation with severe diarrhea, myalgia, fatigue, low grade fever, and a diffuse rash. Her labs show leukopenia and neutropenia. And here we see on the left this very fine rash that is classic for Dengue. ...Later a sample was sent to CDC in Fort Collins for testing arbovirus and came back positive for IgM for both Zika and Dengue virus. For two years post-infection she continued experiencing severe fatigue, post-exertional malaise, OI and brain fog. She used to hike around 20 miles in a single day but now she can walk between 50 feet, and the maximum she can do is two miles one or two times a week. She came to Stanford and we confirm the diagnosis with chronic fatigue syndrome.”
Just like you believe the person with Epilepsy, even if you’ve never seen them have a seizure… And I'm sure you believe the person with Cancer, even though they haven’t shown you their scar… When someone says they have ME, and this is why they can’t attend the graduation or the wedding, or come out for coffee, believe them. They really would have loved to attend that event or hang out with you. They are not lazy, not faking, and not trying to get attention. They are truly, tragically ill with a disease they would not wish on their worst enemy.
How can you help?
Believe them. Believe their symptoms. And tell them you’re sorry if you’ve ever disbelieved or dismissed them. Stay in touch. Shoot them a text now and then just to say you’re thinking of them. There is no cure and no universal treatment. Please don't tell them to Look on the bright side, It could be worse, or Feel better soon. Don't compare your experience of being very tired to their disabling exhaustion. Be understanding and patient. Be generous with your empathy and compassion.
Isolation is the heartbreaking result of not having the energy to participate socially. You can help them and make them feel less isolated. Ask them what kind of food they need and bring it by without a big fanfare. Maybe they need an errand run or a ride to an appointment. Ask if they’re able to listen before you start talking. If not, just give them a smile and a nod and let your love speak for itself. Because in that moment, saying nothing is saying "I love you."