Questions about ME

A number of black question marks spread over a black floor, with two of the question marks in bright orange.

What is ME?

“Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.”

International Consensus Criteria 2011

Is ME a mystery disease?

ME is not a mystery.

We may not know what causes ME, the same as we don’t know what causes multiple sclerosis (MS).  In 2011, 26 experts took the mystery out of ME by creating the International Consensus Criteria (ICC) that helps doctors understand the breadth and depth of ME.

They went on to write the ICPrimer in 2012 that describes the ME experience and removes the mystery behind the symptoms we experience.  We should drop the mystery word and educate everyone by using the ICC.

By doing that, a recognition of ME will take place, similar to what those who have MS experience.

What's behind all of the different labels for ME?

That depends on where you live and when it is said.  Labels for ME are attached to various meanings and that has varied over time and location.  The “correct” label is the one most closely aligned to a person’s experience, dictating what kind of medical treatment is needed.  A strong connection needs to be made between the label used and the treatments that should be expected.  To get there, it helps to connect the label to the criteria that will provide the proper testing and treatments for each patient.

So we think it is time we started using clarification labels.

ME-Ramsay (Dr. Melvin Ramsay; original description of ME – 1950s)
CFS-Fukuda (Dr. Keiji Fukuda; the 1994 CDC criteria)
ME/CFS-CCC (The Canadian Consensus Criteria (G93.3) – 2003)
ME-ICC (International Consensus Criteria – 2011)
ME/CFS-SEID (The IOM report, now the National Academy of Medicine (NOM) – 2015)
ME/CFS (discussing both ME & CFS as separate things)
ME-Hyde (enterovirus connected to polio)
CFS-NICE (UK – using various labels of CFS & ME & ME/CFS) 
CFS-Oxford (UK – using various labels of CFS & ME & ME/CFS)

So we really need a huge education campaign to help everyone be more clear about what they mean when they say ME or CFS or ME/CFS.  See our Understanding Criteria page for more information. 

Out of all the diseases, why study ME?

  • ME has been falsely characterized as psychogenic by the CDC for almost 40 years
  • There have been DECADES of neglect and misinformation
  • ME has been stigmatized as “chronic fatigue syndrome” and “yuppie flu”
  • Improper and harmful treatments are still prevalent
  • Incorrect and harmful information still persists on reputable websites 

Why does criteria matter?

Pears vs oranges? Or why criteria matter

The argument sometimes goes like this: “Names aren’t important.” “Call it xyz and be done with it.” “The important thing is research and a cure”.

Sounds reasonable. After all, sick and suffering people just want a cure, treatment, something to help, and rightly so. And names seem like such a silly thing to even care about in the bigger picture. Why does it even matter?

But research starts with something. It starts with people. People who have a certain illness. You can’t research an illness without people who have that particular illness.

But what illness? First you have to define the illness. That’s where criteria come in. If you do a research study on 10 people with 10 different illnesses, it’s like doing a study on 10 different fruits.

What meaningful result will you get? That they are all fruits? But we already know that. And what applies to a pear may not necessarily apply to an orange and vice versa. So then we are back to square one.

We have seen the results of this approach of studying all fruits together for decades. The results are not good. Inconclusive. Contradictory Cannot be replicated. We end up stuck, confused. Comparing like with like is crucial. It’s how we make real progress toward a treatment, a cure.

This is why criteria are important. They help us compare like with like. Criteria are the building block of research, step one. How you pick people for a research study in the first place.

It’s not so much the name, but which criteria that name is attached to. Illness names don’t exist by themselves. They are always attached to criteria. Just like the word pear attaches to a meaning. And that meaning is different from an orange. Criteria are the meaning behind names.

Selecting patients to study using criteria that specify the illness you’re studying is crucial. So you know you’re studying 10 pears, as opposed to 6 pears and 4 oranges.

Because having 4 oranges in with 6 pears will cause a lot of confusion if you’re trying to figure out something about pears. You will skew the results. When you study pears you need to study only pears. And the same applies to oranges or any other fruit.

That’s why sorting pears from oranges and other kinds of fruit really matters for research. A lot. In fact, it’s the most important thing. And without this crucial sorting, there is no meaningful research and sadly no cure. Whether a pear, an orange, or a fig, everyone deserve proper study, proper research, treatments and a cure. Criteria matter.

Why does ME deserve special treatment?

as compiled by Art Mirin, Nov 2019:

  • Falsely characterized as psychogenic by CDC nearly 40 years ago
  • Gender bias likely influenced improper psychogenic label
  • Consequent decades of neglect and misinformation (little research, low medical school coverage)
  • Consequent lack of familiarity of health care providers
  • Stigmatization (still persists today)
  • Improper and harmful medical treatments (GET, CBT)
  • Incorrect and harmful information still persists on reputable websites
  • Extreme shortage of clinical care
  • Improper disease coding, making insurance coverage more difficult
  • Not a rare disease – affects 1-2.5M Americans
  • No FDA-approved drug or treatment
  • High degree of morbidity (low QoL compared with other diseases)
  • Burden on caretakers (due to morbidity)
  • 25-29% bedbound/homebound, 35-69% unemployed, 84-91% undiagnosed
  • Burden double that of HIV/AIDS and over half that of breast cancer
  • Most under-funded disease (NIH) with respect to burden (for those diseases where NIH supplies burden data)
  • Government has not acted with urgency 

How many people have ME?

A current estimate for prevalence of ME is up to 0.4% of the population (approximately 1.34M people in the U.S.). 

Long COVID has some overlapping symptoms with ME/CFS as defined by the US-IOM/NAM report as well as the 2022 NICE guidelines.  There is insufficient information to determine which symptoms overlap with ME as defined by the ME-ICC.  At this time we cannot speculate with any certainty that post-acute sequelae SARS-CoV-2 infection (PASC) will change the percentage of people with ME. We look forward to more research into long COVID and myalgic encephalomyelitis to better answer this question. 

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