Heads up, folks! This is probably the most important post I will ever write. It’s certainly one I feel very passionate about. It’s also a bit daunting, because I really want to get it right, to write this post in such a way that people will understand the truth in what I’m saying and pass it on. So, here it goes.
ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as “MECFS,” “CFS/ME,” etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.
Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. One of the hallmark symptoms of ME is heightened muscle fatiguability after minimal exertion with extended recovery time. This means our muscles fatigue very quickly while performing even trivial tasks – often to the point of paralysis – and can take multiple days to fully recover, often with significant, difficult to treat pain. The name Myalgic Encephalomyelitis means “muscle pain and inflammation of the brain and spinal cord.” It’s a perfect fit. In 1969, the World Health Organization recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease (located in the ICD at G93.3).
Then the US got involved. In 1984 there was an outbreak of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. They scanned a couple files, then spent the rest of their trip skiing and relaxing. They returned to their jobs with the official conclusion that there was nothing to worry about. Three years later, the US formed a committee to discuss the illness that had caused both this outbreak and several similar ones across the US and Canada. Out of the approximately 25 people at that meeting, only three had extensive experience researching this disease and working with ME patients themselves. All three of these ME experts walked out mid-meeting when it became clear the other, non-expert members were determined to create a definition that had nothing at all to do with ME and everything to do with a combination of symptoms from Epstein Barr and infectious mononucleosis (glandular fever), which many at the time mistakenly insisted were the cause of these outbreaks (theories which made no sense at the time and have since been disproven time and again). Rather than listen to the experts and define/call the illness by the well researched name already recognized by the World Health Organization, these non-experts came up with the name Chronic Fatigue Syndrome. This is where the two names became linked.
However, the diagnostic criteria the US chose to diagnose CFS is very simple and absolutely cannot be used to correctly diagnose ME. In order to be diagnosed with CFS, a person must have fatigue lasting 6 months or longer which worsens after exertion and is unexplained by any other illness (technically this alone should rule out everyone with ME, whose fatigue is explained by a WHO/ICD recognized illness). Also note that CFS is a syndrome, meaning a collection of similar symptoms, as opposed to a specific disease process. It is not and was never intended to be seen or treated as one specific illness, having been created simply as a category for researching unexplained fatigue (don’t believe me? Read the last sentence of the abstract of the paper that officially created/defined CFS back in 1988). For a doctor to look at someone and say “You have CFS, and there is no treatment for it” is wrong. You cannot treat CFS because it is not a single illness, but a whole collection of illnesses not yet diagnosed in the people carrying the label. Think of all the illnesses out there that cause some level of fatigue. People from all of those illnesses are being misdiagnosed with CFS every day. This is why researching CFS is a waste of money. You cannot define it or find a single cause or treatment for it because there is no single “it” to research. That is CFS. “It” is fatigue from every cause under the sun, not yet diagnosed, often because doctors are under pressure not to order the expensive tests necessary to find each person’s illness.
ME, on the other hand, is a distinct, clearly diagnosable neurological illness, similar to MS (for a list of similarities between the two, click here). It is not a diagnosis of exclusion like CFS (ie, “you can only have this if nothing else explains your symptoms”). Just like other neurological diseases, it is possible to have both ME and other illnesses, even those with similar symptoms, as long as you test positive for all conditions present. And yes, there are specific tests which can diagnose ME with a high degree of accuracy – higher, in fact, than for many other neurological illnesses, such as MS. Furthermore, studies have shown that less than 1 in 10 people diagnosed with CFS actually have ME. That means 90% of CFS patients have something completely different from ME. This makes combining the two terms not only highly inaccurate, but also extremely harmful to both patient groups involved. By taking media attention and the precious few research dollars intended for ME and spending it instead on CFS, it leaves those of us living with this horrendous disease with literally no voice and no hope for a better future. All our research dollars are being spent on people who don’t even have our disease! What hope for a better future does that leave us? What hope for a cure or decrease in our suffering could we possibly have when researchers aren’t researching our disease at all, using our valuable resources instead to chase the mirage of conditions included under the CFS umbrella?
For CFS patients, linking their illness to one they do not have keeps them from finding out the true cause of their symptoms. Most fatigue producing illnesses have at least some treatment available. CFS patients are being denied appropriate treatment by doctors who are content leaving their patients with a label which basically says “I don’t know what’s wrong with you, and I’m not going to search any further.” One study found that a whopping 30% of individuals suffering from Major Depression are misdiagnosed with CFS. 30%!!! That’s unforgivable! Especially considering Major Depression is a highly treatable condition. There have also been people with cancer, MS, Lupus, Lyme disease, AIDS, and many more illnesses, all misdiagnosed with CFS and left to suffer (and many times, worsen) on their own. If you are living with a diagnosis of CFS, I cannot urge you strongly enough to keep pushing for the real answer behind your symptoms. Keep seeing doctors until you find one as determined as you are to find your true diagnosis. Don’t give up! You’ll never find out what treatments are available to you until you first discover what is truly behind your symptoms. Do not, by any means, accept the non-answer of CFS. Every diagnosis of CFS is a misdiagnosis.
If you think you might have true ME, I recommend using the International Consensus Criteria as a starting point towards making that determination. It’s not perfect, as the authors unfortunately used many mixed diagnosis “ME/CFS” papers while doing their research, but it does include many typical ME symptoms in its criteria and can help rule out many of the illnesses frequently misdiagnosed as ME. To truly define ME (and only ME), the ICC would need to add the requirements for viral onset and specific, testable muscle fatigue that together truly define and differentiate ME from other, similar conditions. If you’d like to know more about what specific tests can be used to give a concrete diagnosis of ME, check out the page “ME tests.” If you’d like to read more about the difference between ME and CFS, as well as the politics which led to the current mess we are in, I highly recommend reading “The Misdiagnosis of CFS.” I’ll write more a about what, specifically, ME is in a later post, but if you want to get a head start, I recommend visiting The Hummingbirds’ Foundation for ME, which is one of the very few websites with accurate information about this disease. There is also a truly terrific series on all things ME – its history, symptoms, and what needs to happen now – going on over at A Rainbow At Night. Click here to read the first installment.
I promise to write more later, especially about how this illness has played out in my life, but for now I’d like to end this post with a plea. Please, don’t ever combine the terms ME and CFS in any way, and take time to educate those you see doing so. To combine those two terms is to assist in the propagation of a myth that hurts hundreds of thousands, if not millions, of people around the world every single day. None of us can get help until this myth disappears. Please help me spread the truth. Thank you.