A very special lady is near death. Her name is Brooke. She has M.E. (myalgic encephalomyelitis). When she knew she was going to die from this disease, she decided, at the beginning of this year, to document her experience in a new blog titled, “Documenting M.E.”
It has been quite an experience to read her posts. They took all the sparse strength she had. Her Mom supported her decision to do this. She no longer has the strength to post on her blog, but her Mom has promised to alert her followers as to her condition, or death.
A very brave and courageous young woman.
Here is an excerpt from one of her early posts, in which she describes the difference between M.E. and CFS (Chronic Fatigue Syndrome) and how the two became mistakenly intertwined.
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. 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.
Then the US got involved. In the 1980s, there was a breakout 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. Soon after, the US formed a committee to discuss the illness that caused the outbreak. There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US 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 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. 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. This 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 diagnoses, 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 to make that determination. It was developed and unanimously approved by many of the world’s top ME experts, and is the best tool I have found for separating true ME from other stuff. 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 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.
Thank you to A Rainbow at Night for bringing us up to date on Brooke’s condition in her final stages of the horrendous disease, M.E.