ME/CFS is a neuroimmune disease that I have. It seems to be fairly common in moms of kids on the spectrum, so I am including information on this blog about it because I feel that my illness is intricately interconnected with Roo's disorder, and that what has been working to heal him is what offers me the most hope for recovering. Not many people have heard of M.E. (which stands for Myalgic Encephalomyelitis), and many of us with this illness hate to use the name CFS (Chronic Fatigue Syndrome) because we feel that that name trivializes an illness that can be devastating and even fatal. Because of this, people are always asking me what ME/CFS is, so here I will try to answer that.
This video was put together by a woman named Laurel who is currently bedridden with ME/CFS. She writes a blog called Dreams At Stake: A Journey of Hope Through Severe ME/CFS, which is very informative about this illness. If you click on the tab "my story" you will read about the onset of her illness and how it affects her. Along the right side of her blog is a long list of good ME/CFS blogs.
This disease has gone by many names. Someone prominent in the field has pointed out that the less well understood an illness is, the more names it will tend to have, so this is fitting. The CDC and mainstream medicine have shown essentially no interest in figuring out what this disease is and what can be done about it, choosing instead to stigmatize and minimalize it. It has been considered by the CDC up until now to be a psychiatric disorder caused by "inappropriate illness beliefs". Other names that this illness is known by here in the US include: Post Viral Syndrome, Chronic Mononucleosis, Post Viral Fatigue Syndrome, Yuppie Flu, Atypical Poliomyelitis, Encephalomyelitis, Epidemic Neuromyasthenia, Chronic Fatigue Syndrome, Chronic Fatigue Immune Deficiency Syndrome, Iceland Disease, and even HIV-negative AIDS. Taken as a whole, this collection of names is telling- it suggests a viral connection (interestingly similar to polio), we see that the illness has often been associated with cluster outbreaks (and many of these clusters have been given their own name, such as Iceland Disease and Royal Free Disease), and that significant symptoms involve fatigue, pain, immune dysfunction and neurological symptoms. The most recently proposed name is XAND which stands for X-Associated Neuroimmune Disease to reflect the new findings that ME/CFS may ultimately be caused by a retrovirus.
The primary reason that the name matters (aside from influencing how the disease is perceived by others) is because several of them are associated with slightly different diagnostic criteria. Diagnosis of Chronic Fatigue Syndrome tends to center around the primary criterion of severe exhaustion that persists for at least 6 months and that is not relieved by rest or sleep. It is recognized that other symptoms tend to be present as well, such as pain and the other symptoms listed for M.E, but they seem to receive less emphasis and so this diagnosis is often perceived as trivializing the illness.
The common symptoms of ME/CFS include (in varying combinations and degrees in each person):
-low blood pressure
-chronic sore throat and/or swollen and tender lymph nodes
-lightheadedness or dizzyness when standing up. (When this is severe it is called Orthostatic Intolerance and has to do with an inability to appropriately control blood pressure.)
-cardiac symptoms, such as racing heartbeat, irregular heartbeat, strange sensations or pain in the chest.
-weepiness, depression, anxiety.
-difficulty with word retrieval and/or difficulty in processing what others say. This can come and go. Sometimes the auditory processing part is experienced as it taking a lot of energy to pay attention to someone who is talking.
-memory disturbances, especially short-term (like wondering why you walked into a room, or losing your train of thought).
-Irritable Bowel Syndrome is very common in people with ME/CFS.
-Post Exertional Malaise- this is a "make or break" symptom for diagnosis, and means that the person "crashes" after exercise or other exertion. The "crash" can be up to 72 hours later, and the person may feel pretty good at first before the crash.
Crashing usually means serious worsening of exhaustion and pain, but can also include other things like heartbeat changes and flare-ups of digestive problems. Exertion can mean things like leaving the house for an outing, even having a conversation- not just a "workout". People with ME/CFS often can't do more than one thing in a day, or can't plan things for two days in a row. They tend to feel that they need "recovery time" after doing things like going to the store, socializing, even standing for a period of time. It varies a lot from person to person and in some people it seems to come and go while in others it is very consistent. Some people are completely debilitated while others are able to maintain a higher level of functioning.
To read more about the diagnostic criteria of ME/CFS, go here.
These articles discuss the stigma associated with the diagnosis of CFS:
The Stigma of Chronic Fatigue Syndrome
The Stigma of Chronic Fatigue Syndrome II, Reader's Respond
A basic description of the fundamentals of ME/CFS.
FAQ about ME/CFS from the Whittemore Peterson Institute for Neuro-Immune Diseases
