My illness has so many components to it, with so many pieces of various illnesses with various names, like FM, IBS, EI, MCS, CIRS, it is ridiculous. With all the acronyms that fit me, I could make an alphabet soup. But for an overall name, I now feel comfortable with CFS–Chronic Fatigue Syndrome.
This article explains welcome changes with the Centers for Disease Control and Prevention (CDC) of the United States. CDC Website Pages on ME/CFS Now Mention Mold Connection and Chemical Sensitivities
Legitimization of this illness is a big deal. The article above shows that the CDC not only mentions mold and chemicals but also explains that this illness is not psychological and hints that this illness is also not caused by de-conditioning (lack of exercise).
I chose Chronic Fatigue Syndrome (CFS) over Myalgic Encephalomyelitis (ME) simply because it is easier to say. 🙂 Of course, “fatigue” does not nearly describe what we go through. Chronic Crash Syndrome or Chronic Exhaustion Syndrome would be better, but I will take what I can get. I feel there are just as bad or worse problems with other names for my illness or parts of my illness, such as Multiple Chemical Sensitivity–“sensitivity” is not strong enough for any version of MCS except mild MCS.
So with the name CFS, a medical professional, new friend, or whoever can immediately get good information on CFS from the US government. This is a good place to start.
If I am talking with someone who seems interested, I might say I have CFS but it is not exactly what it sounds like–it is not the same as being tired at the end of a work day or having a season of fatigue from working hard or not sleeping enough. It is more like–though not completely–having the flu for months and months. Or like exercise ignites a monster within to damage the body (post-exertional malaise, or PEM also mentioned in the article) until and if one gets clear of the problem substances–for me, mold and chemicals; for others possibly infections or other xenobiotics, though I will admit I think mold plays a part far more often than not, partly due to the often-hidden and widespread nature of mold. Plus the original CFS Syndrome was highly linked with mold: https://paradigmchange.me/erik/ I might even dare to begin explaining this part as well, if it seems the person has an open mind. Once a person gets clear enough, exercise does help, which has happened to me several times. (But then I have been hit again by toxins or toxicants. I am recovering from another one and hope to do real exercise again soon.)
So, there you go. Good news on CFS. Making progress. Many voices speaking the truth, so eventually it will get out there.
Christa Upton Black Hills Picture Books Edgemont, SD 57735
