Myalgic Encephalomyelitis (ME, CFS, Chronic Fatigue Syndrome)by Dave Cottrell
Like many who have discovered they have Lyme disease, I was diagnosed with Chronic Fatigue Syndrome (CFS) by an Infectious Disease specialist.
The specialist ignored a number of my symptoms and either would not or could not answer some of the questions I gave him in response to his diagnosis, like, “Why, if it was CFS, was I still getting sicker? Why did antibiotics (abx) bring a great improvement after one month, and why, after being on abx for six months, did I begin to get sick again within two months?”
His quick reply about abx was that it was a placebo effect; because my mind told me the abx would work, I felt better on them, and when I went off, my mind told me I was getting sick, again.
This reply was without knowing me, without knowing my nature, my natural skepticism about any kind of treatment, in fact, without doing any kind of proper assessment of what my experience with abx really was.
Had he paid a little more attention, he would have discovered that I noticed no improvement for the first month of abx, and that I had plateaued at the end of the fourth month. Had he carefully listened, he would have realized that my health did not deteriorate immediately following going off the abx… it stayed virtually unchanged for about two months.
I was no where near well at that point in time, but had noticed an improvement, especially in my energy levels, but no noticeable improvement in my pain levels. Approximately two months after going off the abx, my health began to deteriorate rapidly, and I ended up sicker than at the beginning, before I found the doctor who now treats me.
(I could not find a doctor anywhere who would continue to prescribe at that time, due mainly to fear of the College of Physicians and Surgeons [COPAS] and partly to a woeful ignorance of Lyme disease.)
None of the evidence surrounding my experience with abx treatment supported the idea of a placebo effect. However, upon seeing another Infectious Disease specialist for a second opinion, I was given the exact same diagnosis. It was quite clear that specialists in BC back one another up.
Regardless of the errors and omissions that I believe were made by the specialists in diagnosing me with CFS, it gave me reason to look at CFS in more detail. What I found was that CFS is a very broad ranging and rather vague term for a huge variety of symptoms, the most obvious being extreme fatigue.
There are several diseases, or better, conditions like this that seem to be scientific sounding terms used in place of a less scientific, “We don’t know what’s wrong with you, but darn! You’re sure sick!”
Recently, a primer for medical practitioners was sent to me, entitled, “MYALGIC ENCEPHALOMYELITIS – Adult & Pediatric: International Consensus Primer for Medical Practitioners”.
This publication is a very carefully researched primer on Myalgic encephalomyelitis, or ME, the proper name for what is often called CFS. The point made in the publication is that CFS is much too broad.
It has been most interesting to read this small booklet in PDF format. While the entire publication is only 36 pages long, the last 10 pages are the references.
I have added this publication to this website in the hopes that you will read it and share it with others who have or believe they have Lyme disease.
In reading it, myself, I have discovered why the Infectious Disease doctors diagnosed me with “CFS.” While they very obviously do not understand CFS, they were at least educated enough on the topic to recognize that many of the symptoms that I displayed fall under the CFS banner.
Unfortunately, they did recognize that CFS is too broad and that ME is a much better description of the physiological aspects of this disease. (CFS also includes the physiological manifestations of depression).
Many of the symptoms of ME are also many of the symptoms of Lyme disease. Like Lyme disease, itself, they must be treated as soon as possible by knowledgeable practitioners, or they can get much worse. There is no known cure for ME, but it can be treated, and it is being studied.
Lyme disease is one of the possible causes of ME. Therefore, ME is something that Lyme sufferers must educate themselves in.
This may explain the mystery of why some long term Lyme patients, when treated with abx recover completely, while others do not. For some, while they may well have had Lyme disease, it may have already caused the even more serious ME.
This is not, of course, to discourage people. I am not well at this point, myself, nor am I even near well, yet. I may never be! I may end up with ME. But this primer encourages me, when I see that so many medical professionals are seriously, compassionately studying this disease with a desire to alleviate suffering and even perhaps one day well.
I have taken the liberty of highlighting certain words and phrases in the primer that are common to my symptoms and/or Lyme disease.