ME or Myalgic Encephalomyelitis

ME or Myalgic Encephalomyelitis, aka CFS, Chronic Fatigue Syndrome (and maybe, “It’s all in your head…”)

ME is the acronym for Myalgic Encephalomyelitis, a mouthful for anyone, never mind those who have the disease or perhaps one of its precursors, Lyme disease.

Like many who have discovered they have Lyme disease, I was diagnosed with Chronic Fatigue Syndrome (CFS) by an Infectious Disease specialist. (I originally wrote much of this article in 2012.  Little has changed.)

The specialist ignored most 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’s CFS, am I still getting sicker?  Why did antibiotics bring a great improvement after one month, and why, after being on antibiotics for six months, did I begin to get sick again within two months of going off them?”

Royal Free Hospital in London

His quick reply about antibiotics was that it was a placebo effect, or in other words, it’s all in my mind,  because my mind is telling me the antibiotics are working, I feel better on them, and when I go off, my mind tells me I’m 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 antibiotics really was.  He should see just how healthy it feels to be on antibiotics for a while!  Not!!

Had he paid a little more attention, he would have discovered that I noticed no improvement for the first month of antibiotics, 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 antibiotics… 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 antibiotics, my health began to deteriorate rapidly, and I ended up sicker than at the beginning.

(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 antibiotic 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!”

In 2012, a primer for medical practitioners was sent to me from a university professor, 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.  This is not intended in any way to deny that someone has long term or chronic Lyme Disease, as I do, but as yet another tool in the quest for truth and accurate diagnosis.

(Right here, I want to apologize to any medical practitioner reading this, if you think I am trying to bash doctors in any way.  I have nothing but the highest respect for doctors.  However, I am also realistic and know that no one can know everything, including doctors.  Nor do I expect doctors to know everything.  They must do their best to develop the knowledge necessary to give the best possible healthcare in their own area.  The problem is not doctors and other medical practitioners.  The problem is with the information they are being given.)

In reading this booklet, 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 not 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.  It has been suggested that patients diagnosed with ME should be checked for any markers related to a Lyme Disease infection, if only to help in ME research.

This may explain the mystery of why some long term Lyme patients, when treated with antibiotics seem to 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 (2017), 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.

At this point, antibiotics continue to be a part of my life.  If I go off them, I still have no more than two months before I begin once again to slide down the “rabbit hole” into the overwhelming fog, fatigue and pain of Lyme Disease.  When I go back on antibiotics, I improve dramatically.  I do not know what I will do if we exhaust all available antibiotic choices.  Hopefully medical science will have by then discovered a cure.

I have taken the liberty of highlighting certain words and phrases in the primer that are common to my symptoms and/or Lyme disease.

Click for Primer PDF

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