Most of you folks reading are mere “kids” when it comes to the history of chronic fatigue syndrome. Many “experts” writing today and selling their “knowledge” have only been on the block a few years and have no idea what a struggle we pioneers had to establish that there even was such a condition.
It started being reported in the late 60s and then more so in the 1970s. We called it “tension-fatigue” syndrome back then, since that’s what we were seeing in the patient.
By the early 80s, we leaders had noticed that it often followed a viral disease and started using the term “post-viral fatigue syndrome”.
Coxsackie B virus (“Bornholm disease”) was a chief suspect in the early 80s; it can cause shattering fatigue and all over aches and pains. But I worked with the local hospital and lab and had a series of blood samples from my patients tested for coxsackie and nothing significant came up. It was never published because the chief pathologist and I were convinced it was a waste of time.
Epstein-Barr came under suspicion and, true to the American way, CEBV (chronic Epstein-Barr virus) was born, even with no evidence for it; and people started self-diagnosing CEBV. Same thing happened with Lymes’s disease. There is a Lyme disease but 90% of cases are self-diagnosed and NOT due to Borrelia bugdorferi at all (the cause of Lyme Disease).
In Britain, in the early 80s, we came up with what I think is the best title to date: myalgic-encephalomyelitis (ME), which means “painful muscles and brain/neuro inflammation. The American equivalent, fibromyalgia, is a silly and generic term which just means pains in the fibers and muscles. It’s most common cause by far is rheumatism and not CNS inflammation.
All through the 80s and 90s patients who had this condition were sneered and derided by doctors, who told sufferers their symptoms were imaginary and sent them to psychiatrists, since they were obviously sad, inadequate people who invented a disease to gain attention. They were really just “depressed” (true! This was all in the medical literature of the day).
Well, I’m pleased to say I successfully treated 10,000 of cases, using the “food allergy, environmental chemical sensitivity, heavy metal detox, nutrition, clear Candida, etc.” route!
But these successes meant nothing to the quacks who were proclaiming that the patients wanted to be ill and were malingering.
A big breakthrough came in the late 80s (I forget the exact year), when the World Health Organization (WHO) decided to recognize ME as an official disease.
But that didn’t stop the petulant tirades from orthodox doctors, who continued to abuse patients and attack me for “exploiting weak-minded, gullible people”.
The trouble all along was that there was no test for ME /fibromyalgia /whatever /whatever… So the condition remained debatable, even to this day, it has its detractors.
The first meaningful tests came from PET scans in the 1990s, showing that brain areas in ME/fibromyalgia sufferers were different to normal brain scans. There really was a physical condition. That lighted the fuel.
Now we have moved on a step. New research, which is why I am writing this, has shown that cerebro-spinal fluid in these patients is significantly altered from normal. In the study, which was led by Dr. Steven E. Schutzer, of the University of Medicine and Dentistry of New Jersey, and Richard D. Smith, of Pacific Northwest National Laboratory, investigators analyzed spinal fluid from 43 patients with chronic fatigue syndrome (CFS), 25 people who had been diagnosed with and treated for Lyme disease, but did not completely recover (neurologic post-treatment Lyme disease, or nPTLS), and 11 healthy people.
As the authors reported, until now, there have been no known biomarkers to distinguish between Lyme disease and CFS, nor strong evidence that the central nervous system was involved in the two conditions.
Well, what they found was that 738 proteins present only in the spinal fluid of CFS patients and 692 proteins found only in the spinal fluid of nPTLS patients. Not one or two proteins, notice, but HUNDREDS of abnormal proteins!
The next step is to establish clear testing protocols and establish diagnostic lab work for these unfortunate patients.
Mind you, it doesn’t help with treatment. There is no such disease as “protein excess” nor a specific treatment for it!
The sufferer still has to go down the slow, laborious route of food allergy identification, chemical clean up, heavy metal detox, a proper nutrition program and, especially, clearing up deadly yeasts and Candida…
As for the “depression”, wouldn’t you be depressed, if you were sick for years and doctors not only couldn’t help you, but insisted you were faking it?
SOURCE: PLoS One, news release, Feb. 23, 2011