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
I have been a “sufferer” of Fybromyalgia for a few years. Luckily I have one of those rare GPs who encourage complimentary medicine and don’t rely on the Gospel of Textbook diagnosis. For years I was told that “men don’t get fybromyalgia – There’s no such thing as ……- You’re imagining it” until I saw the GP I now insist on seeing on every visit.
Since diagnosis I have changed my diet, medication and lifestyle. All to great effect. I have never suffered from ‘stress’, I have always been very laid back and calm. I was brought up in a family that doesn’t believe in stress!
My advice to anyone who is unsure, find a good GP who will listen to you, take you seriously and treat you as a person instead of a statistic. Also, I would suggest checking the Fybromyalgia Associations website for some excellent information and guidance.
Nice one Andrew, Thanks, Prof
Professor Keith,
I wrote to you earlier today about my husband being diagnosed with Pick’s Disease and purchased a 2-year subscription. I have personally been diagnosed Fibromyalgia, which complicates my ability to help my husband.
Do you have any suggestions for what vitamins or other things I can do to better manage my pain?
Thank you,
Debbie McLarnan
Debbie,
I answered your query at length about Pick’s disease and wrote you I had posted the answer as a separate blog.
I can’t go in giving “consultations” via a blog. It’s not fair to ask 🙂
Keith
I think that I have had Chronic Fatigue Syndrome since June 1974 when I was 49 years old. I am now 77 years old. It has never been diagnosed because I was so badly treated by doctors and I am not believed by any doctor I have ever visited. It changed my life and I am still angry about losing my energy and unable to study since I think that it caused cognitive failure at times of very bad fatigue. I even married my husband (now deceased) because I was in real trouble and did not know if I could work again. He promised to look after me which he did not. Sent me straight to work and I never had the chance to recover. It also made me very sensitive to medical drugs as well as some amino acids in supplement form, not in food. I eat a very natural diet, lots of fruit and fresh vegetables, a little lean meat, sprouts from seeds, no milk, but use some natural yoghurt, green tea, chia seeds in my oatmeal and yoghurt. However, I still do not sleep well, suffer some anxiety as well as panic attacks and I hate doctors!!!!!!!!!!!!!!
You don’t hate me, I hope, Maria! There are some good doctors.
I have suffered from illness for over 10 years. It all started around menopause at age 47.
I had severe vertigo, dizziness, anxiety and weakness. I was diagnosed with Meniere’s disease by a neuro-otologist. Of course they tried to put me on meds but i just can’t tolerate the side effects. So i went the natural route. I tried all the diets from raw food to cooked vegan, I did feel better and some issues cleared up but still had issues with sleep, anxiety, dizziness, vision problems but just tried to ignore it all and worked long hours in a stressful job. Then last year I began to cough and it did not go away. I also started having night sweats which I though was menopause resurfacing. I then got very sick and could not get out of bed. The cough was bad and my chest felt constricted. The fatigue was horrible and I was losing weight, I was thin and did not need to lose any weight. I went to a GP and after blood tests it was discovered I had valley fever and bronchitis. Valley fever is a fungal disease that attacks the lungs and can infect the blood. I live in the destert where this disease is endemic. so they wanted to put me on diflucan which I refused because of the side effects. I did take z pack and it helped the bronchial infection. B ut for the VF i did natural treatments like UV blood irridiation, herbs, etc. I was tested again and valley fever test was now normal.. the titers were down. BUT I still did not feel completely well and the chronic fatigue set in big time. I subsequently got laid off and over the past year I have been largely unproductive with lingering cough at times, fatigue and feeling unwell on some days.
I found out about your book through kevin Giani webinar. I bought the book Diet Wise and it rang true to me. I plan to start the elimination diet as soon as I recover from the recent dental surgery I just had to remove an old root canal tooth that was infected. I have to be on antibiotics for ten days and diflucan for six days but as soon as this time is over I will start the diet…. I was wondering. CAN you HAVE BEANS on the elimination diet? I really don’t like to eat meat every day and beans have protein. there is no mention of beans at all so am not sure. things like lentils, chick peas, pinto, black. Please let me know..
thank you and thank you for your wonderful work and your great book!