Chronic Fatigue Syndrome and the Scandal of Medical Ignorance

I've had this blasted syndrome since I was diagnosed as a pre-teen. I've got about 18 years of fighting for a working balance under my belt now, and no balance has yet been found. All the vitamins, all the supplements, all the tweaked dosage levels of them, all the dietary alterations, and all the varied exercise in the world hasn't make a bleeping lick of difference. It all works for the very short-term, and then it's back to square one.

It well could be that the problem is in the engines (mitochondria) rather than the fuel & upkeep (food & exercise) This is one of the most compelling explanations for CFS I've seen yet, even if partially responsible:

Mitochondrial Dysfunction, Post-Exertional Malaise and CFS/ME

There can be many causes of CFS, this I am certain.

Depression can cause it to, I know from first hand experience.

originally posted by: earthblaze
I had to change GP due to being confronted with an unsympathetic attitude and "there is nothing wrong with you".

Yep ... been there, done that.

I have profound autoimmune fatigue. Some days getting energy to get the body moving from bed to the bathroom and back is a chore. (those are days the autoimmune is in flair). The plaquinel helps me. My Sjogrens manifests like M.S. .. neurological issues and all.

Lots of times people are labeled 'chronic fatigue' when in fact they have autoimmune issues.

I'm sure you've already done this but get your LUPUS bloodwork done, as well as your sjogrens (SSA and SSB), and your ANA checked. Do the whole autoimmune blood work up.

a reply to: Stormdancer777

After I had medicines cause a lot of damage to my organs, I was weak and had no desire to do anything. When I first took the multimineral it made me stronger, almost as strong as I was before five years of being messed up on the meds. My problem was sulfites building up too high I suppose, the body increases sulfites to fight disease. Allergy to Sulfa drugs is all over in my family. Sulfa drugs destroy the pterins that form molydopterins plus other pterins. This brings up the bodies ability to kill some microbes. Now, if you have too much sulfites, because they do not turn back to sulfates, it can cause the body to destroy ourselves. Sulfites also can destroy our own cells if they get too high. Since there are about four or more enzymes made from molybdenum, increasing the detox of any of these can cause problems with the other. So if you eat foods containing nitrosamines or xanthene, which coffee contains, you need more molybdenum in your diet. Now nitrites change to nitrates and are further broken down in the body with an enzyme and are excreted. If they don't break down they can't get excreted and these nitrogen compounds can slow aptopsis of damaged cells, leading to mutated cells living and reproducing. This can turn into a tumor or even cancer.

So, now eating too much sulfites can lead to not enough molybdenum to detox the nitrates. Remember, nitrogen compounds are created when we exercise, the muscle breaks down releasing a product, this increases our heartrate and dialates the blood vessels so our blood pressure doesn't go through the roof. Too much molybdenum can cancel out this effect, and can lead to not having the heart beat rise or dialation of blood vessels. So I say to take a small dose and increase foods moderately to make up for differences in the diet at different times. If you eat a brat and hot dog, make sure to eat something as a companion food to help. Broccoli and cauliflower have ample supplies, and the goiterogenic properties can help to relax you at the party. Beer is produced from whole grain barley and hopps and because of this it has molybdenum in it as these grains and oats have this mineral. So a beer with a brat works fine.

Companion foods is the clue. Now if you do not eat much sulfur food or foods containing nitrogen, there is also another problem that can happen and people get weak. Sulfur foods are good for the blood and detoxing but many people avoid them possibly because they can't properly cancel out the sulfites. Now if you get sick, just reduce the molybdenum. this will increase the sulfites in the body and help to fight the bug. Also acetylaldehyde dehyrogenase uses molybdenum, so if you drink you need more molybdenum or the sulfites molybdenum is used to detox the alcohol. But remember, beer does contain molybdenum, but they also stop the beer from getting stronger with sulfites. So the next day, you have a hangover from the acetylaldehyde or from the sulfites or both. I hated hangovers, you cannot become an alcoholic if you get hangovers every time you drink. It took me years but I did learn not to drink more than two beers at a time, and I don't even feel like drinking much at all anymore. Alcohol also thins the blood as sulfur does and stimulates the liver to detox.

I keep trying to look at the good properties of food and try to neutralize the bad. I love BBQ food, I don't want to be eating spinach, cows don't even eat spinach.

I've been pondering over some new information I learned about certain goiterogens. This will require me to read another hundred articles about the exact metabolic processes. Knowing exactly how the types of goiterogens work and cause thyroid issues is my next big challenge, they know but they don't tell us, I need to look at specialized research articles that I can find here and hopefully in Europe. I need to get a bigger computer so I can load translators for many different languages on it. I like German research, but often it is in German.

I hope I didn't confuse too many people

I'm extremely sorry to hear about your struggles. As a somewhat recent chronic Lyme disease survivor I can relate. Based upon my own experiences and the rampant medical ignorance that allowed my disease to run rough-shod over me for over 4yrs I'm outraged by what I hear. I tested negative repeatedly for Lyme and was then told I had some 'idiopathic arthritic condition' and was placed on prednisone (an immune suppressant) for 4yrs. This, of course, allowed the organisms free-reign while my symptoms were moderated. Thinking on Lyme has taken a 180deg turn in even the last few years. I am willing to bet that a very high percentage of people diagnosed with chronic fatigue or fibromyalgia are actually suffering from chronic Lyme --- a disease the IDSA (Infectious Diseases Society of America) until very recently refused to recognize as even existing. Despite an increasing epidemic of Lyme and its co-infections, clinicians are still mostly ignorant about how the disease manifests and the unreliability of tests. My experience has taught me --- despite my medical background --- to NOT trust doctors. If I had not taken control of my own care, done my own research and chosen clinicians that KNEW the disease, I'd still be significantly debilitated and probably well on my way to a heart transplant or worse.

a reply to: an0nThinker

Hi. The micronutrient testing sounds interesting. My B12 was checked which was normal. I might look into this. My cortisol was very low and the endocrinologist started me on steroids pending a short synacthen test to rule out Addisons. She also diagnosed non alcoholic steatohepatitis (NASH). There are no guidelines for treating this in the UK although they recommend getting your BMI below 25. I read that they are using high dose vitamin A in a US controlled study so started taking that today along with milk thistle and artichoke.

a reply to: Stormdancer777

Hi. Thanks for all those links. I have had a look at them and it does look encouraging. PET scans are extremely expensive unfortunately so I can't see them being used routinely in the NHS in the UK.

a reply to: nugget1

It is the same with CSF. Psychological and emotional factors can exacerbate symptoms immensely.

a reply to: madmac5150

Low-dose naltrexone (LDN) is used off label to treat MS. Some people with CFS have found it beneficial. There is a study being undertaken in the UK using Rituximab for CSF (it is a monoclonal antibody used to treat certain cancers). They did a small study in Norway which showed Rituximab caused remission in CFS patients.

a reply to: earthblaze
Most doctors don't really understand nutrition. Specialized genetics tests are even rarer. Often they can point you in the right direction. Testing in the US is meant for handing out pills not actually fixing your problem. My mom for example had a nutrient test where she came short on vitamin D. In the US she would have been diagnosed with depression and then fibromyalgia.

Hi CFS no-fans.

My wife used to be VERY indisposed/sick because of fibromyalgia !

In trying to improve things,
she had her mercury tooth repairs replaced by the organic white stuff,
we eat almost 100% organic, and we
do not eat stuff from the Pacific,
do not eat stuff from USA,
do not eat stuff from China,
do not eat or use stuff using fluor,
do not eat stuff using Aspartame, Nutrasweet, Splanda and similars,
do not eat stuff using GMO,OGM,
do not eat stuff using MSG,GMS,
do not eat stuff using colors,
do not eat in junk food's restos type. . .

Eating almost no bad chemicals must help !

Now, she is almost 100% OK !!

Blue skies.

a reply to: C-JEAN

I am going to second this. Artificial sweeteners, GM food, MSG, Mercury fillings, artificial colors must be cut from the diet. Also look at adrenal fatigue.

a reply to: InverseLookingGlass
Hi. I know gut translocation (leaky gut) has been suggested as a factor in CFS. I have read several articles on it. Some people think normal gut flora have a protective effect on the gut lining and every time we have antibiotics we kill these off and lose this protective integrity.

Several months ago I blitzed my gut with a strong dose of fluconazole to kill any candida. I followed this with a month of taking high potency probiotics daily. Sadly it did nothing for my symptoms.

a reply to: pl3bscheese

Hey thanks for these links. I have heard some mention of mitochondrial damage before and will read this links with interest.

a reply to: rickymouse

Hey thanks for this info. I take Drs Best Multiple Vitamin and Minerals
I also take Flaxseed oil and Drs best NAC Detox Regulators

The endocrinologist started me on 3000 IU Vitamin D3 and suggested magnesium bath salts for pain. I have not tried this yet as trying to source it.

I am starting a paleo diet from next week to see if it has an effect on my symptoms,

a reply to: ThinkingCap

Post Viral Fatigue, especially when due to Epstein Barr Virus, can lead to chronic fatigue syndrome. Some physicians believe they are the same thing. I got the painful lymph glands in my neck, armpits and groin initially. I know many people have waited 1-2 years to get a diagnosis. I think I have been lucky in that respect. I am also grateful as I know of people who are lot worse than me symptom wise. They also have young children and many are the main wage earner. I count myself lucky in that respect.

a reply to: Nyiah

Hi thanks for the link. Your comments are very similar to a blog entry I read several days ago. The lady is called Jocelyn and I read her blog regularly as she has a down to earth, tongue in cheek, perspective of her illness which I can relate to. She has just reached 10 years of having severe CFS. Link is

No Poster Girl

There's hope that the doctors belittling patients as "it's all in your head" may have to eat crow soon. Just last month there were two hopeful diagnostic stories. Researchers in Utah found certain gene expressions in CFS that may lead to a bloodtest. And in Australia, researchers have found biomarkers which may also lead to accurate tests.

Came across these when I was reading about new tests coming available for 5 different types of depression.

Queensland researchers hope...

Utah - CFS gene expression

a reply to: FlyersFan
Thanks for the advice. I had a full autoimmune screen done and it all came back negative.

a reply to: jtma508

I have heard many stories of people being initially diagnosed with CFS or Fibro and they actually had Lyme's Disease. Like you I took control, did my own research, took on board a lot of advice I was given on CFS forums and found the right specialist which I had to pay for. I know for a fact that I would not be in the place I am in now if I had left it to my GP.