lassesen 1:32 am on March 12, 2015  

Chronic Fatigue Syndrome 101

A reader asked:

Out of curiosity, what tests can be taken for chronic fatigue? Because of it running in my family, and because of how exhausted I’ve become from recent events, I’m wondering if I’m in early stages of development of it as well. I’ve been lucky so far, but the right combo of triggers could certainly cause it to occur as well. I really need to find a way to get some extended time off, because I’m not gonna last long otherwise.

I will address the following key questions:

  • Are there any accepted-by-most MDs tests for Chronic Fatigue Syndrome?
  • What are the best tests available in your opinion?
  • What is the probable cause of Chronic Fatigue Syndrome?
  • How does onset happen?
  • What can be done to defend against full out CFS

Accepted Tests for CFS?

None — CFS is officially a diagnosis of having a set of symptoms with no known cause (and by inference, no test abnormality that would explain it).  While it is similar around the world, each country has a slightly different medical take on it. The unfortunate part is “A CFS diagnosis requires that the patient has been fatigued for 6 months or more and has 4 of the 8 symptoms for CFS for 6 months or more.“ – you have to be down with it for at least  6 months — by which time it may be well established and harder to prevent from becoming a permanent state.

Best Tests to Confirm CFS or indicating Increased Risk

There are three tests that I have found works as indicator of CFS status. In theory, they may be early predictors. Two require a MD to order, one does not require a MD. The best one (IMHO) does not require a MD.

  • SPECT Scan — not a MRI, but a SPECT. It will show major abnormalities in 80% of CFS patients. For myself, the radiologist read it as Alzheimer’s Disease (“Early” because I was too young). It was very similar to the results of SPECT scan done by Dr. Daniel Amen (seen on PBS) on a teenager with CFS that I am familiar with.
  • Abnormally high Vitamin 1,25 D levels (this is not the usual vitamin D lab). My readings were so high, that the lab repeated the test because they thought there must be a mistake. As I recovered, the level dropped back to normal levels. IMHO, an elevated level is a indicator of high risk. Article
  • Shifts of Microbiome — there is a very major shift with CFS. As the condition develop, the microbiome is expected to alter more and more towards the very distinct pattern seen with CFS. – This does NOT require a MD, you can buy the kit for $100 (in fact, I have a few kits on the shelf as a reserve if there is a concern).

If you are concerned — first step get the Microbiome testing done ASAP … it takes a few weeks to get the results. It is likely the most sensitive because the shift of microbiome is slow and progressive.

Probable Cause

Having been thru CFS three times and reading almost every summary on PubMed, my model of CFS meets the classic scientific criteria of the simplest model that explains all of the observations.

  • CFS (and likely many autoimmune conditions) is a shift of gut bacteria (microbiome) caused by bacteria, virus or chemicals that do not return to healthy-normal in a reasonable time.

The bacteria, virus or chemical does not directly cause CFS, it is a catalyst or trigger to the self-maintaining shift. The shifted bacteria population pumps inflammation signals and other chemicals into the body causing a host of symptoms. Gut bacteria is actually inherited and is very connected with your DNA.  Your DNA favors certain bacteria mixtures. My own experience is that some symptoms seems specific to certain species. Neem took away one group of symptoms. Ashwanganda removed other symptoms.

How does onset happens

The mechanism is some events that alters the chemical signals passed to the gut bacteria. Some species are encouraged and others are discouraged. Stress alters the chemicals flowing in the body and is often a contributing factor. A bacteria or virus can also trigger it. Recent studies suggests that the immune response to an infection alters the chemical signals so that certain chemicals are produced in greater quantities to fight the infection. The problem is that the chemical signals ends up establishing a feed back loop that results in those chemical signals not being turned off. In some cases, light can trigger an increase of these chemical signals, for example UV can trigger lupus [WebMd] and been reported to trigger other autoimmune conditions.

How to slow or reverse onset

Working from the model above and literature (plus personal experience) – the key is reduce the bad bacteria and increase the good ones.  Conceptually this is easy. In reality, it’s complex because we know so little on which ones are bad or good — or how to change them either way. My best suggestions(short list) is:

  • Probiotics:
  • Herbs and Spices (available in bulk at most East-Indian stores)
    • Neem
    • Tulsi — start drinking lots of Tulsi tea!
    • Ashwanganda
    • More items
  • Supplements:
    • Vitamin D3 — 20,000 IU/day
    • Magnesium supplements
    • B-12
  • Antibiotics
    • Only Tetracyclines are advised – they have been successfully used with CFS in the past.

I do not know how the microbiome shifts during onset, so if you suspect you may be developing CFS and get microbiome testing with abnormal results — please forward them to me.