A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors
New chronic fatigue syndrome research initiative includes gut dysbiosis & leaky gut syndrome
I was delighted to learn this week of funding for research into the link between chronic fatigue syndrome, disturbed gut flora and leaky gut syndrome.
The CFIDS association of America launched their 'Accelerate CFS Research Initiative' - the largest chronic fatigue syndrome (ME/CFS) research initiative to date.
After a sustained year long fundraising campaign the association allocated over $600,000 of an estimated $1 million kitty to six research groups in the US and Canada.
This is fantastic news for anyone suffering from this life altering illness and their families. ME/CFS has for too long been shunned by both medical researchers and sources of funding including governments, charitable bodies, and pharmaceutical/biotech firms. This despite the fact that ME/CFS is estimated to affect around 2% of the population in countries including the US, Canada and UK.
People including myself who have been affected by this highly debilitating illness suffer greatly and are provided with little or no help from the medical profession. It is time for ME/CFS to be taken seriously and it seems the CFIDS Association of America has made big steps first by raising substantial funds and secondly by attracting new researchers to the study of the illness.
It is now time governments stepped up with more funding as ME/CFS continues to become an illness considered a worthwhile and challenging subject of study for researchers. If not only for us patients then also to save huge sums of money required to pay state benefits to the millions of us who are (or have been) unable to work!
The research groups the Accelerate CFS Research Initiative will initially fund will look at various different aspects of the illness in an attempt to discover biomarkers which can be used to develop diagnostic tests and treaments for the condition. The CFIDS Association says the researchers will share data amongst themselves and with other researchers around the world to establish a ME/CFS research network. All great news!
The areas being studied by the research groups include pain sensitivity, changes following development of ME/CFS after viral infection, increased levels of brain lactate, and decreased blood flow to the brain.
What most interests me however is the grant awarded to Sanjay Shukla, PhD, of Marshfield Clinic Research Foundation, who will use metagenomics to determine if the ratio of good to bad intestinal bacteria in CFS patients is altered, and whether this imbalance in gut bacteria may be responsible for triggering CFS symptoms. This is an area that is receiving increasing attention and abnormalities of gut bacteria have been found in a number of chronic illnesses including diabetes, Crohn's disease and ulcerative colitis.
Shukla will also look at whether there is increased intestinal permeability (leaky gut syndrome) in ME/CFS patients which he theorises would allow bacteria and toxins to be absorbed causing chronic immune activation and inflammation throughout the body.
I feel this research to be important as I believe these factors have played a huge role in the decline of my own health.
My ME/CFS was initially triggered by a viral infection but as a baby I had very bad colic and as a child I was plagued by digestive upsets. A few years after being diagnosed with ME/CFS things began to get worse and I developed chronic constipation and symptoms such as rectal itching which might suggest disturbances in gut bacteria.
Eventually by the end of my teens after stubbornly ignoring the fact I was ill and eating a typical teenage junk food diet and going out drinking with friends it became all too apparent that I had what I can only refer to as a 'toxic gut'. I constantly felt groggy and toxic as if I was being poisoned without anything entering my body. This got worse and I noticed that after meals there were a whole host of gurgling noises from my abdomen and a pronounced bubbling sensation. This was accompanied by feelings of intoxication...exactly as you would get after drinking alcohol. This is often referred to as 'autointoxication syndrome'
In the end I was getting very serious alcoholic hangovers daily, especially after eating carbohydrate rich meals. And by hangovers I mean throbbing headache, nausea, dehydration, chills, sweating...as bad as it gets.
Diagnostic testing at labs including Genova Diagnostics (then Great Smokies Diagnostic Laboratory) and Biolab (UK) found low levels of beneficial bacteria, increased amounts of less desirable bacteria, increased intestinal permeability, abnormally high blood alcohol levels after eating, and liver enzyme patterns associated with chronic consumption of alcohol or paracetamol (neither of which I had consumed for a long time at that point).
It is my belief that Candida (a fungus) as well as bacteria is a major cause of the gut fermentation I have experienced (due to amounts of ethanol produced in my gut) but this remains a more controversial subject. One reason for the controversy is the lack of a definitive test for overgrowth of fungal organisms in the gut. If Dr. Shukla can make progress in this area and have it accepted it would be a major step forward.
As to whether gut disturbances are a cause or a result of ME/CFS is a question for the future. Personally I feel that I inherited a poor gut ecosystem from my mother who had always suffered from irritable bowel syndrome (IBS) and was only able to breast feed me for 2 weeks (breast milk contains beneficial bacteria and substances such as lactoferrin and special sugars which promote their growth.) Repeated doses of antibiotics for ear and throat infections through childhood may have worsened the situation and lowered my immune system so that the viral infection that hit me at 11 was able to cause havoc and initiate the disease process of ME/CFS. On the other hand, the really obvious signs of disturbed gut function only came a few years after my ME/CFS diagnosis. It's a real chicken and egg question!
I await the results of Dr. Shukla's work with great anticipation and those of the other research groups as well.
I'd also like to give my appreciation to the CFIDS Association of America for their amazing fundraising efforts and excellent grant recipient choices. Of course I can't forget all the ME/CFS patients, family members, and doctors who contributed to the fundraising effort out of their own pockets. Together we can beat this!