New Scientist’s issue of Nov 4th, 2016 had a commentary by Ester Crawley, below is my response that I sent to the New Scientist. Commentary is here.
Ester Crawley’s desire to recruit for online cognitive behavioural therapy is commendable; unfortunately, it is contributing to a deepening division in the CFS/ME community. CFS/ME has been a condition that keeps enticing specialists to hope that they have found an application for their expertise, with funding for this activity.
The root cause of CFS/ME and many co-morbid conditions was identified in Australia in 1998 by a team at the University of Newcastle [ http://www.ahmf.org/98access/98butt3.html ]. The root cause is a dramatic shift of bacterial population in the gut. Dynamic evidence of the correctness of this cause had been demonstrated by the immediate remission of CFS/ME by fecal transplants which has been reported more than once in this journal. An older treatment for CFS using a Rickettsia antibiotic protocol had a significant remission rate but the long term use of antibiotics has ceased being politically correct.
I recently examined the uBiome results of a dozen CFS patients and found that five Families had a median value below 20% of the reference range ( Bifodobacteriaceae, Enterbacteriaceae, Lactobacillceae, Peptococcaceae, Streptococcaceae). At the Genus level we found 16 of 120 Genus had a median value below 20%.
Standard medical practice for overgrowth of a bacteria is the use of antibiotics. For undergrowth there are very few probiotics. Most commercial probiotics are selected with the undesirable characteristics of not taking up residence, non-producers of toxins against other species and very susceptible to all antibiotics. “Here today, definitely gone tomorrow!”
In the US, there is an additional challenge – if a probiotic is demonstrated effective against a disease, it immediately becomes regulated. A probiotic that makes no claims is unregulated. Mutaflor (E.Coli Nissle1917) is not sold in the US despite being used in Europe for almost 100 years. This is unfortunate because most CFS/ME patients have very low or no E.Coli in their microbiome.
I am a citizen scientist with an M.Sc.(Operations Research) who has had CFS/ME three times over 40 years and recovered each time. The model of a microbiome dysfunction fits all of the studies but presents major treatment challenges. Bacteria strains are co-inherited with DNA which present challenges of rejection by the host, similar to organ transplants and blood transfusions. This rejection is often seen with CFS/ME patients about 6-9 months after a fecal transplant, when symptoms return.
(ex-Amazon, ex-Microsoft, currently at Starbucks!)