Reprinted with the kind permission of Cort Johnson and Health Rising.
By Cort Johnson
It started with a failed attempt. Somehow Suzanne Vernon had prevailed upon Armin Alaedini, a PhD from Columbia University look for antibodies that might be attacking the central nervous system in chronic fatigue syndrome (ME/CFS). He found none but then decided to look a little further – and found evidence of an increased antibody response to gluten in a subset of ME/CFS patients. His finding that the degree of the antibody response correlated with symptom severity suggested that this response could be an important player for some people with ME/CFS.
ME/CFS: It Had to Be Different
The really intriguing finding from the study, though, was that further testing suggested that the ME/CFS patients response to gluten was different than seen in celiac disease. Celiac disease is clearly characterized by antibodies to an enzyme called transglutaminase 2 enzyme. One study reported that these antibodies are so prevalent in celiac disease that they exhibit “extraordinar(ily) high …. specificity and sensitivity” for a disease.
They’re not present in ME/CFS, though. Something else is happening. In fact, Alaedini believes the response to gluten he’s seen in ME/CFS may be unique to the disorder. (ME/CFS just HAD to be different (lol)). That perhaps doesn’t surprise patients who have found their disease fall through the cracks again and again but it does set the stage for a possibly exciting (and newsworthy) finding. Given the interest in celiac disease and gluten intolerance a novel finding in ME/CFS would be sure to spark considerable interest.
“We hypothesize that the molecular targets of the antibody response to gluten in ME/CFS are unique, further characterization of which may identify novel biomarkers of the condition.”
Of course it would also mean that current celiac testing protocols are not terribly accurate with regard to people with ME/CFS.
Leaky Gut Syndrome and Inflammation
Alaedini’s findings – which are publication now – set the stage for a grant application to explore not just gluten antibodies but leaky gut syndrome, the translocation of substances to the blood and systemic inflammation in a subset of patients.
The grant approval was another bit of good news but Suzanne Vernon used her contacts to take Alaedini’s research a step further. Shukla’s recent study – which Vernon funded while at The Solve ME/CFS Initiative – suggested that exercise may cause the gut to leak substances into the blood causing inflammation and possibly fatigue and pain. Suzanne Vernon prevailed upon Shukla to contribute his samples to the Alaedini study.
Those samples gives Alaedini access to another set of well-characterized patients and a quick validation of his findings. Plus he’ll be able to see the effects exercise have on them and vice versa. My guess is that the ME/CFS subset with Alaedini’s antibodies will exhibit greater gut leakage and more evidence of inflammation after exercise than other ME/CFS patients.
The Bateman-Horne Center is partnering with Dr. Alaedini to provide samples from ME/CFS patients and controls.
Gut Studies Underway
The gut is getting a lot of attention. We just saw the publication of two Australian studies and Shukla’s was published in December. The NIH Project Reporter page reports three studies have been funded in recent years.
Drs. Lipkin and Hornig are involved in at least two, perhaps three gut studies. One was funded by the Microbiome project, another I believe was funded by the CFI, and there’s’ the recent NIH funded study (which provides for sample collection only.)
Invest in ME is funding a leaky gut/microbiome project. Others are surely underway.
Funding on the Increase
The funding increase appears to have begun. Jennie Spotila documented a 20% increase in funding last year much of which came at the end of the year. Health Rising recently reported on newly funded blood volume enhancement study and now we have this one. It’s not a huge grant; it’s $200,000 R21 grant but it will allow Alaedini to gather more information he can use to get a big multi-million dollar RO1 grant. It was funded by the NIAID.
The study has begun and is expected to wind up late next year.
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.