Friday, July 29, 2016

New Study: Gut Bacteria Provides Clues to ME/CFS

The Hype
By now, you have probably heard something about the recent study out of Cornell that was published a month ago which looked at gut bacteria and inflammatory markers in the stool and blood of ME/CFS patients compared to healthy controls. This study was even covered in many mainstream media outlets. I had about five different healthy friends all forward me articles about it! So, why did it take me so long to write about it here?

Well, in short, I was annoyed by the headlines and press accompanying this study. While any mainstream media coverage of real scientific studies of our illness is great, and I am thrilled that my friends thought of me, it was yet another ME/CFS study that was publicized with all the sensationalism of tabloid news. This headline from Science Daily's article on the study was typical:

Chronic Fatigue Syndrome is in Your Gut, Not in Your Head

I can't fault Science Daily because that headline came directly from Cornell's press release. Seriously? Are we still in the "Breaking News: CFS is not all in your head" phase of press coverage?? Come on, people. We've had decades of serious scientific studies showing loads of abnormalities and dysfunction in the immune systems, endocrine systems, and autonomic nervous systems of people with ME/CFS. Why are even academic PR people still acting like its news that ME/CFS has real physiological causes?

The rest of the article and press release were just as bad. The very first paragraph (again, copied directly from Cornell's press release) is: "Physicians have been mystified by CFS...There are no known triggers..."

No known triggers?? Where have these researchers been for the past 30 years? Lots and lots of studies have identified infectious triggers for ME/CFS, and it is well known that most cases of it start that way - there have been studies on mono (Epstein-Barr Virus), Parvovirus B-19, Ross River Virus, and more. The famous Dubbo study first documented this connection, and ME/CFS is even sometimes referred to as Post-Viral Syndrome. In fact, there have even been studies previously on a common gut virus and ME/CFS, identifying enteroviruses (frequent causes of stomach viruses) as a trigger or cause for ME/CFS. The references for that article list many of the other infectious trigger studies previously conducted.

Shouldn't researchers be conducting a thorough literature study of previous studies related to their work before they embark on a new study? Shouldn't research facilities' PR people know what came before their study? Sorry for ranting, but this really makes me angry. If every researcher treats his or her new study like it's the first legitimate study ever done on ME/CFS, then we will never make any progress. OK, rant over.

The Real News
The actual study is interesting and does add to the body of knowledge on ME/CFS, once you strip away the National Inquirer-type headlines. They studied stool and blood samples of about 40 of Dr. Levine's ME/CFS patients and compared the results with about 40 healthy controls. The differences were enough that the researchers could correctly identify 83% of the ME/CFS patients - that's getting close to a usable, non-invasive diagnostic tool. They found there were more markers of inflammation in the blood (no surprise there) and fewer anti-inflammatory bacterial species in the gut of the ME/CFS patients (guess we better keep up those probiotics!). None of this is surprising, since most of us have GI symptoms as a part of ME/CFS, and it is said that about 80% of the immune system is in the GI tract. What's interesting here are the specifics of their work and its potential use in diagnosing ME/CFS - we all know how badly we need some diagnostic tools. You can see the full scientific article here and if you scroll past the early paragraphs of Cornell's press release, the second half of it provides a brief (and understandable) summary of the findings.

So, this is all good news for those of us with ME/CFS. I just wish we could get past the sensationalist headlines and that researchers would look at the whole body of research that's been done instead of just their own study.

Had you heard about this study yet? What was your reaction?


The Median_of Infinity said...

CFS is an autonmic nervous system disorder. Among other things, the autonmic nervous system controls functioning of your gut... When gut functioning is altered, gut microbes alter.. Explains why gut bacteria are different in those with cfs. I know this from my own research , and from my own healing from chronic fatigue syndrome... This is not a gut issue.. It is malfunctioning of the autonomic nervous system

At Home on the Rock... said...

Yes, I did hear about the study from many different sources and the sensationalized titles left me really wondering. By the way many in the ME/CFS community were responding, it seemed they felt it was good. Yet, "Chronic Fatigue Syndrome is in your gut not in your head" seemed way off base and extremely trivialized to me. Thanks for explaining it.

Erika said...

I suspect it's an unthinking PR rep (or several) who's to blame for the ignorant-of-past-research words, rather than the actual researchers. Eager for a soundbite rather than facts.

I found the timing quite amusing as, with my GP's support, I'm doing a protocol of antibiotics and then probiotics in order to get my out of whack gut bacteria closer to 'normal'.

A lot of good work being done in Australia on this topic by Dr Henry Butt (eg

Sue Jackson said...

Yes, that's exactly how I felt! The potential benefits of the study didn't match the crazy headlines.

Sue Jackson said...

I sure hope you are right & the researchers did their background work!

Hope your new treatment helps you! Definitely everyone with ME/CFS should be on good, strong probiotics.

Which bacteria did you test positive for? Make sure you start the probiotics well ahead of the antibiotics (just take them at least 2 hours apart) to prevent the abx causing yeast overgrowth which is a very common problem for us.

Good luck!