Mady Hornig Answers Questions on ME/CFS

[Cort]

Check out Mady Hornig's answers to ten questions posed by people with ME/CFS
https://docs.google.com/document/d/1GzZn9MjBWnt9TQqNy0lYZBvU_XWgWMg7DYZAypeDm_A/edit


Question
SH11814

Thanks for doing this AMA and thank you for your work on CFS/ME! Here are my questions:

1) What is the current status of the CFS/ME microbe study?

2) Because the crowd funding study only raised about $220k, how will you and Dr. Ian Lipkin obtain the remainder of the funding necessary to complete the study?

3) CFS/ME expert, Dr. De Meirleir, has found temporary positive effects of fecal transplants on CFS/ME patients. But he believes the transplants are not treating the core pathology and that bad flora regrows in patients over time. Hypothetically, if the microbe study is able to identify a pathogen as the culprit for a majority of CFS/ME patients, why haven’t current treatments such as probiotics, antibiotics, and fecal transplants shown to be more effective managing the disease?

Source: Interview with Dr. De Meirleir -

Answer
Prof_Mady_Hornig

Answers to 1 and 2: We are currently collecting data from a small gut microbiome study in 50 cases and 50 controls; in addition, we have funding applications pending which, if successful, would allow us to expand this analysis, recruiting with our consortium of expert ME/CFS clinicians. Additional monies are essential to ensure that we can have a study of the proper size, and hopefully representing as many of the subsets of ME/CFS (short/long duration, viral/nonviral onset, other factors) in this gut microbiome analysis. But instead of waiting, we are planning to go ahead and examine the oropharyngeal microbiome using the crowdfunding monies already raised ($220K, as you note above). This is also an important body compartment to examine – in addition to the GI tract – not only because many individuals with ME/CFS begin with a sore throat or what is known as cervical lymphadenopathy (swollen glands of the head and neck) but also because we know that the oropharynx is a source of diverse microbes that can influence what metabolites are present in the blood. These metabolites can affect the immune system as well as influence peripheral and central nervous system function.