Unfortunately, it appears that it's too late now, but I should be a member of this working group. Hopefully, someone can still review this information and act on it.
I've been on disability for CFS for most of my life. In that time, I've been learning & experimenting, trying to get my health back. When I learned about the gut microbiome, it seemed like the obvious "missing piece of the puzzle".
This 10-minute video covers some of my history, motivations, goals, the microbiome, FMT, etc.:
https://www.youtube.com/watch?v=6wi52tLjCps
I created
https://humanmicrobiome.info/ as an educational resource to attempt to combat the widespread ignorance and misinformation on this subject.
There is additional information on the forum, such as this list of research on the microbiome, FMT, and COVID:
https://forum.humanmicrobiome.info/threads/the-gut-microbiome-covid-19-and-long-covid-collection-of-studies.348/
My history of advocacy is documented here:
https://forum.humanmicrobiome.info/forums/fecal-microbiota-transplant-fmt/?prefix_id=71
After failing to make any progress by reaching out to the patient community, researchers, etc., I took things into my own hands with
https://www.humanmicrobes.org.
Most people (
including the patient community, researchers, and advocacy groups) seem extremely poorly informed on the microbiome and FMT (fecal microbiota transplants). The working group's report reflects this ignorance. There is only one small subsection on the microbiome, under the "immune system" section, and only a single mention of FMT, unrelated to its value as an existing treatment.
The "research priorities" section is "more of the same", and thus very unpromising. I would go as far as to say
I find it appalling. A stunning display of ignorance. If all the members of this working group are so ignorant on something this major, which I'm well-informed on, I expect they are similarly ignorant on a wide variety of other topics that I'm not as well-informed on. It is ignorant, misguided, and unethical to focus so much on mechanisms and diagnostics instead of an existing treatment.
Every single thing listed in that document is regulated by the gut microbiome. You're wasting your time (and our lives) trying to figure out why thousands of streams are poisoned by individually studying each stream instead of following them upstream to the source.
I gave the following example to some other CFS researchers who announced their intent to do this as well. An appropriate analogy is spending decades trying to figure out the mechanisms of anesthesia rather than testing its safety and efficacy in order to make it widely available. Anesthesia is one of the many things we use without knowing the mechanism.
Here is a summary of the FMT situation:
https://forum.humanmicrobiome.info/threads/the-fda-and-fmt-regulation-part-2-jul-2024-humanmicrobes-org-i-met-wit.520/#post-1370. Every single person on the working group should be familiar with this, and should be helping me. As should the entire patient and research community for every chronic disease.
"Appalling and dystopian" that I've been left to do this alone fails to describe the severity of the situation.
• There's a cure for numerous diseases.
• I should be able to access this cure.
• I should not be responsible for making this cure available.
• I will never be able to access it unless someone in the federal government does something.
I've been living in my car in DC since November, trying to get someone in Congress to solve the issue. Will you continue to ignore it and leave me to do everything on my own?
Best regards,
Michael Harrop
