A recap of my view of ME/CFS

I have been in the ME/CFS world for some 2 decades and have repeatedly recovered. Symptoms each time were different but with some overlap. Lab tests and brain scan confirmed that each time it was ME/CFS.

My training: I am a scientist with a heavy emphasis on modelling systems and interactions (with several doctorate level courses completed). I started with popular belief of the day some 20 years ago and found treatments that worked for me (but the reasoning that treatment worked was slightly wrong IMHO). Those were the Hemex Protocol and the Jadin Protocol.

Same treatments did not work for others. I am curious by nature and tried dozens of models to both explain the symptoms and success/failure of treatment. I was in a very gifted child program and started reading medical journals at 14. I also have a masters in statistics and know how journals can spin-doctor their results. In other words, I can rank the actual value for treatment of each study.

Some eight years ago, I had a relapse due to work stress (working for Amazon in Data Science then). In re-reading all of the ME/CFS literature/ published papers — I came across the 1999 study from Australia reporting Microbiome shifts.

This caused me to try to construct a model for ME/CFS being a microbiome disorder. With a model, you get the ability to predict and thus test if the model appears correct. Looking at what worked for me, I saw that what I did would alter my microbiome. Over the years, more and more studies confirmed that the model appears to be correct.

It’s a simple explanation — and it accounts for different people having different symptoms (because symptoms are likely bacteria grouping specific). Also accounts for different reactions to different things. You are high in ‘gluten-sensitive’ bacteria, you are gluten sensitive, high in histamine producing bacteria — you have histamine issues.

For the flare that I am currently in, I have gone from being off sick for the entire week with a massive list of symptoms to planning to work 6hr/day next week with only a few symptoms left. Remaining symptoms includes my complexion going gray if I go beyond evolving limits (for example, visiting with a friend too long at a coffee shop). This is over a period of five weeks. No antibiotics or prescription medications — just getting my microbiome results and keeping to suggestions for probiotics (Bacillus Clausii, SymbioFlor-2 mainly) and lots of nuts (having a handful of Almonds for breakfast is my current norm).

I have just sent in a new microbiome sample and will likely need to alter things again when the results come in.

Yes, a lot of stuff out there is correct. Things like TH1/TH2 shifts. As a scientist, my training is clear:

  • The simpler the model that explain most of the observations — the more preferred it is.
  • A model should have the ability to predict, generate experiments to try thus be tested. Repeated success in experiments builds confidence.

Not a single other model comes close to explaining the symptoms and responses with ME/CFS. The model also provide a clear accepted explanation for a TH1/TH2 shift.

For me, I will not state that other models are wrong — they are possible. When it comes to probability of being correct, the odds are similar to that of a lottery ticket.

Bottom Line

I do NOT have a protocol for treating ME/CFS, I have a model that gives different suggestions for different people — all of which may have a ME/CFS or other diagnosis.. The treatment model is simple:

  • Get a detailed microbiome report (Thryve or Ubiome) – this is a test that < $100, does not require a MD to order, etc
  • Upload the result to my site,
    http://microbiomeprescription.azurewebsites.net/ and it will compute suggestions from that report.
  • Do as few or as many as you (and ideally your MD) is comfortable with and then repeat.

There are tons of complexity – DNA, regional diet, allergies etc. For most of those complexities there is nothing we can do — because there are no studies.

My pay back? Nothing — except that I have shared your pain. I do not sell your uploads — I make them freely available to anyone (keeping your identity private). I hope for citizen scientists to discover interesting patterns.