So, how do we find a doctor who believes in cfs and can check into some of this for us. This site is amazing information. – From Facebook Post

Ken Lassesen There are only handful of MDs in every jurisdiction unfortunately. In the province of British Columbia (5 million people) there was just ONE until she left. They are now back up to two!!!!

” The estimated prevalence of ME/CFS in our study ranges from 519 to 1,038/100,000, ” [CDC] so we have perhaps 5,000 patients for these MDs, all being time consuming. A General practise MD usually have 1500-2000 patients (most of them healthy and just seen once a year). For ME/CFS, the patients numbers drop down greatly.

My first 2 physicians were a GP/Surgeon who diagnosis (because of that chronic CFS cough) was antibiotic resistant walking pneumonia and put me on rotating antibiotics (the right thing!)… and a family practice physician (who I saw 2 weeks before onset). With her, I had to literally lead her thru the treatment plan (Jadin’s rotating antibiotics and Hemex coagulation therapy) and the literature once she accepted the diagnosis. I even arranged conference calls with leading researchers at that time for her.

#3 ended up being a ND that worked with a Lyme MD (very long wait list to see the MD), there was a lot of negotiation on the treatment plan, but it worked. In my jurisdiction NDs may prescribe antibiotics — that is not true everywhere.

The KEY is getting a physician that is willing to learn and read well summarize information.

#4 physician was a loss… sorry not standard of care… changed to a new physician, ex-Armed Forces MD (thus seen PTSD a lot), she is very interested in the microbiome model. The remission was not due to her, but instead of “physician heal thyself” became it became Artificial Intelligence heal me!.

With that said, many “CFS physicians” can be locked into a certain view of ME/CFS (which can be 20 years stale). A few people with that speciality still believe it’s a psychological condition.

https://www.mefm.bc.ca/for-health-care-providers

My facebook response

The purpose of this blog containing over 1200 documented posts citing existing medical literature was to try to give an alternative path when there is no specialist physician available.

The path premise is to use the data here (or suggestions from the microbiome prescription site – after getting a 16s analysis). 16s analysis DOES NOT REQUIRE A MD’S REQUISITION!!!! They are direct to retail (and expect some MDs to raise their eyebrows!). The cost is often the same as a few bottles of probiotics.

Use this information and present the changes that you are planning to do to your physician and ask if they have any concerns with doing those. Most MD’s will look at it and shrug. If there have any questions on an item— tell them you will bring in the study next time (I link to all of the studies!).

So, technically you are under a MD’s supervision but have 0% dependency on him generating a treatment plan.

For those of you with brain fog, you may wish to get a significant other or friend to sort thru things.

I suggest these links as a starting point:

• Dr. Sarah MyHill, MD leading ME/CFS physician in the UK
  • CFS Checklist – start off and check your treatment regime here
• A Basic Protocol
• The Frugal Recovery Plan

Remember that the greatest cause of back-sliding is forgetting how you were when symptoms improve and you stop taking items because they appear to no longer help. The second cause is absent mindedness.

I was fascinated by your recent posts about eating for your heritage. I have a 23andme done already, so I confirmed I’m roughly 40% British, 40% French/German, and 9% Nordic.

Then I looked at the 4 uBiomes I have on your site. Barley was the main suggestion for all of them. I started eating cooked barley for breakfast and adding in barley/rye only breads, with no wheat. The skinny flat ones that you’ve pictured on your site many times over the years. Shockingly, my brain fog has been improved and my mood is much better. These are two of my worst symptoms and nothing else has touched them for almost a decade.

The problem is that my diarrhea has returned. This was the reason I stopped eating all types of gluten. Going GF and taking lots of digestive enzymes cured me of an awful lifelong struggle with IBS-D. So now I’m worried. I hope it’s just a temporary reaction to a microbiome change. But would love your advice. 

From a reader

The reader did this as a result of my Eating for your heritage microbiome post. I am going to use those uBiomes (with permission from reader) to try to tackle the diarrhea issue using the new Hand picking bacteria to modify

The diarrhea effect may be a herxheimer like effect from the microbiome changing. If this is the case, then roughly it out for a while is suggested (after consulting with a medical professional of course).

The ideal situation would be getting a post-Barley microbiome, to both see the changes and possibly identify what shifted to cause diarrhea to return. For this analysis, I used the latest uBiome sample.

The final bucket of bacteria we came up with is shown below

Suggestions

I left this bucket on my site so the reader can look at the full list.

• Under suggestions, I would skip wheat for the moment 😉
• Under avoid, only a few items are > 0.1, but three items are commonly used in self-treatment.

Bottom Line

We await the reader’s report on what impact these changes make. If it is negative, I will post it regardless. I seek answers which means a willingness to accept learning experiences.

Many bacteria have no known effect. The default approach is to focus on high and low bacteria with a goal to move them towards the commonly seen values using all of the bacteria.

There are various filters available (i.e. use only bacteria associated with some medical conditions), but some people wish to really focus on certain bacteria only. A recent enhancement provides that ability

Where you can pick bacteria

There are three spots that you can pick bacteria on http://microbiomeprescription.com/ . You can select some from each spot; the ones selected will be aggregated.

Suggestions

A lot of the bacteria filtering options are removed because they are not needed. You have already picked the bacteria.

• If you have only a few bacteria (< 20) then Include Parent / Children is recommended

The Video Walkthru

This post is looking at Thyrve Subject Reports vs MicrobiomePrescription reports. Interpretation depends on which studies you use and methodologies. There is no right or wrong answer.

With that said, having received my first Thryve Report, I am curious on how they compare (when there are tough equivalents).

Gut Score

The first item is that Thryve is building their report on “compared to those of the healthy population from the American Gut Project“. Oops we have an apples to crab apples scenario, different equipment, different processes. I am disappointed that they do not have a reference using only their equipment and samples. uBiome attempted to do that (but some employees submitted their pet’s microbiome into the mix!)

Likelihood Analysis

Reviewing this page, I chuckled because they do not give a single likelihood (a probability measure). They simply give your numbers against the average range.

While on MP we have some 17 bacteria associations with where the peak values are.

And on MP we have the following being statistically very significant for bloating:

• Butyricicoccus (genus)
• Faecalibacterium (genus)
• Ruminococcaceae (family)
• Subdoligranulum (genus)

On MP, well, we have many bacteria identified. Lactobacillaceae (family) is there, but it’s child Lactobacillus (genus) is not. Bifidobacterium is not.

Likelihood Analysis Bottom Line

It looks like Thryve’s information is very old and very stale. The information may well be coming from studies that did not use 16s to obtain populations.

They have been entrusted with a warehouse of data from their customers and have not been good stewards of it (I am an old fashion person that grew up with a strong understanding of and importance of stewardship).

Your Gut Bacteria

Thryve attempts to give health benefits and associated diseases. Again, they seem to have old stale information.

Probiotics

For me, they came up with:

• Lactobacillus reuteri
• Lactobacillus rhamnosus
• Lactobacillus casei 
• Bifidobacterium lactis

The MicrobiomePrescript site came up with:

• lactobacillus kefiri (NOT KEFIR)
• lactobacillus gasseri (probiotics)
• lactobacillus casei (probiotics)
• bacillus subtilis natto (probiotics) – My favorite Japanese dessert – Natto!
• mutaflor escherichia coli nissle 1917 (probiotics)
• bifidobacterium bifidum (probiotics)

And near the top of my avoid list

• lactobacillus reuteri (probiotics)

Lactobacillus rhamnosus did not show up.

We both had the same microbiome data. Microbiome Prescription does provide the studies that the suggestions were based on. Thryve does not.

Bottom Line

ThryveAlive works well for providing reports on your microbiome. Given the demonstrated staleness of the data on their site (it costs a lot of money to keep current unless you have someone willing to donate the many hours for the public good).

Most microbiome providers likely fall into the same staleness trap. They put the effort in to get their website up and looking good, then they coast along without keep current because they do not wish to spend the money to keep current (especially true if there is venture capital backing the firm).

NOTE: The data on MicrobiomePrescription is available for Commercial Licensing, see this post.

I thought that it would be good to recap my belief of what the real super foods are. The logic is simple and should be seriously considered.

Our microbiome has evolved over thousands of years. It has become tuned to the available diet in a region. Classic Darwinism. Many alternative medicine types will focus on the dangers of new modern foods. I agree with their core model but they really blew it when it comes to what the older food diet should be! We tend to have two schools –“The Paleolithic diet, Paleo diet, caveman diet, or stone-age diet is a modern fad diet requiring the sole or predominant eating of foods presumed to have been available to humans during the Paleolithic era. “[Wikipedia] and food styles/processing that came into existence after the 1960’s. IMHO, both are very wrong.

Paleolithic ended 12,000 years ago or more. Skipping over twelve millenium of microbiome evolution does not seem rational; it assumes that the microbiome ability to adapt is extremely low and slow. On the other hand, those that attack recent food and diet changes, and jumping back just 60 years assumes an imaginary ‘golden era’ for the gut at a time when there was rapid changes of diet and food.

I wrote about this issue in an earlier post, What is the best diet?

I am a huge fan of Time Team and from it acquire some interesting perspectives. For most of the last two thousand years in Europe, water was not safe to drink. Safe drinking was wine or beer. If you are a northern european, wine was a luxury item… so it became beer.

From one time team episode, I learn that toddlers were given beer once they cease nursing (it was the safest thing to do!). It was not beer as we know it today. The barley malt would be used and reused, with each brewing cycle getting weaker and weaker beer (in terms of alcohol). It was this last cycle of beer that was given to toddlers.

The German Purity Law of 1516, defines what was to be used. It requires that ‘nothing other than barley, hops and water be used’ to produce beer.  No wheat. No Corn. Wheat was actually a luxury grain for most of this time in northern Europe.

What does Barley impacts… lots of bacteria, and I mean LOTS. See this page!

So, for a long time a common child would likely get barley or oats porridge for breakfast, served with weak barley beer. That was my father’s breakfast when he lived with his parents. Sugar was also expensive and a luxury.

Lots of root vegetables – swedes, turnips, and very very later, potatoes (not until after 1800!); in other words, high fiber vegetables.

During my recovery, it was interesting to note how often these specific foods show up as strong suggestions produced by the microbiome AI engine for my microbiome. It almost implied that going apostate from the food of my ancestors was the cause of ME/CFS.

We have lost touch with our microbiome heritage. Salad in winter is unnatural for northern Europeans. Season cycles of food is what our microbiome evolved to handle. In today’s world, we eat the same — year in and year out. IMHO, that is also unnatural.

Bottom line — give some serious thought to what your microbiome’s inheritance is going back many generations. All of us have a high percentage of the common worker in us, what did they eat?