I have done a few prior post on this, listed below. At a high level, this does not mean that ME/CFS is a DNA disease instead of a microbiome dysfunction, rather it paints a richer picture.

The microbiome and your DNA interact with each other. Your microbiome is actually much richer/more complex than your DNA. There is evidence that the microbiome and DNA cooperate with each other. So, ME/CFS is a “perfect storm” scenario. You need the right DNA mutations to coincide with the right microbiome dysfunction. To the best of my knowledge, no studies have been done combining the two 😦 .

I focus on the microbiome because it is much more actionable then DNA. You can change the microbiome, i.e. pull your ship caught in the perfect storm into a sheltered harbor…. The ship may still have its defect (DNA) issues, but without the storm beating on it, it won’t sink.

Past Posts

• 2013 – Is CFS in your DNA?
• DNA: Irritable Bowel Syndrome’s SNPs
• Fibromyalgia DNA SNP’s
• A Serotonin SNP in CFS
• Methylation Testing via 23andMe
• Case Study on Using DNA: Multiple Chemical Sensitivity

Extracts from Recent Studies

• MtDNA population variation in Myalgic encephalomyelitis/Chronic fatigue syndrome in two populations: a study of mildly deleterious variants [2019]
  • Role of mitochondrial DNA damage and dysfunction in veterans with Gulf War Illness. [2017]
  • Mitochondrial dysfunction in a family with psychosis and chronic fatigue syndrome. [2017]
  • Association of mitochondrial DNA variants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptoms.[2016]
  • Is chronic fatigue syndrome truly associated with haplogroups or mtDNA single nucleotide polymorphisms? [2016]
  • Mitochondrial DNA variants correlate with symptoms in myalgic encephalomyelitis/chronic fatigue syndrome. [2016]
• Genetic Predisposition for Immune System, Hormone, and Metabolic Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Pilot Study. [2019]
• Single nucleotide polymorphisms and genotypes of transient receptor potential ion channel and acetylcholine receptor genes from isolated B lymphocytes in myalgic encephalomyelitis/chronic fatigue syndrome patients. [2016]
• A targeted genome association study examining transient receptor potential ion channels, acetylcholine receptors, and adrenergic receptors in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. [2016]
• Natural killer cells and single nucleotide polymorphisms of specific ion channels and receptor genes in myalgic encephalomyelitis/chronic fatigue syndrome. [2016]
• Genome-wide association analysis identifies genetic variations in subjects with myalgic encephalomyelitis/chronic fatigue syndrome. [2016]
• Maintenance of Chronic Fatigue Syndrome (CFS) in Young CFS Patients Is Associated with the 5-HTTLPR and SNP rs25531 A > G Genotype. [2015]
• Pathway-focused genetic evaluation of immune and inflammation related genes with chronic fatigue syndrome. [2015]
• Use of single-nucleotide polymorphisms (SNPs) to distinguish gene expression subtypes of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). [2014]
• A possible genetic association with chronic fatigue in primary Sjögren’s syndrome: a candidate gene study. [2014]
• Meta analysis of Chronic Fatigue Syndrome through integration of clinical, gene expression, SNP and proteomic data. [2011]
• Polymorphisms of adrenergic cardiovascular control genes are associated with adolescent chronic fatigue syndrome. [2011]
• Convergent genomic studies identify association of GRIK2 and NPAS2 with chronic fatigue syndrome. [2011]
• A functional polymorphism in the disrupted-in schizophrenia 1 gene is associated with chronic fatigue syndrome. [2010]
• Combinations of single nucleotide polymorphisms in neuroendocrine effector and receptor genes predict chronic fatigue syndrome. [2006]

Someone care to extract a summary?

In the past, I have walked thru each article and produced a checklist of SNPs cited with the matching 23andMe item (if they reports it) and even recall creating a template on a 3rd party analysis site. I do not have the time for this at present.

If a reader care to do this and write up a guest post, I would love it!

In time, I would love to add these SNPs to the microbiome site to try to detect which dna-bacteria-symptoms combinations are significant. It will be another step into being uber-specific on why you have certain symptoms and thus have specific treatment based on your DNA, microbiome and symptoms.

I have added maternal haplotypes to the symptoms list now — if you know yours, please associate it with your sample. The types entered are the common one from this page.

I just pushed out an update to http://microbiomeprescription.com/ that may help you understand what various prescription, over the counter and some supplements may be doing to your microbiome.

Select any of the links highlighted below

The next page will show some choices at the top:

Compare Impact

This is intended to allow you to better choice between alternatives – for example Aspirin versus  Paracetamol (acetaminophen). I am sure people will find more uses for it.

The process is simple, search for each item, and put a check beside it. Select the Compare Impact radio button and then click the submit button below it.
Hint: Pick Complete List, and then do Ctrl-F to search for each drug.

This will take you to a page listing the impact side by side. In this case we see that their impacts are similar, but different on a few items. At the family level there are a few differences

Compensate

This is intended when you are prescribed drugs to treat some conditions and wish to reduce the impact on the microbiome by counteracting the drug or drugs impact on the microbiome.

For this example, we pick lovastatin (a statin), Famotidine (Pepcid AC).

We may wish to first see how much impact they have together (do they reinforce or counteract each other)

Just pressing back, and changing radio buttons, and submit produces suggestions.

The suggestions are done by creating a virtual microbiome report based on the above shifts and running that through our AI engine.

The suggestion page is the new format with the long lists hidden until you ask to see them.

The Take or Avoid list is defaulted to 100 items (which is one reason that I toggle visibility). Remember – none of these items are guaranteed to work, nor do you need to take all of them. Each item increases your odds…

The avoid list values are a lot higher, and thus you may wish by reducing any of these items that you are taking.

As always, these are suggestions that must be reviewed by a knowledgeable medical professional before doing.

Today I had a messenger session with someone who noted that Diplorickettsia was in his results. Rickettsia infection treatment plan is the historic basis of Ceclie Jadin’s protocol that she learnt from the Pasteur Institute for Tropical Medicine which has been successful for some ME/CFS patients.

What is Diplorickettsia genus?

” Doubled rickettsia, for the phenotypic resemblance of the isolated strain with rickettsiae shown by Gimenez staining A novel obligate intracellular gamma-proteobacterium associated with ixodid ticks, Diplorickettsia massiliensis” [Src]

”  The disease (Lyme neuroborreliosis) is caused by multiple genospecies of Borrelia burgdorferi sensu lato bacteria transmitted by ixodid (hard) ticks, ” [2019]

Checking uploads from Thryve, there were two individuals that had this evidence of a tick bite that may have transferred bacteria that has taken up residency. I have put these people in contact with other (with permission).

Legionella and Coxiella, both of which include notable pathogens. For example, Q fever is caused by Coxiella burnetii and Legionella pneumophila causes Legionnaires’ disease^[2][3] and Pontiac fever.^[4][5][6]

Wikipedia

Looking at other Thryve uploads, I found one more person with Coxiella. For Legionella, I found 6 additional people — including myself!

For myself, it was present in nose samples (ubiome) in 2017 (highest count, almost 3%) and 2018 (not in relapse) and then appear in my first Thryve gut sample of 2019-11-10. This echos back to several past post of the nasal cavity and mouth being reserves for various bacteria that may help maintain various medical conditions. For ME/CFS, that has been detected: Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function. [Sep 2018].

Rickettsia

As cited above, this was the experience used by Jadin. I found some 20+ individuals, including myself with the same pattern, in nose prior and in my last gut sample from Thryve.

Borrelia (Lyme)

I found this reported in 3 peoples microbiome from XenoGene, a european provider.

This does not mean that you have a pathogenic version. It indicates that you have a cousin to a pathogenic version (whose disease role may not be known).

I have added both of these to Health reports.. as illustrated below

If you discover any similar ‘interest’ bacteria, please let me know and I will update the risk items. Thanks!

For those wishing more information on 16s Microbiome analysis, see this listing of providers.

• Thryve reports on two
• Xenogene reports on the Lyme bacteria

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.