ME/CFS – a nice medical statement for work

I have been on long term disability for ME/CFS, had to deal with school boards for children with ME/CFS and often seen ad-hoc reports created by well meaning MDs. These situations are often legal situations and not medical treatment scenarios — I have seen reports missing the mark — often, making it more difficult to get needed and appropriate support.

Personally I really like page 4: “11.l To what degree can your patient tolerate work stress?”

The 4 page form below was shared by a friend, and I am reposting it here because I believe many people would benefit from it. I would love to see it translated into other languages (if you translate it — please send it to me as a word document and I will include it on my site).

Link to a Word version of the above.

Spam, spam, spam – Gupta!

I got this on my facebook page:



Given how long this program been running, I would expect studies and results on PubMed — there are ZERO — opps wrong, see bottom.

Their site banners: “Gupta Program Brain Retraining™ Is A Powerful Revolutionary New Program For Chronic Conditions.”

  • ah, brain retraining — these conditions are all in your head!
  • Success stories — two key phrases: Placebo Effect, Lack of external verification of testimonies,

Testimonies are meaningless without a control study (ideally published on PubMed — where there is nothing). Of 1000 people who signed off, with MD verified medical condition X, what was the result? For many published studies, I see 15% of control group improved (your testimony!!) and 28% of those on treatment.

Bottom Line

Lack of peer-reviewed published control studies – means a big thumb down for the scientist writing here..

Addendum

A reader found some studies were on pubmed which I could not filter from studies done by other Guptas!.

 “a novel hypothesis for chronic fatigue syndrome (CFS) is proposed….
followed by the patient’s experience of the illness. ”

Gupta, A. (2002). Unconscious amygdalar fear conditioning in a subset of chronic fatigue syndrome patients. Medical Hypotheses 59(6), 727–735 [2002]

Note that this is proposing a hypothesis based on a single patient’s experience.

Of the 44 patients randomly assigned who completed baseline assessments, 21 patients completed the study (14 in the standard care group and 7 in the study group). Median age was 48 years (range, 27-56 years), and female subjects comprised 91% of the group. Analyses demonstrated statistically significant improvements in scores for physical health, energy, pain, symptom distress, and fatigue in patients who received the amygdala retraining compared with standard care.

Toussaint et al. (2012).A mind-body technique for symptoms related to fibromyalgia and chronic fatigue. Explore (NY). 2012 Mar-Apr;8(2):92-8. doi: 10.1016/j.explore.2011.12.003.

So, 7 of 44 completed the study. All of the measures were subjective self reporting (thus very prone to placebo effect)

I suffered from ME (chronic fatigue syndrome) for three years. I spent years researching this mysterious illness to understand the causes, focusing on the brain neurology of conditioned traumas in the amygdala. I cured myself of the condition and wrote a medical hypothesis as to the cause of ME which was published in 2002. …

Limitations No control group or placebo group was used, and future studies would need to incorporate this. No standardised tools were used, and randomised collection was not employed. Researcher bias, and the effects of researcher/ practitioner enthusiasm, were significant confounding factors, as were participants’ possible use of concurrent therapies. Sample bias was significant in that those completing the programme may have shown more motivation and commitment.

Can amygdala retraining techniques improve the wellbeing of patients with chronic fatigue syndrome – A clinical audit of subjective outcomes in a small sample. Journal of holistic healthcare, 7(2).


Revisit of Salt And C treatment plan from a decade ago

A decade ago the “Salt and C” protocol was very popular with a few being helped by it.  A reader sent me a study link, so it may be time to update my 2013 post on Salt And C. I have been watching ME/CFS treatment trends (? Fads? ) for almost 20 years — especially pre-facebook when eGroups.com CFSFMExperimental (Est. 1997!) was the place for cutting edge theories and discussion and over 3000 posts in a month.

Salt and C was taking mega-dosages of both.

Sodium Chloride

The article that the reader shared was “High-salt diet throws microbiome out of whack” [Nov 2017]. It you have a healthy microbiome, you don’t want to do it./… but if you have an unhealthy one… it may be worth tossing the dice with it!

You will find details on what bacteria salt is known to impact on my microbiome site.

The actual study is “Salt-responsive gut commensal modulates TH17 axis and disease [Nov 15, 2017]” ” In line with these findings, a moderate high-salt challenge in a pilot study in humans reduced intestinal survival of Lactobacillus spp., increased TH17 cells and increased blood pressure. Our results connect high salt intake to the gut–immune axis and highlight the gut microbiome as a potential therapeutic target to counteract salt-sensitive conditions.”

Sodium intake is associated with changes in circulating metabolites, including gut microbial, tryptophan, plant component, and γ-glutamyl amino acid-related metabolites.” [2017]

“Recently it was shown that high salt conditions promote pathogenic T-cell responses and aggravate autoimmunity in an animal model of MS, suggesting that high dietary salt intake might promote central nervous system (CNS) autoimmunity. ” [2016]

“Within the gastrointestinal tract, increased exposure to dietary salt causes an increased inflammatory milieu (25). Dietary changes may also influence both the function and composition of the gut microbiome, which in turn could impact both innate and adaptive immunity through inducing increases in inflammatory cells while causing loss of Treg function (5556).” [2015]

Vitamin C

As above, we have details on it’s bacteria impact on my microbiome site.

  • Nutritional Correlates of Human Oral Microbiome [2017]
    • “vitamin C were rather consistently correlated with alpha (within subjects) diversity indexes in both richness (Chao and number of operational taxonomic units) and diversity (whole-tree and Shannon). “
    • ” Vitamin C and other vitamins with correlated intakes—for example, B vitamins and vitamin E—exhibited positive correlations with fusobacteria class, its family Leptotrichiaceae, and a clostridia family Lachnospiraceae.”
    •  Vitamin C intake had more pronounced effects on the presence of Lepto-trichiaceae and Lachnospiraceae, with estimated effect of 5.94
  • “Intakes of beta-carotene equivalents, vitamin C, vitamin E, niacin equivalents and riboflavin correlated negatively with Bacteroides and/or its corresponding higher level taxa.” [2017]

A recent study found a lot of complexity on Vitamin C impact.

An external file that holds a picture, illustration, etc.
Object name is BST-46-1147-g0001.jpg

Vitamin C and immune cell function in inflammation and cancer [2018]

Bottom Line

We know that high salt intake causes hypertension (high blood pressure) which for people with Postural orthostatic tachycardia syndrome ( POTS) can be a good thing (in theory). We see above that it also alters the microbiome. — unfortunately we only know that it decreases lactobacillus.

There is no sufficient information to recommend or issue cautions about salt for specific microbiome.

If your bacteroides level is high, you may wish to increase Vitamin C

In general, it was unsuccessful BUT some folks may try to revive it (it’s been long enough that people are not aware of the past results).

How to take Bacillus Coagulans

FULL DISCLOSURE: I am employed by Starbucks.

Last week at my work place weekly coffee tasting, we did not have coffee. We had juice from Evolution Fresh (https://www.evolutionfresh.com/ )  sold by Starbucks, Target and other stores. The presenter mentioned it contains probiotics — and I immediately asked for the specific strain that it contains! After some emails, and the presenter beating the bushes (perhaps it was her fellow workers that she was beating!), I was informed that it was Bacillus coagulans GBI-30, 6086 (No information on CFU per bottle).

Off to Pub Med Land

Bottom Line

For myself, when I buy a fruit juice, I tend to have it by itself. This is not the best use of this juice with probiotics. With this fruit juice, you should also have protein (Starbucks also sells Protein Boxes) and plant proteins (which are already in the juice). This probiotics is also available in capsules:

Fluoride, the microbiome and Coagulation

A CFS friend had a dental cleaning two weeks ago — she knows that she reacts to fluoride (it appears to trigger coagulation in her) so the fluoride treatment was skipped but it appears that there was fluoride in what was used for cleaning her teeth.  She has been out-of-it for 2 weeks now, sleeping excessively.  A quick check of PubMed revealed that there was some new material so a summary would be a good to share.

PubMed Literature

  • “a number of countries including Sweden, The Netherlands, Germany, and Switzerland stopped fluoridating their water supplies due to concerns about safety and effectiveness []. Currently, only about 5% of the world’s population—350 million people—(including 200 million Americans) consume artificially fluoridated water globally. Only eight countries—Malaysia, Australia, USA, New Zealand, Singapore, and Ireland, more than 50% of the water supply artificially fluoridate. Over the past two decades many communities in Canada, the USA, Australia, and New Zealand have stopped fluoridating their water supplies and in Israel the Minister for Health announced in April 2013 the end of mandatory water fluoridation” [2014]
    • “The only demonstrated positive impact of fluoride on human health is its contribution to prevention of dental caries (infection of teeth enamel). “
    • “While early studies of water fluoridation suggested substantial benefits in terms of reduced levels of dental caries, these results have always been contested. “
    • ” No fluoride deficiency disease has ever been documented for humans.”
    • “In the USA, a study in Iowa found that 90% of 3-month-olds consumed over their recommended upper limits”
    • “This review identified a number of potential and established adverse effects including cognitive impairment, hypothyroidism, dental and skeletal fluorosis, enzyme and electrolyte derangement, and cancer [].’
    • ” found strong indications that fluoride may adversely affect cognitive development in children []….approximately equivalent to seven IQ points  “
    • ” 47% of children living in a New Delhi neighbourhood with average water fluoride level of 4.37 ppm have evidence of clinical hypothyroidism attributable to fluoride. “
    • “Iodine-deficient children ingesting fluoridated water have been found to demonstrate intellectual deficits even at water fluoride levels of 0.9 ppm [].”
    • “Fluoride is a known enzyme disruptor… There are 66 enzymes which are affected by fluoride ingestion, including P450 oxidases, “
    • “fluoride can interact with a wide range of enzyme-mediated cellular processes and genes modulated by fluoride including those related to the stress response, metabolic enzymes, the cell cycle, cell-cell communications, and signal transduction [].”
  • Fluoride: a risk factor for inflammatory bowel disease? [2016]
  • “One of the major effects of fluoride on oral bacteria is a reduction in acid tolerance, and presumably also in cariogenicity….Even the fluoride-resistant enzyme of isolated membranes of Lactobacillus casei ATCC 4646 could be rendered fluoride-sensitive through addition of Al3+. ” [1990]
  • “Spore suspensions of …. was significantly inhibited by sodium fluoride.” [1954]
  • “It was found that, compared with those in the control group, the counts of Lactobacillus spp. and Bifidobacterium spp. were markedly decreased (P < 0.01 or P < 0.05), whereas the counts of Escherichia coli and Enterococcus spp. were significantly increased (P < 0.01 or P < 0.05) in the high fluorine groups II and III. ” [2016]
  • fluoride-associated changes in oral community composition resulted in depletion of gene families involved in central carbon metabolism and energy harvest (2-oxoglutarate ferredoxin oxidoreductase, succinate dehydrogenase, and the glyoxylate cycle).”[2017]
    • “This suggests that fluoride treatment does not have a large effect on the global structure of the oral or gut microbiota in mice. However, it remained possible that fluoride treatment could selectively alter the abundance of individual microbial taxa and functions in these environments.”
    • “Curiously, unclassified species of Bacteroidales and Burkholderia were significantly depleted only in the low-fluoride group compared to the control group, possibly due to more extreme depletion of other taxa in the high-fluoride group. A similar mechanism would explain the expansion of another obligate anaerobe (an unclassified Ruminobacter species) in the high-fluoride group relative to the control group”

Coagulation Dimension

Above we see that some bacteria families are altered by fluoride. How do bacteria and coagulation tie together?

Bottom Line

Consumption of water enriched by fluoride may significantly contribute to existing health issues. If you live in the US, tap water may be a risk — but worst, bottle water produced from a municipal source (which may be fluoridated) is not require to disclose this — they are only require to disclose if they add fluoride as part of their processing.


https://www.cdc.gov/fluoridation/faqs/bottled_water.htm

Water may be spring sourced, go through municipal processing with the addition of fluoride and then bottled. No label is required.

What are safe bottled waters — simple, those originating in countries where fluoride is banned. Our family preference is Gerolsteiner – available at Trader Joe. Not only is the source Germany, it is in glass and not plastic.

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.

Treating myalgic encephalomyelitis with little information

Myalgic encephalomyelitis is a complex disease, likely the most complex known by several magnitudes. The symptom list is massive. Looking for clustering at the patient level finds a vast array of sensitivities that makes one plan for everyone impossible, but even a dozen plans are improbable to be sufficient. Typically, A helps one, A hurts another and A does nothing (except reduce the pocket book) for a third person.

A reader wrote with a concern for the person she is caring for.

“she’s doing so badly, she’s so weak, I must change something. I think I’ll keep her on triphala (she’s still herxing) but slowly bring back some of her natural antibiotics which I’d taken her off completely – berberine, turmeric rosehip tea, neem, star anise etc and judge what’s right by if she’s still herxing. Would you do that? “

I want to answer it by describing major subsets of issues that ME patients may have – and possible strategies for each:

  • Histamine Issues
  • Salicylates issues
  • Thick blood issues
  • D-Lactic acid issues
  • Gluten issues – which can occur with supplement fillers

The Gotchas – doing the wrong thing…

I’ve been involved with the ME community for about 20 years and seen a lot of fads, trends and a few successes. Too often the same concept gets tried, retried and retried again in the community with the same result — no result.

The following are from interactions that I have had with various people over these years

Histamines

Many probiotics are histamine producers. Taking an random probiotic may make things worst. For more reading:


https://histaminentzug.de/die-10-besten-probiotika-bei-histaminintoleranz/

Real example: a reader asked why with my flare that I was taking Enterogermina instead of MegaSporeBiotic which contains the same species and several more. The reason was simple: my ubiome results showed an 50% increase of histamine producing bacteria, so I wanted to avoid adding any more histamine producers.

Histamine issue may be due to over population of:

  • Proteus mirabilis, [ref]
  • Streptococcus pneumoniae [ref]
  • Klebsiella pneumoniae (also produces lactic acid) [ref]

This of course suggests reducing them — with anise and other herbs (see ref above for each)

Salicylates issues

See Salicylate sensitivity for some background. This can mean that something like aspirin that could assist with thick blood, may make things worst. This applies to many herbs and spices that are effective against some bacteria or blood thinning.

This deselects a lot of items and tend to increase the importance of probiotics, minerals and non-herbal supplements.

Thick Blood Issues

First, thick blood issues can be tricky because there can be many different coagulation mechanism involved. Doing too much of the wrong thing can result in easy bleeding and bruising (I have gone there). Coagulation: Thick Blood Supplements for CFS. Possible actions can be split into three types:

  • Prescription: Heparin (sublingual — under the tongue, seems to work as well as injection for ME)
  • Salicylate free supplements (not plant based):
  • Salicylate risk
    • Aspirin
    • Grape Seed Extract
    • Turmeric
    • Cucumin
    • Boswelia Gum
    • Bromelain

D-Lactic acid issues

This is usually impacted by probiotics as well as dairy consumption. Lactic acid is not produced only by lactobacillus, but other species.

Overgrowth of  Lactobacillus, Leuconostoc, Pediococcus, Lactococcus and Streptococcus, Carnobacterium, Enterococcus, Oenococcus, Tetragenococcus, Vagococcus, and Weisella. [src] can contribute.

What to do?

The key factor is not to create fog on what is happening by ingesting the kitchen’ supplement cabinet at one time. I would start by assuming histamine issues, lactic acid issues and salicylates issues. This leads to two sets of things to test for response (ideally one at a time for 2 weeks):

What to try next? Hopefully, you have uBiome results by the time you are done above and can then use the microbiome prescription site to see suggestions. I would divide the items suggested into similar groups and do things from one group at a time. You may not be aware of some of the issues until you isolate yourself from the triggers for a week or two (i.e. eliminate all salicylates for two week – do you feel better).

Remember, every person’s path to remission and relief is likely unique.