Health Rising’s Recent Recovery/Recovering Series
Health Rising’s recent Recovery/Recovering Series continues with – you guessed it – something entirely different. We’ve had vaccine recoveries, drug (rapamycin) recoveries, neuroplasticity + recoveries, cerebral spinal fluid patch recoveries, mast cell + recoveries, and now we have our first – but hopefully not last – artificial intelligence-aided recovery, which, interestingly enough, took a different thrust at ME/CFS than we’ve seen before. Check out Efthymios’s story below.
My ME/CFS Remission Story
A data scientist, Efthymios used artificial intelligence to chart his pathway to recovery.
Prior to 1999, my health was stable, although I would get more easily fatigued compared to people of my age. Whenever I was on holiday, for example, I was the only one who would spend significantly more time resting – especially if I was staying in the sun for too long – or being constantly active.
My first overt ME/CFS symptoms began in 1999 (after stopping a medication called Finasteride due to side effects) and advanced slowly. By 2004, Ι had full-blown ME/CFS.
My symptoms included fatigue after exertion, tinnitus, urticaria (rashes), early morning insomnia, poor memory, difficulty finding words, brain fog, dysphagia (difficulty swallowing), secondary hypogonadism (reduced sex hormone production), anorgasmia (inability to achieve orgasm), orthostatic intolerance (symptoms while standing), numbness in extremities, sudden sensorineural hearing loss (3 events), anxiety, depression, mood swings, light and sound sensitivity.
Test results indicated I was also in a pre-diabetic state. I was found to be hypothyroid, with mildly elevated TSH levels, and having increased homocysteine (Homozygous MTHFR mutation). At times, I would find only mildly elevated liver enzymes.
I was slowly deteriorating month by month and over time, began to have suicidal thoughts. Despair, though, turned to a commitment to find what was going on.
Advanced Data Analytics Results in Stabilization
My background is in Computer Science with an MSc in Knowledge Extraction. I’ve been working since 2000 in Data Mining, and later in machine learning and natural language processing consulting. Still able to do mental work, I turned to advanced data analytics to develop software in order to research my own personal case and ME/CFS in general.
Realizing that my symptoms changed in severity from day to day, I decided to keep a log for a total of 434 days to try and identify common factors (symptoms, food taken, supplements, etc.) associated with good vs. bad days using machine learning.
After my first results in Nov. 2012 identified which factors (in terms of supplements used, food taken, weather patterns, and life events) were helpful or not, I followed personalized DOs and DONTs. (Note that these may not apply to others).
With regard to foods, for instance, the machine learning analysis suggested that a fat-free diet, whey protein, iron-rich, and foods containing gluten were problematic while zinc-rich and cholesterol-rich foods were helpful. Weather changes were also clearly affecting me and any abrupt weather changes (e.g. increase in humidity, drop in temperature) would increase my symptoms.
Another finding was that substances that were negatively affecting the cytochrome P450 system – which is related to the liver – such as bioperine and grapefruit would greatly induce my symptoms.
The results suggested that the following supplements might be helpful: Any supplement providing methyl groups such as methylcobalamin, MSM, 5-methyltetrahydrofolate, and Zinc.
Incorporating these changes of DOs and DON’Ts, and limiting significantly my alcohol intake, resulted in putting a stop to my continued worsening of symptoms and set the basis for my improvement.
Artificial Intelligence Provides Breakthrough
Efthymios’s use of machine learning and AI tools to find central factors in ME/CFS and related diseases allowed him to take his health to the next level.
In 2013, I began developing a software framework in order to better understand ME/CFS and related syndromes as a whole, with a first working version being implemented by the end of 2014. (See upcoming artificial intelligence blog for more).
Around March 2015, machine learning methods identified the following research targets: endoplasmic reticulum stress, oxidative stress, bile acid and phospholipid metabolism disruption, methylation, glucuronidation, sulfation, and detoxification pathways among others.
These results provided a much clearer number of interventions to aim at. They focused on ameliorated endoplasmic reticulum and oxidative stress, support for methylation and detoxification phases, and amelioration of the inflammatory response.
They included:
- TUDCA – I started with 250 mg and gradually upped the dose to 750 mg, providing 250 mg every 8 hours in order to ameliorate endoplasmic reticulum stress (and subsequent unfolded protein response events) and also support liver function. TUDCA, a supplement and bile acid derivative, is another “version” of a medication called Ursodeoxycholic acid aka ursodiol: the liver produces bile acids which are metabolized in the intestines into TUDCA. These bile acids digest fat-soluble vitamins, break down food and cholesterol, help fight off pathogens, and regulate our metabolism. In an energy-intensive process, most of the bile in our body ends up getting reused. (More on bile acids and the liver in the next blog on Efthymios’s work on artificial intelligence and ME/CFS.)
- Methylcobalamin (B-12) (1000 mcg) – to support methylation)
- Methylfolate (200 mcg) – to support methylation)
- Taurine (500 mg) – to help in conjugation of bile acids via CYP7A1, regulate NMDA / glutamate excitotoxicity, and also upregulate PGC1-α (for mitochondrial biogenesis)
- Vitamin C (250 mg) and N-acetyl cysteine (100 mg – I couldn’t tolerate more) – antioxidants to minimize oxidative stress
- Ubiquinol (100 mg) – provides intermediate metabolites for energy production
- Zinc (25mg) – which has been low whenever I tested it
- Selenium (50 mcg) – (combat oxidative stress)
- Vitamin K2 (As MenaQ -100 mcg) – (combat oxidative stress)
- Choline (500 mg) and important cofactors such as FMN (Flavin Mononucleotide) (10 mg) (combat oxidative stress)
- D-Limonene (250 mg) twice a week to induce P450 (liver support and detox) (Caution: this may affect drug metabolism)
Two of Efthymios’s top supplements (TUCDA and taurine) support liver and bile production. (The bile ducts leading from the liver are in yellow.)
Recovery
My recovery took a lot of trial and error – mainly in order to find which antioxidants were working – and happened gradually. I found that for my specific recovery, TUDCA, choline, taurine, and managing oxidative stress were particularly important.
THE GIST
- His use of machine learning to understand his personal patterns regarding diet, activity, supplements, symptoms, etc. allowed him to stabilize his health.
- The analysis suggested, for instance, that a fat-free diet, whey protein, and iron-rich foods and foods containing gluten were problematic while zinc-rich and cholesterol-rich foods were helpful. Methylcobalamin, MSM, 5-methyltetrahydrofolate, and zinc were helpful supplements.
- In 2014, another machine learning analysis that incorporated factors from a range of ME/CFS and ME/CFS-like diseases broadened his approach. Now he was looking for broad disease-impacting factors that could conceivably apply to everyone with ME/CFS.
- The analysis identified the following research targets: endoplasmic reticulum stress, oxidative stress, bile acid and phospholipid metabolism disruption, methylation, glucuronidation, sulfation, and detoxification pathways.
- Efthymios’s new protocol which focused, in large part, on reducing liver stress included a supplement called TUDCA, as well as choline, taurine, and antioxidants to reduce oxidative stress. (See the blog for a complete list).
- He also avoided any food with soy, glutamate, palm oil, gluten, sugar, simple carbohydrates as well as whey protein, and did not have a high protein intake.
- He started feeling somewhat better in the first month and by 6-7 months he was fully recovered.
- He even went the extra mile – purposefully crashing himself and then adding the protocol back in bit by bit to see which parts of it were most effective.
- Next up – a blog digs into Efthymios’s use of artificial intelligence and its surprising ability to uncover factors that have only recently shown up in ME/CFS research.
They include the supplements I mentioned (which I now cycle: TUDCA – use for 3 consecutive months and stop for 1 month. I check levels of folate, B12, and trace minerals, and when I reach a high level, I also stop for up to 1 month).
Also, the avoidance of any food with soy, glutamate, palm oil, gluten, sugar, simple carbohydrates as well as whey protein or increased protein intake. Loading on protein would always lead to a crash as well. (I hypothesized that if endoplasmic reticulum stress is a possible mechanism, too much protein may be putting an increased demand for protein folding and protein processing.)
Any attempt to introduce many of the things I mentioned that I found to have a negative effect on me will eventually lead to symptoms and a crash, but my tolerance has increased over the years which means that I can now eat something containing – for example – monosodium glutamate for a number of days without crashing.
In order to find what has worked for me, I purposely crashed numerous times in order to make sure that I was able to get into #MECFS and then get out of it. Many times I did not have the will to experience once again the numerous symptoms. But I had to make sure. This was done in order to see specific aspects of my regimen (e.g. do I need to constantly supply with methyl groups or not? Is TUDCA necessary?) and how much I am able to push myself. When a crash happens, I can get over it very quickly, within a couple of days at most.
(In 2017, an additional type of analysis named “Network Analysis” also identified research “hotspots” and further confirmed several of the findings from 2015, because it included concepts related to phospholipids, bile acid metabolism, peroxisome dysfunction, and many liver-related concepts such as Non-Alcoholic Fatty Liver disease (NAFLD) and hepatotoxicity.
More on that in the next blog on my efforts to use artificial intelligence to understand and find treatments for ME/CFS and related diseases.
Nah, vitamins don’t cure ME/CFS. Been there and done that (although I did spontaneously recover for no reason I can pinpoint and I wasn’t taking any vitamins or meds)
But Martin, Efythmios showed that he had ME/CFS, then showed in detail how he recovered from ME/CFS using supplements – and yet you say “Nah, vitamins don’t cure ME/CFS”(????). Do you think he had something else?
cort, researchwise, take 1000 breastcancerpatients and there will allways be some spontanous recoverry in a few. i know that from a breastcancerresearcher…
I guess I just don’t see much spontaneous about this. He did his data analysis – once on his personal patterns and then on ME/CFS and allied disorders – applied the results and it worked. Before that, he was steadily declining.
yes, you are right in this “case”. but it can happen spontanious like with breastcancer. that was all i wanted to say, verry ill…
A common fallacy that recovered patients often make, myself included, is that “I had MECFS, I did X and I recovered. Therefore X was the cure” when the whole thing could’ve been just a coincidence.
All data analysis does is identify possible patterns. Once you suspect a pattern, you still need to put it to the test to be able to say X caused Y. That is often difficult with the sample of one, even for small things like “vitamin D improved my MECFS”. You will have to try vitamin D for a month, observe result, and then repeat it dozens of times with flips of coin, just to conclude that it helps you. In case of recovery, you can’t repeat, obviously. All you can say is that “I suspect X helped me”.
That’s in part why Efthymios repeatedly tested himself – pushing himself into a crash and then seeing what didn’t get him out of it.
Yeah, I see he did that as a way to refine his protocol. But you can’t say that his protocol works even just for him unless he can repeat the whole protocol with predictable results; you can only suspect it does. Which is normally the case since you don’t want to make yourself sick again even if you can. But I see from the comment below by neutronenster that Efthymios can actually repeat it by withdrawing from the protocol and making himself sick again. Good for him 🙂 I missed that from the article.
Yes but to TK’s point that doesn’t work to validate a result in an n=1 especially if you had already “recovered”, that relies on the assumption that the disease process is ongoing and you can replicate how you were before if you change one thing, which might not be the case. I agree it is the only way to convince to yourself that something you changed had a real effect moreso than just a placebo effect but I think the thing being raised by some of the comments here is this is why we need trials to actually figure out mechanisms and what might work because soooo many stories of people saying I just took x y z and it helped me and it is frustrating if not impossible to figure out the exact right mix of supplements or whatever it may be that will work for many others. I applaud the efforts here and ability to use data-based evidence but unfortunately this isn’t going to be realistic for most of us to do.
Yes, in an ideal world we would have trials but we are probably not going to get trials of supplements or combinations of supplement so we are left with the very frustrating situation of trying x, y or z not knowing if we have the right dose or combination or whatever.
What I like about Efthymios treatment approach, though, is that it was derived from an analysis of common factors in ME/CFS and related diseases. Plus, it introduces a factor new to many of us – the liver – and if you check out the next blog, I think you’ll find the liver connection quite interesting 🙂
Yes tudca is always smthg I keep meaning to trial mysekf
I think this guys testimony is Amazing!
the negative comments are uncalled for and frankly we need to encourage people like this to partner with Stanford.
Agreed!
So, I wonder if Efthymio or someone could create an easy to do program where we could just input our dailies (food, supplements, weather, etc) and get a report after a month, 2 months, etc.
So many of us don’t have the wherewithal to keep such journals and do the research on it.
I have seen some that vitamins/minerals helped EDS a lot, it is plausible he has EDS possibly EDS 3 or HSD, some have crossovers 2 types one is Tenascin X or others.
I also see from his photo it looks like his ear lobes are attached which is likely involved with connective tissue disorders. One does not have to be bendy or flexible with EDS
The other on here mentioned he Martin was helped with also Vitamin D3 it could be possible he has MS with ME/CFS/EDS, Ron Davis said as many as 20 or 25% have MS with ME/CFS on tests he did in the lab he mentions this in his latest Live video from the London conference.
One UK Doctor a medical student GP/Patient/Author was told she had FND she published a paper later after her recovery she had Latent TB negative on the other type treated still not well,her left kifney was enlarged so is mine both of us on ultrasound.
She finally had the proper tests a venograhy done it was not her kidney it was the vein one inch above they found it was compressed, after Surgery she knew in the recovery room this was her illness symptoms resolved she had all along Nutcracker Syndrome & several months later she developed Stenosis & underwent another surgery & recovered.
She is now a GP in Cambridgeshire a partner. The Paper was I can assure you, there is nothing wrong with your kidney her Author name is Tamara Keith. She is also on Twitter, I noticed also from her photo on Twitter her ear lobe looks also attached.
Some research suggests some can be Born with this condition Nutcracker Syndrome it is also seen in EDS as well…I am now trying to contact her, she also had a urine gold standard test I think it was proteinuria 18 hours awake & 8 hours night collection.
I was told my left kidney is large a Dromedary Hump like a single hump Camel & it is lopsided, I cannot void properly standing up I sit down instead maybe my BP drops or it is the compression she had.
I am now trying to contact her
But if you read the blog post, it strikes me that Efthymios’ condition hasn’t been cured yet: if he drops any of his interventions, his ME/CFS symptoms return. IF the things he listed are working (which is not certain due to potential placebo effect), I think this points towards a hidden metabolic disease. Metabolic diseases like that tend to be rare an relatively unique, so I wouldn’t be surprised if Efthtmios’ solution is also quite unique and not easily transferable to other ME/CFS patients.
That may be so, but I must say I would be fine having to take some supplements and be able to exercise. (A nice tradeoff!) I think most chronic illnesses are probably managed, not cured.
Whether Efthymios solution is unique to himself, of course, I can’t say but if I had to bet right now, I would actually bet the opposite might be true – that his protocol actually extends further than ME/CFS since he found the things that worked for him by analyzing data from ME/CFS and other related disorders. That suggests it could have relevance for quite a few disorders.
Be sure to check out the followup blog where we focus in on the liver aspect – it was really surprising to me how much there is on liver dysfunction in ME/CFS.
The liver very interesting. If i am correct there is not much information about it on ME/CFS isn’t it? I would like to see liver biopsy in ME/CFS patiënts. I was alcohol intolerance for a long time in the beginning of my disease but now i can tolerate alcohol without any problems. I even feel better for a short time when i drink . Isn’t that strange…. I read that a subgroup of patiënts have this experience they feel better after drinking…. 🙂
I can confirm I had the same positive effect after drinking. This however -according to this hypothesis- brings problems down the line. Regarding liver biopsies : I specifically asked from some ME/CFS patients to have a test called Fibroscan. More testing is needed of course to draw sound conclusions but see here : https://twitter.com/lifeanalytics/status/1517173320235507714
Efthymios protocol was proven to work very well for him and there is no question in my mind that this is NOT a case of spontaneous remission due to the fact that he can put himself back into CFS mode and pull out at will with the protocol. This was tested multiple times. Excellent work Efthymios!
I came down sudden onset on 1983 after taking large doses of Slo-Niacin. A form of Niacin that can be very toxic for the liver. I know reasonable amounts of Niacin can help many, but i was given a protocol by physician that ramped up to 4 grams a day for months. And my borderline cholesterol went up! So he increased it and kept on pushing.
I was already getting many of the CFS symptoms, and one day after a greasy pizza I felt so bad I decided I needed more Slo-Niacin. I took 6 grams that day. That was it!
All the symptoms of CFS and POIS (Post Orgasmic Illness Syndrome) set in hard. So I stop the Slo-Niacin immediately.
I eventually had a liver biopsy that showed fatty liver. My borderline cholesterol went to 400, and my normal triglycerides went up to 3000 the subsequent months, my blood turned yellowish due to the fat, and my system was in major fat chaos. I had none of this symptoms before I was given Slo niacin for a borderline high cholesterol.
So to me the liver was involved. I have close to normal numbers now, But I still have CFS. .
Thank you for this comment. There is a well known association of time released niacin with hepatotoxicity .I have extremely negative effects when I take even tiny amounts of niacin. Please visit the following link for a proposed mechanism of niacin hepatotoxicity : https://www.ebmconsult.com/articles/niacin-mechanism-liver-hepatotoxicity-flushing . Another posibility is the consumption of -highly critical- methyl groups via niacin : https://pubmed.ncbi.nlm.nih.gov/22971213/
I can not tolerate niacin supplements now either. Even 50mg makes feel toxic and extremely fatigued inflamed too I think.
POIS sounds like a vagus nerve problem.
Drinking..
What I can add is, in my early days, prior to my horrific entry into me/cfs…and, I do mean HORRIFIC!!!.,
One single drink of booze would put me into over a week of hangover…..one single potatoes chip
Would do the same.
This guy is so much like me
Just to add..one single dose of horse ivermectin completely changed the coarse of this illness…subsequent doses do nothing.
I do think I have some type of microscopic parasite.
Just a couple months ago in the vision of my right eye only I seen a grid of “bugs”🤷♂️….many of them were “swimming” left to right in lines, then in the same grid I seen a few lines “swimming” down to up…these lines were intertwined in a square grid pattern….then about a minute or two later it all just went away.
I’ve worked around race horses,pheasant farmed,hunted my entire life, was a taxidermist for several years.
I know for a fact that I had/have some type of parasite.
Tell that or suggest that to any canadian doctor and you’ll soon be booted out of the office.as I write this my skin is very warm to the touch,slightly red.
In the earlier years (I’ve been sick for 40 yrs), I had major raised red skin rashes.i know my liver os involved.
This is a living NIGHTMARE!!!!
Now I have arthritis all over my joints
Ha! Me too. Moderate liver dysfunction early in the illness, and I could not tolerate alcohol well either. But got much better after the first 4-5 years of the illness. The other thing that I had early in the illness but which have largely gone away over time was food allergies. I suspect both these features relate to the hyper immune response in the early years of CFS. My theory is that the hyper immune response dissipates in the periphery, but remains in the CNS! I have had manageable fatigue now for many years (I work but really have to manage my energy), and PEM has never really improved much (curcumin has helped a bit)
There is actually a lot more than I thought! I only dimly remembered hearing of it but I was surprised at what a search brought up.
I had moderate liver dysfunction in my ‘early days’ of CFS. It’s been pretty much normal now for many years, and I drink alcohol at mild- moderate volumes.
Thanks for pointing that out. It’s still possible that he has MECFS and his protocol could cure his MECFS in the long run. The protocol could be suppressing his neuroimmune hypersensitivity and then the hypersensitivity return when the protocol stops. I personally have a protocol that worked for me but I kept relapsing when I stopped. The relapses became milder as time went on.
There are illness that require protocols for life like GSD or Diabetes & some with ME/CFS also have diabetes or GSD so maybe the protocol is for life not curable.
If it is the folic acid gene mutation there is no Cure & ADHD & Autism has been linked to folic acid
As soon as I started reading his post I am convinced he has/had the issues with folate his body needs methyl folate.
In 1998 the FDA introduced it in flour/products folic acid & other vitamins/minerals & it is also in gluten-free items & countless food items have this so do vitamin minerals contain folic acid, gluten, or gluten-free.
If he does the 23andme test he likely has the folate mutation
Taurine also helps many with heart metabolism. The Tulane Hypermobility Clinic is on Facebook they published recently
on these genetic mutations, they also highlight EDS Tenascin X EDS in some & they mention copies of the tryptase gene.
I think sugar also is a curse maybe it is contaminated by gluten factories.
I know carbs are my downfall gluten or gluten-free.
I believe ME/CFS is EDS as well one does not have to be hypermobile and not all are fully hypermobile.
There is another Group on Facebook & a Boston Doctor runs the group I will see if I can try to post this on that group
My fotale levels and vit D are always below normal and I am recovered from ME/CFS.
Hi Martin, I am glad you mentioned the low folate because what I am talking about is a folate deficiency & B12 Methyl deficiency & I am glad you have recovered.Did you post anywhere, where you recovered & how? thanks
How long have you been sick before you recovered?
about 16 years and then I just got better for no reason I can say.
There are some pretty powerful anti-oxidents in his protocol. His liver enzymes were elevated, because his liver tissue was slowly breaking down. Sarah Myhill has always pointed out that the liver and heart are loaded with mitochondria.
Ignorant comment. Though there’s no ‘official cure’ for MECFS, most people’s condition is caused by some sort of biochemical pathways being shut down. If the biochemical mechanisms and pathways are opened up (by the required substances), then a huge amount of improvement should be able to be made. General random vitamins won’t do it, but figuring out which specific set of substances the body actually needs to get going again very much can, just like Efythmios has done himself.
What he took were not regular vitamins/minerals he took methyl ones methyl folate/methyl B12 & other things plus he eliminated numerous folic acid containing foods & likely did not
take multi vitamin/minerals that have Synthetic Folic Acid the FDA introduced this folic acid in food back then not good for
folic acid mutations so Yes, I can see why he improved there is a Group on Facebook they are on methyl protocols in vitamins & foods
Wow, impressive work. What tools have you used to track stuff?
Thank you Maciek, I used MyLogsPro for tracking symptoms , then some of the tools I used to analyze data were R, Weka, Python Scikit Learn and KNIME. For Text Analysis I used GATE (General Architecture for Text Engineering). Back then not many machine learning tools were available, especially for text analysis
Hi Efthymois, Is it possible for others to plug our data into the tools you built and see what it suggests for us? I’m very interested in your approach, but I suspect at least some of the necessary treatment varies by the individual. Thanks for sharing this success story; it’s an inspiration to hear it.
^this! This would be an incredible service, and a fascinating patient led experiment.
yes please, make a tool for us. but also for the seveely ones, the bedridden ones, long term ill ones please!
it seems like an app might be helpful with extensive tracking of a bunch of different stuff, even just for functional improvement having a setup for a computer to find the patterns and tell you “you had more bad days from xyz, stop doing that” could be very helpful… I should ask around my robotics team and see if anyone is interested in programming a symptom tracker with AI
yes, i wish i had one… That Efthymois or you and your connections could make one for us…
Ha, good to see a fellow R user which seems to be rarity these days. My tools were gscript, R, regex, metrome and fitbit. I was thoroughly convinced that diet/suppliments didn’t do a thing for me, so I exclusively focused on activities.
I do want to point that while Efthymios used his tracking data to finally stabilize his health it was his broad analysis of ME/CFS and related diseases that opened the door to his return to health.
Because he analyzed ME/CFS and similar conditions it’s possible that the conclusions from that analysis (TUDCA and others) could apply to many of us.
Might be worth publishing this then if it was AI extraction from published literature to find potential hypothetical targetable areas for treatment…get the ball rolling with AI in this field.
That’s exactly what it was!
oh Cort, how do we get our hands on that? i am a worldstranger and way to ill..
It’s interesting how much overlap I have with this experience and treatment regimen. I also noticed that I was having occasional “good days” and hypothesized that I would be able to closely monitor variables in my daily routine and identify problem behaviors and helpful ones. My theory was that this could lead to more good days and less bad ones and it has absolutely been working! I still have significant ME/CFS but I enjoy enough of my life to say that I am happy… that wasn’t the case for quite a few years.
I would strongly encourage anyone who has the experience of “some bad days, some good days” to very carefully and thoroughly monitor your daily variables: food, supplements and medications, bed/wake times, amount of sunlight, exercise/movement … anything that changes day-to-day.
In case this helps anyone, here are some of mine…
“Bad” variables for me: more than about 15 mins direct sunlight (!), almost all complex carbs and grains, alcohol in any quantity, more than about 2800 steps per day (very unfortunately), “supplement levels” of almost every vitamin and mineral, neurologically intense events (any significant stress, intense movies or video games, acute sensory input – noise, vibrations, light), probiotics and many prebiotics, nightshades (like tomatoes)
“Good Variables” for me: Meditation, stretching and NSDR (like yoga nidra), methylfolate, 300 mg or less NAC in the AM, panceratic digestive enzymes, d-ribose, small amounts of creatine, military level discipline with my bed/awake times, 100-150 mg gabapentin before bed (helps sleep and reduced migraines by about 80%), minimize but not eliminate caffeine (I eat small amts dark chocolate and drink a few cups of low caffeine green and white tea in the morning only), small doses of vitamin C, taurine in small amounts
Thanks Ryan, some of your findings overlap with mine. Meditation, stretching, minimize the great and glorious caffeine (sigh)…
I’m surprised at how helpful stretching is at reducing muscle pain, It’s still there but not as bad. Now that I’m stretching I’ve found I can add in using the exercise band – surprisingly helpful at times. I’m kind of shocked by that. Avoiding gluten is another big one for me.
How many people who have had moderate/severe cases for 2+ years go into remission or are cured? My understanding from the literature is it is under 5%.
Still, if the patient population is as large as reported, I would think many of the replies on the “Recovery Story” message boards would say, “That worked for me, too.” But I don’t see many of those.
I am so very happy for the recover-ers. In addition, their stories give me hope (even while I have a hard time feeling confidence in any one of their approaches).
I’m wondering if there are recover-ers who designed a protocol based upon post-Long Covid research, and what the success rate is for others who tried those same protocols.
After all these years I don’t know what to think about how many recoveries there are. I certainly hear more them – I have a backlog of about 5 who have contacted me. New things are cropping up all the time – like Efthymios’s approach, coagulation, Rapamycin, oxaloacetate, etc. – which I would imagine lead to more recoveries. I still imagine that that the percentage is not particularly high, though.
I read one Guy who also recovered he was on the blog called Patient it was called Silent Migraines he fully recovered, imagine having silent ones & not realizing this.
I imagine he must of got headaches like any of us as well. Anything can trigger headaches even peanuts or peanut butter, coffee, tea, sodas, lights,the sun
I cannot imagine that most recover-ers stay on these forums after they get well. I wouldn’t! Bye. bye! My focus will be elsewhere. Life, here I come!
🙂
I am largely recovered and have been for a long time. I am about 90% functional relative to my (long ago) former self. But I still have some issues, most especially PEM. So I still hold strong interest in CFS, and the interest and hope that one day I will be able to do meaningful levels of exercise again. I suspect that a lot of people exist on a wide spectrum of severity with this illness. I am lucky I am at the generally functional end of that spectrum.
What protocol helped in yr recovery?
Efthymios, this is fantastic work. Now, make an app for complex diagnostics? ??? Please???
Cort: thanks so very much for this series. It gives hope!
Me too! 🙂
me to 🙂 !!
Thanks for sharing your story Efthymios. Great that this computational data approach and belief in nutrition worked for you.
I am a historian and a yoga and meditation person. So I have a very different approach.
I have a mixed response to yours. On the one hand I find it impressive that you are able to manage so much data and therapeutic strategies. On the other hand I find it a bit odd when people who are seriously ill need to be told by a computer to reduce alcohol.
My approach is very classical. I want to find out how ME/CFS works at the core on the one hand and I chose which researchers to follow by my own judgment (I was sure that I had Herpes reactivation from the beginning and my inflammatory episodes can be stopped with Aciclovir. Therefore I follow Ariza’s and Prusty’s hypothesis about smoldering, local Herpes reactivation).
Plus, I track my well-being in a diary, have learned to pace all my activities and was able to stabilise and getting back on a recovery path within 5/4 years.
For me it is key to manage stress and not have several days in an orange or even red zone of distress. Zones that where I cannot relax anymore in the evening and when long walks, and extended meditation and yoga practices don’t bring me back anymore from alarm mode.
I thought it was interesting that you found out for you that it was mainly oxidative stress that you had to perfectly manage in order to recover.
In the end I think I am doing just the same but not with pills and supplements which I couldn’t afford but with a wellness and recovery action plan that is grounded in my direct experience and acupunture, yoga and meditation, the gym and lots of fresh air in the woods at its base.
Anyway, it’s so good to hear people’s recovery stories. It makes me happy and it makes me feel that with patience and perseverance it is possible for me too.
Some of us that are seriously ill also have incredible pain. We can do acetaminophen ibuprofen, opiates or we can do alcohol. For me the only thing that really works is alcohol in the evenings . None of it’s good for our liver, but do we live in pain or entire life I say not.
Your response to TUDCA is interesting. I take Actigall in the morning (for another issue), then NAC half an hour later. Those 2 help shake off the morning grogginess.
Efthymios, have you ever fulfilled the Canadian Consensus criteria for diagnosing ME/CFS?
Yes i was wondering that too, as I saw Efthymios had increased fatigue after exercise but didn’t mention ‘Post Exertional Malaise’
Some people just have more fatigue after exertion which isn’t PEM. as we know is an awful unwellness,
Maybe PEM was omitted by mistake or I missed it?
As I’d like to know if he had severe worsening 24-48 hours after too much exertion?
Also to do all that research on himself requires a lot of mental exertion. So is in the mild to moderate range of ME/CFS which I believe is easier to return to health from.
I do definitely think he was quite unwell though, but without knowing if he had PEM I can’t tell if he fit the CCC for ME/CFS or not. Also Something else physical was going on, as the hormone issues can mimic ME/CFS too.
But we also have to remember ME/CFS Is heterogeneous, so many possible causes and also a few known subgroups
Also Efthymios’s onset was gradual. So not the typical viral hit onset. So he’s in that 20% of patients that didn’t have a noticeable onset infection.
Although as Covid has shown us asymptomatic infections can still trigger ME/CFS slowly afterwards.
As for ME/CFS in general, the disease fluctuates so much that we think something is helping but turns out it was just coinciding with a good period. I do acknowledge he tested that though other times.
I do like recovering stories, and I still think this one was helpful. I’m glad he put the effort in, as it could help others. I thank Efthymios for that.
Hi Cort, where are the storys of the severelly ones? the bedridden ones. the ones, even bedridden who decline and decline? ill since ’94, like so many…
Have you tried any brain rewiring or ANS calming approaches, like Dan Neuffer’s class for example?
i tryd long time ago yoga nidra on my bed untill that even became to hard. did not try Dan Neuffer, is even harder and not my original language… but thanks!
The ones that recover? They do recover at times. Dan was bedridden for a time – not for that long. I don’t know if any of the people in this recent series were severely ill. Dan does talk about in the upcoming interviews. It does happen!
ill since ’94, long time bedridden. Dan’s talks are to heavy for me and also not in my original language. lay also verry often in total darkened room so the screen and speaking is way to much. but thanks. i also mentioned just storys about severelly ill ones who do not recover. it feels lonelly with the recovery storrys and it just do not happen to me or so many others. And it would be hopefully a signal to goverments and researchers that we are in our beds, rotting away to and that it is not 1 or 2 people. but a lot!
I was ,in my early severe days,sent to a large Canadian city and told I was severe. Non of this drs. I V vitamins were helping so he wrote to the providing $ foundation asking for 25$grand for additional treatment of chelation in 1993 when chelation was taboo. I was bedridden…had to pull myself out of bed with a rope tied to the doorknob.
I fit the fuduka criteria to a tee except for the extended crushing fatigue but that was only because I fasted for six days straight…everything went away only to come back again when I began to eat food once again.subsiquent fasting did nothing…..in fact I believe it’s dangerous for me to do a water only fast.
I do one meal a day now.its like I’m stuck in some kind of loop now….like some kind of auto immune loop…full of arthritis now
Cort! Where how I edit my posts lol thanks
Thank you for sharing! Is it possible for you to make your analysis tools into a software application and sell it?
I remember trying Dr. Cheney’s first cell-signaling gels protocol. This was when he had separate gels for heart, brain, liver and MTF (like stem cells). I did really well and he said I had a functional cure…note not a cure, but a vast improvement in function. I was able to travel, play golf, take care of my family and work at my organization as long as I paced myself. But in 2020 I had what I believe was a bout of Covid although I never tested positive. Then again, in August of this year I had clearly diagnosed Covid. All my gains have evaporated and I have acquired some serious new cardiac symptoms.
I wanted to be sure that the message that was at the end of the last blog post was seen by everyone. If you want to know more what ME/CFS is, you can now listen to Hiliary Johnson’s book “Why: The Historic ME/CFS Call to Arms”. This is available in Audible on Amazon.
Ha! Stem cells. Someone recently let me know that Solve ME recently did a stem cell webinar. Looking forward to checking it out and reporting on it.
Some years ago, Dr. Cheney took groups of patients to Panama for full stem cell treatment. It was quite expensive, but worth it if a cure would result. A few younger patients did seem to be cured, but older patients had a year or so of better function and then went back to their former state. It seems that whatever is corrupting cellular function isn’t easily eradicated.
Thank you so much for sharing your positive experience, with us Efthymios! (And thanks to you also, Cort!) I am going to try TUDCA the way you recommend, because I definitely have issues with my liver. The only thing I am worried about is avoiding glutamate, because my diet is VERY limited already due to multiple food sensitivities. I see glutamate occurs naturally in many foods. I do eat quite a lot of frozen green peas to control my blood sugar throughout the day. Would the glutamate in green peas really be a problem? I see fructose also induces ER stress. With fructose also excluded I would find it hard to keep up my blood sugar and energy levels. What would you recommend? Besides that, dietary wise I already tick all the boxes you indicated.
I’m grateful for your scientific approach, Efthymios, and generosity in sharing it. It was also courageous to put yourself into a crash on purpose (and more than once!) to test your personal treatment hypothesis, but I encourage you and others reading this to not do that. Of course I understand the scientific reasons, but sometimes things work–until they don’t, and never do again. Stay in the place where it’s working.
Thank you all for your comments, much appreciated. Some responses to them :
1. I was never diagnosed by a doctor using Canadian criteria (this was impossible in the country I am located back then and still is). I understood that what I was experiencing was ME/CFS because of the way I felt after exertion. This was not just “fatigue”, I would feel extremely unwell for the rest of the day after simply walking for 20 minutes in the morning. According to Wikipedia’s text, PEM can appear 12-24 hours after exertion but also this can take place shortly after exertion (which is what I would have – typically 20 to 60 minutes after exertion for the symptoms to begin)
2. There are now many applications that can track symptoms. I do not know if an extensive analysis can be made but I believe that each individual should track their symptoms for many days. Unfortunately, severely ill patients do not experience “good” days so it would be impossible for any AI algorithm to find differences.
3. We must investigate whether PEM is specific to ME/CFS (I believe it is not based on my research – see here for PTLDS for example : https://onlinelibrary.wiley.com/doi/full/10.1002/cdt3.74). And there are more pressing questions : Are we experiencing Post-Viral or Post-“something” syndromes? Is LongCOVID and ME/CFS the same condition? I find particularly interesting that a condition called Post-Treatment Lyme disease syndrome, resembles ME/CFS and has in its name the word “treatment”.
4. I believe that a personalized approach may be needed and the text states that whatever works for me will most likely not work for others. However, specific interventions such as limiting endoplasmic reticulum stress and oxidative stress may have a greater positive impact (my hypothesis). Unfortunately, there are many factors to be looked at. For example, patients need to be screened for WIlson’s disease, hemochromatosis , Liver fibrosis and any other condition that can negatively impact liver function. And there are many of them.
With the emphasis on the liver comes this question:
Are there anecdotal reports of p/w/ME/CFS recovering after liver transplants?
“We must investigate whether PEM is specific to ME/CFS (I believe it is not based on my research – see here for PTLDS for example : https://onlinelibrary.wiley.com/doi/full/10.1002/cdt3.74).”
My guess is that its much more severe in ME/CFS – hence the need to create the first term for it – but I would be shocked if it wasn’t found in other diseases.
Time will tell, though. I’m really looking forward to seeing it explicitly addressed in other diseases.
PEM is common in most or all viral infections. Leading virologists understand this on the molecular level. It is because early viral enzymes have the capacity to hinder mitochondrial functioning.
It is this the reason why Phupesh Prusty coming from virology went into ME in 2016.
Here he explains the why and how of viral infections causing PEM:
https://www.youtube.com/watch?v=0dI7uaTni5g
Thanks for replying, Efthymios.
My question regarding the CCC was rather directed at your own assessement.
From the description of your ailments I find it very likely that you do have mild ME. I had mild ME for several years and when I look back it was impossible for me to find out what was the problem. I had nothing but flu-like symptoms, a sore throat and PEM. The CCC are only fulfilled when enter the moderate level of the disease stage.
There is a very simple and very accurate diagnosis procedure that is recommended by a leading Melbourne based GP health institute that is aware of that problem and that has developed a strategy to also diagnose mild ME that I can really recommend to watch.
https://www.youtube.com/watch?v=EUIdbbwcnAE
So I am still curious to know whether by your own assessement you fulfill their criteria for mild ME?!
Very cool and thorough self-experiment and recovery. I admire the dedication and the use of AI/ML in this way, is like the exact kind of approach that mysterious illness like ours can benefit widely from.
All I want to know, is there a guide to learning/using the relevant tools? Are there plans to roll out any sort of service for other PWMEs to do the same?
All of these recovery stories come out, and the best the patient community gets out of it, is that you need to be highly credentialled or have a high ability to learn new information, in order to research and find your own ME/CFS treatment. And unless you can do that, you are stuck waiting on traditional research.
RemissionBiome are leading the way and showing that amazing patient-led research in ME/CFS is viable. Efthymios Kalafatis’ is the type of work that could lead to massive benefit for the many other self-experimenting PWMEs that are mostly just fumbling around in the dark.
Thank you for the link you provided Lina. I would like to be able to go through the entire video and since I am extremely busy these days my reply -and results- will take some time.
I will get back to you ASAP.
From my reading and personal experience, PEM can come on almost immediately, or be delayed by a day or two. But it never lasts the rest of the day…more like days or weeks. My last baseline crash I can pinpoint to October 2021 and I have never got back up.
The sudden nature of my drop in baseline 100% disinclines me from believing in a lack of supps/vits. I became low severe overnight May 2012; dropped again May 2017; and again Oct 2017. Vits/supps didn’t empty out of me overnight.
I’m also not a fan of the “we’re all different; the diseaSe is heterogeneous” school of thought. Why? Diabetes/ RA and so forth have universal treatments and biomarkers. If only they could find ours.
Lastly, I really appreciate what you do Cort and am grateful. I usually find you scientific and cutting edge. So these Recovery stories are hugely disappointing to me. Dan Heuffer. Really?…BPS with smoke and mirrors. And now AI. What next? Mushroom microdosing. It feels like, see a passing bandwagon and jump on it. Sorry, I’m 11 years bed based and in a bad mood xx
Hi Jane, sorry you’re in a bad mood – I think you are! (:)) I can understand you’re not embracing neuroplasticity – that’s not for everyone but I encourage you to take another look at AI and put it back into the cutting-edge scientific category. AI assesses enormous amounts of scientific data to find biological patterns that we don’t have the capability of picking up.
Note that Efthymios was able to pick up biological themes in his analysis which didn’t show up in ME/CFS until years later. That really increased the plausibility of his effort for me.
You might want to check out Eric Topol’s recent blogs on AI and medicine. I think they will make you more hopeful about AI
https://erictopol.substack.com/p/all-eyes-on-medical-ai?
https://erictopol.substack.com/p/a-new-precedentai-gets-the-american
https://erictopol.substack.com/p/my-review-of-the-coming-age
As to the bandwagon thing…You picked a bad one – we already did a blog on microdosing for fibromyalgia (lol). (Actually we covered Jarred Younger’s treatment trial). It’s also being explored in chronic pain.
It’s hard to know what is real and what isn’t. All I can do is try to thoroughly check things out.
Hi Cort and thanks for your reply. Come to think of it I DID see the microdosing article. It came at a time when my friend in the south of the UK was telling me how she and a friend had got hold of some shroom concoction and were microdosing to help with a creative block and ADHD.
Neither woman has ever been diagnosed with ADHD and are more laid back than you could imagine.
Same with AI. I absolutely don’t dismiss its potential. But I am dismissive of the plethora of people scaremongering about how it can write Shakespeare and do your homework for you.
I sincerely hope these things will throw up some useful pieces of the ME jigsaw,but not at the hands of Joe Public trying to find 15 minutes of fame. Bad mood improving :)….but thank you again.
🙂
AI is now a hot topic so we’re going to see a lot of junk around it for sure. The next blog explores more deeply how Efthymios used AI to get his results, what he thinks it can achieve, and it’s limitations as well.
Jane, thank you for this comment. The reason I have trusted Health Rising is because the comment section is full of skeptical people who aren’t waiting around for the next bandwagon to jump on, as shown in this bunch of comments and especially yours. I know it’s a forum with many people who’ve been sick with ME/CFS for long enough not to take others’ recovery stories too seriously. I read these stories to see if there’s anything that rings a bell for me (based on long, hard experience) and to see if they connect to any actual research that’s been done.
I agree with you, by the way, that being tired the rest of the day after activity is not a description of PEM. Overexertion (which, for me, has varied widely, since I was bedbound for several years, and at my worst, sitting up for 15 minutes was overexertion) can lead to setbacks lasting from three days to forever. Usually, for me, I don’t even realize that I’ve overdone until I’m hit with a wall of illness the following day. And if I don’t obey my body and lie down for several days after that, I will provoke a much much longer and deeper setback…months (or in one case, two years). It’s always hard to know, when people have milder cases, whether it’s really the same illness.
Also, the complex “good days/bad days” thing would absolutely not work for me. When I’m feeling well, it’s because I’ve carefully stayed within my energy envelope for long enough. Bad days come from overexertion, but I have to stay quiet for several days, even if I start feeling better, to prevent a major crash. In other words, good days and bad days are not about supplements or meditation or the weather. My condition is an exertion intolerance, and that’s what determines whether or not I feel unwell. It’s pretty straightforward.
Hi Agatha
Thanks for yr comment. I long for a biomarker. And Good days/ Bad days is onr of the most irksome comments people make. All I seem to have are days when I can fake looking well for very short periods….and days when nobody sees me at all because I’m too ill. The former are rare; the latter interminable.
I do think a biomarker will reveal different illnesses are at play. How can one person work part time, but another crash for months if they brush their teeth? xx
While it’s true that not one who experiences remission or recovery can prove what exactly made them well, they still got better (fact). I’ve been getting better slowly over the past three years applying many interventions repeated in others’ histories (n=>1) of recovery. So I believe I’m doing something right and will continue – and will get better!
We cannot sit and wait for solid research to give us the answers, so we can only search for information such as these stories and apply what we hope will be helpful in our case. I tried to make a log at one point to see the result of my interventions over time, but it was too complicated. I cannot say which ones of the methods or supplements I’ve chosen that moved the needle in the right direction, but somehow I’ve learned my body’s signals and can feel and witness what happens. That’s good enough for me as long as I have no better alternative (anybody?).
In a way, we’re all using data-analyzing methods as we ‘extract data’ from thousands of sources (my case, anyway) to apply to ourselves. So imagine how much more tailored and targeted data extraction we could get using AI! Thanks, Efythmios and Cort!
I agree with you Gertrud.
I am also doing the same. Collecting data analyzing and then adding interventions supplements etc but nothing has moved needle.
Can you tell in your case what is helping you?
Nice trojan horsed ad for TUDCA. Which AI app did you use to generate the plot for this? Might be time to go back to the library books. Not sure what to believe anymore on the internet. No site is safe.
I mean we dont have a biomarker to this date and who am i to judge what is cfs/me and what not. But ppl that tell me they got out of Cfs with some diet changes and some vitamines are probably mislead.
Comments like the above solidifies my belief that either this illness is all one entity but have people at all
Levels of the spectrum…..OR….this is many different illnesses causing many similar sets of symptoms.
I’m putting my money on…. ,these are many different illnesses or pathogens
This is very impressive. The internal control is robust; the effect is reproducible. I’m particularly struck by the mention of of TUDCA; I recently came across it, on twitter:
https://twitter.com/zedzies/status/1691629966885085576?s=21&t=cKAVrLfp9AmmkTQ3GRwR2A
If he can produce an app or algorithm online that will do this for other pwME, he will deserve a Nobel prize.
But a gluten-free, low-protein diet? What it is he actually eating?
I’m a bit cautious with recovery stories. It would be good if we could check with them a year later to see their range of symptoms. Jen from MEAction also thought she’d recovered. If PEM is still there, it’s still ME/CFS.
Dr. Ron Davis at Stanford has asked researchers to theorize on the cause and effect. How about us? A separate blog, perhaps?
For me, I’ve followed a theory for 9 years that has helped me a lot. I was pretty bad in the 20 years before that, and still have to be wary. Now, at least all of my crashes make sense, and I can correct them within a day or two. I’d like to see ME/CFS research dollars spent on PEM, since it is the one distinguishing feature for us. Studying the 100s of ways we can be sick and then looking backward is our meager research money wasted. Let the CSS well-funded research dig into those symptoms.
There are so many things that make us worse, and many speak to Central Sensitivity Syndrome. Look instead for what causes the PEM, for I believe that if we can solve that then many, if not all, of our ensuing CSS symptoms would be reduced.
Love to hear what you’re doing Per!
I responded but placed it as a reply to my first message, not as a response to your request. Not sure if it would advise you or not.
What has helped you per. Please comment here. It will help severe bedbound sufferers
Not sure if this will help the severe, bedbound cases or not. You decide.
OK, here goes. Mostly it stems from Dr. Naviaux’s work. A recent study spoke of excess sodium in our cells, which did not allow them to expel potassium. The sodium was about 5,000 times the norm. In any case, we know that the cells danger response is messing up the usage of oxygen and sucrose, leaving them unused. Excess O2 ends up as lactic acid and the sugars literally ferment in our guts (FODMAPS). The error gets reported to the cortisol (the stress hormone), which runs the body’s alarm system.
If we simplify Naviaux’s Cell Danger Response chart (link below), compare my model of the cortisol cycle to it a clock. So, consider the 12:00 as where the Cell Danger Response error is reported to cortisol.
At 3:00, the body’s alarm system determines how much adrenaline to hit it with, depending whether it’s a burn, say. or a loud noise. Follow-ups on Naviaux’s work suggests that our problem at this 3:00 point is where things go wrong. This point is apparently a 5-step process and some research says it’s the 5th stage (of 3:00) that’s the problem, and others say it’s the first.
Next, the 6:00 point is where the amount of actual adrenaline is thrown at the alert. But the problem is, since we are not getting the mitochondrial energy from oxygen and sugar, the body goes to the back-up system for energy, which is adrenaline and uses that adrenaline for regular day to day functioning, which it isn’t designed for. This is why for us, adrenaline still shows up in tests days after an event. So, we’ve use up the (back-up energy system) adrenaline for day to day. If we need more energy from somewhere, the first two systems can’t supply it from either source and goes to the third system for energy, which is an inefficient transfer of amino acids. This buries us. I think this is also why we have the ‘tired but wired’ problem when we try to go to sleep.
So anyways, the 6:00 position is trying to send in the adrenaline as determined by 3:00, which is no longer there.
At the 9:00 position, our system audits the results asking if the problem is solved. No. So it reports the problem still exists back to cortisol in the 12:00 position again. From there, the cycle is repeated with the message becoming stronger on each cycle. The problem attempts to dispense more adrenaline which isn’t there, and the cycle is self-perpetuating in a more and more harmful way. Ignoring it and ‘pushing on through’ causes our non-essential functions to slow or stop, essentially forcing us to shutdown. The brain can’t think, the body and muscles slow or stop working, and our emotions are easily overwrought.
But cortisol was once described to me as the carrier of negative emotions, as well, which makes sense. There are many problems that influence the body’s warning system and cortisol. Since the problem with the sugar/O2 is constantly reporting the problem to cortisol, our system is already at maximum capacity. So, anything new that triggers cortisol, makes the whole clock analogy even worse, spirally us down. Cortisol can be triggered by anything from sunlight and noise to dire circumstances like an injury. Both internal and external problems get reported to the cortisol. Dealing with noise, light, chronic illness, stress, emotional issues like dealing with unsupportive family, frustration, anger, overextending ourselves, and any process which kicks in the Hypothalamus/Pituitary/Adrenaline axis issues. Many processes we don’t consciously control like heartbeat, blood pressure, and even nightmares can add to our cortisol load. I believe it is the all of the accumulated cortisol triggers that make one day different than the next day.
But if we continue to trigger the cortisol 24/7 the problem worsens. This would explain why we can do something one day but not the next. If the total load exceeds our overload level, we crash through the clock analogy above. I’m including a link to the WebMD functions of the Hypothalamus/Pituitary/Adrenaline axis functions. It is our alarm system that is the problem. I think if researchers can determine why the cell mitochondria’s sugar/O2 isn’t supplying the energy in the first place, it will reduce or rid us of the ensuing clock spiral.
So, how do you keep an eye on things? By my theory, if you crash, it will be from the accumulated cortisol load. What stressful situation did your body go through today, either from something internal or external? Reduce the overall load and better days will follow, or at least you’ll realize the cause and effect, and be more careful about it in the future.
If the total load is too much, we’ll crash. We can’t go on, because we’re trying to function with the 3rd energy producer, the amino acid transfer. Weed out the problems we can control. Problem people may have to go. This could also be why cannabis helps some people, as it mellows out the adrenaline fatigue.
In the past, I’d have at least one day a week in heavy crash mode. Now, it’s about once/month, if I keep an eye on my overall load. Emotion is the toughest. With physical overload, we can stop working. For mental overload, we can put aside the complicated instructions we may be trying to follow (badly). But with emotional overload, we can’t just stop it, and the more upset we get, the harder we fall.
The best thing we can do is to be as content and serene as possible. Worrying, crying etc. can contribute to the cortisol overload. Life must be lived on a railway track, not a rollercoaster!
https://www.webmd.com/a-to-z-guides/what-is-cortisol
This is the complicated version of my clock analogy – https://naviauxlab.ucsd.edu/science-item/healing-and-recovery/
Yes,I awake at almost exactly 3 a.m. every dam day!!!
Shit theory.
I am trying TUDCA and other things he mentioned from 1.5 months. Not a 1% improvement. In fact decline of some percentage.
He had some other issues not CFS
You obviously have been following me on Twitter and as I posted in the thread of my remission : “This thread is not about suggesting a regimen but rather a hypothesis. As I also mention, it is possible that a personalized approach will be required which means that no single regimen will be applicable to all patients”
Source : https://twitter.com/lifeanalytics/status/1678471204812759048
Would D-Limonine induce P450? This confused me as grapefruit in itself inhibits P450, but I guess D-limonine (taken from the peel?) has an opposit effect then?
Looking forward to the upcoming blogpost on the liver!
Hi Ingrid, this is correct. I have been avoiding P450 inhibitors such as grapefruit and used D-Limonene which boosts Cytochrome P450 functions in order to improve detoxification.
Interesting! I wonder what effect eating both the peel and the fruit would have, which is one common way to use at least other citrus fruits in cooking. Anyway, thanks for replying and for sharing your story.
Yes but -as discussed in the post and this hypothesis- you will have to be cautious with the amount of fructose you consume.
Yes, thanks for the heads-up. I’ve been trying to find a tudca-supplement that seems to be of good quality, but can’t find any that seems trustable. Are there any specific brand you know to be of good quality?
Lately I’ve been blending, in a blender….one thumb sized pc.of ginger along with 2 slices of lemon…peel on.the guts are beggining to rumble which I believe is a good thing
I suspect the removal of offending foods and seed oils is a big part of his recovery. His use of supplementation of nutrients that his body needs is also important. It takes both actions to encourage remission. (Extended fasts are invaluable too.) But, this year, the G.A.P.S. diet has been a boon to fight my dysautonomia symptoms (some of which Efthymios describes). I was also able to alleviate my mast cell activation symptoms by drinking hydrogen water. But, my stubborn dysautonomia symptoms I’ve had for 30 years, have responded very well to the G.A.P.S. diet which I’ve been practicing for the last 9 months. With it,I’ve seen at least 80% improvement, which is astonishing. It’s rare to reverse dysautonomia.
As a leader of a home hospital for 17 years, I would say to the naysayers “don’t knock it until you try it”, and when I say “try it”, I mean doing what he did.
Now, I know that not everybody is a data scientist (including myself) but I do know enough to say that Big Data techniques are much more fruitful if the data from many people can be included.
Why not figure out, possibly with the author’s assistance, how you could do a similar analysis and then share your data (anonymized of course) with him to improve his dataset.
And be prepared to take a few steps forward and backwards, like the author did, to ensure the efficacy of the proposed solutions.
As a community advocate, I have been assisting a person with relapsing/remitting ME/CFS for the past two years and have learned much in that process. Techniques such as this are urgently needed, and the need for more data is urgently needed so possible common threads can be found.
This is how real science is done.
Hear hear!
I second that
If it weren’t for my trial and error of many many things,I’d be way back there still bedbound.
Horse ivermectin and the perrin technique at the top of the list
What an absolutely fascinating case study, Cort! OMF has some machine learning studies going on now. I envy Efthymios’ skills and knowledge in the field of data analysis! It’s interesting that some of what he came up with are well-known treatments for ME/CFS – like improving methylation with B12 and 5-MTHF and focusing on oxidative stress – while other aspects – like all the liver stuff – seem like new/different avenues.
His results speak for themselves, and I applaud him for continuing to work on this and test his theories even though he’s now recovered.
Thank you so much for sharing this fascinating story, Cort –
Sue Jackson
Live with ME/CFS
Efythmios thanks for your fantastic story! It really resonates with me as my entire condition started with thickened bile (sludge) gallbladder pain and removal, and MECFS started from all that. I had such bad digestive pain from that my entire gut shut down and I couldnt eat. Lost weight to 43kg. All because the liver jammed up really bad and they coudlnt work out why and never gave me answers. I feel like I have no bile flow, and extremely poor detox. But I can’t seem to tolerate tudca well, makes me feel worse. I wonder if it’s one of those things where I have to just keep going until it’s better and is making the bile flow properly again? Either way my entire issues are based on poor liver detox & bile flow I think. Been stuck for 23 years because of it.
Chris, Thank you. As discussed in the post, I do not believe there exists a “one fits all” type of regimen. We know that certain supplements may be extremely beneficial for a subset of patients while for another group of patients, the same supplement is not tolerated at all. This is why I think that a personalized approach is most likely needed which may have to take into account whole genome sequencing (WGS) data, metabolomics and other “omics” data as well as specialized tests such as total bile acids (TBA), Fibroscan among others.
In 2017 My functional medicine Dr had me do the Metagenics Liver Detox program and Celery Juice detox as described in the Medical Medium books. I do think either one or both of these helped with mecfs though I lost 5-10lbs on my already thin frame. I had intended to rerun these programs and appreciate the reminder that perhaps our livers need help.
I’m wondering if drugs like Prilosec could be causing issues with bile acid?
I love the recovery stories!
I have heard of prople that have had post-finasteride syndrome. So then this ME/CFS is induced by a medication?
“In addition to DHT, finasteride also inhibits the production of several anticonvulsant neurosteroids including allopregnanolone, androstanediol, and THDOC”
Yikes! How could lowering allopregnanolone be considered OK by any scientist/doctor?
Efthymios, are you still affected by the weather?
It’s my kryptonite. My health has improved a lot, yet the difference between summer and winter – I go from disabled to abled. Humidity seems to be the most affecting factor.
I do happen to live in an area with constant positive ion weather fronts and high heat and humidity for most of the year, not toooo far from Greece.
If I lived in a climate that was adecuate for me, I would be ‘normal’.
Sounds like this could have been Post-Finasteride Syndrome (PFS) rather than ME/CFS: https://www.pfsfoundation.org/
It started with a medication and progressed to ME/CFS. I had Post-Exertional Malaise (PEM) which was quite pronounced. Note that there are cases of people getting ME/CFS after taking medications, exposure to organophosphates and other causes. Viruses therefore is not the only cause.
Effthy…..I wanted to ask you…..do you or did you have high protien in your urine?
Did you or do you have high ferritin levels?
Thanks
This link to the publication Science outlines the use of tudca to combat er stress(endoplasmic reticulum stress ) as a factor in a case of ME/CFS. Very interesting and worth a read. https://www.science.org/content/article/protein-disrupts-cells-energy-centers-may-be-culprit-chronic-fatigue-syndrome
Great work, thank you, I will try this!
Thanks for sharing your story, Efthymios! Have you analyzed your genes? Have you found any genes that are causing these issues in your liver? Have you uploaded your genes to Promethease?