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The GIST
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The written GIST is on the bottom right.
Dr. Stein recovered from ME/CFS/FM and MCS using neuroplasticity, diet, photobiomodulation and other approaches.
Health Rising’s “What’s Up, Doc?” series asks ME/CFS/FM and long COVID experts about what’s exciting them in the field. The first “What’s Up Doc?” session was with Dysautonomia International founder Lauren Stiles.
Dr. Eleanor Stein MD is a chronic fatigue syndrome (ME/CFS) expert with a difference. About 30 years ago, she came down with ME/CFS/FM and multiple chemical sensitivities (MCS). As a doctor, she’s worked with over 1,000 ME/CFS, FM, and Environmental Illness patients over the past 20 years. (She is no longer practicing.)
Dr. Stein won the Florence Nightingale Award from the Edmonton ME Society and the John MacLennan Award of the Canadian Society for Environmental Medicine.
It took her over 25 years to do it, but she’s also a recovered person with ME/CFS. In the second of our “What’s Up Doc?” series exploring what’s exciting ME/CFS/FM and long-COVID doctors and researchers, I had to ask Dr. Stein first about her recovery.
Watch the interview and/or read the blog (which contains some extra stuff).
- Get Dr. Stein’s handout on hormesis by going here.
A Surprising Recovery
She also has an eye-opening recovery story. She did everything she could to get over MCS and ME/CFS. She flew all over the place, trying so many different treatments, including some really exotic ones, and nothing worked until – to her utter shock – something did.
Dr. Stein explained that she was a hardcore biomedical proponent who sniffed at anything mind/body oriented until she had a very, very ill and hypersensitive MCS patient who was able to move out of her tent and into an apartment after doing Annie Hopper’s Dynamic Neural Retraining System (DNRS).
A week after Dr. Stein did the program, her chemical sensitivities were 80% better and are now gone completely.
That was Part I. Part II. – getting over chronic fatigue syndrome (ME/CFS) – was more difficult. It took several years, but using DNRS, and other practices she picked up from Norman Doidge’s book, and Dr. Michael Moskowitz, plus photobiomodulation (red light therapy), an autoimmune diet, pacing, focusing on her psychological well-being, etc., eventually came together, and at one point, it all came together and she was able to start exercising again without harm. She is still well and completely functional several years later.
- Check out Dr. Stein’s Healing Through Neuroplasticity Course
(Anyone leery about the brain’s ability to retrain itself should check out Jan’s remarkable story, as told by Dr. Moskowitz in Norman Doidge’s 2015 book “The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity“.
The Autoimmune Diet
The Autoimmune Diet avoids substances that arouse the immune system like nuts, seeds, dairy, eggs, legumes, and greens. It basically consists of meats, vegetables, and fruits (and she doesn’t recommend it for everyone). About a year and a half after she started, she noticed that her energy was up, she was able to do more in a day, she was not crashing and she was able to get out and about without a problem.
Neuroplasticity and a Gratitude Practice
Neuroplastic techniques were “incredibly helpful” for Dr. Stein.
Dr. Stein said her neuroplasticity practice was “incredibly helpful”. Prior to that, she was focused on what she didn’t have and what she’d missed out on. Finding ways to elevate her mood – which is basically what all these programs do – is helpful physiologically. For instance, BDNF, which helps us form new neural circuits, does its best work when the mood is elevated.
Neuroplastic practices need to be done repeatedly…over and over again – so that the brain starts to “get them” and listen to them.
Recently, she’s done a lot of research on chronic stress. One upshot is that chronic stress is a function of how we perceive our situations. Referencing some people who are in really difficult situations but manage to remain upbeat, she said:
“That objective circumstance is not the determinant of whether I feel stress or not. It’s how I perceive it. Two people, could have the exact same circumstance, and one person could be absolutely miserable and continually focused on the have nots. That is, she said, a Buddhism a recipe for misery.”
Another person in objectively very similar circumstances could be like, you know what, life is good. I can do this, this, and this. I have a loving family looking after me, or I have this or that.
To anyone who is experiencing chronic stress (heart rate is up, sleeping poorly, feeling stressed and anxious, worried, angry, and frustrated, she suggested starting a gratitude practice. She recognized some people respond, “Are you kidding me?”, but for her it’s made a real difference.
Dr. Stein emphasized that these practices are not a cure! Instead, each of them worked on one of the many layers of health that were ultimately beneficial for her.
As is hormesis…
Hormesis
Several of the hormetic practices boost the metabolism.
If Dr. Stein is anything, she is curious and she’s recently focused on something called hormesis. Hormesis is a process by which cells get stronger after being exposed to low levels of stress.
A key factor regarding hormetic stressors is that they are natural; i.e. for the most part, they are stressors our bodies have become evolutionarily adapted to.
Stressors involving reduced food intake, and extremes of heat and cold, for instance, call forth a healthy metabolic response that leaves us stronger. Proponents of hormesis assert that these stressors are so baked into our physiology that our bodies and cells need exposure to them to function optimally.
Exercise, when done correctly (in people who can do it), is a prime example of how a hormetic stressor works. Even though exercise strongly stresses the body – it causes our heart rate and breathing to increase dramatically, and can result in muscle damage – in a healthy person, the damage is quickly repaired, the muscles grow stronger, and glucose metabolism, bone formation, and more are improved.
(With regard to exercise and diseases like ME/CFS Dr. Stein assesses her heart rate and heart rate variability using a wearable tracker. Check out her presentation in May of this year on how to do that on her website as well as handouts on pacing, orthostatic intolerance, etc. The biggest mistake people make with exercise is pushing forward too fast. Once you establish what you can do safely with no increase in resting heart rate or decrease in heart rate variability then try to up the duration by 10%. Only after significantly increasing the duration do you attempt to increase the intensity. It’s all about baby steps.
Because hormetic stressors tax the body it is possible to overdo them. Hormetic stressors should be started and built up slowly, be done at levels that tax the system but do not overwhelm it, and should be done intermittently.
Of course, not all stressors are good. Being exposed to toxic chemicals, for instance, does not make you stronger: it just makes you sicker. Being exposed to white flour stresses your system but does not make it stronger.
Six Hormetic Stressors
Photobiomodulation
Red light therapy can perk up the mitochondria.
Dr. Stein reported that photobiomodulation using red and/or infrared light therapy was one of the things that aided her recovery and has helped her patients with pain, energy, sleep and mood. She started using it in 2010 and found that it slowly helped.
Specific light wavelengths that are absorbed by our mitochondria are needed: visible red light between 600 and 700 nm (630 & 660 nm are the most commonly studied) and invisible infrared light between 700 and 1000 nm (800 to 930 nm are most commonly studied). The wavelengths increase ATP levels by enhancing an enzyme found in the electron transport chain called cytochrome oxidase.
The increased ATP production comes at a cost: it causes free radicals (reactive oxygen species) levels to rise. (This is the hormesis part.) That, however, triggers the antioxidant response element, which strengthens our antioxidant system. Instead of taking antioxidants (which studies suggest are not helpful), the body’s internal antioxidant machinery is strengthened.
While Dr. Stein acknowledges that mitochondrial support can be helpful, she also notes that supplements and drugs like glucosamine and berberine, and the diabetes drug metformin that block mitochondrial production have a hormetic effect, as they result in the production of more mitochondria and are considered longevity factors.
I noted that many studies have found increased oxidative stress (free radicals) in ME/CFS. This could be happening because exhausted T-cells throw out lots of free radicals. (So do damaged mitochondria and cells that have not been cleared out by autophagy). Dr Stein noted that if the problem with T-cells is exhaustion, then maybe helping their mitochondria to function better would help reduce the oxidative stress.
Dr. Stein then suggested the low energy levels could be impairing sleep and interfering with the vital repair processes that occur during sleep. (She has found photobiomodulation (red/infrared light therapy) can help with sleep in ME/CFS, and uses red/infrared light therapy before going to sleep.
She suggests reading Ari Whitten’s Red Light Therapy book ($2.99 Kindle).
Intermittent Fasting (Metabolic Flexibility)
Because we evolved in times when food wasn’t always available, our bodies have developed metabolic flexibility: that is, we burn carbohydrates for immediate energy when food is available, and store energy in the form of fats which we use to power our bodies when food is not available.
Most of us, healthy or ill, are in poor metabolic health. We’re overweight, have some form of insulin resistance, have high cholesterol, high blood pressure, high triglycerides – all of which increase our risk of things like diabetes, cancer, dementia and heart disease.
Intermittent fasting – fasting for 12 hours or more a day (14-16 hours is best), aiming for 4-5 times a week – helps protect from those things. During this period the body begins breaking down fats instead of sugars, repair bad cells, clearing out garbage from the brain, fat from the liver, etc.
Like all these practices, you start low and build up. Maybe you start at 10 hours of fasting (10 pm to 8 am) a day and then add half an hour at a time. The ideal is not to eat 3 hours before bedtime. It’s best to have a big protein, fat, and calorie meal earlier in the day.
Dr. Stein noted that the drug Rapamycin enhances all these hormetic (also known as longevity-enhancing) pathways. She believes the most reliable, cheapest and safest ways to improve them, though, is through natural means: intermittent light, heat and cold exposure, oxygen deprivation, fasting, etc.
(Dr. Courtney Craig has found intermittent fasting helpful for her ME/CFS.
THE GIST
- Dr. Eleanor Stein MD is an ME/CFS expert with a difference. About 30 years ago, she came down with ME/CFS/FM and multiple chemical sensitivities (MCS). As a doctor, she’s worked with over 1,000 ME/CFS, FM, and Environmental Illness patients over the past 20 years. (She is no longer practicing.)
- It took her over 25 years to do it, but she’s also a recovered person with ME/CFS. In the second of our “What’s Up Doc?” series exploring what’s exciting ME/CFS/FM and long-COVID doctors and researchers, I had to ask Dr. Stein first about her recovery. (see the blog for the Zoom interview with Dr. Stein).
- After a patient with very severe chemical sensitivities improved dramatically using Annie Hopper’s Dyn , she tried it. Within a week her chemical sensitivities were down by 80% and are no longer a problem. Her road to ME/CFS recovery was much longer. Pacing, an autoimmune diet (no dairy, eggs, legumes, grains, nuts or seeds), photobiomodulation (red/infrared light therapy), sauna, and years doing neuroplasticity work all came together at some point and she quickly regained her health. That was several years ago and she remains in good health today.
- Her research into chronic stress has indicated that how much stress we feel is a function not of our situations but how we perceive them. She’s found gratitude practices particularly helpful for her.
- She’s recently been focused on something called hormesis. Hormesis is a process by which cells get stronger after being exposed to low levels of stress. A key factor regarding hormetic stressors is that they are natural; i.e. for the most part, they are stressors such as occasional lack of food, extremes of heat, and cold that our bodies are evolutionarily adapted to and may even require for optimum health.
- Because hormetic stressors tax the body it is possible to overdo them. Hormetic stressors should be started and built up slowly, be done at levels that tax the system but do not overwhelm it, and should be done intermittently.
- Photobiomodulation – Dr. Stein first talked about photobiomodulation which uses red/infrared light to increase mitochondrial production. This practice employs specific wavelengths of light (visible red light between 600 and 700 nm (630 & 660 nm are the most commonly studied) and invisible infrared light between 700 and 1000 nm (800 to 930 nm are most commonly studied) that increase ATP levels.
- The increased ATP production comes at a cost: it causes free radicals (reactive oxygen species) levels to rise. (This is the hormesis part.) That, however, triggers the antioxidant response element, which strengthens our antioxidant systems. Dr. Stein has found that red/infrared light therapy has helped her patients with energy, sleep and pain. (She uses it before bed.) She suggested reading Ari Whitten’s Red Light Therapy book ($2.99 Kindle).
- Intermittent fasting (going 12 or more hours without eating) causes our cells to start breaking down fats instead of sugars, and the body to repair bad cells, clear out garbage from the brain, fat from the liver, etc. One key to intermittent fasting is start slow – add 30 minutes of fast time to your usual schedule and work up from there. Fourteen to 16 hours is best but going 12 hours without food a couple of times a week helps. Try to not eat 3 hours before going to bed.
- Heat Exposure – Saunas increase metabolism, detoxify the body, produce feel-good endorphins, and help with heat intolerance. Ten minutes of sweating time is best but, of course, be sure to slowly build up. Fluid load with electrolytes a half an hour before the sauna, and then during it as well.
- Cold Exposure – Cold exposure increases one’s metabolism, tells the cells to build more mitochondria, and increases their ATP production. It can be done in the bath, shower, or outside by wearing less clothing. Extreme cold exposure only needs to be done for a few minutes.
- Breathing – temporarily reducing oxygen levels using breathwork can make the body increase oxygen saturation and increase CO2 levels. (Some people with ME/CFS/FM and long COVID hyperventilate thereby reducing CO2 levels).
- Hormetic Foods – Different colors of vegetables and fruits contain different phytonutrients that slightly stress our cells and cause our antioxidant systems to rev up. Because studies have not found that taking antioxidants is beneficial – Dr. Stein suggests eating different colored fruits and vegetables to naturally boost our antioxidant systems. She tries to eat an unusual food every week.
- Conclusion -In Dr. Stein’s experience red light/infrared therapy and sauna can be helpful with illnesses like ME/CFS/FM and long COVID. While a lot of research has been done on the other practices (heat, cold, breathing, intermittent fasting, foods), she doesn’t know how much people with these diseases benefit from them.
- Hormetic stressors don’t appear likely to cure your ME/CFS/FM or long COVID, but they are not “woo-woo” ideas, either. As Dr. Stein said, most have been well-studied and have a solid grounding in the scientific literature.
- Dr. Stein’s website has many free resources, a once-a-month newsletter, and a new subscription membership course called Live! with Dr. Stein that features Dr. Stein interacting with a variety of experts. Past course offerings have included treating Lyme Disease, chronic inflammation, Recovery with Raelen Aegle, managing orthostatic intolerance (Peter Rowe), chronic disease and aging, and more. Future sessions include improving sleep, craniocervical issues, healing environmental sensitivities and using hydrogen-rich water. A low-income option is available.
- Get Dr. Stein’s handout on hormesis by going here. / Check out Dr. Stein’s Healing Through Neuroplasticity Course
- Coming up on Health Rising – blogs on photobiomodulation, cold and heat stress, and breathing
Health Rising is not affiliated with or receive funding from Dr. Stein or her courses.
Heat Exposure
A sauna can boost feel-good chemicals called endorphins, the metabolism, increase oxygen utilization, and help with heat intolerance.
Sauna is another hormetic practice that stresses and rejuvenates. Infrared saunas are all the rage now, but Dr. Stein believes the key is getting you to sweat – and traditional rock/steam saunas do that very well. In her experience (and mine), it’s when you’re sweating that the endorphins – those feel-good chemicals – start to show up.
She noted that Susanna Soberg Ph.D. (in metabolism :)), who is a world expert on heat and cold exposure, has found that sauna 4 to 7 times a week – each time with 10 minutes of active sweating – is best (presumably for healthy people). Obviously, people with ME/CFS/FM/long COVID would want to start lower. Dr. Stein says a couple of times a week works for her.
The sweating response is similar to what happens during exercise: your heart speeds up and your blood pressure goes up. It’s also a great detoxifier and can help with heat intolerance. If you can’t exercise, sauna might be an option. If you do sauna, be sure to fluid load with electrolytes a half an hour before the sauna, and then during it as well.
Decades ago, I did the sauna program at Dr. Rea’s in Dallas. I couldn’t handle the exercise portion (bicycling), but I did the sauna program and really pushed it. It was miserable throughout the couple of weeks I was there, but a couple of days later driving home, suddenly I felt better than I had in years.
I found saunas difficult to tolerate at times but they also produced some real highs as well.
Cold Exposure
You don’t have to dunk yourself in an ice bath to get benefits
Being exposed to cold temperatures is another hormetic practice that can be helpful. (There’s been quite a bit of interest in cryotherapy in fibromyalgia – a blog is coming up on that.) The benefits of cold exposure are similar to those of heat exposure. Cold exposure tells your body to up its metabolism, build more mitochondria and increase their output.
Instead of completely bundling up, Dr. Stein is going out into the cold Canadian climate without as many layers. However you do it – a cold shower or bath or exposure to the elements – the key is to activate the shivering response.
Brief exposures to the cold – a couple of minutes – are enough. They also provide a good opportunity to train your breathing and train yourself to create calmness even in adverse circumstances.
Breathing
Studies suggest that some of us are hyperventilating – probably in an attempt to get more oxygen to our cells and increase our energy levels. David Systrom’s invasive exercise studies indicate that many people with ME/CFS or long COVID are having trouble getting oxygen to their tissues during exercise.
He’s also finding that some people have hypocapnia – low carbon dioxide levels. When that happens, though, we breathe out too much carbon dioxide, leaving our body more alkaline which then makes it more difficult for the oxygen to leave the hemoglobin and move into our cells.
That increases the air hunger causing us to hyperventilate more, and on and on. Holding your breath – reducing your oxygen levels – can increase your carbon dioxide levels. Deep breathing is not where it’s at, though. The best and most efficient breathing is done quietly and shallowly.
Dr. Stein is not an expert on breathing, but she recommended Patrick Mchugh and Ari Whitten’s breathing module to optimize breathing. David Putrino’s MEO course for people with long COVID also focuses on breathing.
Hormetic Foods
Eating a variety of colored vegetables and fruits helps.
While vegetables and fruits contain lots of nutrients, they also contain phytonutrients that are just a little bit toxic and produce some hormetic stress. Different colors of vegetables and fruits contain different phytonutrients, so it’s a good idea take in a range of them. Because these phytonutrients trigger our antioxidant systems to rev up – and because studies have not borne out that taking antioxidants works – Dr. Stein suggests eating a wide variety of different colored fruits and vegetables to naturally boost your antioxidant system. When she goes shopping, she tries to buy one food she usually doesn’t eat.
Conclusion
I asked Dr. Stein how effective these practices might be for someone with ME/CFS, FM and/or long COVID. Based on her experience with patients over the past 25 years (she’s no longer practicing), red light/infrared therapy and sauna can be helpful.
A lot of research has been done on the other practices (heat, cold, breathing, intermittent fasting, foods), but she doesn’t know how much people with these diseases benefit from them.
Hormetic stressors don’t appear likely to cure your ME/CFS/FM or long COVID, but they are not “woo-woo” ideas, either. As Dr. Stein said, most have been well-studied and have a solid grounding in the scientific literature.
Dr. Stein’s website has many free resources, a once-a-month newsletter, and a new subscription membership course called Live! with Dr. Stein that features Dr. Stein interacting with a variety of experts. Past course offerings have included treating Lyme Disease, chronic inflammation, Recovery with Raelen Aegle, managing orthostatic intolerance (Peter Rowe), chronic disease and aging, and more. Future sessions include improving sleep, craniocervical issues, healing environmental sensitivities and using hydrogen-rich water. A low-income option is available.
- Get Dr. Stein’s handout on hormesis by going here.
- Check out Dr. Stein’s Healing Through Neuroplasticity Course
- Coming up on Health Rising – blogs on photobiomodulation, cold and heat stress, and breathing
- Health Rising is not affiliated with or receive funding from Dr. Stein or her courses.
Thanks! Great to see an article on Hormesis. This has been a real interest and focus of mine, and I do think it can be relevant to pwME if carefully adapted to our wonky and weakened stress response. However when I’m describing ME to the uninitiated I ask if they are familiar with the concept of hormesis. If they are, I explain that this is exactly the nature of ME, that our systems fail to respond to measured healthy stresses in a way that leads to conditioning as in healthy folk. Instead it leads to inflammation and illness. But it may be a matter of degree. We just need to be so careful and adjust the stress according to our fluctuating condition.
I practice red light therapy, take berberine, eat lots of veggies, and even sometimes practice a very wimpy version of cold exposure. Interestingly I used to be very into Wim Hof, practicing his methods daily. But this is actually the same period during which I became progressively sicker with ME. Perhaps I had the balance wrong and was pushing too hard. I still do cold water immersion when I’m feeling up to it, usually in summer. But I think the most important words in the article for anyone with ME are ‘baby steps’.
Personally I think hormesis in ME is probably most useful as a test to see if one is improving from other therapies. If we benefit from it that’s a very encouraging sign to cautiously continue.
But lastly, one of the most surprising statements in this article, made a couple times, was about studies showing that taking antioxidants does not help. I was wondering if anyone knows whether this applies to berries and other antioxidant-rich foods/herbs, or just antioxidants in supplement form. If this is true then it’s a real ‘back to the drawing board’ moment for me that’s for sure! Still I like the idea of revving up our innate antioxidant generating capacity…
Geoff, your question about antioxidants. It is only supplemental antioxidants have potentially have harmful effects. When antioxidants occur naturally I’m not aware of any problems. And the bonus is that the same foods that contain anti-oxidants often also contain phytonutrients that are hormetic stressors. These lead to increases in our natural antioxidant pathways like NRF2.
Hi, Could you please name the antioxidants that studies show are not helpful or potentially harmful? Also could you cite the studies?
Thanks.
Lisa great question. I’m in the wilds of Labrador at the moment so can give a more fulsome answer in future.
I first wrote about this many years ago about calcium – that taking too much can do more harm than good. https://pubmed.ncbi.nlm.nih.gov/23381719/
Another nutrient that got the attention at the time was vitamin E causing increased heart failure among smokers, just the people we would think would benefit most. https://newsnetwork.mayoclinic.org/discussion/possible-risks-associated-with-taking-vitamin-e-supplements/
There is a difference between eating foods high in nutrients (generally helpful) and taking them as supplements (sometimes not helpful). For example although many of us are depleted in Vitamin D, vitamin D supplements do not improve health https://www.nejm.org/doi/full/10.1056/NEJMe2205993
People in certain spaces are extrapolating this to supplements in general and it is something I will be learning more about over time.
Great article. Dr Stein is a truly amazing and very caring person! She has helped everyone in the mecfs community greatly and continues to help as much as she can! Very happy for your recovery story
Geoff,can I ask why you made the choice on berberine?
I also began taking berberine on a hunch that it’s known to kill h.pylori.
My illness began with an
“Infection” of unknown origin proceeded by an ulcer in 1981
When I couldn’t get any answers or help around here, I decided to call the man himself…Dr.Barry Marshall. He stated to me that they are pretty sure other unknown pathogens after h.pylori will be discovered.
That was enough for me to try berberine…and yes…it’s helping in a positive way
Hey Geoff! An intersting coincidence: I got full blown ME/CFS following 2 years of doing WHM daily but mainly the breathing, and the cold immersion only during the period directly before I got seriously ill.
Thanks for your response, that’s both interesting and encouraging!
I would like to point out one thing. It concerns cold therapy. For example, take a cold shower or bath. This is not suitable for everyone. Your vascular system responds to cold by constricting. This can be dangerous and trigger a heart attack. A doctor’s advice may be advisable
The CDC’s Third Report on Human Exposure to Environment Chemicals provides information about 148 toxic chemicals and is the most extensive
assessment ever of exposure of the U.S. population to environmental chemicals.
These persistent chemicals are stored in body fat and can be released by rapid weight loss, high heat exposure, severe stress, exercise and concurrent disease that may cause weight loss.
Once the chemicals are released into the blood stream, they can recirculate and settle in the brain, where every neuron has a fatty sheath or depending on the exposure, settle in your kidneys (like mercury) or in your liver or reproductive system, which is also lipophilic.
It is very bad advice to suggest fasting or any type of rapid weight loss program to ME/CFS patients.
Red light therapy can also be contra-indicated for certain patients like those with glaucoma.
And while having an improved attitude may be helpful, it is very hard to do this with any modality when you are desperately sick.
Functional cures of ME/CFS abound and at one time, Dr. Cheney said I had a functional cure from cell signaling factors which allowed me to work, travel and even play golf.
This all disappeared, however, when I had two bouts of Covid in less than a year. I can’t emphasize enough that Covid is “not” ME/CFS. The symptoms of Covid can be immediately life-threatening. Yes, PEM is one thing in common to the two conditions, but it is by no means the defining symptom of a serious case of Long Covid.
I
Weight loss can be one of the symptoms of ME too, How do you explain this?
Malabsorption. Try using digestive enzymes to get the nutrition out of your food.
gastroparesis (especially in EDS patients)
catabolic state as seen in patients with multiple infections
I would never do longer-term fasting for just that reason. I think its too dangerous and I wonder if I did myself some harm with some rapid weight loss a couple of years ago. Intermittent fasting I’m personally not worried about. I’m giving it a try but taking it easy.
I had a temporary reversal when i stopped eating in hospital….only to relapse when I began to eat again.
I was put on 10 days bedrest in hospital for a herniated disc in my lower back….after 5 days of not eating, my back pain was gone…I pulled the pic line out of my arm and left the hospital under my own power
I tried to fast 2 more times (8days, then 9) but nothing happened. I think I too did damage
….after a week of being home from hospital my skin began to bleed tiny spots all over…a week after the bleeding started, the spots all turned into moles….it’s like I aged in one week….I also ended up with 2 inch lumps under my skin.ive been stuck ever since WEIRD
This leads me to believe this has something to do with metabolics
The hallmark of Long COVID seems to be that it manifests differently in different people. There are over 200 documented symptoms of Long COVID. I’m entering my 5th year with it and for me the worst symptoms, by far, are the profound fatigue, cognitive dysfunction, and PEM.
Becky I couldn’t agree more. I advocate baby steps with every strategy so that people can assess if it helping or being counterproductive.
Please, enough with this Cort. You know most ME patients are not unhealthy in the ways you describe (overweight, etc).
It’s entirely possible, indeed essential, to remain upbeat & retain hope in the midst of being clear-eyed & brutally realistic about one’s circumstances. It’s been dubbed the Stockdale paradox. Not all can do it, but for many/most with ME, it’s an essential skill we need until there’s a true breakthrough.
In short: the mind is necessary but not sufficient. Like a pilot in the cockpit: they do not single-handedly fly the passengers. Rather, it’s an engineered system they’ve learned to work with.
Hormesis and many other things can affect our naturally ‘engineered’ system. And yes we should be open-minded to surprising things that may shift the system into a better state. In other words: use our minds to try to *solve the puzzle*. That’s positive thinking.
Again, please stop crossing the line into woo, pop psychology, excessive conflicts-of-interest, etc.
Not sure where overweight came from but let me ask you this – if we’re going to look at this from an objective and really a scientific viewpoint doesn’t that require examining all the data available?
That data now includes hundreds of recovery stories using these techniques. (Check out Raelan’s and Dan Neuffer’s sites). Recently David Kaufman on Unraveled said he’d seen some amazing recoveries.
I’m sure there are 1000’s of people who didn’t recover using them (I am one of them). They are simply an option i.e.; Kaufman is not throwing away his medical toolkit because of them. Note that Health Rising has dozens of recovery stories using other means as well and most of our stories do not involve neuroplasticity.
Note, though, that while my current efforts at mind/body techniques haven’t been very successful, something like them played a huge role in my ability to get back and moving again early in my journey with ME/CFS/FM. I shudder to think where I might have been without it.
https://www.healthrising.org/blog/2020/02/28/est-landmark-education-fibromyalgia-chronic-fatigue-syndrome/
I made a decision a long time ago that I am not going to finish my time with Health Rising (whenever that occurs) knowing that for reasons of expediency or to avoid controversy or whatever, I left something on the table that could have helped someone. In other words I decided that I was not going to play favorites.
For the vast majority of us I think it’s going to take getting at the core of this illness and finding other kinds of treatments that will help but if Health Rising is to be true to its commitment to provide every (reasonable) possible option – it can’t ignore these treatment options.
That said, my passion is the science and HR will always be heavily focused on that.
As to conflict of interest if we are affiliated with an organization we state so and if we are not I try to remember to state that as well. Hopefully most people will trust that that is so. 🙂
Thanks for this fascinating interview with Dr. Stein. She is a clear-eyed, data driven phenomenologist and is always looking critically at the ME/CFS literature , broad medical/scientific literature as well as experiential data. She is carrying on a grand tradition of medical science by
prioritizing scientific studies while listening carefully to her patients and learning from them. No woo woo here. Just good, solid medicine and fresh, inquisitive thinking that is essential to move the needle forward in the ME/CFS space.
Cort, thank you for all you do to bring us such a wide variety of treatment options and information.
It’s simply amazing to me all the connections you have made.
I’m hoping someday I will something on your web pages that will help me and others.
Please keep up the great work!
Briefly in reply:
* I was in part reacting to the paragraph of your article beginning with “Most of us, healthy or ill, are in poor metabolic health. We’re overweight, …”.
* Wrt conflicts of interest, I was referring to Dr. Stein’s. I guess it’s fairly clear that she’s selling services, but I want to remind that there exist in the universe at least a few folks out there who have zero conflict (i.e., are independently wealthy or make their living in an unrelated way) but for a genuine stake (personal/friend/family) to see this puzzle solved.
“a few folks out there who have zero conflict (i.e., are independently wealthy or make their living in an unrelated way) but for a genuine stake (personal/friend/family) to see this puzzle solved.” – a good for them! 🙂
Overweight? Many patiënts i know are underweight even when they eat good normal appetite. How can we explain this? Wow subgroups……
I think you have ME patiënts with abnormal high fast autonomic nervous system (underweight?) and slow autonomic nervous system (overweight?)……
Wow! Selling something?!? That is so not Dr Stein. Dr Stein has always made it a priority to help out the ME/CFS community, not just her patients, to the best of her ability, even when she was ill herself. She has led group sessions in the town she practiced in, produced handbooks, invited speakers to present in her community, all while also seeing desperately ill patients one-on-one. She has made her own resources like her sauna available to her patients, in her own home. Have you been to her website? Yes, some parts are behind a pay wall, but there are tons of resources available for free.
She is an ME/CFS hero, and deserves to be treated as such.
Yes, Dr. Stein is an ME hero – she has very generously provided tons of information over many years either for free, or very nominal rates – and continues to do so.
I don’t understand the expectation that experts should provide everything for free – people doing this kind of work – and it is work – have expenses to produce this work and/or need to make a living. It’s a reasonable thing.
Though I live in the next province over from dr. Stein,….the times that I did reach out to her via email I was pleasantly surprised how quickly she responded back and her willingness to try helping me even if it was by email.
I couldn’t go see her even if I wanted to as each province has their own system that can’t be accessed unless you have a referral and even then the referral never gets approved to send a person “out of province”…..it’s a system that is very broken long before the immigration influx began…..now we’re all just sitting 🦆 ducks
That basically referred to the general population although there is evidence on increased weight in fibromyalgia. As to being underweight I don’t know but that was a big problem for me early in my illness (I was diagnosed (incorrectly) as having anorexia nervosa) and I still don’t know what was going on there.
After 40 years, I continue to get a different diognosis every time i go to a specialist.
Is it even possible that a person with this illness can have that many recognizable diseases?
I suppose if you have upwards of 150 symptoms
I think what Vijay is saying, and I agree, is that people need to be warned about the potential hazards of some of these suggestions. For long time readers and sufferers this is not as much of an issue but there are new people reading all the time and they don’t know what we know and likely don’t have a medical background that allows them to decide whether something is appropriate. My suggestion would be to put a disclaimer somewhere on articles such as this one, to the effect of- this is one person’s personal experience and your experience will likely be different. Please do your own research before trying any suggestions. This goes for some of your articles as well that mention “new” possible treatments that people could access online without a Dr. Desperate people will try anything and whether it may be harmful or not for them personally is unknown.
My read of what Vijay is saying is that he doesn’t want to hear about mind/body efforts. 🙂
Dr. Stein had ME/CFS for a long time and she’s treated thousands of patients, and knows this subject very well; i.e., she’s not someone who just had some good idea out of the blue. Her suggestions don’t just reflect her experience but the experiences of people she’s treated. That, for me, confers appropriateness. (I would say the same thing about any ME/CFS/FM expert). Of course, we know that people can react to treatments in a wide variety of ways which is why I always try to note to “Go low and go slow”.
I will take it on board, particularly with recovery stories where we are talking about one person’s experience, to note that this is this person’s personal experience and may not (probably will not) reflect yours and to be wary.
I agree with you. We are all so different and respond to different strategies. Something that might help one person might cause a setback in someone else. Do your own research, talk to your health care team and proceed carefully.
I am ambvivilant (?) on neuroplasticity as in DNRS and NLP, Lightening process and all. I’m all in for neuroplasticity when it comes to stroke or central nervous system damages. I believe that our brain is excellent in finding other ways to execute limb movement etc. But even that is individual, the damage is always affecting differently and all brains work their own way as everyone is developing differently during life.
I usually, when reading abt DNRS’ish stuff go on trying more to get better, doing to much and also blame myself for my unability to recover as I ought to do. Which of course not is at all helpful. As a large proportion of my ME probably is caused by exhaution disorder and I got that already 2003 I’ve processed alot of subject and shifted my mind many times over. One thing that I find helpful is: You need to feel good (as good as possible) to feel better/get better. I guess that is my take on psykobiosocial.
And in that it is imperial to do what you can do (keep as active as you can without getting worse) and to recognize that “life is what going on and do your life (the one going on any way 😉 ) as “lifey” as you can.
You can think of it like you’ve fallen into a pit, bring a comfy blankett, something nice to eat, and a good movie along. Rest, and everytime you are doing small attempts to get out of there you bring down some sand and you are each time standing on more sand and an inch closer to the ground above. Read this with an open mind, and with a will to understand, because it is something that is hard enough to decribe in swedish and almost impossible to translate the way I want to to english.
But this is my thinking when I’m in a good place, I do often get confused and also angry that despite doing everything right I’m not getting healthy again!
Kalsa, well said, whole thing.. especially–
“Bring a blanket when we in the pit.”
The problems with “cures” is that we have no idea if all these people had the same thing.
Dr. Jacob Tietelbaum, one of the earlier pioneers in ME/CFS and the author of “Fatigued to Fantastic” said that the average CFS patient gains 30 pounds over the course of the illness perhaps from inactivity, thyroid involvement or malabsorption of foods.
My own experience with rapid weight loss came when I was trying to deal with severe multiple chemical sensitivity. I went on an allergy rotation diet where you eat only one food at a meal and the food groups have to be different. I lost 25 pounds very quickly and became sicker and sicker. I looked like someone from a starving nation.
The symptoms of MCS really didn’t improve either especially the head ringing, infections and horrible headaches which were some of my worst early symptoms. Yes, I had PEM also but the other symptoms were worse.
Flash forward some years, I decided to go on Weight Watchers, which I think is a very reasonable and healthy diet. I lost 15 pounds, but then I got a horrible infection in my right leg which started with a tiny cut. The infection spread into cellulitis and the doctors could not figure out what was causing the infection. Finally after 5 months of painful wound debridement every week, they determined it was E-coli and gave me the appropriate antibiotic. I was left with an ugly scar, but I have my leg.
Why did I have these reactions to weight loss? I believe that one of the causes of my ME/CFS was exposure to flea spray in our home as well as the virus HHV6A. Chlorpyrifos metabolites can be stored in body fat and the pesticide has also been shown to cause accumulation of mercury (in animal studies).
If these toxins are released through rapid weight loss, they can impair the immune system and allow viruses like HHV6 A and EBV as well as bacteria to flourish.
POPs or persistent organic pollutants are ubiquitous in our environment, homes, offices, etc. This is why the CDC is monitoring them. To date, none of the researchers have addressed these as an important factor in ME/CFS.
For 20 years, I served as a co-chair of the National Institute of Environmental Health Sciences’ Public Interest Partners. Partners represented national health organizations for cancer, autoimmune disease, lung disease, birth defects, neurodevelopmental problems, etc. There is evidence that each of these health conditions may be caused (in some cases) by toxic environmental exposures.
Yes Betty….we’ve become chemically sensitive because our barrels are over full.
It’s Thereon Randall’s take
I’ve worked in clouds of lacquer paints, desiel, LEADED gasoline….the list goes on and on.
Then they place mercury in our mouths,in our bodies with childhood vaccines.mercury being one of the most toxic element known!
Cort, Dr. Kaufman clarified his view on brain retraining and he has never seen it cure *any* of his patients, though did not discredit others who have claimed it cured them.
Full conversation (from the comments in this post on Unraveled: https://www.patreon.com/posts/treatment-of-107572569):
Me: “I’ve heard you mention that brain retraining can be helpful, and you always say this with reference to a set of patients that have reported success with it. When you say ‘brain retraining’, are you referring to any program that involves a change in thoughts, values, and outlook on your illness, or are you referring to specific study-backed protocols? Do you have insight into brain retraining beyond that? Would you expect brain retraining to only help a subset of patients, the subset where the ME/CFS is not completely physiological (i.e. it is partly psychosomatic or related to neural malfunctioning)? Candidly, some of the programs feel like snake oil, given the way they are marketed and who they are marketed by. And if an issue is caused by a virus, which then feeds into a vicious cycle of other physiological symptoms (the septad, etc), it’s hard to believe brain retraining would address any of that.”
Dr. Kaufman: “agree with much of what you say. When we discuss brain training, and when we recommend it, it is only at a certain point in the trajectory of their illness – when they are improving. I firmly believe the loss of quality and functionality of life for any period of time is not easy to come to terms with and I see some struggle with a type of PTSD from the years of illness, and the years of being gaslit. THAT is where I think these limbic retraining programs play a role.”
Me: “Thank you for the quick response! I interpret this as saying that brain retraining can be helpful to address issues attendant w/ chronic illness but does not address the underlying problem/cause that is the source of the chronic illness. I know I’m trying to force a response here, but how do you explain people who claim that they have gone into remission from brain retraining? For example, I’ve read/seen multiple accounts of people with extreme ME/CFS that claimed they recovered after using the “Lightning Process”, which is a brain retraining program.”
Dr. Kaufman: “I can’t speak to those who say it cured their core MECFS symptoms. Certainly none of my patients have experienced that. Some say they felt more calm while/after doing it. But thats the extent of it. It is helpful, as I said, after the physical symptoms have improved where they have regained some of their life back.”
I was scheduled to see Dr. Kaufman when I was bed-bound. His team made a scheduling error and bumped me back a couple months, which was agonizing at the time as I was desperate to heal. In the interim, I did the ANS rewire program and, combined with a number of other techniques I was exploring (breathwork, etc.), started to improve to the point I realized this was ticket out.
I cancelled my appt with Kaufman and have since very nearly fully recovered. Had I seen him, he would not be able to say his patients had never been cured by brain retraining. I wonder how many EX-patients of his have recovered that he is unaware of?
Thanks for sharing your experience, Aaron.
Some questions to help me understand different subsets of patients and what treatments can best help my wife:
1. Was your ME/CFS onset suddenly or gradually?
2. Were there any clear triggers for your ME/CFS?
I’m trying to figure out if I should prioritise psychological/brain-retraining or pharmacological treatments for my wife. She is severe: can only whisper 100-500 words a day, ear plugs + ear muffs, cannot take in visual stimulation such as a ceiling fan or even looking at herself writing.
So sorry, Chris. I was in a very similar condition as your wife. It’s awful.
Mine was brought on a by a Covid infection and I would probably describe the onset as gradual over about a week but with sudden dips into states like you describe. I was in that condition for many months, and more or less bedbound for over a year. I know there are many others who who have been bedbound for much longer.
What I experienced, and what you describe, sounds very much like what I and others believe is a neurological, nervous-system-based, “acquired brain injury.” Despite what some people may tell you, I believe this is 100% heal-able. I’m one example and there are many others. I don’t know anyone who has recovered purely from pharmacological treatments, but I know many who have from brain-retraining.
At some point, I intend to write a book about this. I’m happy to continue this conversation and share resources over email if you would like: digaaron at gmail dot com
Thanks Aaron. I will be reaching out!
You’ve got IT Cort! Please keep up the great research and reporting!!
Very well put. Thank you and thank you for running HR. We must not ignore the voice of the recovered. You’re right, there are far too many people who claim these methods to be useful for them to be ignored.
I know just what you mean Vijay, and it bothers me too when I see these stories about people who think they have been cured by the power of their minds, with a few pseudoscientific bells and whistles like red light, popular diets like fasting, and buzzwords like neuroplasticity. I really don’t see how it’s any different from claiming we can be cured through CBT- that after all, is harnessing the power of the mind to cure an illness. Now, DNRS is a different method of harnessing the mind, but the rationale is still the same-the power of the mind can heal an ailing body. Surely, enough people have been sick with enough illnesses (not just ours) throughout history to see this is wishful thinking. Whenever I watch history documentaries about pilgrims going to shrines and praying for their illnesses to be taken from them, I think how helpless we are in the face of disease. Our minds cannot bring our bodies to heel and make them behave as we would wish, no matter how many times we say neuroplasticity. Of course, I don’t mean to impugn the good doctor. I think she is one of the lucky few of us that go into remission. I’m sure resting and destressing helps that (hormesis), but I still think of it as a spontaneous remission for unknown reasons.
I just want more stories of science and research and less about how if I just do the right thing with my mind our illness will go away.
Hello
I’m a male age 70. I’ve been trying to cope with CFS/ME/Fibro and its symptom craziness since 2009. Until a couple of years ago it wiped me out to the extent that I almost decided to end it all. Fortunately, the symptoms subsided enough for me to stay alive. Then, a couple of weeks ago it became a total nightmare again. Not thinking I would ever recover, I almost begged for death. Then, three days ago, when all seemed lost, I awoke feeling as fit as a fiddle. Obviously puzzled by this, I, at first, refused to get out of bed. (I’ve been bedbound for three years) I forced myself to move about and couldn’t believe it possible that I could function normally again. My wife was shocked and obviously so concerned she insisted I get back in bed, but I persevered and attempted to make my own breakfast. No trouble! I then climbed into our loft to erect an antenna I’d intended to do before I became ill, again, it was no trouble. I then decided it was pushing my bit of luck and climbed back in bed. I became very restless and just couldn’t lie there. I got up again and washed our SUV car. The car is a big one and I needed steps to reach the roof, again no trouble and I still feel well. I then did a couple of jobs in the garden and still felt okay. Night arrived and I slept a normal sleep, no waking up at all, and in the morning I felt refreshed. Something that hasn’t occurred since 2009. I’m now on my third day of feeling alive again. It has to be said that this sort of thing has occurred previously when I’ve been in a bad state with the illness, so it’s possible it was one of the tricks CFS/ME plays. That said, I also have heart failure that stops me from doing many things but my ticker didn’t complain at all. As you can imagine,, I’m totally mystified with this happening and terror stricken in case it’s just a sneaky CFS “glitch” and I end up bedridden again.
Well said Cort
WOW
WOW to Richard’s post
Richard—amazing!!!
Wow! Amazing story!! What a great read! You’ll be fine, stay strong!
As expected?! I relapsed, but I still feel better than I’ve done in years. Still able to function on a reasonable level. Not sleeping as long and I am no longer bedbound. Today, I’ve been in the garden and pulled a few weeds. Made my own breakfast without having to collapse a few minutes later. Something is definitely “different” I’m at a loss as to why things have changed and I’m wracking by brains to try and work out what could be behind it. If I come up with the answer, I’ll get straight back to the group.
hi Cort,
of topic…
is there some reasearch like the DecodeME research ik the UK. As large and as good as they are? even going to bedbound people to help? i found an update. there are many. is there something like this in the US? you cetainly must know or someone else? the update is:
https://www.decodeme.org.uk/approved-studies/
the DecodeME is worlds largest research on M on its own. they want to share there knowledge (it has taken many hurdles) and i am not shure anymore share there specimens i thought with worldwide bonafide rsearchers. there has to be some in the US? or is there simply no money and lays everything flat?
Thats a question I have is with me/cfs, we don’t get past the anaerobic glycolysis part of the krebs cycle. So can we coax our metabolism to enter into the fat burning phase without causing undo stress (PEM)?
Bailey, I have the same question. How can we know if our bodies have the capacity to respond positively to the hormetic stress or not. That is why caution is recommended.
Very good. I have terrible burning headaches so I cannot tolerate any heat and Raynauds so I cannot tolerate any cold. And completely exercise intolerance. So the fasting and diet approach is all I can apply.
Pockets of virus in the intestines of Long Covid patients?
Why hasn’t this been looked into before now?
https://www.medrxiv.org/content/10.1101/2024.07.18.24310647v1
“Conclusions: Our findings establish a syndrome mediated by persistent viral infection (SARS-CoV2 Persistent Intestinal Epithelial Syndrome (SPIES)). We hypothesize that persistent sparse infection drives ongoing immune signaling altering movement and function, creating epithelial and movement effects overlapping with DGBI and IBD.”
(pre-print, not peer-reviewed yet)
I’m using these strategies in my recovery and they do seem to be helping. Along with other things. However I seem to have reached a plateau so currently researching all the things I could try to improve further. DNRS, methylene blue, hyperbaric and more trauma therapies are some considerations. My pain and PRM is well controlled but my nervous system cannot tolerate stress which still really limits my functioning, particularly work.
Great to read that I’m on the right track and this article encourages me to stick with my regime
(Typing this from the infrared sauna, after which I’ll get under the cold shower)
When I read these stories, I never know what is the takeaway.
We have an individual here but it is unclear what she really had, what was the intensity of her illness (was she able to keep working all these years or not), what kind of environment she was in (toxic or not, help or gaslighting). And after 25 years (?!?) of diets, mind-techniques with fancy words, etc. she considers herself cured.
Don’t get me wrong, I am glad for her. But I also wonder, “how is this applicable to other patients?” Are we supposed to do yoga with parsley in our ears for 25 years to have some kind of life?
After 38 years with that illness I’m just relieved I don’t have another 25 years ahead of me to impose that crap upon myself.
You’re 100% right.
People that get better like to attribute it to things they tried.. but that’s not very strong evidence. Articles like this only give false hope to people who haven’t tried it all and minimizes the realness of this disease.
Don’t get me wrong, it’s fine to try things that are unlikely to harm and might help you even 5%. But don’t frame it like it will do much for the average patient.
Isa– thx for the laugh re yoga and vegetables in our ears!!!!
How else do we cope with our anger of our illness, humor is the only thing!. I have 30 years into it! Sucks, huh.
Published on July 28, 2024
https://www.mdpi.com/1422-0067/25/15/8245
“SARS-CoV-2 Rapidly Infects Peripheral Sensory and Autonomic Neurons, Contributing to Central Nervous System Neuroinvasion before Viremia”
Major points:
1. SARS-CoV-2 infects the peripheral nervous system (PNS) first, within 18 hours of exposure, long before symptoms and before entering the bloodstream, probably via the oropharynx.
2. The virus moves from the PNS to the central nervous system (CNS) using axonal transport.
3. This infectious process is independent of the ACE2 route and occurs before ACE2 involvement.
So if you don’t want to catch this virus, use your nose spray and wear a mask. But what do I know? The “pandemic is over” dontcha know.
I usually don’t comment and I’m usually a big fan of your articles. However this is a pretty big nothing-burger.
Yeah these kind of things can improve your life/illness slightly and maybe increase your chance of recovery by 0.1%, but they’re not a cure. So putting them in this light.. a doctor recommending them and showing anecdotes of people becoming better because of them.. I don’t think it’s good and I think it needs a way bigger disclaimer.
But thank you for your work, Cort!
Also whether you’re affiliated or not I also think it’s incredibly bad to promote these kind of paid brain training courses (lacking any real evidence) to desperate patients.
I thought maybe this was a fake version of the real site so I had to double check can’t believe they actually have story like this on here. WHF
Hey that’s fantastic! Glad it’s helping. I’m coming from that angle as well but the thing is berberine is also supposed to reduce neuro-inflammation, and kinds of other things. If it can be tolerated, it seems a good thing to try.
Great content, Cort. Dr. Stein is the first expert I found when I searched online for info about ME/CFS, having gotten that diagnosis in 2020 before understanding that I had long COVID. As the kids say these days, she “brings the receipts,” meaning she backs up the claims she makes with study reviews and citations. I took her Pathways to Improvement course and I learned a tremendous amount. It took longer for the lessons to sink in, because these diseases are so hard to understand until you crash enough times.
I watch Raelan Agle’s videos all the time. I have taken the Gupta program and Alex Howard’s Reset program. Have read lots of books including the Norman Doidge one. One thing can’t be denied – thousands of people are recovering, and without the use of prescription medications or medical treatments. For me personally, I want to fill my brain with their stories and their hope. If it all turns out to be placebo, who really cares as long as it might work?? My baseline has improved greatly in the past year by approaching it from this place of continuous hope and nervous system resetting (including some of the hormesis tools that Dr. Stein suggests: red light therapy and cold showers, in particular).
If anyone is interested, I have written about what has helped me in my Substack newsletter, The Tonic. I have a series on Recovery Tools. Here’s the first post I wrote on that (but there are four in the series): https://open.substack.com/pub/amythetonic/p/recovery-tools-part-1?r=o3zsi&utm_medium=ios
Cort, I totally agree with your approach here to present any and all info on people’s recoveries. It is more in line anyway with objective journalism. If anyone is disheartened by what they label as “woo woo,” they can choose not to read that one. But to me, thousands of “woo woo” stories can’t be a coincidence.
Hi everyone, great discussion.
Hormesis is the way that our body has evolved to adapt to changing conditions like amount of food, temperature, activity, gas levels like O2 and H2 and so on. Conditions change so we need these adaptive capacities to survive as a species. All living organisms (animals and plants) have developed ways to respond to their changing environments. We all have these capacities in every cell or we wouldn’t exist.
For otherwise healthy people, approaching rather than avoiding hormetic stressors is key to health and longevity. The research on this is very clear.
The question I ask myself is to what degree leveraging these capacities is possible or helpful for people with ME, especially the severely ill. This has yet to be determined and I’m raising these strategies, especially those that don’t involve exercise as possible tools for your consideration. Many people are already trying some of these and like me didn’t know they work through hormesis.
For those who are concerned about the side effects. I wonder if people experiencing severe side effects took the boot camp (AKA GET) approach – “no pain no gain”, “go hard or go home”. This approach has no place in the management of ME, FM or long COVID.
What I am suggesting is a controlled, careful increase in a stressor of your choice in an attempt to increase your body’s strength and resilience. You are in charge and you observe how your body responds to small incremental changes and decide whether to continue or not.
Examples of what I believe will be safe challenges include things like:
– increase the overnight fasting window by 10 or 15 minutes when able
– get out in the sun for a few more minutes/day than usual to take advantage of free red/IR light
– add one or two colorful foods to your daily diet when able.
– turn the water in the shower or bath a bit colder for the last minute of your bathing if able
I am confident mild and moderately ill people can find one or more of these strategies to increase their resilience so that when we are exposed to unexpected stressors we will be better able to cope with them.
I am unsure about the severely ill and would love to hear from some of you if you have been able to use any hormetic strategies effectively.
I’m traveling in Labrador, a remote area of Eastern Canada with no cell service. Please respond to this comment or email me directly if you want to share your experience and I’ll respond when able.
THANK YOU!!! I have found Hormesis techniques a great help. I initially found that Photobiomodulation was extremely helpful for healing a genetic skin condition (there are no specific treatments and antibiotics and steroids are the only approve drug). I found fasting and HBOT are also helpful. Hormesis can trigger healing of my skin within a few days, when drugs can take months.
It’s sad to read so many that are closed-minded. I just recently saw my neurologist (after a 10 yr hiatus… I needed a nerve test on a broken wrist injury). She finally agrees with me that my symptoms were definitely triggered by formaldehyde exposure. She now recommends all her patients to see a naturopath. She’s seen greater success with patients working “both sides” of medicine.
Maybe because my problems started with chemical triggers, I don’t tolerate drugs very well and find better results with more holistic treatments.
Thank you and keep up your amazing work.
Jaci, thanks for sharing your story. It might encourage others to try utilizing hormesis.
Hey! I’ve tried a lot of the suggestions here and while they unfortunately haven’t made me better, I completely understand that what works for one person may not work for another, so I’m glad for those that can use these methods to heal.
It makes me think about the idea that there are subsets of people with ME, and that possibly explaining why we see so many different paths to recovery. My feeling is the body is in the cell danger response and that different subsets of people have the same triggers and faulty mechanisms.
I fit into the subset of: severe (95% bedbound), ME, POTS, MCAS, possible hEDS, possible CCI, various gastrointestinal issues.
I’m thinking it would be interesting to know what subset others here fit into and whether these type of treatments work/ed for them or not – maybe we’ll even see a pattern will emerge in the comments?
As an aside, I tried a treatment called EPD (enzyme potentiated desensitisation) and it took me from moderate to severe. The logic of it was that it slightly tested the body in order to eventually build up resistance, but it floored me and I haven’t recovered since. Unfortunately almost every time I try and test my body with something it doesn’t like, I get worse.
So perhaps the idea works for some people and not others – again, maybe subsets of people can/can’t tolerate small provocations to the immune system etc.
I wonder if there are underlying autoimmune genetic mutations in some people and that’s why their body seems to be overly-reactive like mine is? And perhaps that’s why some have MCAS and others don’t. Interested to hear what others think too?
I’ve lost count of the different remedies I’ve tried in order to get some respite from this terrible disease. I should have known it was a waste of time and money once I also discovered DNA damage was involved. However, just in case I came across something that helped, I had to try. Eventually I discovered that the only thing that reduced the nightmare was D-Ribose powder. Occasionally I stop using it in order to check whether it’s still helping and, within a few hours, my condition worsens. I now ensure that it’s always added to my drinks! Sadly, now that suppliers of D-Ribose realise it’s helpful for CFS sufferers, they’ve banged up the price!
Hi Richard, wow that’s great to hear how well the d-ribose works for you! I’ve heard a lot of good things about it but haven’t tried it myself… I’m thinking I need to now – thank you!
I have recently tried cold showers (15-30 seconds daily) for a few days, inspired by this–and have crashed severely.
Sorry to hear!