Just about everyone with chronic fatigue syndrome (ME/CFS) has the sense that the disease has an astonishing ability to fall through the cracks. It’s a major disease that affects around a million people in the U.S. yet gets very little funding. It has no home at the NIH; it doesn’t fit it in any medical specialty (other than its own); patients can get astonishingly, jaw-droppingly ill; their functionality is far lower than in many other serious diseases, and patients often present with weird findings which doctors tell them they’ve never seen before.
Exercise is almost universally recommended, yet it’s like kryptonite for people with ME/CFS.
The biggest crack of all, though, may be the strange pattern of exercise intolerance found in the disease. Exercise, after all, is almost like a universal medicine. Moderate levels of exercise are recommended for just about every person and every chronic disease. Studies indicate that even “frail and very old adults” can benefit from exercise.
Research has demonstrated that virtually all individuals can benefit from regular physical activity, whether they participate in vigorous exercise or some type of moderate health-enhancing physical activity. Even among frail and very old adults, mobility and functioning can be improved through physical activity. U.S. Dept of Health and Human Services
Plus, stop exercising and you open yourself up to all sorts of problems. In fact, one study suggested that inactivity was as harmful as smoking. It’s no wonder that doctors just don’t get ME/CFS. The exercise problem flies in the face of just about everything they know and have experienced.
It flies in the face of what we know as well. I spent years trying again and again to vigorously exercise. The fact that it never worked and made me worse hardly dissuaded me. I was going to find a way to exercise. That, unfortunately, never happened.
The two-day exercise test pioneered by the Workwell Foundation for ME/CFS proved a boon for ME/CFS patients in its ability to capture what every person with ME/CFS knows but which few doctors get: exercise, particularly strenuous exercise, makes us worse.
Check out Health Rising’s first blog on Workwell’s findings – the 2009 “A Crack in the Foundation”
A big question confronting our disease is just how unique it is. Are we true outliers in the medical world? Or are there some exercise intolerant compadres out there that we can share our woes, or even better, our findings with?
Past studies indicate that people with heart failure, pulmonary hypertension, end-stage renal disease, cystic fibrosis, mild-moderate COPD, and stroke can all jump on a bike and exercise to exhaustion one day and then hop on the bike again the next day and generate the same amount of energy. It’s a remarkable thing, indeed, that even severely ill people can hammer themselves with exercise one day and then do the same the next day – with no diminishment in their ability to produce energy.
Take pulmonary hypertension (PH), a very, very serious disease (about 50% of patients die within five years) known to cause exercise intolerance. By narrowing the blood vessels in the lungs, PH makes it difficult to get oxygen to the tissues. The disease seems the very definition of exercise intolerance, yet, in contrast to ME/CFS, exercise itself does not damage people with PH. People with PH can exercise to exhaustion one day and then do the same the next day without impairment.
These findings, indicating that even people with severe diseases can reproduce their energy production results on the second day of a maximal exercise test, are so consistent that, outside of ME/CFS, two-day exercise studies appear to have been largely abandoned. The last non-ME/CFS two-day exercise study appears to have been done in 2004, and most date from the 80’s and 90’s.
They were relics of the past until Workwell brought them back into the medical field with their ME/CFS studies about ten years ago. Since then, Workwell in California, Betsy Keller at Cornell, Katrina Lien in Norway, David Patrick in British Columbia, Lynette Hodges in New Zealand and others have been conducting 2-day CPET studies in ME/CFS. Maureen Hanson at Cornell is currently including a 2-day maximal exercise test in her NIH-funded ME/CFS center work.
Most of the studies have examined the performance of ME/CFS patients vs. healthy controls, but two small studies/case reports which included other fatiguing diseases have given us another look at the crucial question of how unique the exercise intolerance in ME/CFS is.
The most recent study is the Larson/Workwell case-series that compared the results of a two-day maximal CPET test in six women (matched for age and body mass index).
The Larson-Workwell Case Reports
The six women included a sedentary but healthy person without fatigue, an active person without fatigue, a person with multiple sclerosis (MS), a person with HIV, and two people with ME/CFS – a lower functioning person (low energy production; low VO2 max) and a higher functioning individual (higher energy production; high VO2 max).
Both the MS and HIV patients experienced high levels of fatigue, but both were able to duplicate their levels of energy production on the second exercise test. In fact, the active healthy person and the MS and HIV patients all significantly improved their ability to exercise on the second test (their energy consumption at anaerobic threshold increased).
Not so with the two ME/CFS patients. Exercise one day whacked their ability to exercise the next day.
The exercise tests revealed some interesting trends. The higher level of functioning in the one patient didn’t protect her at all, as both she and the lower functioning patient displayed “substantial decreases in every variable at the anaerobic threshold” on their second CPET (ouch!).
This was despite the fact that she was truly much higher functioning than the lower functioning patient. Even on her second exercise test, the higher functioning patient produced more energy (oxygen consumption – 14.6) – than the lower functioning patient produced on her first exercise test (8.8).
Despite her improved level of functioning, the higher functioning person with ME/CFS suffered an even greater drop in energy production on the second exercise test – a remarkable 30% – than did the lower functioning person (16%). That demonstrated how difficult it is for even a higher functioning person to estimate how big of a metabolic hit exercise may incur for them.
The exercise scores of the lower functioning patient suggested that any activity more intense than slow walking, standing while washing dishes, or playing a musical instrument was likely to “trigger excessive activation of (her) impaired oxidative metabolic pathway”.
All in all, while the MS and HIV patients and healthy controls adapted to the exercise and generally got stronger during the second exercise test, the ME/CFS patients significantly declined in just about every parameter.
Score one for a unique intolerance to exercise in ME/CFS.
The Hodges New Zealand Study
Remarkably – at least to me because I completely missed it – the 2017 Hodges New Zealand study was the first to explicitly assess whether the exercise intolerance and post-exertional malaise in ME/CFS is unique. Past studies certainly suggest that exercise uniquely whacks the energy production systems in ME/CFS, but as noted above, most of the 2-day exercise studies in other diseases are quite old. Plus, none of them pitted people with ME/CFS against people with other fatiguing diseases. That’s a critical need – and that’s what Hodges did.
The Hodges study put people with ME/CFS (n=10), people with multiple sclerosis (n=7) and healthy controls (n=17) through a 2-day exercise study.
The small Hodges study found a significantly lower workload at anaerobic threshold in the ME/CFS patients compared to the healthy controls on day 2. The MS patients, on the other hand, were able to meet the same workload during the second exercise test as they did during the first exercise test.
The ME/CFS group was the only one to demonstrate a significant decrease in their ability to produce work on the second day. (Image by Peggy und Marco Lachmann-Anke from Pixabay)
Workload refers to the amount of power the participants can put out. As the exercise test proceeds, the resistance at the pedals is increased, requiring the participants to exert more and more force to move them. The significantly reduced workload in the ME/CFS group at anaerobic threshold on the second exercise day indicated that the first exercise test had significantly impaired their ability to produce force the next day.
Put another way, if this were a weight-lifting contest, the ME/CFS group would have been able to lift considerably less weight on the second day.
The study, interestingly, did not find a decrease in energy production (oxygen consumption) at anaerobic threshold in the ME/CFS group on day 2. That brought up the interesting conclusion that the ME/CFS patients were using as much oxygen on the second day, but the oxygen they were using was less effectively used, as they were unable to produce the same amount of force.
Several studies suggest that workload, or the ability to produce force – a seemingly more direct measurement of functioning – may be more impaired by exercise than oxygen consumption (energy production) in ME/CFS.
We shouldn’t get hung up on individual measurements – particularly in small studies like this. Exercise affects people with ME/CFS differently. I know of an ME/CFS patient who exhibits significantly reduced oxygen consumption and ventilation at anaerobic threshold on the second day but no drop in workload. (Their workload was abnormally low at anaerobic threshold on both days but did not drop on the second day.)
Exercise, then, can impair oxygen consumption or workload and/or ventilation in ME/CFS. The key is that each two-day exercise study thus far has found significant reduction in some important factor at anaerobic threshold – the point at which the clean aerobic energy production system declines dramatically and the more inefficient and toxic anaerobic energy production system takes over – and exercise becomes dramatically more difficult.
Fatigue vs PEM (Post-Exertional Malaise)
Larson suggested that the type of fatigue found in MS – which they suggested was neurogenic – differed from the kind of metabolic fatigue found in ME/CFS. They’re not the first to suggest this.
Alan Light’s ME/CFS and MS exercise study suggested there’s fatigue and there’s post-exertional malaise – and the two are different. The MS patients actually reported more fatigue – twice as much fatigue, in fact, as the people with ME/CFS (MS – 72-ME/CFS – 35).
The MS patients’ physical and mental fatigue did rise 8 hours after exercise, but both were back to baseline within 24 hours. At no point did the exercise bout increase their pain levels.
The ME/CFS patients, on the other hand, immediately experienced increased levels of physical and mental fatigue and pain after exercise that were still present 8, 24 and even 48 hours later. Plus, exercise evoked different patterns of gene expression.
Light’s results were partially echoed by a 2014 study that examined symptom levels following a moderate exercise session in MS and ME/CFS patients. It found a trend toward increased pain in both groups (but not a significant increase) and a significant decrease in fatigue in the MS group. The ME/CFS group, however, experienced a significant increase in fatigue.
People with ME/CFS have an astonishing ability to slip through the cracks. Their possibly unique exercise issues may present our medical system with the biggest surprise of all. (Image by OpenClipart-Vectors from Pixabay )
In their conclusions, though, the authors – who clearly wanted to buck up the idea of exercise in ME/CFS – simply ignored the significant increase in fatigue in the ME/CFS group and simply declared that “exercise provides many benefits for those with MS or ME/CFS,” and that moderate exercise, “may not exacerbate pain or function” in either disease.
ME/CFS received a different fate in a review of the cause of the fatigue in Parkinson’s disease and other disorders – it simply disappeared. Fatigue is one of the first symptoms to appear in Parkinson’s disease, and is such an issue in it that Simon Wessely developed a fatigue scale specifically for it.
It was remarkable, given all the exercise studies and other studies that have attempted to understand the fatigue in “chronic fatigue syndrome”, to see ME/CFS completely ignored in an overview of fatigue in Parkinson’s and other diseases (including cancer fatigue).
Conclusions
Face-to-face exercise studies (involving ME/CFS and other fatiguing diseases) unfortunately are still quite limited, but thus far, these and past studies of other diseases suggest that the exercise intolerance in ME/CFS may be unique. Larger studies are needed to clarify whether the fatigue and the post-exertional malaise ME/CFS is so well known for are unique, and if they are, how so. My guess is that some people with mitochondrial diseases and disorders of inborn errors of metabolism (a blog from Brian is coming up) could exhibit the same kind of exercise intolerance found in ME/CFS.
Fibromyalgia, with its more limited exertion problems, is a huge question mark for ME/CFS. (Workwell hopes to have papers out on exercise intolerance in people with comorbid fibromyalgia and Lyme disease by this summer.)
Meanwhile, David Systrom recently published a kind of magnum opus – a 300 ME/CFS plus invasive CPET study – that digs deeper than ever into the exercise problems found in this disease. A blog on that is coming up.
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Cort, I am confused by the difference between PEM and “exercise intolerance.” I had thought they were basically two names for the same thing. But the comment that patients with PH are exercise intolerant but are not made worse by exercise confused me. Could you please explain this?
I agree that exercise intolerance is very close to or the same as PEM and it does not appear to be found in PH. I wrote that PH “seems the very definition of exercise intolerance, yet, in contrast to ME/CFS, exercise itself does not damage people with PH.”..
Although I don’t know about PH it appears that it’s exercise limiting but is not exercise intolerant in the same way that ME/CFS is; i.e. exercise does not further exacerbate the exercise problems in the disease.
I think there must be a better word or phrase to explain what’s happening in ME/CFS.
May I suggest “exercise inability” for PH and “exercise intolerance” for CFS? It’s like alcohol or orthostatic intolerance: you have no problem standing/drinking; it’s only that you get sick if you do. Inability, on the other hand, will prevent you from doing it at the first place.
Severely ill patients may appear to have exercise inability. But that’s probably because they are constantly in the PEM state. (Breathing or walking to bathroom is enough to put them in PEM). Mildly ill patients on the other hand don’t have any problem exercising and that is precisely the problem for them. You have to voluntarily “disable” yourself in order to avoid PEM.
Hi, I’m exercise intolerant when my core temperature is low (mostly mornings core temp frequently below 36.1C or if I get wet and chilled). I also have post-exertional malaise issues which are variable but can be severely debilitating. I was diagnosed with CFS in the mid-80s but hindsight, being the wonderful tool that it is, following a diagnosis of Lyme in 95 made me realise that I have had problems since my first tick bite in 1958. Here I’d like to throw in a herring of a different colour, I appear to have suffered in the past with Post Orgasmic Illness Syndrome (treatable using nicotinic acid and Tramadol) POIS produces profound malaise lasting several days but can be forestalled by the nicotinic acid Tramadol combination. The post-exertional malaise does NOT respond to nicotinic acid Tramadol combination.
I think the difference is the terribly unwell sickly flu like hangover like symptoms that you just want to crawl up into a ball and die. Show how bad exercise causes Post Exertional Malaise PEM
is a way to explain the problem. As exercise intolerance is more like the inability to exercise to a normal capacity at the time. Or be extraordinarily fatigued afterwards. Which I’d still welcome any day over lying in bed so sick from PEM. Mine usually lasts up to 2-3 weeks. Such an awful sickly situation to get stuck in.
I imagine the severely ill are in constant fluctuating waves of deferent severities of PEM.
I know at my worst I felt PEM that lasted 6 months. And was considering ending it. Don’t worry I decided to find every possible reducer or preventative to improve enough to only have PEM several times a year. Fatigue never goes away but it peaceful compared to PEM
In a paper, ‘Fatigue in Muscular Dystophies”, talks about exercise induced fatigue that is not accounted for by muscle loss/weakness. What they describe as impact sounds similar to ME and PEM. They also say the source of cause as CNS. This paper may open up ideas for PEM treatment.
Thanks for this great article. I know this was a question I had asked.
So it does appear that the PEM in CFS is unique. Surely it can’t be too hard to unpick what is causing this?
What do you think the leading theory is Cort?
It seems hard to think it could be inflammation, neuroinflammation etc. When other disorders with these characteristics don’t have PEM.
Nice point…Systrom seems to be leading the way here and he’s finding problems with “systemic oxygen extraction” that could be explained by a number of things – the most prevalent of which is mitochondrial myopathy! but also includes circulation and breathing problems during exercise. If mitochondrial myopathy is present I would guess that would lead to oxidative stress and inflammation.
Also Fluge et al?
I keep going in circles on theory but I think the metabolic / energy production theories must be on to something…
“he’s finding problems with “systemic oxygen extraction” that could be explained by a number of things ”
I have been working on an idea for some time. It is still a work in progress so there may be a few remaining issues but as it fits in here great I’ve written what I’ve got so far in:
https://www.healthrising.org/forums/threads/potential-linking-rbc-glycolysis-air-hunger-thyroid-atp-dumping-pregnancy-improvement-and.6236/
The title says plenty but the main point here is that it may offer an overlooked explanation for us having high blood oxygen saturation but failing to use it and it may link to quite a few more unconnected dots.
So often the suggestions are for ‘moderate’ exercise, and we know how that affects us. What would happen with light, even miniscule, exercise? I showed your post on lactate to my masseuse/sports therapist, who has shown quite a lot of interest previously in how people with ME differ from others in terms of muscle function, etc. She sent me an email with the following questions:
A very interesting article. It backs up in broader terms some of the other articles that looked at the effects of exercise on a cellular level.
My one question going forward would be can we therefore find a way of training the aerobic system in ME sufferers? If you can improve the aerobic system it delays the point at which the anaerobic system needs to kick in. This is why long distance runners do lots of long, slow distance runs – it improves the ability of the aerobic system to keep going. When distance runners ‘hit the wall’ this is the point the aerobic system switches to the less efficient anaerobic system.
And now a second question arises! The study showed that the ME sufferers were worse on day two of the test. How many days would they need to rest before they could achieve the same results as day one? If you could establish this you could perhaps produce a very low level exercise programme with 2-3 days rest (or whatever the recovery time worked out to be). This would then delay the point at which the anaerobic system would need to kick in.
I wonder if those doing the study have thought about these questions?
I do know that people who recover can recover the ability of their aerobic energy system to produce energy. Dan Moricoli had a horrible case of ME/CFS and an exercise test indicated his aerobic energy production system was toast. He slowly – using a heart based exercise regimen – was able to return to health. He may be something of an anomaly though.
Staci Stevens has a patient who was able to significantly improve her results on an exercise test using that system.
https://www.healthrising.org/blog/2013/08/13/heart-rate-monitor-program-improves-heart-functioning-in-chronic-fatigue-syndrome-mecfs/
Her aerobic energy production system was still broken but her improvement was quite significant.
My guess is that Stevens has found that while believes that most people who do this regimen are not close to being as functional as before they certainly can improve their health and functioning.
Isn’t this what Ian was referring to in his comment on the Norwegian 2 Day blog?
Apart from the collapsing, weak legs, episode (seemed to end with me eating chocolate) and the fainting (again the chocolate now in a negative role), I don’t have a significant problem with physical exercising – though I haven’t been swimming for years, for obvious reasons – like I might drown if my energy went.
However I find mental tasks like talking to others, reading, watching stimulating programmes or trying to keep up with everyone on Health Rising!
A friend from childhood came over to see me for a few days at the end of August. It has probably taken me until now, to recover. I have a horrible suspicion she was ‘put up to it’ by my sister, who is convinced I have a mental health issue. So I was on my guard. Actually she was very understanding and we had a good chat but by the day she was leaving, I was absolutely mentally wrecked. I had to go to sleep in the afternoon and I just couldn’t ‘pick myself back up.’ So, it’s taken me about 7 weeks to regain a bit of mental energy.
Nancy B mentioned this sort of thing, again on the Norwegian 2 Day article comments, I think.
I have a greater tolerance now, than I did earlier this year. I think my available, usable energy was at such a low level back then, that any kind of emotional expenditure would take me below my level needed by my body/brain/mind to function. Like going over my limit on my bank account. Even if I just needed €10 for something, my bank would simply not authorise it. It was the most unnerving and peculiar feeling. I had to be rigidly focussed on the absolute bare essentials to survive.
My fatigue is similar to Tracey Anne’s. I do not appear to get physically fatigued (any more than a healthy person – I can run for 90 minutes) but physical exercise fatigues me mentally afterwards, mental exercise fatigues me mentally, prolonged exposure to temperatures above 22C fatigues me mentally.
I have always had the basic symptoms of being easily fatigued but only looked into it about 10 years ago after it worsened considerably (probably due to stress at that time) and I could no longer work full time due to the mentally challenging nature of my job. Other potentially related symptoms are appalling memory (short-term and long-term), slow resting heart-rate of 40 bpm, I often wake early (4 – 5am) and rarely sleep afterwards (sleep test was normal!), I pull muscles easily in spite of strict warm-up regime, neck and shoulders become stiff easily.
I used to get a lot of headaches when I was a child/teenager (over 50 now). I gradually figured out that they were due to stiff neck and shoulders or due to sleeping after 7am in the morning (dehydration headache?)
I avoid PEM most of the time with the following regime
– Avoid anything mentally stimulating after 6pm, especially socialising.
– Consume salt during and after exercise (instant soups etc) to limit the mental fatigue (My doctor tells me that my sodium levels are fine but I start feeling bad after walking slowly for an hour. I feel fine within minutes once I drink something salty)
– Bright lights every morning and 1000 IU Vit-D3 daily. This stops me deteriorating significantly in the Winter. Neither light or Vit D3 on its own will suffice.
– Avoid heat (especially when sleeping). Ironically sunshine seems to help a lot.
– Limit exercise if I have had a mentally-busy week. It feels like low-grade fatigue builds up slowly without affecting me until I do physical exercise, then the fatigue hits me with a bang. The same amount of exercise after a relaxing week causes much less PEM (don’t need to lie down afterwards but will still be tired the following day).
Hi Diane,
Great questions! Workwell has a ton of resources for your physical therapist on their website:
http://workwellfoundation.org/resources/.
Especially see their most recent addition right at the top of their Resources page – they’ve partnered with Medbridge to produce an accredited online course your PT could take.
There’s also a paper – written specifically for physical therapists – that addresses the question of how ME patients might *safely* exercise: “Conceptual Model for Physical Therapist Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis”.
https://academic.oup.com/ptj/article/90/4/602/2888236
And there are no illusions that even this *safe* exercise program is in any way curative of ME. However, it does hold the hope that it could help increase function. Interestingly, in reference to your comment, it’s the *anaerobic* system that is the target for conditioning (with some ME patients able to follow the program and get to the final stage which does venture into aerobic territory).
It’s important to note that their anaerobic exercise program respects each patient’s individual abilities and limitations. A patient’s program may not look anything like what they used to consider (pre-illness) to be “exercise”. Sessions can start off as brief as 20 seconds and the exercises may well be done while lying down. Also, even they cannot be done every day.
And now here’s another suggestion to replace exercise. This just came up on facebook. Perhaps we can get some of the benefits of exercise just by heating our bodies. I wonder what effects this would have on fatigue markers?
https://www.lboro.ac.uk/news-events/news/2019/october/heat-suit-exercise-benefits-people-disabilities/?fbclid=IwAR2HhQyXrZO0_PemiUJHH0GBwfwqQeUh4NY2Dp3cK2Z6mIg7RVYQ7Z0x-E8
Well, you can try roasting yourself for eight hours while asleep with an electric blanket for no cost. That would be a good empirical study. I have FM and roast myself every night for pain.
Yes. I “roast” myself every time I lie down with several heating pads (for pain). Otherwise, heat makes me much, much worse.
Sometimes, I feel “it’s coming”. My toes are very, very cold. I believe my system is trying to send heat to the toes and that small activity is just too exhausting and i am heading down for a crash. If I react quickly enough, I lie down with a heating pad for 20 Minutes and the energy comes back with the heat.
cort, exercise can simply be moving one hand so how does this fit with exercise?
it’s simple MOVEMENT, not exercise. does anyone know this yet or am i ill with something else?
Exercise is a terrible term for us to use. Nothing that I do comes close to resembling the exercise I did pre-ME/CFS – which is why I referred to “real exercise” at one point. So yes, it’s more about movement than “exercise” and even moving ones hand can count as exercise in ME/CFS. Staci Stevens exercise regimen involves very short “exercise” periods which help to build up anaerobic energy production.
I wonder if a person sick with cold or flu exhibits PEM. Surely, you are not going to feel better the next day after hiking or jogging if you have cold/flu. Likewise, I wonder about 85 year old. I remember my mom cleaning the house one day and then spending the rest of the week in bed. Or an athlete after overtraining?
My guess is that the inability to exercise on the 2nd day is the result of getting sick after the 1st day rather than any kind of physiological changes.
I’ve had me/cfs for over 30 yrs. I do exercise but carefully & I have to say sometimes I can manage more than other times. But anything that smacks of exercise ie a stroll for 40 mins with a few stops along the way will require a nap for a minimum of an hr later that day & then its hard to say how i will feel the next day. I am fortunate to receive acupuncture, body work and herbs every week with out which I would be in trouble.
We still lack the ‘grand theory’ tying everything together.
Something must happen at the start of our illness that perpetuates its chronic nature. It must be an immune insult.
Studies have shown immune activation in the early years of the disease then slight immunosuppression later. I think this has happened with me. I had lots of allergies earlier in the illness, thankfully most have disappeared. Has anyone else experienced this?
But I am just as fatigued as I was earlier.
So it seems to me the early immune activation must trigger something that causes the illness. Once the activation has gone away, the illness still lingers. The early allergies were a byproduct of the process triggering the disease, but not central to it.
This just seems so intuitive, and I don’t think such intuition should be disregarded.
So given what I have said above, the theory is:
– original immune assault results in immune activation and something is triggered that perpetuates illness
– immune activation eventually disappears, but whatever ‘button’ has been turned on is not turned off.
Intuitively, then, it still feels like something autoimmune is at play. But what?
I feel that any theory MUST take account of the initial immune insult.
Cort, have you heard anything about Scheibenbogen et al’s interesting research into autoimmunity and CFS?
I heard that the Bergquist team has validated her results – hopefully we will see a paper soon. Antibody situation is pretty complex – it’s not the presence or absence of antibodies as I remember but the levels that is determinative.
Hi Matthias,
I had some of those allergies and “small ailments” too before (I have a gradual onset case ME/FM). Most of these things were gone when I was at worst.
Now that I am slowly getting better, they come back in about the reverse order as they disappeared. Other people reported likewise things. It could be an interesting exercise to try and find something to explain that one.
What do you make of Naviaux’s statement that “Exercise is medicine”?
Naviaux is a very, very smart man who has studied ME/CFS deeply. The only thing I can think is that he was not referring to ME/CFS or was misquoted.
No idea what Naviaux was talking about, but.. not all medicine is good for all conditions – applied to the wrong condition it may well cause harm. Perhaps he meant that exercise, like medicine, is powerful and should be handled with care, and prescribed for the correct condition only?
There are multiple benefits from exercise, including increased brain derived neurotropic factor, increased mitochondrial biogenesis, and many others. At the April NIH conference, multiple experts encouraged ME/CFS patients to exercise. My fear is that many patients will read this article and conclude that NOT exercising is the way to go. I think that this might be a mistake.
Though it’s often been frustrating, I’ve been able to persevere and exercise throughout my journey with ME/CFS, and maintain a level of physical fitness and, as I’ve gotten better, improve my level of physical fitness, doing yoga and body weight exercise classes, lifting weights, walking and dragon boating.
I’ve definitely had to rest, to lie down wherever I had to be and lie, eyes closed, motionless for 2 to 20 minutes, sometimes many times throughput a single exercise session. I’ve gotten PEM but learned to reverse it much of the time (but not always) with glutathione and branched chain amino acids. I’ve learned to fuel my mitochondria to support extra effort, with NAD, MitoQ, B2, and other mito supplements. Cholinergic substances like pyridostigmine and Huperzine A and beta blockers have greatly helped, too. And having adequate cortisol, which means taking hydrocortisone, at times, to support the physical stress.
As my immune system and infections were treated, I was able to go from exercising for 2 minutes before crashing to longer periods, as long as I do things slowly and deliberately, and carefully listen to my body.
The most challenging thing is any intense exercise like squats or lunges, or any aerobic exercise over a minute. Even though I’m able to walk 3-5 miles on a good day, slowly, one minute of aerobic activity kills me. I have only done a one day CPET, but I’m sure that I would not do as well on a 2 day CPET, just like the other patients.
I definitely believe this aerobic/intense exercise intolerance/PEM is a feature of ME/CFS and I’m very interested to one day see the explanation of what lies behind it. Why do we hit a wall so easily? Why can we do things at one pace but fail when we go too fast, too intensely, beyond our capacity, and why do we pay with PEM? And, how does doing exercise interact with ME/CFS – my experience has been its not detrimental if carefully and thoughtfully done.
I have connected with other ME/CFS patients who exercise similarly to me, and find that we have similar experiences and questions.
Thanks for another great article, Cort!
Isn’t walking considered aerobic exercise? I’ve been relying on that (and walking up and down stairs) as exercise. Also, I have had success with Feldenkrais classes (though it depends completely on the instructor) for getting movement without physical exertion. Helps with “efficiency” of movement, smoothing out kinks, and muscle pain.
I agree that we should be as active as possible and that deconditioning is a real problem for many people with ME/CFS which adds to their suffering and physical problems. I like Staci Stevens and Nancy Klimas’s heart-rate based exercise program.
https://www.healthrising.org/blog/2013/08/13/heart-rate-monitor-program-improves-heart-functioning-in-chronic-fatigue-syndrome-mecfs/
There are a bunch of resources here:
https://www.healthrising.org/forums/resources/exercise-resource-center-for-chronic-fatigue-syndrome.168/
I’d describe myself as very similar. I’ve been in the gym for an hour three times a week for 40 years. I ride my bike for 30 minutes three times a week. It is extremely rare for me to miss a day. The most interesting thing is how consistent these routines have been. I’ve been doing almost exactly the same gym routine for the last five years. I’ve been cycling the same route for five years. I do a lot of dog walking but it is always the same route. It is rare for me to change the daily routines.
The biggest revelation for me was the regenerative power of going to lay down. When my “getting cranky” signal goes off, I go lay down. Since mental activity also uses energy, the room is completely quiet, no television, radio, etc allowed.
When I was in really rough shape, I still continued to exercise. I spent many hours laying down but insisted on sticking to the same physical routine. Over two years I went from laying down for a couple of three or four hour stints a day to the current hour or so a couple of times a day.
I did the two day CPET via an exercise physiologist (so not with the exactitude of the current Workwell guidelines) and the results were unremarkably normal. There was a comment about producing a surprising amount of lactate for my age.
One cup of coffee in the morning helps me get activities done (compared to three pots a day when I didn’t understand I had ME/CFS). Supplements are CoQ10, creatine and carnitine.
I’d even describe my condition as “continual PEM with a big stubborn streak”.
I wonder if this “exercise cohort” is predominately male. I know males tend to use more of a muscle substrate than a fat substrate during anaerobic exercise, so maybe for males the continual destruction of muscle and building of muscle due to exercise is a good coping mechanism.
Very interesting. I wonder how many people can do some exercise but just can’t pump it out as when they were healthy. I recently received an email from someone who’s working 45-60 hours a week in a high stress job and collapses on the weekend. This has been going on for years…I have the feeling that the Japanese are more interested in higher performing people with ME/CFS than the US and Europe are. God knows how many people there are who are exercise or activity limited but can still do some exercise or work full time.
I suspect that the slow onset cohort has a long list of compensations they use to keep themselves functioning.
I taught at a community college for many years. In the last few years I would lay down on the floor of my office when I had a break between classes. I’d pull up a chair in the labs rather than stand, or sit on the floor at the student’s desk if there was no available chair. I’d perch on the edge of a desk rather than stand. I’d lecture sitting down while doing programming on a laptop rather than stand . Often my classes were in the morning. I’d go home and rest then work later in the evening. Weekends became dedicated to recovery time. In my last term, just due to scheduling, I had almost a four day weekend but still had trouble teaching when the weekend was over. All that time I still rode my bike to work for and consistently went to the gym. Eventually I just ran out of steam.
Avoidance also works well. I find that standing, slow walking, or even just sitting in a chair for an hour causes big PEM problems, while reasonably brisk walking doesn’t. For years I refused to stand in a lineup or do the shopping slow-walk. Long before I understood PEM I had a rule with my partner that if we went to a party I’d be gone after about two hours. I’m convinced that the compensations result in the somewhat quirky behaviours.
When I stand in a lineup I’ve never felt that I had difficulty standing. Instead, there is a sense of unease that turns to grumpy, then to silent determination. Eventually you learn to avoid lineups.
It wasn’t until last year when I saw some of the ME/CFS presentations from the Harvard folks that I understood orthostatic intolerance as “the patient feels bad when standing”. If I approached a GP with this information they’d say “no tachycardia, no fainting, shrug”.
I want to share a personal experience of avoiding PEM/being more fit for exercise when using antibiotics. I´ve had ME/CFS for 25 years and had a turning point in my illness 2006, beeing remarkable better after a long-term (13 months) treatment with antibiotica. I do a lot of other things improving/balancing my body to make it more functional and in some periods it turns over to a healthy state where I react positive on exercise, even being able to run . Unfortunatly this do not last – I go back to being more ME. I had done a lot of experiments with antibiotics – a healthy person being sick takes antibiotics and are then unable to exercise due to the illness – for me its the opposite – when i´m on antibiotics I´m much more able to exercise. In periods when I do have PEM after exercise ( and other ME-symptom) I have found out that I could take a single dose of antibiotics half an hour before training and no PEM will affect me! Is there anyone more having similar experiences?
Sounds like you have Lyme or other tick born disease and/or a virus. The symptoms are so similar they are hard to tell apart! It sounds like your body is able to “manage” the disease(s) until something stresses it (ie too strenuous exercise) at which point you “flare” with the PEM type symptoms. Antibiotics will knock the Lyme back of course but it should take a day or so to recover from the effects of the flare. I wonder if you are getting a placebo effect? It would be interesting to set up your own experiment so you don’t know what you are taking before exercise and track the results. I spend a lot of time doing this to see which herbs/ foods are causing side effects while I deal with Lyme +…. Good Luck!
Thanks for your input och whishes of luck! I don´t think I have Lime – I´ve had it twice but it has gone away with a different kind of antibiotics than that I need to hold down my dominating, persisting infection. I know I have an infection with Stafylococcus aureus in my upper jaw/the sinus at left side and it seems like antibiotics not are able to go in there – but it takes away the bacteria in other parts of the body. From this hidden location the infection seems to goe out in the bloodstream ( and if not treated colonize organ and tissues ) during exercise and then causing PEM. My story indicates that PEM maybee is a result of circulating bacterias (virus, patogenes) spreading from hidden locations and/or from a leaking gut (not in my case). Some of them produces quite nasty toxins.. If you have numerous of accumulated untreated infections in the body even a small increase in cirkulation after walking to the toilet, standing up etc may affect you negative. Is it a possible explanation? Why or why not?
Of course I have done placebo test on myself – there is a true effect of antibiotics (3 different sorts) that takes stafylococcus in my case. Because I normally hold down the infections in my body the pattern and effects when the bacterias spread again are more obvious than for others whose infections are untreated. I have begged on my knees to the health care to take a blood test just after exercise to detect (or not) bacterias in my blood but I guess you all know how it is when you have your own ideas..
Hi Ingrid,
You mentioned:
I know I have an infection with Stafylococcus aureus in my upper jaw/the sinus at left side and it seems like antibiotics not are able to go in there – but it takes away the bacteria in other parts of the body.
Do you have a cavitation in the upper jaw? The only way to “help” that area is to have a biological dentist open it up, scrap any necrotic bone, and perform some ozone injections. If your not sure, please find a dentist that performs the diagnostic tools to locate this infection.
A doctor should not have had you take an antibiotic for 13 months, thats absurd, unless if it was a narrow-spectrum antibiotic. Its not easy for an antibiotic to reach tissue either without a supplement such as bromelain as well. If the infection is in the jawbone without albood circulation, its in the jawbone, it will stay there. It can effect all the energy and the meridians inside the body, especially on that side of the body.
All the the finest supplements and remedies in he world are zero match for caviations, the site has to be cleaned, the blood has to clot, so that the bone can heal for good.
Best,
Dan
Further, I may add, An antibiotic doesnt do a whole lot for the lyme spirochete. An antibiotic merely speeds the immune system up. The immune system still has to do its job. Also, you have to rule out factors that perpetuate lyme. Further, most people carry the lyme spirochete, in addition to EBV. Its virulence only becomes an issue when the immune system is compromised, which unfortunately is quite common. The lyme spirochete is not pathogenic. There are a few common strains in North America that can cause illness, with the most prevalent as B. Burgdorferi, especially in the NorthEast/Wisconsin/Great Lakes areas. There is a different strain more common on the west coast. There are also strains similar to Lyme, but are actually not. “Lyme” in my opinion is a very outdated term, and rightfully so, as it merely depicts a Geographic area of original significance (Old Lyme, CT.) Many people carry the spirochete without knowing it.
Best,
Dan
The poem below was written by our daughter who had a mild case of ME/CFS that became much more debilitating after sinus surgery last year.
My Life Today
You think you know,
But you have no idea!
I am sick with a disease that changed my life
ME/CFS.
No longer can I do the things I used to,
though I want to.
No longer can I surf days in a row,
though I want to.
No longer can I stay out past 9 pm,
though I want to.
No longer can I dance Zumba or Ujam,
though I want to
No longer can go on trips with friends,
though I want to.
Weight gain, brain fog, body pain, fatigue, IBS and inflammation.
Feeling like you have the “never ending flu…”
is enough to make you want to crawl under a rock.
No doctors
No diet
No Medicine
No research done
HELPS!
So I live heavier, slower, dumber, depressed!
As I wait for,
our money driven medical society
to find a cure.
I scream!
“God dammit… “
Take this seriously!
4.5 million diagnosed worldwide and growing!
My free time, filled with
reading research way above my head.
Trying the newest
Diets
Herbs
Supplements
Treatments
Medicines and more.
Sharing information on Facebook Groups.
Pushing back the NIH and CDC,
who’ve ignored this since the 1980’s.
The hamster wheel turns.
Good days you see your friends
Bad days you’re in bed
Unable to get up to,
Cook, clean, talk or even watch TV.
So I sleep and sleep
and sleep some more.
Waking up with a “heavy wool blanket”
layering my pain-filled body.
I drag myself out of bed,
only to go back to sleep again.
Perhaps, if the dreams were good,
This would be an easier disease to survive,
But dreams are non existent with ME/CFS.
If only we all had “Acted Up”
yelled, screamed
like the gays with Aids,
ME/CFS might be taken more seriously
but No….
We are told …
“It’s all in your head”
Exercise more
Take antidepressants
Go on Strict diets
Swallow these toxic pharmaceutical drugs
Pay out of pocket
Offer us gallons of your blood.
And still we remain the same
Sick
Heavy
Hungry
Inflamed
Absentminded
Sore
Weak
And
Tired
So very, very tired
So this is it…Life with ME/CFS.
Kristina
I’m so sorry! It is horrible to be ignored and dismissed and have to be your own DR! I recommend you go to TreatLyme.net and read the info there on tick and flea diseases and other viruses that cause the same symptoms. ME/CFS many times starts with an infection that may have seemed minor at the time but was never cleared from the body. Dr Marty Ross does an online webinar that you can write and ask questions for free. All past webinars are archived to listen to. You might find some helpful info there. God Bless!
Some comments on exercise. My grandmother lived to be 97. Her only form of exercise was to push the “pedal to the metal” to drive from the Mississippi Delta to Memphis to go shopping. She never dieted, always took a nap after a huge noon meal and was never over-weight.
Where did humans get the idea that we need to jog; go for the burn; look like we are 18 when we are 80?
I like to watch my cats. They stretch and sleep and tear around the house for a few minutes, then sleep some more. They are in great shape. No wonder they have 9 lives!
“Where did humans get the idea that we need to jog”
Here are some reasons that exercise is the universal treatment for chronic illness:
1. They got nothing else. The medical industry is terrific at repairing trauma and pretty good for acute illness. Beyond that, it’s “come back in six months to see if your still alive”.
2. It’s cheap and requires little physician thought or time. That’s important for clinicians examining 30, 40, 50 patients a day.
3. When it fails, it’s the patient’s fault. They obviously did it wrong, although no one can really say what is the right way. If it’s the patient’s fault, then they are morally defective. As Useless Eaters, they don’t deserve social support, so it’s OK to throw them away.
—
I usually only see a person once every two weeks, but I see wild critters everyday. I often see them resting. I’ve never seen them doing Jumping Jacks or push-ups.
If it is true that PEM just occurs in case of ME/CFS then QFS ( chronic fatigue symdrom due to Q-fever) must be a from of ME/FS because alss QFS patients report PEM
I don’t know about the supposition that PEM is unique in CFS, but QFS (“..sequelae after an acute Q fever infection”) indeed appears to be CFS just as PVFS after a mono infection is (https://www.ncbi.nlm.nih.gov/pubmed/17599032).
Cort I wish you would do the ANS Rewire program. It explains pretty much everything you keep posting about. I realize that the program is just one person’s opinion but what Dan Neuffer says is I think, so accurate. He has the most sensible explanation for PEM I’ve ever heard. I can’t believe his hypothesis is not being more widely researched, I think he has the answers.
I admire what Dan has done and we have some recovery stories coming up from people who have done the program. It’s on my list!
Without a doubt Dan Neuffer turned my precipitous downward spiral around, to my current gradual improvement.
I am no longer wired – I sleep productively every night and I can tolerate more food. As I am sleeping better, am less wired, I don’t need sugar/chocolate/adrenaline to survive my day. As I am less fearful of my system collapsing I use less nervous energy.
I have been more ‘normally’ tired. However I feel I still need to keep an eye out for what’s happening within me. I believe the trauma of the last few years – being so ill – will stay with me for years.
I have thought about doing Dan’s rewire program – I just ran out of money as I needed a ‘new’ car, my computer’s packed up and my phone is thinking about it!
I thought I’d see how far I could get myself. I have watched most of Dan’s videos and recovery stories and it was Brenten’s video that got through to me. Before that, I had absolutely no idea how anything I watched or read could have any impact on me at all…
Dr Nancy Klimas initially caught my attention and then I found Dan’s videos.
Cort, I think you are really on to something in your pursuit of exercise intolerance/PEM as central to ME/CFS. Both the medical and patient community have struggled for so long to define ME/CFS; and PEM, as counterintuitive as it is in this day and age when exercise is touted as a panacea for all ills, seems to be emerging as the defining symptom of the disease. So much so that we had the big “Beyond ME/CFS” conference in 2015 suggest “Systemic exertion intolerance disorder” as a new name for ME/CFS. Still no better as a name , but it zeroes in a bit better on exercise intolerance/PEM as the most important characteristic of ME/CFS.
I have had ME/CFS for 27 years, just over half my life, and over those years it has waxed and waned from mild to moderate to severe. When it was mild I would regularly engage in activities like cycling and surfing, but spent untold hours “recovering” in a fog of fatigue for days afterwards. It was years before I understood that there was a direct correlation between exertion and post-exertion malaise, because the onset was not always immediate. Often I would experience an endorphin rush after a workout that would last into the night, and it wouldn’t be until the next day that I felt the fatigue coming on. Sometimes it wouldn’t be until later the next day, or even as much as 48 hours later. So the cause-and-effect eluded me for many years (or more accurately, I refused to see it).
If there is a difference between exercise intolerance and post-exertional malaise, I would say it is this period of latency, the “post-” aspect of PEM. It’s not that we (and by this I mean those with mild or moderate ME/CFS) can’t tolerate exercise in the moment. On the contrary, if we are feeling good (and if we are fit enough for the type of exercise in question), we can charge it with the best. But it is what happens afterwards that distinguishes PEM. The crash that feels like your energy is being sucked down through the bed. The days and days of recovery.
It will be interesting to see what these new studies turn up. Perhaps if we zero in on the mystery of PEM, we can look for more specific biomarkers, and, perhaps ultimately, find better ways of treatment.
I don’t exercise anymore other than walking and light yoga, and living in a surf town this has made my relationship with my community a bit complicated. All I can do these days is sit on the beach and watch. If people ask me when or where I surfed I tend to dodge the question. We all know how difficult it is explaining to someone in casual conversation that we have ME/CFS.
I’d like to think that one day I can get out there again, just for an hour or so, catch a few waves, enjoy the sun on my back. I’d like to think one day I can do a full Vinyasa yoga class without crashing afterwards. Or go for a ride on my road bike. But the better I understand exercise intolerance, the more I consciously and specifically avoid all forms of exertion beyond walking and light housework. As you mentioned in a comment above, even people who have “recovered” from ME/CFS still have issues with PEM. So we may be a ways off from any kind of treatment.
But we can hope.
Chris, your description is perfect. Sorry your surfing was cut off (hopefully not permanently). My sailing was cut off, though I still resist being called a “former sailor”.
Thanks Cameron. That’s gotta be tough. Sailing is such a soul-nourishing endeavor. When you can’t do those things that give your life shape and meaning, it’s hard not to lose the thread. Here’s to hoping you can ride the wind again before it’s all over.
Agreed – great description Chris. For me exertion hits my system the hardest a day or two later as well. I think its fascinating that I’ve always been able to generate enough energy to do some exercise – its the after effects that can be devastating.
Your comment opened up for me the question how many seemingly healthy people who have trouble recovering from exercise a day or two later there are. I would guess they have incipient or mild ME/CFS. I wonder how many people who are “couch potatoes” simply don’t get the benefits of exercise.
I grew up in a beach town as well – Redondo Beach – not a surfer or sailor – but spent many, many hours bodysurfing :). Just went back to Redondo for the first time in years and gingerly jumped into the ocean and grabbed a few waves 🙂
Cort, I think the question of how many seemingly healthy people have some sort of exercise intolerance and just don’t know it is an interesting one. How many times do we experience healthier people saying “I have that too!” when we try to describe our condition?
I’m on the east coast — Outer Banks — and on good days in the summer I can still jump in and do a little light bodysurfing without pushing myself over the limit. I think the intangible benefits that come from interacting with nature in the form of moving water is worth a little exertion. Especially when relaxation in a beach chair is only a hundred feet away:) I hope you had fun at Redondo!
Hi Cort. I have a “puzzle piece” I haven’t seen addressed anywhere. I am subject to severe PEM, that can last days, or weeks if I do too much (which is always a moving target: anywhere from standing up to cook dinner to taking a short walk). I see that there is an apparent correlation (correlation not being necessarily causal) between too-high heart rate and PEM, but there is one instance where that seems not to be true.
I have a chi machine, which gently rocks my body in a figure 8 side-to -side motion. It is like doing aerobic exercise without the muscular work. In fact, it is advertised that 15 minutes on the machine is like one hour of aerobic exercise. Maybe, maybe not, but lying on the floor, using the machine, doing nothing but gentle deep breathing, I generally let my heart rate go up to 125-130 (I’m 70 years old, but was athletic my whole life until 2 years ago). Afterwords I feel great, and there is never PEM! When I use this machine twice a day, I feel better in general. I’ve been using it for 6 months, and (if I don’t muck up the rest of my day… which is still a moving target sometimes) the results have been consistent. I stopped using it for a month, and now I’m digging myself out of a hole again, though I’m still able to do moderate yoga every couple of days for 20 minutes or so.
How does this piece of information fit in? Is there anyone who might design a study around this?
Thanks!
It helps circulation in the legs and gets blood flows better. When circulation in lower body is better so is it in upper body. Less work for the heart to have to do. It would also aid in lymph flow and help with detox. (I need to find mine, haven’t seen it since my move.)
Issie
On the other hand, doing a couple squats is not going to raise your heart rate much, but it can reliably set off PEM for some (most?) patients who have no problem walking a couple of miles. HR or anaerobic threshold method is just a rule of thumb, IMO.
I’ve found that more than 6-7 squats can skyrocket HR to 130+ – the more squats the higher it goes. Unless you meant a literal ‘couple’ then just a small number of squats can be more than I can handle and I’m only mild ME/CFS. I’ve experimented in a highly controlled manner with HR and found that it is much more specific than just a rule of thumb, if the time and dedication is taken to determine a personal HR range that is safe for a prescribed amount of time.
Exercise-Induced Anaphylaxis & Uticaria (is this familiar to anyone?)
When I was younger and could exercise, play sports, etc, I sometimes had strong shock-like symptoms during strong exertion, particularly if I started tasting lactic acid… Sometimes it seemed like some high-carb foods increased the chance of triggering this. Hot baths/showers could cause it without over-exertion too. My CFS symptoms have steadily become worse & it would take less exertion to trigger this as the years went on.
Now that I’ve learned about Mast Cell Activation Syndrome (which may play a role in my illness), these seem similar or maybe inter-related, especially if heat is a trigger.
Looks like there’s been some info out there for a couple decades, but it’s not something that I see much of when I search about CFS.
Wikipedia: https://en.wikipedia.org/wiki/Exercise_induced_anaphylaxis
Mayo Clinic article from 1997: https://www.mayoclinicproceedings.org/article/S0025-6196(11)63475-7/fulltext
NIH genetic & rare diseases: https://rarediseases.info.nih.gov/diseases/6392/exercise-induced-anaphylaxis
Yes, MCAS is huge for me. Thankfully, don’t have it to the point of your links, but heat, exercise, strong emotion, sex etc. Can all activate it. Epi pens and Emergency medicine I have at all times. So far, haven’t had to use epi pens. But have spent a night in ICU when it affected my heart (Kounis Syndrome). I’ve written about it a good bit on the forums and Corts blogs. I’m trying a diet approach at the moment. So far, having limited success. But still need a good bit of tweaking.
Blood Type diet is a start….Along with figuring out your secretor-status.
dadamo.com
Best,
Dan
Learner one stated:
“The most challenging thing is any intense exercise like squats or lunges, or any aerobic exercise over a minute. Even though I’m able to walk 3-5 miles on a good day, slowly, one minute of aerobic activity kills me. I have only done a one day CPET, but I’m sure that I would not do as well on a 2 day CPET, just like the other patients.”
Many people with ME can exercise a bit and even do slow walking.
This is consistent with calcium channelopathy. If you walk slowly the signals to open the ion channel are slow and steady. Calcium is leaking in slowly replenishing stores. If you strain or exercise aerobically then the store is quickly depleted and insufficient calcium is the result. The cell is then unable to function effectively and if it is a muscle cell then it fatigues completely. In addition mitochondrial function is affected in many cells because mitochondria depend on an adequate supply of calcium.
When athletes over-exert themselves they suffer from acute leaky gut, this causes PEM, where PEM is a malaise of “flu like” symptoms and excessive fatigue. Leaky gut admits excessive bacterial lipo-polysaccharides which activate macrophages, which in-turn activate microglial cells in the brain. This happens surprisingly quickly. This chain of events also contributes to fatigue. The athlete recovers because their calcium ion-channels are normal whereas in ME the ion-channels are abnormally structured and do not replenish calcium other than a slow leakage into the cell. In many cases I suspect that adequate stores of calcium takes 24 to 36 hours to occur, such is the damage to the calcium ion-channels.
Ian,
I’ve been trying to figure out connections with calcium channels and Tramadol affect there. Research says it affects both L and N calcium channels. It also affects all neurotransmitters including NMDA. It had been my best POTS medicine and moderated my autonomic nervous system. It also has SSRI activity which they feel helps pain. (I never could use an SSRI or SNRI. And Tramadol at one time was used off label to help those who could not use those.) Any ideas of the function here and why it helped?
I’m in an off cycle and trying to use some herbals and enzymes instead. But still trying to sort why this was helpful.
Tramadol is an intriguing molecule as it affects so many systems. It is a mu-opiod receptor agonist, it is an SSRI, and SNRI (weakly) and it is a TRPV1 calcium channel ligand. TRPV1 is nociceptor ion-channel and is co activated by TRPM3. Many people with FM swear by Tramadol, it main downsides are constipation and acute withdrawal symptoms and for some people it interferes with deep sleep.
https://www.ncbi.nlm.nih.gov/pubmed/18499628
I had mutations on all 5 of the TRMP3 genes found in the Griffith study. How would that play in with Tramadol helping? I took such low amounts, and cycled on and off for years with no side affects or withdrawals. But didn’t take enough to help pain, but tweak autonomic nervous system.
This is a double from what I replied above to Cort but here a repost as it’s hidden somewhere where most people may no longer read it.
I have been working on an idea for some time. It is still a work in progress so there may be a few remaining issues but as it fits in here great I’ve written what I’ve got so far in:
https://www.healthrising.org/forums/threads/potential-linking-rbc-glycolysis-air-hunger-thyroid-atp-dumping-pregnancy-improvement-and.6236/
The title says plenty but the main point here is that it may offer an overlooked explanation for us having high blood oxygen saturation but failing to use it and it may link to quite a few more unconnected dots.
The Intriguing Role of Histamine in Exercise Responses
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161583/
Liked this link. MCAS medicines helped me function much better and was a turning point in my tolerance of POTS. Until then, it was nearly unbearable. Definitely, one of my puzzle pieces.
Induction of the Histamine-Forming Enzyme Histidine Decarboxylase in Skeletal Muscles by Prolonged Muscular Work: Histological Demonstration and Mediation by Cytokines
https://www.jstage.jst.go.jp/article/bpb/40/8/40_b17-00112/_html/-char/ja
You can’t assume that just because two disease have similary symptoms that they are the same and will spond to the same treatments.
Allen, to which diseases are you referring?
@Dan, would you Private message me on the forum. I want to ask you more about the diet and sectors. I did the blood type diet years ago and do think it may help. But the sector thing is new to me. But, based off other testing I’ve had, I know my sector. Would like to hear how you feel it has helped you.
I’d be interested to see how people with flu, colds and glandular fever react to the two day exercise test. Could M.E be more like a bug in it’s effect on the body. Suggest that one to Workwell?
I’ve just started watching the Energy Blueprint program by Ari Whittan. Unfortunately it’s a program with significant ($500) upfront cost involved (so not accessible to everyone), but he ties together ideas about mitochondrial dysfunction (including the symptom of exercise intolerance) and the cell danger response in a way that I had not previously understood (that one comes right along with the other, hand-in-hand). And he ties this central idea into many other commonly-seen stressors, culprits and off-shoots in CFS (neurotransmitter deregulation, chronic infections, toxins, heightened pain processing, neuronal inflammation, etc..). So it is really interesting, at least. (I have no idea what is actually “plausible” anymore…I feel like suffering from and studying CFS is enough to make one loose a grip on their plausible radar completely!..or me on mine, anyway…but it feels possibly so.)
I first watched his free Masterclass series, which has quite a bit of information explaining his perspective. (I think that is available for anyone to watch – or to sign up for free to watch – at any time, but I’m not totally positive.)
Interestingly, a process that he calls “hormesis” – an intentional slow and steady stress of the mitochondria to stimulate their repair and growth – is a key part of his program, but not until the end step in 6, after many of your other primary systems are (presumably) up and working better. Exercise is listed as one key form of hormesis, but not the only one, and he is clear that many people (people with full-blown CFS over those with chronic fatigue) need to use the alternatives, due to exercise intolerance. But his program is built on the idea that this stress of the mitochondria (at the right time, in the right way) is the key to rebuilding their resilience and shutting off the cell danger response. (Maybe this could explain Tim’s above referenced quote by Naviaux re: exercise..? If it was not a mis-quote.)
Anyway, I will be sure to report back if I find any truly groundbreaking perspective (or results) there!
Doesn t mononucleosis / EBV also lead to exercise intolerance ?