Check out Geoff’s Narrations
The GIST
The Blog
Billions of people use caffeine every day. Could it help a bit with one of the most problematic and difficult aspects of fibromyalgia, ME/CFS and long COVID – exercise?
Another exercise study! We have exercise on the brain – kind of literally (you’ll see :). Exercise studies are just rolling in. Over the past 2 months, Health Rising has reported on:
- A muscle study suggesting that an amino acid combination called LOLA could reduce ammonia levels in the muscles and elsewhere.
- A new anaerobic exercise program for long COVID and ME/CFS,
- A study showing Gulf War Illness and ME/CFS are very different animals when it comes to exercise.
- A UK group which proposed using a lactate meter for pacing.
- Studies showing that, on a variety of molecular levels, ME/CFS patients’ bodies are simply not responding to exercise.
- The Intramural study finding suggesting that brain is not communicating properly with the muscles during exercise.
THE GIST
- We have exercise on the brain – kind of literally (you’ll see :)) This is the 7th Health Rising blog in the last couple of months to feature the effects of exercise and how one might improve it.
- Given the veritable explosion of exercise studies in fibromyalgia, it’s not surprising to see caffeine – a known athletic performance enhancer – be featured in a fibromyalgia exercise study.
- Caffeine is able to enhance exercise in several way that might be helpful in FM, ME/CFS and long COVID. It upregulates fatty acid metabolism and reduces “central fatigue” which occurs when the brain produces fatigue in order to stop us from exerting ourselves. The Nath Intramural study found evidence of central fatigue in ME/CFS.
- This small Brazilian study found that FM patients given caffeine experienced more vigor, enjoyed the exercise more, had increased muscle oxygen, etc. These findings were tied to a reduction in central or brain induced fatigue.
- They concluded, “Caffeine seems to be a promising bioactive to counteract the central mechanisms of fatigability and improve the exercise experience among FM women.”
- The question – as Lawrence Oliver so inimitably put it to Dustin Hoffman in the Marathon Man – “Is it safe?“. Could a caffeine-induced improvement of central fatigue allow people with ME/CFS and long COVID, in particular, to push too hard, damage their muscles, and cause more post-exertional malaise (PEM)?
- Or, since central fatigue and increased effort are present in both these diseases, might caffeine’s ability to reduce central fatigue and effort perception allow them to exercise a bit more and become a bit fitter and healthier?
- We don’t know. In general, it appears that muscle fatigue is produced by the brain while muscle pain is produced more by the muscles – suggesting that caffeine might work best if fatigue is the main problem.
- Caffeine’s ability to reduce “perception of effort” and improve performance might be able to help with the increased perception of effort the intramural study found was associated with exertion in ME/CFS.
- Caffeine, of course, is a central nervous stimulant that can be helpful or not depending on your biological makeup, how often you use it, etc. Studies show wide variability in results from person to person.
- Caffeine enhances alertness and motivation, can help keep you regular, and may protect against some brain conditions. On the other hand, it can produce heartburn and nausea, irritability, and jitteriness, and, when taken in large amounts (over 5 cups/day) can inhibit calcium absorption in the bones.
- This study suggests that caffeine may be able to help some people with fibromyalgia, and perhaps similar conditions, exercise a bit more and get a bit more fit and that, of course, would be very helpful.
- If you’ve tried to use caffeine to help you exercise, please tell us how it went.
Caffeine and Exercise
Exercise – the situation is not as simple as one might think.
That’s a lot! And now comes a fibromyalgia exercise study. The fibromyalgia (FM) field has gone gaga over exercise. Since the beginning of the year, I counted no less than 12 FM exercise studies.
While it’s clear that exercise can be helpful for many people with FM, studies also show that people with FM exhibit significant muscle issues and have problems with aerobic energy production; in other words, the issue is far from simple.
Given all the interest in exercise and FM, it’s not at all surprising to see caffeine show up in an FM exercise study. While caffeine is used by 90% of adults in the U.S. to sharpen their attention, athletes also commonly use caffeine to enhance their performance. It’s been shown to positively affect exercise in many ways including:
- Increasing endurance via the enhanced mobilization of fatty acids, thus allowing one to stay in aerobic energy production mode longer.
- Reduction of central fatigue; i.e. caffeine allows the brain to activate the muscles for longer periods of time than it would otherwise, thus improving endurance.
- Increases the breakdown of fats in fat cells – providing an efficient energy source.
Studies suggest that all these factors may be deficient in chronic fatigue syndrome (ME/CFS).
The Fibromyalgia Caffeine Exercise Study
The small (10 FM / 10 healthy controls) Brazilian FM study, “Caffeine Attenuates Exacerbated Central Fatigue during Moderate Intensity Cycling Exercise in Women with Fibromyalgia“, attempted to figure out if caffeine helped people with FM exert themselves, and if so, how.
It gave half the group a caffeine tablet and the other a placebo, and monitored a bunch of things (maximal voluntary isometric contractions (MVIC), voluntary activation (VA), quadriceps potentiated twitch torque (Q tw-pot), heart rate, muscle oxygen saturation, perceptive responses, mood state, localized and widespread pain, and sleepiness) before, and then 15 and 30 minutes after, exercise. (I could not find the caffeine dose – the paper and an adjoining one were too expensive to purchase.)
The study found that caffeine increased the number of “maximal voluntary isometric contractions (MVIC)” and the “voluntary activation (VA)” in both groups.
Maximal voluntary isometric contractions refer to the maximal force generated during an isometric muscle exercise. As exercise continues, a reduction in the maximal force generated is caused by the brain pulling back. This study indicated that caffeine was able to keep the brain from doing that to some extent.
Voluntary activation also refers to the maximal amount of force which is voluntarily generated. Once again, caffeine allowed the participants to voluntarily generate more force at the muscle levels during exercise.
Caffeine has been able to reduce “perception of effort”, thus enabling people to exercise longer. High levels of “perception of effort” have been found in ME/CFS.
No increase in the quadriceps potentiated twitch torque (Q tw-pot, though, suggested that caffeine did not improve “peripheral fatigue”; that is, fatigue generated by the muscles themselves).
The positive results weren’t limited to the brain, however. Caffeine also increased muscle oxygenation, perceived vigor, and energy, and decreased leg muscle pain, sleepiness, and perceived fatigue in both groups.
Caffeine only improved feelings of pleasure / reduced feelings of displeasure and exercise adherence likelihood, though, in the group that presumably needed it the most – the FM group. It made exercise more enjoyable for them – potentially a big deal in disease in which kinesiophobia – the fear of experiencing pain due to movement – is probably present.
The authors concluded:
“Caffeine seems to be a promising bioactive to counteract the central mechanisms of fatigability and improve the exercise experience among FM women.”
Other fibromyalgia caffeine studies have been done. One found that caffeine may help people with more severe fibromyalgia experience less pain during exercise. A very large study also found that caffeine was associated with reduced pain, catastrophizing, and improved physical function in FM patients who were using opioid medications (but not for those who were not.) Finally, one study found that fibromyalgia patients ingesting high levels of caffeine (over 5 cups pf coffee a day) were in greater pain than those taking in lower levels.
Safe or Not?
The question – as Lawrence Oliver so inimitably put it to Dustin Hoffman in the Marathon Man – “Is it safe?“. Could a caffeine-induced improvement of central fatigue allow people with ME/CFS and long COVID, in particular, to push too hard, damage their muscles and cause more post-exertional malaise (PEM)? Or, since central fatigue and increased effort are present in both these diseases, might caffeine’s ability to reduce central fatigue and effort perception allow them to exercise a bit more and become a bit fitter and healthier?
Rob Wust’s study showed that intense exercise can damage the muscles in long COVID, but we’re not talking about intense exercise – this is more about how caffeine might help people with FM/ME/CFS and long COVID tolerate mild exercise.
Central fatigue is produced by neurochemical changes in the brain and can reflect, in part, signals coming from the muscles indicating that they are losing strength. In central fatigue, the brain produces symptoms of fatigue to stop the exertion. The muscles also help stop exertion by sending pain signals to the brain.
It may be simplistic, but it may be that caffeine might help most in those who experience more fatigue. Fibromyalgia and ME/CFS, though, add an interesting twist with their central sensitization. Because pain signals sent by the muscles are probably amplified in the brain in both diseases (but particularly in FM), pain in the muscles may not indicate that any damage has occurred.
Note that a study using healthy people found that caffeine’s ability to reduce “perception of effort” resulted in improved performance. It’s possible, then, that caffeine might be able to help with the increased perception of effort the intramural study found associated with exertion in ME/CFS.
Nobody thinks caffeine is going to turn someone with FM, ME/CFS or long COVID into Arnold Schwarzenegger – but could it help around the edges?
Caffeine, of course, is a central nervous stimulant that can be helpful or not depending on your biological makeup, how often you use it, etc. Studies show wide variability in results from person to person.
Caffeine enhances alertness and motivation, can help keep you regular, and may protect against some brain conditions. On the other hand, it can produce heartburn and nausea, irritability, and jitteriness, and, when taken in large amounts (over 5 cups/day), can inhibit calcium absorption in the bones.
Since the effects of caffeine can vary so much from person to person, it’s impossible to make any prescriptions but this study suggests that caffeine may be able to help some people with fibromyalgia, and perhaps similar conditions, exercise a bit more and get a bit more fit and that, of course, would be very helpful.
If you’ve tried to use caffeine to help you exercise, please tell us how it went.
Health Rising’s Quickie Summer Drive Gets Amped Up!
Thanks to the 149 people who have given a nice jolt to Health Rising’s Summer Drive with their support over the past couple of days. We are almost halfway to our goal of $20,000!
As a former avid exerciser one of my overriding goals is to learn what’s gone wrong during exercise – and ultimately find a way to fix it.
This blog – and ones before it demonstrate a key focus of Health Rising’s: to explore what’s happening during exercise and find anyway possible to enable people with these chronic illnesses to “exercise” or exert themselves in a safe manner.
Being a formerly an avid exerciser, the subject of PEM and exercise intolerance has absorbed me since my first acquaintance with ME/CFS. If that focus resonates with you, as well, please support Health Rising in a way that works for you.
Great article on a favourite topic of mine! There’s no doubt that caffeine containing plants have been helpful in managing my ME/CFS. But since covid, the HPOTS layered on top of ME/CFS has necessitated I limit and sometimes forego it altogether. However, having recently gotten my HPOTS more under control, I’m really enjoying my morning coffee and afternoon matcha.
All types of green tea, but matcha and gyukoro in particular, contain the pshychoactive amino acid L-Theanine, and this acts as a seatbelt for the caffeine, causing it’s energy to release more slowly and balancing the stimulation with a sense of calmness. It also increases mental focus. Even when my HPOTS restricted coffee I was often still able to consume Matcha as it was more balancing and less activating to the sympathetic nervous system.
For this reason I suspect that green teas will be the best place to start for those with ME, FM, POTS and Long Covid who want to mobilize some energy for paced activity. All these Health Rising narrations are Matcha-powered! 🙂
Matcha it is! I had no idea that L-theanine was able to do that. I love tea. I bopped into a tea shop in Bainbridge Island years ago and was fascinated by all the different kinds of tea which led me to check out the history of tea. Its got quite a history. Who knew? I’ve been focused more on coffee lately – I really need caffeine to get going in the morning – but I will try out green teas, in particular, matcha, which I never got around to try.
I don’t like green tea or matcha (wish I did) but I do enjoy a coffee each morning. It does feel slightly too stimulating at times though.
I have a bottle of L-theanine in the drawer which I haven’t used much. I wonder if I took one with my coffee if it might mimic the effects of matcha. Will give it a go the following days.
Georgie, please let us know how well that works.
Geoff is right about L-Theanine, to a pt. And, yes, taken with coffee, it can have the same affect as it does in green tea. That said, 1st off, caffeine itself is not actually a source of energy per se, even though it does make most people feel more energized. But since it’s not a source of actual energy, L-Theanine does not “cause its (caffeine’s) energy to release more slowly.”
(That is a common misconception about caffeine, though, & this is not at all meant as a criticism of Geoff.) The reason why I brought this up is that knowing how caffeine works helps explain why L-Theanine does what it does. There’s another reason I brought it up that I’ll get to in a min, as well, that could have an impact on people with ME/FM/etc. (& if any of this was addressed in the article I’m sorry – I just read The Gist & started on the comments because I’m really fried rt now.)
Anyway, re caffeine & L-Theanine: Caffeine blocks adenosine receptors. Adenosine is a chemical our bodies produce throughout the day that eventually builds up & makes us sleep at night. So, in essence, caffeine temporarily prevents sleepiness; it does not provide actual additional energy. (It also has other effects on the blood vessels & the nervous system that cause some of its impacts on people, too, some of which could be a concern for those with our illnesses, as well.)(& its possible diuretic affects could be an issue, too, but there is a lot of debate about that.)
But re adenosine receptors being blocked, it is important to note that caffeine does that, because it does not stop adenosine from being produced; just from being taken into its receptors throughout the day. This actually makes the adenosine build up even more, eventually causing more sleepiness, rather than less, in SOME people when the caffeine wears off (& the body is hit with all that adenosine at once).
Also, having adenosine receptors blocked causes SOME people to actually produce more receptors, too, so they can still take it into the central nervous system. So, in those people, caffeine intake can actually have a paradoxical fatiguing affect, as well. (Clearly another reason to use caution with it in an already fatiguing illness.)
As to L-Theanine, I don’t have the energy to get into how it works, though Geoff’s explanation was mostly rt…….but the following link explains some, & it even goes into taking it with coffee: https://camillestyles.com/design/garden-color-schemes/
Note: this is not a source I am familiar with, & normally I wouldn’t post one I don’t know well & trust, esp one that is not specifically medical, but I was trying to quickly find something to address this, & I did quickly skim the article. What it says fits with research I have previously done about L-Theanine, along with addressing the question asked about coffee. (& it explains some other benefits of L-Theanine, too.)
I hope this makes sense, because I’m really fried rt now. And normally I wouldn’t correct the statement Geoff made, because it’s close enough to what really happens, & is helpful for people to know (I’m not criticizing him at all)……but I did bring it up, because the true way that caffeine acts on the body could potentially have an impact on fatigue in the ways I explained, as well as the one mentioned in Cort’s article re possibly allowing one to overdo it & thus lead to PEM.
(Incidentally, I am one who definitely used caffeine to be able to exercise, & paid the price for it with PEM that has lasted many yrs now.) My body absolutely does not like caffeine, even with L-Theanine. I do drink green tea, but decaf, because it has a lot of other benefits from the L-Theanine (& because I just happen to like it.) That said, while we all have a lot of similarities, there are also many differences among us, so this news re caffeine may still be promising for many.
Some research suggests the EGCG in green tea might help with wakefulness
A webpage discussing garden colour schemes?!? No mention of l-theanine there but lots of ad links. Makes me question this whole comment.
Like I said in my comment, it’s not a site I’d know of & normally I wouldn’t post anything that I’m, not familiar with & really trust, etc. (I made that very clear on purpose).
However, I did go over the article before posting it, & it did inc info about L-Theanine that is on target with the previous research (much more thorough) that I have done. I don’t know why the article didn’t show up if you went to the link, but there was good info in it.
And, I went with that one in particular because 1. I was wiped & didn’t have the energy to go back & find all my previous research, & 2. it did specifically bring up how to use L-Theanine with coffee, which was something that was asked about on here. Also, the author is not just one who discusses garden color schemes, according to the bio following the article, though, no she is not one I’d normally go to, as I said.
I’ve been sick for 20 yrs & until the last 1.5 yrs, I literally did daily research on these illnesses, using a lot of professional sources, as well as sources like Cort’s site, etc….not necessarily a ton on any given day, because I was too sick for that, but enough that it all added up to a lot. (The last 1.5 yrs, I just have not been able to handle that much, but I still keep on top of it, & still get a lot of research sent to me, too.) So, I have a ton of it that I have collected. Thus, I did not have the ability to go back thru it all last nt. And that’s why I pointed out that I wouldn’t normally use an unknown site, but that the info on it was correct.
I did just now click the link & I dont’ know why it won’t go to the article I had pulled up. However, it does have a search feature & that brings up other previous articles, & they are abtou a a range of thigns; not just garden colors. I can’t find the L-Theanine one that I had before, though….again, no idea why. But I would never post something with dubious info. I am v thorough in my research when I am able to manage it. However, as those of us with these illnesses, there are days when I can’t manage much of anything, & when I posted this, I was not up for doing a lot of searching. I barely managed all that I did & wrote.
And, now I have used up today’s energy replying to this. If not, I’d try another search separate from the site to see where the article went.
very short PS re the article link…..again, no idea where the actual article went, but if you do a search on caffeine and adenosine, or on caffeine & L-Theanine, or caffeine and coffee, etc, there are a lot of articles that show up…..you should be able to find many that will confirm what I wrote….as I said, I’d do so, but am now entirely done in
do you really think I’d waste my time & energy (or that of anyone on here) writing all that I did, just to post abotu garden colors intentionally?
Thank you for all that information. I hope you were able to rest.
I have seen in other groups that someone posts one link and somehow another comes up.
I think the quality of your information shows that you are genuine and the wrong link is just a blip.
So thank you, and rest up.
Thanks for your reply Diane. I felt really bad after the wrong link came up & the comment about it was posted. I’d never intentionally do that, & I appreciate what you said.
I’ve read that, too, Matthias.
I can’t drink caffeine any more – severe ME, I noticed early on that it ramps my body up giving me higher heart rate and feeling of anxiety and wired really unpleasant ramped up feeling. So I stopped a few years ago.
But I did used to drink a bit in the early days, and I found that it disguised how much energy I was using, made me feel like I was fine, almost like it was covering the fatigue that would normally tell me I’m at my limit, so I’d keep going doing things and then afterwards I would get PEM way worse a a result. It was a warning to me that for me at least, listening to my body is a requirement of keeping myself inside safe limits. And ignoring that doesn’t lead to good things.
How did we go from a major study to caffeine, we might as well go to a fortune teller. Sorry for being blunt.
It’s easy – a study appeared in a scientific journal – no spirit guides required. It’s actually shown up in at least FM studies.
I was quite interested in it as caffeine is one of the very few substances that can for a period of time lift me out of the symptoms of ME/CFS/FM. In fact, it’s the only thing I can think of that can readily do that – and for me it only takes a few sips! I seem to be hyper-responsive to it.
I have to watch that I don’t take too much but when it works it’s pretty amazing. 🙂
Hello
I think of coffee as my enjoyable medicine..Has to be reasonably free of herbicides light roasted and quarter or third strength black..
It i s a happy mood enhancer exercise expander and digestive aid.
People have tut tutted for yrs so am fascinated by this research Cort.
Perhaps drink 5 or 6 cups of this brew daily..always grind my beans. Infuse and filter.
Cheers
Not to be the person who says the same thing on every post LOL but caffeine is a huge factor for many with spinal CSF leaks or intracranial hypertension because of how it affects blood flow (and possibly CSF production). Most of us use and/or avoid it as necessary as part of symptom management.
For me caffein causes heart rhythm issues, anxiety, insomnia and heartburn.
For over 40 years I have drunk coffee, sometimes up to 25 cups a day.
I was diagnosed with fibromyalgia in 1998 and can honestly say caffeine has made absolutely no difference to my fibromyalgia symptoms or how I feel
I didn’t include it but one study found that people with FM who drank over 5 cups of coffee day were in more pain; i.e. higher coffee consumption was not beneficial.
I have heard people say how badly Caffeine can affect their pain.
The only way I do feel any effect is if I don’t drink enough.
My energy level literally plummets in a very short space of time. This is nothing to do with my fibromyalgia, it has affected me this way from a young age, in my late 20’s.
And my attention span almost goes to nothing.
It’s amazing how our symptoms can differ, and it’s no surprise why diagnosis is so difficult
🫨wholly snappin’ aresholes
Martha 25 cups!!!
That’s gotta be a new world record
Never heard that phrase before, made my day .
I’m part hillbilly🧙♂️
Gotta have a sense of humor with this disease or you’re boat will sink even further
I drink soft drinks with caffeine a few times a week, sometimes daily. The amount may vary from a 23 ounce can to a 32 ounce cup and half a refill. I’ve also gone without it for at least a full week at a time. I can’t tell any difference in alertness or energy with or without it. The only thing I do think it may be helping is to supplement my Rx med when I have a migraine.
Oops -that was supposed to be a 12 ounce can. Lost coordination between phone holding hand and typing hand. LOL.
Thanks for this Cort and Geoff.
If I have to do something I find I need to eat something first, if this isn’t enough then a glass of a soft drink that has caffeine. These two power ups help me to do something when the thing can’t be changed. Also just when I’m struggling to do normal things.
I haven’t tried teas in over 30 year as they give me indigestion but maybe I’ll try matcha.
Years ago, I went to a conference where they were discussing research on coffeine. They postulated that genes were a major factor. and 50% were helped by coffee, and 50% were not. I’v had genetic tests, and they show I’m in the benefit vs non-benefit group, I do enjoy my morning coffee and afternoon green tea, and feel the benefits of more energy.
I accept it may help Fibromyalgia. And when I had mild ME/CFS caffeine was great. It helped in multiple forms of exertion including exercise. However since I permanently worsened 8 years ago from a single flu shot. Caffeine isn’t helpful for physical exertion with severe ME/CFS.
The problem is anything that creates a false energy I call ‘Phantom Energy’ can take a ME/CFS patient beyond their energy envelope (threshold) which triggers a ‘Post Exertional Malaise’ PEM crash.
‘Phantom Energy’ is fake energy. I have to remember it always brings a PEM crash if I use it. Adding caffeine takes away detectable fatigue, creating that phantom energy illusion. It’s actually like an amphetamine.
Note: A minority of MECFS patients do well on certain ADHD drugs, But most of us don’t
Even natural dopamine highs from feeling good with a social interaction, can also create Phantom Energy, we enjoy the experience so much and feel fine at the time, that we extend that time socialising. But we have a much greater chance of triggering a PEM crash from any of these fake Phantom Energy highs.
.
Some days we can have Phantom Energy for no reason, but it’s not real energy. So I’ve learnt I can’t assume I can do more, because of so many severe PEM crashes in the past it’s caused. And I’m still reasonably often reminded of this because it happened just last week, where now I’m suffering in another PEM crash!!
Phantom Energy is like a high interest credit card… easy to spend up large… but has the highest most punishing interest and penalty rates ever!
However all that said, I find caffeine helpful for cognition, and clearing the haze. But I’m lucky as for me mental exertion doesn’t trigger PEM as easily as muscle exertion. However others with ME/CFS their brains neural exertion triggers PEM. So caffeine probably is not so helpful for them
My experience too. Very wary of “central fatigue “ theories, doesn’t add up with evidence of dysfunctional energy production and damage in
muscle at cellular level . When was less severe often felt “energy “ , especially when stimulated by social interaction- , music, feeling happy and excited- always bad consequences, but I could recoup to baseline in days or weeks. But since c jab, way more severe, still get urge to move more but makes even worse. 31 years should have learned – but urge to move from my brain has always been much stronger than my energy capacity. We badly need sub group diagnostics to avoid misdirected approaches harming where not suitable.
Caffeine made me suicidally depressed when I first came down with CFS. This condition abated immediately when I went off coffee.
I do think having 5-6 bottles of mocha frappucino helped me get through doing too much, until I crashed. I improved my diet and slowly cut back to one homemade vanilla latte each morning. I do physical therapy exercises soon after breakfast, and it’s the only time of day I can reliably get the entire routine done. I just thought it was because it was the beginning of the day.🤷🏻♀️
I use coffee to maintain my energy. If I do an exercise class I drink two cups before class, then another cup after, to do other things. It helps with fatigue, and gives me a little more energy.
I try to avoid caffeine after 12 pm, in order to sleep better.
Ironically, I was extremely athletic as a child and young adult, and had a first episode of muscle fibrositis age 15 after playing football and netball intensely. I still believe that a sort of burn out occurred, too many chemicals hit my muscles and created damage. It has been difficult for a very competitive person like me to manage a condition that prevents me from pushing hard as is natural to me. And, also very difficult over the years to be judged, and looked at like someone who has a mental condition,rather than a biological condition affecting energy and pain.
Coffee is my best tolerated stimulant, but since menopause I cannot tolerate even one cup, or even half decaf, or I have severe insomnia. Apparently some folks have impaired caffeine metabolism as they age.
Hi Sandra – that would be the effect of caffeine in decreasing your oestrogen levels ( decreased oestrogen can cause insomnia)
Hi Dorothy, no, I don’t have insomnia if I don’t drink coffee. There’s an enzyme required to metabolize caffeine that can decrease with age
https://www.uclahealth.org/news/article/caffeine-sensitivity-grows-as-people-age
Thanks for the link – I’ll check it out 🙂
Caffeine is a daily necessity with Tylenol that helps me function more now than ever as I have developed chronic headaches/migraines since menopause. It gets me up in the day and helps definitely with mood and energy to function and get through the day. Nothing else works like caffeine for me and I believe it helps with blood flow. Me/CFS is brain and muscle related in my experience.
P.S Thank you for all you do providing this info and keeping us updated all the time. So much appreciated!
Hi Connie, you might be interested in looking into medication/over-use headaches and discussing with your doctor, as you are using Tylenol daily.
When I was at my worst, caffeine was the only way I could do my morning sun salutes and raise my arms over my head in the shower to wash my hair 🙂 I had always assumed it was due to its effects on acetylcholine.
it probably was your bp that increases with Coffee.
I had this problem with lifting my arms too- it was a blood pressure problem :
Orthostatic hypotension, (coffee works for that but cant prevent PEM)
Vasoconstriction for the win! That was my other guess.
Thanks for the blogpost,
but what utter nonsense, (not your blog, 😄🩵,
but the study that suggested it-
that makes it clear that they dont understand PENE /PEM at ALL…
caffeine does not prevent the crash after exertion in ME.
We all (should) know bec I guess thats the first thing you try.
I couldnt even tolerate caffeine anymore for YEARS (chocolate too)
even though I was a coffee lover.
nowadays a tiny bit is okey but not always without consequences.
When you have severe ME, things that should normally give you energy can make you crash.
If that does not apply, misdiagnosis could be probable. Thats the thing about ME.
Whats interesting is that many of us are helped with Benzodiazepines !!! (me too) why is that?
It seems as if we start from scratch and have to remind the scientists that we are not tired !
Even Dr Bateman admitted once that stimulants dont work in „pure“ ME.
dont you find it a bit frustrating that they come up with ideas as if we didnt try that before.. 🙄🤭
But as always, thank you for your work, love your blog !
ups, Of course for FM this may be different, (didnt see it was an FM study)
but for ME no way this can work.
Thank you for this article. I lost the ability to tolerate any caffeine when my ME and POTS got really bad. This was about 6 years ago. Over the last year I have gradually started using HRT (patches, utrogestan, and finally testosterone) and it has had an incredible effect on my heart rate. Since I use the visible app it’s been amazing to have tangible data for things that usually rely on self reporting. My resting heart rate is lower and my HRV is increasing. My POTS symptoms have improved to the point I had to stop taking medication (Ivabradine) and the spikes I get when moving about are still present but much more manageable.
I wonder how much of a role early perimenopause (I’m 41)/menopause plays in a lot of my symptoms and specifically caffeine tolerance in this context. I have found I am able to have a bit more dark chocolate and tolerate the stimulation. I may give some some gently caffeinated drinks carefully a go to see if they help or create ‘phantom energy’ like someone mentioned.
Certainly feels like a cheap, relatively safe option to try, a bit like the nicotine patches (which helped me with brain fog quite a bit!).
Many thanks again to you Cort for all your work.
Oops, I seem to have posted this a reply to you Karin but meant it as a stand alone comment.
Don’t be too hard on the study – it was on fibromyalgia, not ME/CFS – and was not focused on PEM at all.
As the comments demonstrate some people do well on caffeine and others do not. I suspect that people who are better shape do better on caffeine although I know someone who has very low functionality but for whom it helps.
The times when I don’t respond to caffeine are the times I am the most exhausted. The “caffeine switch” just turns off.
I’ve never considered trying caffeine to help me tolerate exercise more, though. I had never thought of that.
ok, fair enough, its an FM Study.
Frankly, I’m pretty much done with studies
Everyday on the news a “new study has just come out”…then near the end of the segment they always state…”more evidence is needed”
Caffeine has always been central to helping with my ongoing battles with mental fatigue. I haven’t especially noticed it helping with exercise. Curcumin seemed to help me quite a bit.
My liver does not tolerate coffee well, but caffeine tablets helped me a lot when exercising at first. The longer I used it, the less difference it made, until I just stopped using it. If it works for you, you can use it as a booster to get your exercise program going, but expect the effect to fade away after prolonged use. Note: Some brands of caffeine tablets made me feel horrible. I am in South-Africa, so recommending a local brand that worked well for me would not make sense.
I laughed when I read this as for a long time I’ve had to have a Costa coffee every day as it gives me a lift somehow. No one believes me they think it just an excuse to get a coffee.
Caffeine is a lifesaver for me. It helps with migraines and FM. Not sure about the ME/CFS. I did not lose my tolerance for coffee (my drug of choice) when I became ill 10 years ago, though I don’t need as much to function. Interestingly enough, my epigenetics show that I am a super fast metabolizer of caffeine, whereas I metabolize and clear other medications so slowly that they can build to toxic levels. I believe that just as we can test for our ability to tolerate medications, we should also test for other substance like caffeine. This might explain why so many lose their tolerance for caffeine when they develop FM, ME/CFS, or when they reach menopause. Of course this has nothing to do with the exercise study, but I thought it interesting. I was an exercise fan before I developed illness like you, Cort. I sure miss the endorphin rush after a good workout. I am still able to take a short walk, or to do some mild stretching within my limits. But now I get shaky, sweaty and exhausted just standing in the kitchen to prepare a simple meal.
I wonder if I’m a super metabolizer – its simply amazing how little caffeine it takes to get me going at times. That hasn’t changed at all over time. I’m still as responsive as I was ten years ago.
My twin brother is not though. Something must have changed in me.
I Cort,
Didn’t know you had a twin brother. Is he also suffering from ME ? I am asking because a two twin sisters in Canada (one with extremely severe ME and the other in perfect health) were participating in a study from Dr. Moreau and this lead to the development of the first molecular diagnostic tool for ME.
https://nouvelles.umontreal.ca/en/article/2020/11/12/a-new-test-for-chronic-fatique-syndrome/
Wow…I didn’t know that! Yes, he is in disgustingly good health and has been since I got ME/CFS 40 years ago. Thanks for the link!
I can’t tolerate caffeine (in coffee or mocha coffee) – it makes me very nauseous. I’ve learnt (the hard way) if it’s combined with say, a visit to a London theatre, including train and tube travel (sensory overload), it adds up to a debilitating ‘crash’ involving vomiting (in public!) and missing out on the theatre show altogether.
I tried to test this response to caffeine at home and one coffee makes me nauseous after about 30mins to an hour. After a few tries with the same results I gave up coffee! This was a few years ago but I’d be reluctant to try it again, unless as a tablet it wouldn’t produce side effects?
Admittedly other travel-based situations (without coffee drinks) have induced the vomiting ‘crashes’ – even when taking Betahistine as a preventative, which usually helps.
Like another commentor, I am in post-menopause now, so I too wonder how much these fluctuating hormones affects our situation?
PS. With exercise, even just walking upstairs, I feel like I’m on anaerobic energy almost immediately, and get very out of breath with a racing heart. As such I’m just putting on more and more weight!
Hello Cort,
I made a small donation. Once I’m diagnosed (and free of specialist appointments) I hope I can donate more regularly.
Thank you for your unfailing efforts and welcoming attitude in running Health Rising.
Sarah Tee
Thanks so much, Sara! Good luck with your search and I hope it’s successful!
A dr. insisted I try coffee with caffeine as a trial for help with energy, for ME. I used 1/8 teaspoon, drank it at nine in the morning. I was “wired” and wide awake till two the next morning. Also, began to crash. If you decide to try it, I would suggest proceeding with caution. I have not had any issues with chocolate, but it is something I indulge in when I get really cold and can’t seem to get warm any other way. that happens just a few times per year.
Coffee and ME
The highlight of my day
I’m 12 years into progressive decline with ME. Now I am moderately severe with very low “feet on the floor” time due to non-POTS OI and severe PEM if I exceed my envelope. When I do a NASA lean test my blood pressure goes *up*. By monitoring my blood pressure I’ve learned to be more sensitive to recognizing the early warning signs of over exertion to guide my pacing. Ten minutes is my limit for standing. I only eat two solid meals a day because that is all I can manage to reheat from the freezer of dishes prepared for me from scratch.
My morning grooming routine takes me two hours to complete and recover from, even though I’ve had to largely give up shaving and bathing. Coffee is the key to bootstrapping myself to my first meal. I used to experience the undesirable side effects like GERD, jitters, and nervousness, I until I discovered Bulletproof Coffee. I understand that Dave Asprey’s hyper salesman celebrity persona can be off-putting. But if you look into it with an open mind, he cites a lot of research. For me, the n=1 experiment is the one that I care about. I need results more than air-tight proof of mechanisms. What I have found empirically is that there is a *big* difference in the quality of coffee products. Asprey’s thesis is that the bad side effects of coffee are caused by mycotoxins from mold in the processing steps. When I tried coffee that was batch tested and certified to be free of mycotoxins I had none of those side effects. So I believe that there is some truth to this idea. There are several companies that sell regularly tested coffee and more that although they don’t publish batch test results, they adhere to high quality standards. The effects are so obvious that it is easy to try different high quality brands and find one that works for you. Note that I do not endorse Asprey’s brand coffees. I prefer the lower acidity of a dark roast. Yes, roasting like all processing steps from bush to cup matters.
So when I can muster the strength to get out of bed my first journey is to the kitchen for a Bulletproof mocha. It takes me two or three sorties to make it, but it is worth the effort. My mocha is the highlight of my day and brings me more pleasure than anything else in my pain-filled life.
Here’s my recipe:
1. A double shot of dark roast espresso from clean coffee beans
2. 20gm collagen powder (providing 18gm of easily digestible protein)
3. 10gm to 15gm d-ribose (not only sweet, but seems to help me)
4. 15ml refined MCT oil (primarily Caprylic acid – C8)
5. 15ml ghee (homemade from *unsalted* organic butter)
6. 10ml fermented cacao powder (sourcing is important – beware of heavy metals)
7. 4ml Ceylonese cinnamon powder
8. A splash of vanilla extract (flavor & nootropic)
9. Boiling hot water to bring volume up to 350ml
Blend on high until creamy and emulsified. Enjoy!
This kickstarts my day with protein and my preferred fuel – fats. And of course, caffeine. The 400 calories help give me enough energy to function. And chocolate makes me happy!
Thus fortified, and rested from my indulgence, I am able to venture the sorties required to make my first solid meal. Only after that do I feel vaguely human, and perhaps able to attempt my “one good deed” for the day (like writing this). Ideally I would like to have green tea in the late afternoon to help me through making a second meal. My life goal for the last few years has been to be able to make my coffee and two meals without using all of my spoons. That goal remains elusive.
It took me all day to write this. When I stated there were 8 comments. Now there are 38. I can’t keep up with the avalanche of new content and comments – but thank you so much Cort, Geoff, and all the brilliant minds in this community.
I hope someday to be able to write my Lives Interrupted story. Since I can’t carry on a conversation in comments, I would like to invite folks to a slower paced conversation in the forums as I am able.
Thanks for recipe, I might try that
Thanks for taking the time to supply your recipe! I like it. Thanks for mentioning bulletproof – the advertising has really turned me off – but if it helps with GERD all the better. I had to stop using dark chocolate because of GERD. It has receded greatly after I did that I and don’t want to lose caffeine altogether 🙂
I am still so taken that caffeine is able to reduce my ME/CFS/FM symptoms. It can come at a cost – later in the day I can feel hollowed out at times and I have to pull back at times, but it’s still remarkable.
To be clear, I highly recommend the bulletproof concept, but not necessarily the brand of coffee. Asprey prefers lighter roasts for their higher caffeine content, and many like the brighter flavor for pour-overs. But that comes at the cost of higher acidity – not good for GERD. I suggest a dark roast espresso is better. Also the collagen and ghee buffer the acidity and give the mocha a luxurious mouth feel.
They say that the crash is caused by the mycotoxins. Use clean coffee and you won’t get that. The crash is one sign that the coffee is contaminated. Also always buy organic, and never instant or the big major brands at the supermarkets. Asprey reports that the US is a dumping ground for coffee that doesn’t pass mold inspection in other countries. Japan will redirect contaminated shipments to us because our standards are lower.
The key to the bulletproof idea is consuming fat with the coffee. This slows down the absorption or utilization of the caffeine to make it less of a peak and valley kind of experience. The bulletproof buzz is smoother, more gradual, and more sustained, with a gentle landing and no crash.
The combination of fat and caffeine also provides a more sustained release of the caloric energy. So I feel like I’ve had a breakfast, and can easily last until my next meal. The C8 MCT oil is critical in this regard. I do think that it is worth the cost. Caprylic acid is processed in one step in the liver – cleaving C8 into two C4 ketones which can be directly utilized by some tissues. Potentially useful for PWME.
Also I’ve developed an acquired sensitivity to coconut oil and can’t tolerate it at all. The refined Brain Octane doesn’t bother me at all. Also C8 does not cause intestinal distress that less refined can due to some of the longer chain components in regular MCT.
I assumed bullet proof coffee was simply black coffee with a wad of butter added
Thankyou for yr story.Your circumstances are certainly challenging.
LYes which coffee matters as I have already said on this discussion..coffee contains other substances and instant is the worst .I find some coffees are diuretic others not at all.
I fainted recent ly and had a coffee ..phone call to s nurse who agreed with my choice because he said coffee is a vasoconstrictor.
Best wishes to u .I admire yr spirit and thanks for the info
Well I do love my morning coffee, but find that I have to time it early in the day or else it keeps me awake at night. Some of the suggestions here sound interesting, I might try them. I am curious about the interactions between caffeine and l-theanine, I would be grateful for any links to studies about that. Maybe a bulletproof matcha tea?
Caffeine for ME patients with tachycardia and hypersympathetic function is a bad idea and medically contradictory. The same goes for nicotine and cocaine. This may also provide some patients with a temporary boost. Since my ME/POTS i no longer drink caffeine.
Like most supplements/food, I consider caffeine a tool to help me manage health and, most importantly, pace. First thing every morning, I drink an electrolyte mix that contains caffeine from green tea. Later in the morning, I drink roasted dandelion tea with a small amount of instant coffee, plus D-Ribose and oatmilk. Only after I’ve fully hydrated and have enough caffeine in my system — probably the equivalent of a full cup of coffee — can I do any activity. Caffeine helps my body (central nervous system?) wake up. I’ve learned the hard way over 25+yrs not to take the energy from caffeine and overdo exercise because the PEM is real.
I have ME. (Diagnosed in 2018)
I have tried caffeine.
Yes, Caffeine or adrenaline, or determination, can each help with excercising. Unfortunately, if you suffer from ME, each of these will help you cross your boundaries and make you crash severely afterwards. (Post excertional malaise) likely causing permanent deterioration of health. My understanding of the difference between fibro and ME is that in fibro exercise helps you improve, whereas in ME exercise will cause exertional malaise. Taking caffeine or other stimulants simply turns off the essential alarm system.
I don’t recommend taking stimulants. It brought me down from 8 (low) energy hours per 24 to 4 (low) energy hours per 24.
If I were to try stimulants again i’m sure I would end up in a wheelchair.
Good luck to you all. Keep resting.
ME/CFS is a very heterogeneous condition which is why I hesitate with absolutes. Personally I would hardly ever say “if you have ME then this will happen”. Jon Kaiser MD – who has or had ME/CFS – regularly prescribes caffeine or stimulant meds along with supportive supplements. It’s a mainstay of his practice so I would be leery stating that if someone with ME takes stimulants they will crash severely afterwards.
I’m sure that’s true for some people but not for everyone.
I have more to say, but alas ME…
I whole heartedly agree with never allowing stimulant use to let you exceed the envelope. The same line is still there. For me it helps to even get into the envelope. That is why I opened with a discussion of mindful introspection of one’s body to learn to read the signs of impending over exertion. I find this to be a difficult yet essential skill for pacing.
There is more to discuss regarding discipline, moderation, and timing.
Yes, you can make bulletproof green tea. Any hot tea works. On green tea – quality and preparation are important. Use 185F water and steep exactly 3 minutes. No hotter and no longer. Over brewing brings out less desirable components and makes it bitter. I’ve found some really nice Himalayan green tea that is not too expensive.
Just don’t try to make iced coffee – it’s gross when the ghee globs up.