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Exercise Actually Makes Chronic Fatigue Syndrome Worse
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ME/CFS, or myalgic encephalomyelitis/chronic fatigue syndrome, is way more than being tired at the end of the day. And, contrary to situations like that, exercise is the last thing you'd want to do.
Thanks to Jaime Seltzer, director of #MEAction, for consulting on this video.
Hosted by: Stefan Chin (he/him)
Correction:
5:24 We spelled “lightheadedness” wrong!
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Sources: https://docs.google.com/document/d/e/2PACX-1vQorkWhclYGS7QSCzwXC7_rRkhCmRBbSJ7CYyQIYPYkguie2AxZ6gDnt4-GjX6o1Zl_ZQDOWWROb6Kt/pub
If you’re feeling tired during the day, some common advice might be to go for a walk, do some light exercises, or simply take a nap. But for some people, no amount of sleep or calisthenics will help. That’s life with myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS. And while there’s still a lot scientists don’t know about the condition, they’ve learned quite a bit in the last few years about how different it is from other kinds of fatigue. Including the fact that exercise actually makes it worse. [intro music] You might have heard of chronic fatigue before as a social media buzzword, or maybe as a symptom of other chronic illnesses. But when we’re talking about ME/CFS, just calling it chronic fatigue syndrome doesn’t tell the full story. It’s not the kind of fatigue you might feel after pulling an all-nighter. ME/CFS is a neurological disease. It’s not just being tired because the grind never stops. /CFS When no amount of sleep makes you feel refreshed, you may have ME/CFS. Or when exercise makes you feel like you have the flu, that’s also a symptom. There are probably 15-30 million people around the world living with ME/CFS. If you haven’t heard of the condition, maybe that’s because some researchers estimate that around 90% of people with it are undiagnosed! That’s a big deal because, as you might have gathered from the symptoms I just mentioned, it can totally change the way you live your life. You may find that doing chores or schoolwork is suddenly much more exhausting than before. You may be forced to give up hobbies that once filled you with joy because your body can’t keep up with them anymore. Ultimately, up to 75% of people with ME/CFS are unable to work and some can’t leave their bed. And a reinvigorating stroll around the block won’t help with these symptoms. People with ME/CFS see their blood oxygen levels and heart rate drop significantly after exercising. AKA, pretty much the opposite of how you want to feel after a workout. One of the most characteristic symptoms comes after physical or mental strain. It’s called post-exertional malaise, or PEM, and it’s a huge, debilitating result of ME/CFS. . It can happen when you’ve spent a lot of energy of any kind, including exercise, writing, sensory overload, or stress. But it can be difficult for people with ME/CFS to realize what caused that response because PEM usually doesn’t show up until about 24 hours after whatever happened to trigger it. . So living with ME/CFS comes with a good amount of detective work to figure out what triggers your symptoms and whether they’re even symptoms of the condition or something else entirely. The whole diagnosis process is enough to earn you one of those Sherlock Holmes hats. This SciShow video is supported by JMP, a statistical analysis software hat makes powerful analytics quick and accessible. And I mean it when I say powerful. You can generate almost any type of process control charts in JMP, from x-bar charts to P charts allowing for effective monitoring at each step of the process. And it’s all drag and drop, so you can monitor quality without pulling your hair out along the way. Using JMP’s tools, you can evaluate your processes and how you’re measuring those processes. That way, you keep measurement bias from interfering with the true data, and stick to making decisions based on signals and not noise.. JMP helps you understand the impact of your measurement protocol on the data. And they offer a 30-day free trial for anyone, anywhere. Go to jmp.com/scishow to see the benefits of visual statistics for yourself. ME/CFS comes from a combination of both genetic and environmental factors, but it’s most often triggered by an infection from another disease. Epstein-Barr virus, the virus that causes mono, is one of the more common culprits for triggering ME/CFS. To be clear, not everyone who gets mono will develop it. For the people who do, it can be confusing and frustrating to feel like you’re not getting better, while other people recover in a few weeks. Plus, ever since the COVID-19 pandemic, doctors have found that more and more people are developing ME/CFS after being infected with SARS-CoV-2. In general, long COVID is the term used to describe when you have symptoms that don’t go away for at least three months after getting COVID. ME/CFS is just one possible outcome that falls under the general umbrella of long COVID. In fact, some studies suggest that half of people who have long COVID also meet the criteria for ME/CFS. . There are some notable overlaps in symptoms, namely cognitive impairment, reduced blood flow to the brain, and fatigue They can be tricky to tease apart because we’re not entirely sure what’s going on in the body that leads to ME/CFS. One possibility is that an infectious virus can switch on a gene that messes with your immune and nervous systems. ME/CFS is classified as a neurological disease. But that doesn’t mean it’s independent from the immune system. Some of the most well known neurological diseases, like multiple sclerosis, work this way too. So there’s research that suggests broadly that several cells of the immune system work differently than they otherwise would in people with ME/CFS. Since increased inflammation is a hallmark of the disease, it’s worth further research to figure out exactly which immune cells could be problematic here. . Ultimately, figuring out what led to your symptoms and getting a diagnosis can be literally exhausting. To get diagnosed with ME/CFS, you have to experience a variety of symptoms, from PEM to cognitive dysfunction, lightheadedness when you stand up, and extreme fatigue. Plus, you have to show a specific combination of these symptoms for at least six months before diagnosis. And that diagnosis is just the beginning. The next step is learning how to manage your symptoms. One early management idea was to make patients slowly increase the amount of exercise that they did, until they could tolerate a healthy amount of exercise. If that sounds like a bad plan to you, given what we know about ME/CFS, you’d be absolutely correct. While this type of increased exercise can be helpful for physical therapy after an injury, this only makes ME/CFS symptoms worse. You can’t run away from low blood oxygen levels. Literally. Unfortunately, this idea was spread throughout the scientific community due to a controversial study called the PACE trial. The trial reported that patients with ME/CFS showed normal physical function after increasing their exercise. But the researchers defined “normal” functioning as lower than the measurement that patients needed to be included in the study.. So they could get worse and still be counted as normal by the end of the study. And even though patients and professionals alike have denounced the results of this study, that paper has still not been retracted. So since there are all sorts of less thought out conclusions about the condition floating around out there, here’s what we do we know about managing ME/CFS effectively. While there are no FDA-approved medications for the condition yet, people who live with it have found that some medications can help ease a few of their symptoms. These can include painkillers or prescription medications to help with sleeping issues. . . Outside of the pharmacy, patients can adjust their activity to match their energy levels from day to day. Keeping a daily activity log may be helpful for figuring out where any one person’s exertion limits and PEM triggers are. And once someone figures out their limits, they probably shouldn’t push past them. The general idea is if you’re feeling good, do your thing. If you’re feeling tired, rest. In fact, people with ME/CFS can even plan for big, energy-expending events like giving a presentation by taking extra rest beforehand. This way, they can minimize the chance of triggering a PEM flare as much as possible. With the boom of people getting diagnosed with ME/CFS since the pandemic, a lot more research needs to be done. But, as we learned from the PACE trial, those studies should keep actual patient experiences in mind. If you don’t have ME/CFS, exercise is often still the best medicine. At least preventative medicine. But if exercising is causing damage to your body, trying to push yourself past your limits is not the answer. Sometimes, no pain is a lot of gain.
#Exercise #Chronic #Fatigue #Syndrome #Worse
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I have been dealing with this since I was quite young, as I try to explain this to my exercise teachers and therapists, psychiatrists and doctors, i have autism, adhd, depression, anxiety, POTS, chronic exaustion, and high blood pressure, I have the pacer test nearly every years, and after 5 laps i couldnt breathe and coughed until i nearly coughed up blood, almost passing out and shaking, and my coach said "Go drink some water and walk around the school", i nearly died.
Low-dose Naltrexone has really helped with my ME/CFS.
May I never experience the horror of ME/CFS… My heart truly goes out to y'all. I hope science hurries up to find better treatments for this awful disease.
In the meantime, I will enjoy my mobility and able body for as long as I can… Cuz you just never know what tomorrow might bring.
Pure misinformation…
I developed CFS after going through stress caused by 4 years of workplace bullying. I've had it now for 13 years and it just keeps getting worse. I did some research and found that 35% of people who have experienced workplace bullying develop CFS.
I have been trying to explain this to a certain family member for years. No matter how much I exercise I always feel like I’m going to keel over and die afterwards. I wish people would stop calling me lazy and just understand that not everyone has the stamina to exercise regularly.
sometime in 2020/2021, I got tired and never got better. I can't concentrate on anything for more than 15 minutes. I can barely write, and anything I learn just falls out my brain within hours. I'm in a PhD program and I don't know how I'm ever going to get a regular job and support myself, let alone finish
Thank you very much. In November I got COVID-19. I was almost paralyzed for a day of three, afterwards I very slowly recovered, only to find that I would be suffering long term effects. I was a reasonably healthy man, 75, long walks were no problem. 60 Kms on my bike? With a smile on my face. And now? I cannot walk further dan 1 km – with my rollator. I use an e-threewheeler to cycle (which is, by the way the only exercise my body accepts) up to 30 kms on an afternoon, with stops in between, and when we go to town I use a scootmobile. My memory has somewhat deteriorated and my concentration span is limited to about an hour or so.
My doctor was and is very helpful – I get all the help you can wish for, but as there are no treatments for post covid syndrome, I have to figure out for myself what is best for me. Fysio – worked badly, I stopped after two or three months.
I live in the Netherlands, there are a number of clinics here in our country that specialize in long covid treatment, but alas the waiting list is so long, and I consider myself lucky to be better off than many many other patients (I know a few of them) that I won't apply for a visit before there are indications that doctors have a better understanding of the problem and have treatments to help patients.
To my fellow patients: I wish you all the very best!
It should be called ME/Chronic fatigue DISEASE not syndrome. Maybe more doctors would take it seriously. Going shopping, to the dentist, visiting someone or taking a short walk make me feel horrible afterwards. No matter how much I sleep, it feels like I never slept at all. I have muscle aches and headaches constantly. I've given up on doctors. They're useless. I have no life. You can't do much when you're sleeping all day.
Not like I’m even able to begin to exercise anyway
I‘m not even a scientist nor a doctor but being on twitter and reading what people with mecfs write about their disease – THIS IS NOT A SURPRISE 😅😅 please listen to the people who are actually experiencing this. ESPECIALLY if you are a doctor. And if you are suffering from mecfs – be careful which clinics you choose, many have a very outdated approach that will worsen your symptoms significantly 💔
So after watching this, I’m sure this is what I have been dealing with. I just came from the doctors again and they said more excerise! Just because my blood work is ok, they said I need more excerise. I already get a lot and think that brings on my episodes. So I’m going to start keeping track of when it happens. Is there any meds for this if it is neurological?
So after watching this, I’m sure this is what I have been dealing with. I just came from the doctors again and they said more excerise! Just because my blood work is ok, they said I need more excerise. I already get a lot and think that brings on my episodes. So I’m going to start keeping track of when it happens. Is there any meds for this if it is neurological?
this advice to spend energy to feel more energized sounds like the blackest of magics
keep b00sting
Sometimes, low pain is lot of gain. ☺️👏
This disease make me feel useless :/
For those who want hope that they can improve from CFS/Long Covid, read about Ashok Gupta and the studies he has been doing using meditation, nervous system regulation, etc. or read Alan Gordon's The Way Out and Norman Doidge's books.
Joining the chorus of thank-yous. My sister has had this condition for a bit over a decade. We need a cure, we need research, we need funding.
When you are to tired to be tired.
All you say I already know it, you just read what's already mentioned in the internet
Surprised this video didn’t mention ruling out sleep apnea when mentioning the symptom of unrefreshing sleep.
I had CFS 14 years ago after a case of mono, when there wasn’t much knowledge about it. It’s so refreshing to see that my feelings back then are confirmed that exercise worsens the condition. I got my health back on my own after a year and half with first the elimination diet, then raw food, healing my gut, supplements, yoga/meditation. It was a long healing journey.
Thank you so much for this video. I hope people without ME/CFFS—especially doctors—watch it attentively.
I were to keep a daily activity log, that would consume a significant amount of energy. Just the activity of remembering where I put the log, of thinking through what I’m doing/have done, and working it down works consume a substantial number of spoons. Then there’s the emotional toll of realizing how little I can manage to accomplish in a day that would eliminate more spoons. What necessary activity am I supposed to sacrifice to keep this log?
The other point is that it is often not smart to “do our thing” when we feel less awful. The advice’ve gotten is to do half of for what I think I have energy. But no one has ever told me how to judge that half-way mark when day-to-day energy levels, even moment-to-moment levels, can change without warning.
Thank you again for your thoughtful and clear discussion of the ramifications of having ME/CFS. I hope you will come back with more videos on the topic if research discovers better ways to understand and treat this debilitating disease.
Thank you for this report ❤
Thank you SO much for spreading this vital information. Coming from a ME patient who has been gaslit from too many medical "professionals"
Who works with CFS. For more information and alternative treatment:
Raelen Agle (brain training. Inspiring recovery stories)
Miguel CFS Recovery
Jarred Younger (laboratory research)
Patrick Uusher
Primal trust
Anj Granieri (program: The Edison effect)
Dr Evan Hirsch
Carrie Bailey (functional nutritionist)
Dr Sarah Myhill
Gez Medinger (Long covid)
Celestine Mason
Dr Jacob Teitelbaum
Jackie Baxter (long covid breath work)
❤. Feel free to add more people or channels working with CFS
I’m still going to remain active despite the discomfort…once you stop moving, the body degrades even further. Regardless of what I do (rest or work) I still feel pain. I exercise the minimum, make my bed everyday, clean my house, cook from scratch daily and refuse to become regularly bedridden. It helps.
Where does Fibromyalgia stand in this? I had a corona virus when I was 30 and I'm now 74. Around 40 they gave a name to the widespread fatigue and pain – fibromyalgia. I've been "trumped" by people with ME CFS who believe they are much more disabled than I am. I'm tired but also in pain. Could you please do an episode on Fibromyalgia.
not surprised with the undiagnosed percentage, others would easily dismiss it and think you're just a lazy person
In the army I was prescribed PT twice a day as a cure and would be chastised and berated for not getting better. Took two years before a formal diagnosis came in. Was promptly discharged two months later without so much as a farewell let alone an apology for how I was treated.
Thank you. PEM crash completely incapacitates me. I try not to crash at all now but that means often lying down most of the day. I have had periods of remission. I wonder why some people seem to improve for periods, others stay at the same level of incapacity and still others deteriorate.
Please may a treatment be found.
For me what helped a lot was fresh air in my sleeping room. Buy a co2 meter to check the amount of ventilation in your room. Other than that a healthy diet is key.
Thanks a million for shining light on this horrific disease. We are many who have had our lives totally ruined and can’t get out of bed anymore. We’ve tried everything, EVERYTHING, to get better, but our bodies shut down worse from every try to get back. Please cover some ME/Cfs patients with severe or very severe illness, 25% of us affected by this disease are totally home or bedbound. Relying solely upon our families and/or the health care system. The latter which have VERY poor knowledge and guidelines how to care for us. Again, thanks. ❤
Thank you for making this.
I've had ME/CFS for 8 years and am mostly bedbound. Thank you so much for this well researched piece and raising awareness!
In the UK diagnostic criteria says that symptoms only need to have been present for 3 months now. Is it 6 months in the States?
I will say that it's often not fatigue that stops me doing things. So I still find it hard when that description is used that you're too tired to do the thing. I prefer to frame it as either I'm too ill to do the thing, or I don't have the capacity to do it. Sometimes I have energy but I can't do it because I will be cripplingly ill the next day. Sometimes I have energy at first that runs out within 20 seconds of a thing with no warning. And yes, sometimes I'm too ill or really don't have the energy to move, even getting to the bathroom is hard. But it's so hard to help healthy people understand this.
Thank you for raising awareness and calling out the PACE trial. ❤
I believe that’s a great description of what ME actually is. There was a few things that could have made it better like mentioning pushing while you have PEM can make PEM worse or even permanent. There are also stages … starting with acute phase and then stabilising out. Only when stable can you work on a tiny tine increase of energy expenditure.
btw venlafaxine has helped the flu-like symptoms for me…. plus the methadone for the RA
I got glandular fever when I was 5. I also have cEDS and got RA at 27; chronic fatigue is the story of my LIFE.
My mum: nah, you're just lazy
That info about pacing is incorrect. Pacing exercise is paramount for recovery
Overall, Awesome Job!!! Thank you so much for covering ME/CFS,
Adjust your activity to match your energy levels? That is not a solution that is the definition of the problem. Accept a lower quality of life. Accept never finding a place to belong. Accept a loveless life. I'd rather die.
Great vid!