« Exercise Actually Makes Chronic Fatigue Syndrome Worse» - Video by SciShow

https://www.youtube.com/watch?v=wxSwYUennBA

SciShow has over 8 million subscribers. They just released a video on ME/CFS.

It’s surprisingly accurate, and they even cover the PACE trial. The video is 8:11 long.

 

AI transcript, uncluding timestaps. There’s an ad in the middle that I’ve removed.
The next post contains a short summary.

00:00:00 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

00:00:29 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.

00:01:02 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.

00:01:31 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

00:01:58 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

00:02:29 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.

00:03:33 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

00:04:02 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,

00:04:32 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

00:05:02 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

00:05:29 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

00:05:56 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

00:06:27 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.

00:06:54 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

00:07:22 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.

00:07:52 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.

 

AI summary:

The video discusses myalgic encephalomyelitis, commonly known as chronic fatigue syndrome (ME/CFS), a debilitating neurological disease that significantly impacts individuals’ lives.

Unlike regular fatigue, ME/CFS is characterized by extreme tiredness that doesn’t improve with rest and is often worsened by physical or mental exertion. Key symptoms include post-exertional malaise (PEM), cognitive dysfunction, and lightheadedness. Approximately 15-30 million people globally suffer from ME/CFS, yet a staggering 90% remain undiagnosed, which affects their quality of life.

The condition is often triggered by viral infections, such as the Epstein-Barr virus or SARS-CoV-2 (COVID-19), and it can severely limit a person’s ability to work or engage in daily activities. The video highlights the mismanagement of ME/CFS symptoms, particularly the flawed exercise recommendations from the controversial PACE trial, which inaccurately suggested that increased physical activity could benefit patients.

Instead, proper management involves understanding personal limits, logging activities, and ensuring adequate rest. The video emphasizes the need for more research and awareness regarding ME/CFS, especially in light of the increased diagnoses post-pandemic.

 

This is really cool! I think the video generally has good intentions and is on the right side of things. And this kind of reporting to a large audience is just what we need.

Of course, looking at the script one can spot a million innaccuracies, (high inflammation?, blood oxygen nonsense?) but their video gets it better than some of the so called “experts” in our field.

If only that was the extent of the change. To a very severe person that’s barely the tip of the iceberg.

 

@Yann04 yeah, it’s riddled with small inaccuracies. I doubt they have a host of lived and traditional experts to scruitnize every single word, as we do with the fact sheet project.

If we assume they started relatively from scratch, they’ve got a pretty good grasp of it all things considered.

 

Thinking about this, I think any coverage on YouTube that isn’t psychosocial or selling BioBS, is good news.

The current situation is that most of the youtube scene around “CFS” except for some great people like @Adam pwme , is full of psychobehaviouralist magic recovery stories [Cough Raelen Agle Cough]. I watched a video about ME/CFS on my YouTube account and for weeks after I had “Cure your Chronic Fatigue with an App” “CFS gym routine” type videos recommended to me. So clearly YouTube is not doing great ME/CFS wise. So what I’m trying to say is I’ll celebrate a non-BPS video from a big channel.

 

Agreed. The details matter, but this is almost good enough. And it’s good enough to be positive.

 

'There is no inflammation in ME/CFS' is as problematic as 'there is strong inflammation in ME/CFS'. Chances are high inflammation is involved in the diseases process, it's just a question of timing. There is somewhat of an emerging pattern in LC that patients might have an inadequate initial response that then shifts into a sub-acute, prolonged hyperinflammtory state. There is at least some ME/CFS data that shows similarities.

 

Where was that? What is a 'hyperinflammatory state' supposed to be?

Better to say nothing about inflammation and be honest that we need to find a new sort of explanation surely. Why perpetuate half-baked science?

I don't actually see anything very worrying in the transcript though. TheS4ME factsheet is much better but this isn't so bad.

 

There is no infection (=trigger of ME/CFS in most cases) without a hyperinflammatory state, unless you want to use that term exclusively for sepsis etc. You will naturally miss this 'signal' if you diagnose patients only 6 months later. It's like saying there is no inflammation in post sepsis syndrome. Sure, but inflammation most likely caused it anyways. Obviously it's halfbaked and it will remain so if we keep start looking at patients only at the 6 months mark.

 

Hyperinflammation is usually used to imply cytokine storm with shock, intravascular coagulation, respiratory distress, renal failure etc. None these occur even in putative triggering infections for ME/CFS. Why use words inappropriately like this?

Why confuse people with this sort of stuff rather than just admit we don't know?

And anyway you originally said that patients shift into a prolonged subacute hyperinflammatory state not that they had that with the infection. Which was it?

 

I agree, this is pretty good, though with some inaccuracies. I particularly enjoyed the boot being stuck into PACE.

 

What you are describing is sepsis, and I am aware most (definitely not all) use the term hyperinflammatory exclusively for that.

Please think of it as increased iflammation, that's what I meant. The fact remains, we know next to nothing about the initial (acute and subacute) inflammatory (!) trigger event of any given patient.

I am not primarily making an argument for what should be presented on some leaflet or in a yt video. I don't think it will influence outcomes much.

I am making an argument for changing how we think about inflammation in terms of when we have to screen for it.

EDIT:

It seems that you have edited your original post by adding another paragraph.

This is not an either-or situation, and the definition of “subacute” can vary. I would use subacute as a period ranging from approximately two weeks to two or three months.(way below 6 months)

There can be an acute yet inadequate (inflammatory nevertheless) immune response that becomes prolonged (and changed in quality) in a subacute phase. This may result from factors such as:

Ongoing presence of the pathogen, leading to sustained immune activation or downstream epigenetic changes, which alter the immune response over time. There are many other factors that I am sure you are more aware of than me.

These mechanisms could contribute to a shifted, subacute inflammatory state, rather than a simple resolution. If this were true, we probably would not see much of it anymore after one or two years, otherwise we probably (also not certain given many issues with patient selection) would have found a clear pattern.

 

For me the video was spot on. They got the salient facts about PEM right which it goes without saying is a nightmare. Still recovering from cooking and freezing yesterday.

I have had lots of problems with inflammation symptoms as part of my post-EBV ME/CFIDS.

I have not measured blood oxygen at all but air hunger was a real problem until I understood the levers I could pull regarding diet pH.

Good to see a major YouTube science show getting it right.

Subbed!

 

No, it was the Google definition and the one I am used to. It can occur after drug therapies or car crashes or burns or whatever.

In fact it is a pretty loose term that I don't hear serious academic physicians using. Mostly third rate Twitter based researchers.

Why should we change something that has been known about for centuries - tumor, donor, calor, in Galen's terms? Why follow the third rate twitterati?

I can't follow the rest of that post - you seem to be changing your story in every sentence. I am actually interested in getting this right and have spent my life studying inflammation. I will leave it there.

 

This might be so, what you are describing is still sepsis.

Please explain how exacty I changed my story! (Edit: Please don't; waste of energy)

You could study inflammation for another 100 years, and still have zero clue about what happens in ME/CFS acutely and subacutely without testing it.

I hope you will figure it (ME) out, I doubt you will figure out the other issue. I will not engage in any further discussion. Thank you.

 

The most remarkable thing about the video is the comments. Read the comments. The comments on content that gets it right are always like this. There is so much need out there for the truth to come out.

The ideologues can lie all they want about a 'small vocal minority' who object to their pseudoscience, the reality is the complete opposite. They are the small, vocal minority who impose their will on us. They are oppressors, whatever stories they tell themselves about it changes nothing to the fact that they are either dishonorable liars, or complete tools.

 

When I posted this, it had just north of 100 comments. Most were very positive or said that they had ME/LC. Idk how it is now.

 

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