The Science of Chronic Fatigue & Ear Seeds | Sci Guys Podcast
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- Опубліковано 4 жов 2024
- Dragons' Den promoted a purported "cure" to ME/Chronic Fatigue Syndrome, but are these Ear Seeds pseduoscience or a super-cure?
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I've been suffering with ME/CFS for over 8 years now and only got diagnosed last year, due to not being believed by doctors and being told it's just my depression. And now I'm dealing with people who STILL don't believe me, or think I'm not trying enough to "fix" my condition. On top of that GP's are still pushing for "treatments" that have been proven to be harmful and cause further decline in condition.
Along with ruling out other conditions, I'm under the impression that you also need to meet the Fukuda criteria to be diagnosed with ME/CFS, which involves things like PEM.
I'd also like to highlight that there is a big difference between tiredness and fatigue. In personal experience, (and I know a lot of people who agree) No matter how long I sleep or how good the quality of the sleep is, I wake up feeling completely exhausted. My whole body is exhausted, it feels like my arms and legs are being weighed down making it extremely hard to walk any distance at all. It causes brain fog which means I can't think clearly and have memory problems. I can no longer use the oven or hobs unaccompanied as I've burned myself numerous times as I've gotten confused and left hobs on for hours on end because I forget what I'm doing.
I am housebound 95% of the time and am often bedbound. I am unable to do normal daily activities due to debilitating pain and fatigue. Just making a bowl of cereal, showering and brushing my teeth can sometimes be enough to leave me bedbound for the next couple of days. I deal with Heart palpitations, flu-like symptoms, Tinnitus, pain in all my joints and muscles, dizziness, nausea, cold chills and hot flushes on a daily basis, just to name a few. I could be here all day listing how ME/CFS affects me, and yet people still just think I'm "a bit tired" and lazy.
Understandably, those who suffer with ME/CFS are desperate to find a cure, and people know that. ACU seeds are just taking advantage of those who are most vulnerable, and that desperation unfortunately means people spending what little money they have in hopes of getting back to living a "normal life".
So please please please do an episode on it, we need all the awareness we can get!
I'm also an ME sufferer (as well as a couple of other conditions) and I completely agree. I have heard a very experienced and qualified doctor (unfortunately, my brain made me forget the name 😆) say that, in his experience, he has seen many patients in end stage cancer who are not as sick as many patients with severe ME, and that calling ME 'chronic fatigue syndrome' is like calling cancer 'chronic weight loss syndrome'.
So many people hear the word 'fatigue' and think it means tired, so they assume having fatigue is no different from how a normal person feels after a hard day at work or a session at the gym. It also doesn't help that a lot of people know someone diagnosed with 'chronic fatigue syndrome' and they don't realise that, by the very nature of the fact that they know this person through work, or regularly socialise with them or whatever, this means this is a person in the top 25% of the functionality scale - the mildest form of the illness. That is as comparable to those of us in the lowest 25-35% as if it was a different condition. The only people who know how ill we are is direct family because, like you said, we are house bound, bed bound, unable to be present in society where we would be seen and known!
The sad thing is that, even from the medical and social care system, I was never taken seriously or given the support I need until I received a diagnosis of a genetic condition that I have alongside the ME (in my case it probably actually triggered the ME and I had it all my life but because it's rare I hadn't found anyone capable of diagnosing it until my 30's), yet if I only had that other condition and not also the ME then I would probably be way less disabled and need way less support and care!
There needs to be so much more awareness of the condition but those of us who really know how bad it is are mostly those too ill to do much. It makes me so angry though when people push these 'cures'. the people selling the cures are profiting off of desperate people. I've been at the place, early in my diagnosis, where I wasted both financial and physical (energy etc) resources chasing everything that someone said could help, and all it did was make both my physical and mental health spiral further down, but when you start standing up for yourself and saying 'no, I know this won't help' people blame you for not trying hard enough to get better.
When the ME association or a similar actually knowledgeable organisation announces a cure I will believe it. Until then, people need to actually do more research before making claims rather than 'well there is this one single anecdotal proof that suggests this thing work'. I'm really glad these guys talked about the this subject
Thank you for this comment, you managed to put into words what I was thinking with the importance between tired and fatigued x
I was diagnosed with Chronic Fatigue several years ago, and have just been diagnosed with Ehlers-Danlos Syndrome. Also Coeliac Disease (which they thought I couldn't have as I'm slightly overweight, but I do). Both of these can cause fatigue but they didn't try to rule out when they diagnosed me with CFS. They are worth considering, especially if you are hypermobile and/or have gut problems. EDS can cause both of those things, as well as pain and fatigue like you described.
Thank you so much for making videos like this. One of the hardest things about having chronic illness is other people not understanding.
I tried acupuncture years ago for my chronic migraines. I found the pain relief only happened while I was in the session, as it came back as soon as I left. It's likely the therapeutic setting had more to do with alleviating the pain than the acupuncture needles themselves. To be honest, given the magnitude of my chronic pain, I would've had to use needles the size of railroad spikes to notice any benefit. But that would create other problems.
A few years ago, I bought some drinks that were shown on Dragons Den. Turns out it was a scam. The company didn't actually have the products they were selling.
I was a teenager at the time and naively assumed that a BBC show would protect the viewers and not promote bad businesses/products.
I got misdiagnosed with CFS until i paid for specialist appointment in London [iim in glasgow] EDS.
The genetic testing and the test for Postural Orthostatic Tachycadaria Syndrome.
And in 2 days my results came.back ❤❤bingbingbjngn
EDS
Some people have both, but I'm glad you got the proper diagnosis.
I'm in that situation but I can't get the diagnosis atm. Diagnosed with CFS and now fibro but all signs point to some form of EDS. But NHS doctors don't get it.
I do have chronic fatigue like a lot of disabled people but probably not CFS. I've had these issues from birth which isn't typically how fibro and CFS work
Hi! Sorry I know this is a month old comment, but can you talk me through the process of getting a specialist appointment and if possible roughly how much it cost? 😊
Thank you for making this fun. I struggle to watch sad videos as it makes me feel helpless.
Ive had CFS for 26 years. I got it after a viral infection. Ive tried acupuncture and it did nothing for energy but helps with pain (sample size of me).
It is so uplifting to hear people talking about CFS who actually "get it". Your explanation is spot on. I'd love if you made a short explaing what it is. I would love to be able to send the link to people to help explain it.
This came out just after I was diagnosed with CFS/ME, and I have found it really helpful. I was diagnosed after years of having it and being 17 it has really impacted my schooling (even if I am able to go in on some days and others I can barely move), thank you for talking about it and how it affects people. It’s really helpful. Also I’m a massive fan of your work and have been for ages, keep it up.
Yeah - one of the frustrating things about ME is that it can sometimes clear up relatively quickly. For some people, taking a year off work and resting would be enough to make it clear up - I was told this might happen for me when I got diagnosed (I had the illness for 3 years already by the time I was diagnosed, I have had it bad enough to not be able to work more than about 10-15 hours a week for 3 additional years at this point & counting). For others it can be life-long, or take 12 years to get better, OR appear to clear up only to reappear at a later date. The woman may genuinely have got better over the year she tried alternative treatment - but coincidence isn't the same as causality. She many have had the exact same results with plain rest.
I'd love an episode on ME with a guest - your description of it, although accurate, doesn't even begin to explain the lived experience of having even a moderate case of the condition. I know Jessica Kellgren-Fozard did a fantastic explanation of the symptoms of servier ME on her channel (I think you've had her on yours in the past? I seem to remember an episode where you were discussing montessori education, although this may have been a side tangent to other parenting topics).
Thank you for putting balanced information out.
16:38 I think this is how I’m going to explain my cfs/me from now on 😅
I have PhD in pharmaceutical sciences. Man, I love placebo.
For example, I know roughly, how long it takes for pain medicine to dissolve in digestive system + molecules to be absorbed + molecules to be attached to right receptors. For my period pain (but not head ache), painkiller helps almost immediately. It does not give full effect, but at least some. I know, that it is not effect of the medication as in that point tablet has hardy started to dissolve. I am so freeking thankful that my brain can use placebo so effectively with period pain. I typically have positive assosiations with right medications working for me, so it is understandable, I get placebo effect more easily too. I don't typically manifest nosebo effect from medicine to me.
I also love my weighted blanket as a placebo medicine. Feeling tight in chest because of anxiety. Put the blanket on chest...And my brain starts immediately to believe, tight feeling in chest is because of the blanket. 😁🤩 Thank you brain. 🥰
I wish it could work like that for period pain, I have to wait 1 hour and some. But when I take it for a headache that prevents me from falling asleep? I'm asleep in minutes lol
The weighted blanket doesn't exactly work in that way. The idea is that the weight of the blanket swaps your autonomic nervous system from fight/flight into 'rest' mode. Maybe it helps you psychologically manage the tightness in your chest, or maybe it relaxes because your nervous system is switched out of panic mode.
@@Coccinelf In that situation I'd say you possibly can go to sleep even without the meds kicking in because you have the knowledge that you've taken them, and then they act on your body preventing it from waking you.
@@GeekGamer666 That's totally my impression, but isn't that also the placebo effect at play?
@@GeekGamer666, in conventional use, where you lay under it, it works as you describe (for me too). But when very anxious, I fold it and set on top of my chest. Then the situation is way different. Then it is the quick fix for thight feeling in chest. Obviously, you did not know how I use it when anxious, so you had no way to know it. I should have explained it better.
Coccinelf, ofcourse there is placebo effect also on play in your situation (before the medicine starts to effect). 🙂
OK. I am 11:20 minutes in and (1) Luke is right. And (2) I am really looking forward to hearing Corry hook into anyone who would sell this BS. I have ME. To dangle a 'cure' in front of someone is cruel on so many levels - firstly, it's the think I want absolutely the most and would do anything to get if it were real. Secondly, I KNOW this is bs - but lots of people will still tell you about it because they don't know it's bs, and think your ungrateful because you're not excited and lazy because you're not prepared to try every quack remedy that exists in the world and therefore not prepared to get better - and it's heart breaking. And I was ****ing tired BEFORE I had to deal with this crap - people with chronic illnesses/disabilities don't have the spoons to spare for people who think (without any kind of proof) that they can fix us.
You're right about "snake oil" but also interestingly it was a real thing before a bunch of knockoffs took over! Not a reply guy here, it's just something i think y'all might find interesting. It was brought over to the US by Chinese immigrants working on the railroads in the 1800s.
It's originally made from the Chinese water snake which is used to create an oil that's high in omega 3 acids which helped with arthritis and other joint and muscle pain. It became popular with the laborers and cowboys.
Ppl started making and selling it, but they were using the wrong type of snake so it didn't have the active ingredient(s). And most of them, like u referred to, didn't even bother trying to make it with local snakes. They just used mineral oil or other fatty oils not from snakes. I think they started advertising it as a miracle cure for all sorts in things unrelated to its traditional use. Just like essential oil mlms today lol.
It's wild 😄
Idk if there have been modern studies on the efficacy of it for it's original use. I don't think so though.
If you do an episode entirely on m.e, I'd love offer support. I've been diagnosed for about a year and a half now
I just wanted to say thank you. Also the Cochrane library is an incredible resource for medical research accessible to the public - the reviews often if not always have a plain language summary in multiple languages so if you want to learn or prove some pseudoscience wrong its a great source!
Could you do an episode on FND?
AHHHHAAAHHHHHAAAA. Hi. I have a version of chronic fatigue and my mom always tries to put these seeds on my ears and it does NOTHING. I still wake up at 4am on 4 hours of sleep. I'm still tired.
If acupuncture can't be tested, you won't find an acupuncturist who knows what they're doing.
So dragon’s den is basically shark tank but without the fake money💀
Pets can talk corey
Corry, the talking pets thing is not about wanting to believe that pets can talk.
People are annoyed at your blatant refusal to see non-standard human communication as talking.
Disabled people talk in unconventional ways all the time, we still call it talking.
We already know cats and dogs understand human speech. We already know they understand words for objects, names of other people and pets, their own names, they understand words for actions and words to describe things. Those are nouns, verbs and adjectives. Sure, they might not be able to understand the logic of grammar, but neither do many humans. Instead we just learn it by listening to others speak.
Dogs can be trained to sniff out specific illnesses and conditions and alert humans of those.
They have an understanding of speech equivalent to a small child.
And idk about you, but if a small child told me: “want play outside“, I’d consider that speech even if it isn‘t as sophisticated as most adults can talk.
So what really is the difference between how dogs and small children communicate?
Is it just the verbal communication that makes humans special? Because, again, plenty of humans talk without verbal communication.
Is a mentally disabled non-verbal adult human not capable of talking if their sentences are too simple?
Corry, you are the one who is basing this statement on what you want to believe, not the other way around.
Your refusal to consider the usage of buttons to communicate in simple words and phrases talking is unscientific and quite frankly steeped in a human superiority complex and is (I assume unintentional) ableist.
It‘s appalling that you compare people defending the claim that pets can talk to spirituality.
I wish there were studies on the extent to which dogs and cats can communicate with buttons but afaik there are none so far. Which means the only evidence we have to go off of for now is prior scientific knowledge and anecdotal evidence.
But knowing that dogs are capable of understanding human speech is enough to consider it possible for them to also replicate it.
The button videos could all be fake, but to say that dogs definitely cannot talk is more unscientific than exploring the possibility that they could.
And if you are a pet owner yourself, you can really easily test if it‘s true or not.
You are so uneducated on this topic… All this essay shows is that you don’t understand what is meant by “language”, and how that differs from communication.
I’m not being unscientific, I’m following the conclusions of scientists…
Insane for you to compare disabled people to animals & try to paint me as ableist.
Animals can communicate, but to our knowledge there are none with a human-level understanding & command of language.
@@SciGuys Little children have been used as a comparison while studying animals for decades. And your problem lies with the assumption that there is such a thing as a human level understanding of language in the first place.
Little children don’t understand language in the way adults typically do. Monolingual people don‘t understand language the way that multilingual people do. Someone who never went to school doesn‘t have the same understanding of language as a linguist does. There is no such thing as a base-level of human intelligence or language skills.
And I also didn‘t say you as a person are ableist, I said your argument is unintentionally ableist because I am well aware that you do not look down on or discriminate disabled people.
Your ignorance on this topic is astounding, you truly have no idea what you're talking about. It's honestly embarrassing. I beg you, read what folk studying the subject have to say, and try not to fall back on tiktok charlatans peddling a product.
@@SciGuys Language is defined as a human method of communication. But why is it defined that way? Because humans came up with it and we are humans studying how we communicate. If you teach a dog a language, it‘s no longer exclusively a human way of communication.
You‘re aware that dogs that are trained in one language, cannot understand humans speaking in other languages right? They need to be re-trained in a second language. How do you explain that if not by the dog understanding language??
@@SciGuys it‘s very impressive that you can read scientific papers and repeat conclusions that scientists have come to. But have you ever tried using your brain to do deductive reasoning? You know, the basis of the scientific method?
“If I teach a dog words and the dog shows that they understand words“, they seem to understand my language. If I switch to another language and try the same words, even as the same person, with the same demeanor and gestures, the dog struggles more to understand me. Therefore, the dog understand one language, but not another.“
Again, it‘s a very basic understanding of language compared to you and me. But it is undeniably an understanding of language.
Now, if the dog repeats the words via buttons, they are clearly showing that they can‘t just understand but also use those words.
Am I saying these videos are never fake? Absolutely not. They are so doubt highly curated to show off the most impressive things the pets do.
But there is no evidence that dogs CAN‘T use language and you just claim they can‘t.
If there are ever scientific studies done on those buttons and how animals use them, we will know more about the complexity of their understanding of language.
But you just claiming that dogs cannot understand human language is just objectively incorrect and unscientific, period.
PLEASE do more takedowns of Steve Bartlett! I saw the "ear seeds" ep of Dragon's Den and I was absolutely appalled. Cheers!
I watched this episode, as someone who NEVER watches Dragons Den when it first aired and was completely distraught when she got loads of investment in something that seemed so stupendous.
Turns out it was stupendous.
Thanks for being the one piece of media in my life I feel like I can trust 🥲