Ear Seeds claim to be a CURE for ME/CFS!

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@ElinorBrown 5 ай бұрын

The BBC have since re-edited the episode with the disclaimer “Acu Seeds are not intended as a cure for any medical condition and advice should always be sought from a qualified healthcare provider about any health concerns.” This is definitely an improvement, and I am glad the BBC have listened to the criticism but as it was not on the original broadcast, most of the viewers will have watched the original version without this disclaimer, so I’m not sure how much effect the disclaimer will have. Ideally though in the future they will be more aware of this type of issue, and consider more carefully what and how to present products on their platform!

@kaybrown3162 5 ай бұрын

Being constantly bombarded with “cures” by people who know nothing about ME/CFS is not helpful. Glad the BBC have listened and put a disclaimer on the show - but I am surprised it got through in the first place.

@Scorpio.connect 5 ай бұрын

As an outsider with understanding ( I have muscular dystrophy)... I have noticed so many random "cures" for chronic fatigue... seems like because its a difficult diagnosis, people just throw random "cures" at it.

@ElinorBrown 5 ай бұрын

That is definitely how it seems to me! x

@ruby3200 5 ай бұрын

Oh yeah, my chronic illness doctors have flat out told me they can’t do much for my ME/CFS because they haven’t been taught much and there is hardly any research done on the disease.

@tyol2504 5 ай бұрын

@@ElinorBrown such a cute face why don t u blow kisses at the end n beginning of video

@SurvivaloftheFatigued 5 ай бұрын

Well said! I was wondering how to appropriately bring up this topic, but you’ve done such a fabulous job with it that I don’t think I can do any better! ❤️

@jacks2222 5 ай бұрын

Another amazing, informative,unbiased and eloquent video Elinor. Thankyou for making it because now we have a clear,concise reference point to direct those people who suggest this to us🙏🙏

@ElinorBrown 5 ай бұрын

Glad you enjoyed it!

@ruby3200 5 ай бұрын

People definitely don’t understand that we suffer from mental illness on top of our physical illnesses. Getting our hopes up only to tear them down can be very dangerous. Saying something may help you get better and may contribute to your healing, and saying or even implying that it will absolutely cure you is a whole different thing. I do believe healing from ME/CFS is possible, but it’s a very low chance at this point in time. I think believing that there’s a chance that you can get better while trying different things is fine, but it’s important to stay guarded and making sure you don’t get your hopes up. What will work for one person might not work for another. People will tell you coffee or quinoa will heal your ME/CFS even though they know nothing about it. Even though this may have healed her doesn’t mean it’s going to heal you. I’ve heard of people who have found simple fixes, but for the majority it’s complex. The show implies it’s an easy fix for everyone. It drives me crazy and makes me mad, because it belittles our illnesses and acts like it’s no big deal, when in reality good doctors and scientists say it’s a very complex illness and can be very severe (I’m bedridden 95%of the time). Things like this only teach the public that our illness is not hard to treat and we just need to try harder. What bothers me is that things like this are easily promoted but ME/CFS as a whole, education on it, and new research and funding for the research is never promoted and is treated like a joke or that it’s not important.

@Max-ww6uj 5 ай бұрын

I think it's also so upsetting that neo walks never got the funding. What sort of message does it put out to the chronically ill people? "We do not care about an amazing product that does help you, but doesn't cure you"? (I have seen the neo walks episode and I am aware that is not the reason they had but that's how it feels to me)

@Lady95Jane 5 ай бұрын

Let’s be honest NeoWalk are also guilty of price gouging. They are so expensive for what they are.

@milkchocolate875 5 ай бұрын

I have to agree. I love the brand owner, the sticks, and what the brand stands for...but I could never afford one. Yes, they're durable but they're made from cheap materials, are they not? A ton of us disabled people are below the poverty line, statistically.

@larablackburn9649 5 ай бұрын

Anecdotal experience is not scientific evidence. Also she was only housebound for 4 weeks. So I find it really hard to understand her experience.

@aimarshmallow6441 5 ай бұрын

4 months look like a joke for people with CFS/ME for something like 8 or 15 FUCKING YEARS. I know people luckily recovered from long covid, which is similar, so if I think about those symptoms for such a short time to me it seemes it might have been that and not CFS/ME. I also know that many people with long covid never recovered since they got it, it can be very severe or lesser, you can have it for months or for years and i suspect it's likely many people will never recover from it