Earseeds, Acuseeds

Fainbrog said:
Curious (and sorry if someone else has asked/commented, too many posts to read through from today), I wonder if 'compliance' will mean they have to contact all those with outstanding orders/recent purchases, to advise that they were falsely advertised and give the option to not proceed with the purchase/get a refund.
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I think that if it were a CMA issue that I’d basically what they would have been required to do IF INFORMATION HAD CHANGED or there had been an honest error- provide evidence they definitely sent out individually and directly ie actually contacted each person who had gone through ‘step 1’ based on old info and provide them with correct info and fair choices what to do next (including refund but eg if it had been booking a course and they missed out on an alternative due to time/deadline there would be questions there etc)

This is obviously on top of getting info corrected asap on websites or ads and so on for those who eg hadn’t yet bought or expressed intention to buy

to be fair this is what most honest brokers would seek to do in a general sense anyway due to their reputation and morals so it just formalises the component parts in a useful way/roadmap

when it wasn’t a change or a genuine accident …… I don’t know what the default or decision would be re: what needs to be done but perhaps more significant than this?
 
bobbler said:
I don’t know what the default or decision would be re: what needs to be done but perhaps more significant than this?
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Usually when the ASA make a judgement that something breaches the code, they expect the broadcaster to stop running the ad. Since this wasn't a conventional ad and is unlikely to go out live again, I guess it'd be limited to BBC iPlayer content?

The ASA wouldn't have the power to make a business contact everyone who has placed orders. Their job is to try and prevent businesses advertising a product in a way that's not legal, decent, honest and truthful, but I doubt they can stop them selling it. And even with adverts, they're dependent on the co-operation of whoever is hosting them.

The CMA is more about the regulation of entire markets, so I'm not sure whether they'd be involved in something like this. The most appropriate body would probably be Trading Standards, but there's no central organisation; it's run by individual local authorities, some of which have probably had to reduce their staffing to a skeleton provision because they haven't the money to pay for it.
 
That last Mail article is pretty good, it bracketed the Acu Seeds pitch with other dodgy health claims products platformed by DD.


'Wellness guru behind a 'mouth taping' breathing product is edited out of latest Dragon's Den episode after BBC faced backlash over entrepreneur's 'snake oil' ear seeds product that she claimed could 'cure' ME'


'The UK-based Good Thinking Society charity, which describes itself as 'encouraging curious minds and promoting rational enquiry', has criticised the show's portrayal of wellness businesses - and written a letter of protest highlighting various brands.

Project director Michael Marshall said: 'Each of these businesses have been allowed to make extravagant claims about the efficacy of their products without facing any real critique or questioning from the show or its producers.

'Not enough is being done by the producers of Dragons' Den to uphold that trust, and to ensure it is not lent to businesses that promote misleading and potentially dangerous products, via health claims that target specific and vulnerable patient groups.

'People with serious conditions may risk their time, money and even turn down proven treatments in favour of these products.'

https://www.dailymail.co.uk/news/ar...-den-mouth-taping-bbc-backlash-ear-seeds.html
 
This Mail article is a bit of a mash up from previous reports:


https://www.dailymail.co.uk/news/ar...unded-claims-ear-seeds-aided-recovery-ME.html

BBC Dragons Den under new pressure as advertising watchdog prepares to bring case over unfounded claims that seeds fix ME
By CHRIS MATTHEWS

PUBLISHED: 00:54, 1 February 2024 | UPDATED: 18:28, 1 February 2024


Dragons Den is mired in more hot water as it emerged the BBC show is facing a probe from the advertising watchdog.

The show was previously hit by nearly 500 Ofcom complaints over entrepreneur Giselle Boxer's 'unfounded' claims that ear seeds aided her recovery from myalgic encephalomyelitis (ME).

Now, the Advertising Standards Authority has said the show had 'likely' broken ad rules, The Mirror reported...

[...]

The Good Thinking Society project director Michael Marshall received an email from the ASA this week that said there was 'likely to be a clear problem under the rules'...

Includes information on ME for which the NHS website is given as the source (my highlighting):

What is myalgic encephalomyelitis (ME)?

Also known as Chronic Fatigue Syndrome (CFS), ME can affect anyone, but is most common in women in their mid 20s to mid 40s.

The most noticeable symptom is extreme tiredness, but others include problems sleeping, joint or muscle pain, headaches, flu-like symptoms, and a fast or irregular heartbeat.

Treatments include cognitive behavioural therapy (CBT), specific exercises, or medication to target nausea, pain or issues with sleeping.

Source: NHS
_______________

This post has been copied and following discussion moved to
NHS England web pages on ME/CFS updated 29th October 2021 (NICE publication date)​
 
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Dx Revision Watch said:
This Mail article is a bit of a mash up from previous reports:


https://www.dailymail.co.uk/news/ar...unded-claims-ear-seeds-aided-recovery-ME.html

BBC Dragons Den under new pressure as advertising watchdog prepares to bring case over unfounded claims that seeds fix ME
By CHRIS MATTHEWS

PUBLISHED: 00:54, 1 February 2024 | UPDATED: 18:28, 1 February 2024


Dragons Den is mired in more hot water as it emerged the BBC show is facing a probe from the advertising watchdog.

The show was previously hit by nearly 500 Ofcom complaints over entrepreneur Giselle Boxer's 'unfounded' claims that ear seeds aided her recovery from myalgic encephalomyelitis (ME).

Now, the Advertising Standards Authority has said the show had 'likely' broken ad rules, The Mirror reported...

[...]

The Good Thinking Society project director Michael Marshall received an email from the ASA this week that said there was 'likely to be a clear problem under the rules'...

Includes information on ME for which the NHS website is given as the source (my highlighting):

What is myalgic encephalomyelitis (ME)?

Also known as Chronic Fatigue Syndrome (CFS), ME can affect anyone, but is most common in women in their mid 20s to mid 40s.

The most noticeable symptom is extreme tiredness, but others include problems sleeping, joint or muscle pain, headaches, flu-like symptoms, and a fast or irregular heartbeat.

Treatments include cognitive behavioural therapy (CBT), specific exercises, or medication to target nausea, pain or issues with sleeping.

Source: NHS​
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Slight sidenote (but not much) - is this BBC trying to 'rehab' the Dragon's Den brand reputation?

Just had this one appear on my fb feed from BBC One:
Video | Facebook

Titled: "This super pitch will go down in HISTORY | Dragons' Den "

And it some people asking for £1 investment for 1% in order to help the nations children access books
 
Andy said:
Pseudoscience exacerbates the burden of disease
Victims of ME deserve better than dopey Dragons and ear seeds

https://thecritic.co.uk/pseudoscience-exacerbates-the-burden-of-disease/
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That's a pretty good article by Charlotte Blease about the Dragons' Den part of the story. I'm concerned that by repeating all the bad ways pwME have been disbelieved and going quite gently on the CBT/GET criticism without explaining about PEM, I think she misses key points, and leaves readers with the option of careless readers believing some of the stuff about malingering etc.
 
https://brightonjournal.co.uk/acu-s...lly-linked-to-me-without-scientific-evidence/

Acu Seeds- what are they and why have they been controversially linked to ME without scientific evidence?

By Nick Staunton

3rd February 2024


...Despite the absence of scientific evidence for ear seeds, the controversy seems to have benefited the brand – the week after the show had aired, Boxer said “I sold more than double my sales for two years in just one night.”

This is unsurprising considering that ME patients are desperate for effective treatment, especially given the historic lack of health system support for the condition.

A serious under-investment in rigorous biomedical research into ME has meant that the illness remains somewhat of a mystery. The absence of proven or effective treatments has created an environment allowing unproven treatment claims to thrive and potentially mislead vulnerable patients.

Addressing this gap in research funding is crucial for promoting scientific integrity and ensuring that treatments are grounded in robust scientific evidence.

The Conversation contacted Acu Seeds for comment but did not receive a response.

Katharine Seton, Immunology Research Scientist, ME/CFS Research, Quadram Institute
 
https://www.skeptic.org.uk/2024/02/...eeds-is-an-insult-to-me-cfs-patients-like-me/


Excellent article in The Sceptic with links to the back story.

"The story of how a handful of influential researchers were able to push psychological treatments for a serious neurological condition for decades – essentially suffocating legitimate biomedical research – is a fascinating indictment of how junk science can masquerade as legit science, but sadly one too intricate and lengthy to be told here."

"Around 25% of ME/cfs sufferers – tens of thousands of people – spend decades trapped in dark rooms, unable to even roll over or eat independently. ME/cfs is not necessarily a terminal illness, but people do die of it – often when they reach a stage of fatigue so extreme their body can no longer digest food properly and they die of starvation, because there’s no standard protocol for tube feeding people with the condition, and doctors are either not comfortable attempting it or are still so convinced that it is a purely psychological condition that they refuse to treat."

"This () is evident in the clever little bait-and-switch performed in the edit that allows the show to leave audiences with the very explicit impression that this product is essentially a cure for a serious, incurable neurological condition, while at the same time never actually saying anything of the sort. Watched with a critical eye, there is very obvious care taken to avoid any explicit medical claims, indicating that at least one person knows the precise thickness of the ice on which they were skating."

"The strongest indication of funny business is the complete lack of curiosity from the ‘Dragons’ (and Gary) about how the product works. The only evidence apparently necessary to induce a titan of industry to drop £50k on a ‘wellness’ brand is a practical demonstration comprising an apparently healthy Deborah Meaden having her shell-like swabbed with an alcohol wipe and a couple of stickers applied – despite this only being proof that the stickers are, in fact, sticky."

"Despite the episode being pulled and re-edited (with the addition of an equivocal on-screen disclaimer to give the patina of responsibility), it clearly achieved the desired effect: a message on her website explains she is sold out, and warns customers of likely shipping delays."
 
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The author, Sorrel Kinton has done and excellent job in quite a short article.

Though I think she's too kind to the woman selling the ear seeds.

I don't think ex fellow sufferers should get a free pass to get away with selling junk to pwME at a huge mark up to profit from sick people less fortunate than themselves without being criticised. I don't care what nonsense the woman chooses to believe about her own health and how she recovered, but I do care that she's cynically exploiting others less fortunate than herself to make huge profits and leverage herself into the exploitative wellness industry where billions are made, not just from the worried well with more money than sense but from vulnerable and desperate sick people.
 
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Trish said:
The author, Sorrel Kinton has done and excellent job in quite a short article.
Though I think she's too kind to the woman selling the ear seeds.

I don't think ex fellow sufferers should get a free pass to get away with selling junk to pwME at a huge mark up to profit from sick people less fortunate than themselves without being criticised. I don't care what nonsense the woman chooses to believe about her own health and how she recovered, but I do care that she's cynically exploiting others less fortunate than herself to make huge profits and leverage herself into the exploitative wellness industry where billions are made, not just from the worried well with more money than sense but from vulnerable and desperate sick people.
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The opening line of:

"When your illness is untreatable and incurable, peddlers of dubious treatments circle like you’re a warm, twitching cow carcass. There are broadly two kinds – those who know they are misleading you, and true believers."

Rings so familiar though.

It's wonderful when someone puts good words to articulate what you've been trying to bring alive
 
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