Earseeds, Acuseeds

Now articles in the Daily Mail and Sun about this. Not sure who's driving the media coverage on this but seems to have been a pretty darned effective media strategy and all groups seem to be working together. More of this please.
 
Fainbrog said:
Now articles in the Daily Mail and Sun about this. Not sure who's driving the media coverage on this but seems to have been a pretty darned effective media strategy and all groups seem to be working together. More of this please.
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Yes. The Mail article is long, Headline:

'Dragons' Den entrepreneur who was the first to get 6 offers for device that 'cured' her ME is reported to advertising standards for 'selling snake oil' as doctors slam BBC show for 'misleading desperate patients'


And the article includes numerous effective quotes from social media by patients and other critics, and the critical video by the guy on Tik Tok, Oliver Benson (apparently he had 2 million hits on his Tik Tok videos which are highly critical of the whole ear seeds/DD fiasco)
 
Lou B Lou said:
Yes. The Mail article is long, Headline:

'Dragons' Den entrepreneur who was the first to get 6 offers for device that 'cured' her ME is reported to advertising standards for 'selling snake oil' as doctors slam BBC show for 'misleading desperate patients'


And the article includes numerous effective quotes from social media by patients and other critics, and the critical video by the guy on Tik Tok, Oliver Benson (apparently he had 2 million hits on his Tik Tok videos which are highly critical of the whole ear seeds/DD fiasco)
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I felt dirty visiting the DM website, but it feels worth it given how reasonable the piece was. Now off to clear my browser history..
 
Also The Times and Metro getting in on it.

Feels like something of a seminal moment in coverage of ME (in my relatively short time as a pwME at least) where those who have our backs have control of the narrative for once.
 
The other articles that reported on the ME charity letters to the ASA etc.


The Mail (on the 23/1/2024)

'Dragons' Den entrepreneur who was the first to get 6 offers for device that 'cured' her ME is reported to advertising standards for 'selling snake oil' as doctors slam BBC show for 'misleading desperate patients'

https://www.dailymail.co.uk/femail/...BHECpHSzbtc5qD62Lt6JIkVrWUmrN7QVuKD3jfismUnis



The Sun

HEALTH ROW
Dragons’ Den viewers slam ‘terrible and exploitative’ pitch after ‘self-cured’ ME sufferer secures huge investment

https://www.thesun.co.uk/tv/25456027/dragons-den-viewers-slam-pitch-me-sufferer-investment/



Metro
Dragons’ Den star reported for ‘misleading patients’ by flogging ‘snake oil’

https://metro.co.uk/2024/01/23/drag...NbSeUv74WUED7YcxauQCxlU2yjvrXTZ_7Cb9rdKlSvbaM



And .....

The Mirror

'EXCLUSIVE:
BBC invited Dragons' Den star on to showcase 'ear seeds' she claimed 'cured' her ME pains'

'Giselle claims BBC researchers approached her to take part in the show which has since been bombarded with complaints from viewers and charities, who say there is no evidence behind contestant's claims'

https://www.mirror.co.uk/tv/tv-news/bbc-invited-dragons-den-star-31951616


** The Mirror has been asked to correct it's headline from 'ME pains' to 'ME'. Giselle actually said she recovered from ME - not just ME pains.




A 2nd Mail article, this one on the 24/1/2024

Headline:

'BBC in Dragons' Den 'fakery' storm: Entrepreneur accused of 'selling snake oil' claims producers recruited her to take part - as it emerges Steven Bartlett's brother is director of her firm'

https://www.dailymail.co.uk/news/ar...fake-entrepreneur-accused-recruited-show.html




The Guardian 24/1/2024

'Doctors complain to BBC over Dragons’ Den contestant’s claim ‘to have cured ME’

'Entrepreneurs on TV show’s panel all offered to invest in business selling ear seeds as part of treatment for chronic illness'

https://www.theguardian.com/society...ragons-den-contestants-claim-to-have-cured-me


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Adam pwme said:
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It's the usual 'BPS/old guard who don't want to change their cushy-for-them approach's list of fallacies/tactics

I do worry that this is 'bigger than this' and the complaint has been 'factored in' and planned for, leading to more opportunity for certain angles of the condition to be put across and publicity keeping going for weeks instead of a one-off

My gut is that we are stuck-in-a-loop where we have other pwme focusing on 'how long were you ill for' type stuff, because the very nature of the condition that BPS has pushed the button on with the public and led to many having far more disability than necessary is the 'hidden toll' combined with the fact that we either don't want to miss out of massive life events (that one wedding or pushing our bodies so we can get a qualification or maintain a job whilst toileting everything else in our lives as well as our health to do so) or aren't allowed to.

The illness is the agonising part that others don't see and refuse to hear of when pwme do try and make it visible and known.

So pwme doubting each other makes their point for them (a mystery, easy to fake/confuse/how can we tell fatigue from 'something else) unless done very nuancedly and carefully. And they know noone reads the detail on these threads


I think the scam needed to be noted, but asking for the emphasis to move to accurately describing the condition and accurately noting the significant changes in lifestyle that have been required ie significant rest and then still functional debility and limitations have been the primary thing. If accurate information on what someone personally tried is there and not using the fallacial caveats then we have informed consent from those who are ill with ME.

We've now got trapped in/walked into the same cycle that suits the BPS to turn us 'at each other' and make us look like patients arguing 'well your ME can't have been that bad' bla. And that, I think, is when they know that too many observing switch to the misogynistic cliche of 'women arguing' and switch off. The fact this woman is trying to do this narrative, DARVO stuff, which is remarkably similar to the BPS-individuals' pretend-summaries of history etc is worrying. SHe also in these starts to infer GET-y type things. But who knows when it is a pwme because we have no options allowed but to say 'that worked' otherwise we are disowned and so have to kid ourselves until the relapse hits 6months in.


I think that the ME Assocation and others have done brilliantly so far with this, and desperately hope that there will be opportunity for this to get turned back to being an opportunity to highlight the much bigger underlying issue that this is and is indicating, and keep focus mainly on that. Otherwise this will play into BPS hands

e.g. the issue of the misinformation about/minimising of the condition and the fact that nonsense CBT as mostly offered doesn't help with symptoms but I suspect causes real harm both physically and psychologically by still being an opportunity for those deluded into the 'false beliefs paradigm' to keep pushing it 'because we pretended to tweak and don't fancy having to be supportive'. Even after all the years of people being ground down just trying to get official change they won't follow it and won't update their information.

And that is what is allowing this, because all those baddies (who claim they are 'experts' and pretend they are really hurt and its unkind to call them baddies even after they have chosen, a la the postoffice stuff theme to callously disregard the opportunity and refuse to look at the feedback about the consequences of what they prefer to offer vs what they should) even if they wanted to say something can't, or will do so on their own terms whilst pushing their own misinformation because the old-guideline-still-in-charge'rs are the originals in all of this. They developed the initial con, playbook and script

I just hope that we can keep this on-track but I'm feeling puppet-strings going on here..
 
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bobbler said:
It's the usual 'BPS/old guard who don't want to change their cushy-for-them approach list of fallacies'

I do worry that this is 'bigger than this' and the complaint has been 'factored in' and planned for, leading to more opportunity for certain angles of the condition to be put across and publicity keeping going for weeks instead of a one-off

My gut is that we are stuck-in-a-loop where we have other pwme focusing on 'how long were you ill for' type stuff, because the very nature of the condition that BPS has pushed the button on with the public and led to many having far more disability than necessary is the 'hidden toll' combined with the fact that we either don't want to miss out of massive life events (that one wedding or pushing our bodies so we can get a qualification or maintain a job whilst toileting everything else in our lives as well as our health to do so) or aren't allowed to.

The illness is the agonising part that others don't see and refuse to hear of when pwme do try and make it visible and known.

I think the scam needed to be noted, but asking for the emphasis to move to accurately describing the condition and accurately noting the significant changes in lifestyle that have been required ie significant rest and then still functional debility and limitations have been the primary thing. If accurate information on what someone personally tried is there and not using the fallacial caveats then we have informed consent from those who are ill with ME.

We've now got trapped in/walked into the same cycle that suits the BPS to turn us 'at each other' and make us look like patients arguing 'well your ME can't have been that bad' bla. And that, I think, is when they know that too many observing switch to the misogynistic cliche of 'women arguing' and switch off. The fact this woman is trying to do this narrative, DARVO stuff, which is remarkably similar to the BPS-individuals' pretend-summaries of history etc is worrying. SHe also in these starts to infer GET-y type things. But who knows when it is a pwme because we have no options allowed but to say 'that worked' otherwise we are disowned and so have to kid ourselves until the relapse hits 6months in.

I think that the ME Assocation and others have done brilliantly so far with this, and desperately hope that there will be opportunity for this to get turned back to being an opportunity to highlight the much bigger underlying issue that this is and is indicating, and keep focus mainly on that. Otherwise this will play into BPS hands

e.g. the issue of the misinformation about/minimising of the condition and the fact that nonsense CBT as mostly offered doesn't help with symptoms but I suspect causes real harm both physically and psychologically by still being an opportunity for those deluded into the 'false beliefs paradigm' to keep pushing it 'because we pretended to tweak and don't fancy having to be supportive'. Even after all the years of people being ground down just trying to get official change they won't follow it and won't update their information.

And that is what is allowing this, because all those baddies (who claim they are 'experts' and pretend they are really hurt and its unkind to call them baddies even after they have chosen, a la the postoffice stuff theme to callously disregard the opportunity and refuse to look at the feedback about the consequences of what they prefer to offer vs what they should) even if they wanted to say something can't, or will do so on their own terms whilst pushing their own misinformation because the old-guideline-still-in-charge'rs are the originals in all of this. They developed the initial con, playbook and script

I just hope that we can keep this on-track but I'm feeling puppet-strings going on here..
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And by the way I can't help but think of the cringe of someone behind the trojan horse using this as another opportunity to sell the old harmful NHS offering through using is as a comparator to this.

The classic straw man.

Using this as a way/fake alternative, to make 'look more official' and 'look like the valid and appropriate alternative' the not updated, based on old guidelines more harmful GET + cfsCBT that brainwashes pwme into thinking they are the ones with false beliefs and to feel guilty if they don't over-exert.


A chance to pretend that instead of the NHS info being a deliberate and stubborn one-in-the-eye and still deliberately misinforming and minimising 2 years on, with outrageously pwme having to battle for treatment to follow scientific guidelines, it is valid or 'the truthful source' and 'offers useful help'. Therapies for which some of these articles are using the line 'helps with/treatment for symptoms' (which gets right up my nose, because it's inaccurate and the guideline explicitly stated it isn't a treatment )

Plus of course noone would be desperate for any of these ear things or other stuff, if the other offerings actually weren't worse and the peer pressure deliberately created by the BPS:

- The 'official staff' from some clinics are potentially the same ones quoted in research or articles as saying 'the bas***** don't want to get better' when the treatment harmed and suggesting lines in articles such as 'if they are still ill and won't try everything they don't want to get better'. And those lines from them are being marketed directly at supporters to create the coercion.


I'd urge the charities to think about the next opportunity being to publicly note the far bigger issue is this:

ie NHS/BPS situation

That these problems occur regularly because of the very very poor official situation we've been left with due to having allowed the absolute wrong paradigm to be in charge, who focused on stigma-creation in order to blag their own wares and hide the harm it did.

And still do in order to keep themselves in their cushy position and make pwme voices seem like 'unreliable testimony' when reporting harm.

BPS 'claims' in old guidelines are no more methodologically sound than these ear pips. Yet many staff won't update themselves.

And to note they were/are 'the originals' who are pushing for 'less robust' regulation and science requirements and peer review on an already unlicensed area.

And that the 'therapy-based' and particularly the entire field of 'pscyhosomatics' are no more robust in methods or peer-review (that they like to quote) based on a hierarchy that has been captured than someone standing up and copying their 'communication techniques' (which they pretend is their 'science', 'evidence' and 'treatments').

And beyond making sure that there is information noting that it wasn't these seeds that caused any cure I'd drop any fight focusing on the lady herself as if they haven't bulletproofed her story then they've done that for a strategic reason. I'd just sidestep it and if necessary say something like 'they feel for Giselle being left, after having a debilitating condition that meant she had to give up a lot of life and activity and opportunities in order to recover enough and stay recovered (nature of ME) feeling, as we all do, that there is an issue with society where things like this are the only opportunities left open to them - having to do the dib-dib-dob-dob swear pretending they believe that is what their condition was and 'work on motivating others with ME, otherwise some other healthies will step in and do it as their job anyway'

But I think we need to remember 'what is our aim' and think of the big picture and how getting people to swap ear seeds for GET is no better as an end result much of this press might lead it to as a compromise. be wary about this not having been planned twenty-five steps ahead etc.
 
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rvallee said:
Just like with the biopsychosocial approach. It's not necessarily the CBT, or the GET, it just, as Wessely put it, "might be of help to some". It could be changing your mindset, eating well (even if you already did, I guess you just have to eat even better), having good sleep hygiene (even if you already did, you just gotta keep optimizing it, I guess), socializing more, getting back to work, painting stuff with your fingers (uh, that's a weird one but OK), not thinking about your symptoms, thinking about your symptoms in a different way, or a combination of things.

Their best evidence shows that at best 1 in 7 has some form of benefit that can't be measured and makes no difference in outcome. So it's clearly not just the CBT/GET, it's many things, you just gotta try and return back to the normal life you had before, a life that they claim we don't want to go back, even though we desperately want to and say so all the time. Out of that they assert that it can work 100%, just because.

What's interesting about this nonsense is that it shows how we don't actually care about what's in the BS we are being sold. For decades there have been those claims of us being anti-psychology or anti-psychiatry, of being unable to accept that we have a mental illness, which makes us hostile to their evidence-based, uh, stuff. But here we have the exact same reaction to something that has nothing whatsoever to do with them. It's acupressure, Chinese herbs and, uh, the Moon? OK that's also very weird.

If only it mattered. If the biopsychosocial ideologues had any integrity, they couldn't fail to notice it. But instead they have no issue with being equivalent to sticking beads on your ears while you drink herbs and think at the Moon. And we have the exact same reaction to either. It could be astrological mind-reading or even techy gadget stuff like shakra-aligning super MRIs, or whatever. We don't care. BS is BS, no matter what fed the cow. But the BPS ideologues don't care either, and facts and evidence barely matter in evidence-based medicine, so it likely won't make a difference, but wow does it add to the mass of shameful negligence and incompetence that will one day look about just as bad as medicine's stubborn refusal to acknowledge the germ theory of disease.
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This is my worry - that the coverage from our end isn't going to get to circle back to this, and that this is being used as a straw man to make the 'original and more harmful nonsense' look like the official stuff is 'the real deal'.

This is beginning to feel the potential for it to lurk to trojan horse if we don't focus on the bigger concepts of 'informed consent' by her providing the full run-down of how she improved (rest and then reducing her exertion to keep it there) and not mis-selling then I think we need to watch out for the 'can't have been that ill' or 'it was GET that did it really' cilche some want us to walk into.

And the next concept they need to circle this to is 'the original issue' that led to this desperation: this NHS 'there are treatments that help' is currently a lie re: what most offer. And harmful gaslighting whilst misinformation is spread to those supporting patients is I think even more of an immoral issue. So the misinformation about the extent debilitation at the different levels of the condition (and the iceberg of people not seeing that aftermath) needs to be focused on in articles.

I get twitchy that in the coming days we've a fork in the road on whether this one is a case of us all being walked through the same pre-calculated playbook to someone else's end or can keep our eye on the bigger picture.
 
Fainbrog said:
Also The Times and Metro getting in on it.

Feels like something of a seminal moment in coverage of ME (in my relatively short time as a pwME at least) where those who have our backs have control of the narrative for once.
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I'm not confident that the Metro story isn't more about her narrative and reaction to what they title as 'one doctor's complaint' (when there have been letters from many official organisations and individuals)

I think we all need to be wary of the potential for this to be twisted - a la BPS - and used as publicity the other way around with her claiming victimhood

particularly now everyone is noting she is rewriting her site I'd urge people to save the originals.
 
Lou B Lou said:
The other articles that reported on the ME charity letters to the ASA etc.


The Mail

'Dragons' Den entrepreneur who was the first to get 6 offers for device that 'cured' her ME is reported to advertising standards for 'selling snake oil' as doctors slam BBC show for 'misleading desperate patients'

https://www.dailymail.co.uk/femail/...BHECpHSzbtc5qD62Lt6JIkVrWUmrN7QVuKD3jfismUnis



The Sun

HEALTH ROW
Dragons’ Den viewers slam ‘terrible and exploitative’ pitch after ‘self-cured’ ME sufferer secures huge investment

https://www.thesun.co.uk/tv/25456027/dragons-den-viewers-slam-pitch-me-sufferer-investment/



Metro
Record-breaking Dragons’ Den star reported by doctor for misleading patients

https://metro.co.uk/2024/01/23/drag...NbSeUv74WUED7YcxauQCxlU2yjvrXTZ_7Cb9rdKlSvbaM



And .....

The Mirror

'EXCLUSIVE:
BBC invited Dragons' Den star on to showcase 'ear seeds' she claimed 'cured' her ME pains'

'Giselle claims BBC researchers approached her to take part in the show which has since been bombarded with complaints from viewers and charities, who say there is no evidence behind contestant's claims'

https://www.mirror.co.uk/tv/tv-news/bbc-invited-dragons-den-star-31951616



** The Mirror has been asked to correct it's headline from 'ME pains' to 'ME'. Giselle actually said she recovered from ME - not just ME pains.

.
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This last line in your post is interesting:
Lou B Lou said:
** The Mirror has been asked to correct it's headline from 'ME pains' to 'ME'. Giselle actually said she recovered from ME - not just ME pains.
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JohnTheJack said:
Yes, Times article online now.



https://www.thetimes.co.uk/article/...or-claim-that-ear-seeds-can-cure-me-x27f3wqht
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This one is very good. As I've come to generally expect of the Times in recent years.

Interesting to note that the ministers for culture and media currently (mentioned in the article) are Caroline Dinenage and Steve Brine - was it the exact same pair who were the ministers replying when the Parliamentary Debate for ME took place in 2018?

- the one where Carol Monaghan used the term 'biggest medical scandal of the 21st century' or something similar for the first time

I know it was Caroline Dinenage because I remember her reading through what seemed a prepared statement from the way it was read, and think it was Brine too which is interesting that the pairing remains if so when in a different dept?
 
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bobbler said:
This one is very good. As I've come to generally expect of the Times in recent years.

Interesting to note that the ministers for culture and media currently (mentioned in the article) are Caroline Dinenage and Steve Brine - was it the exact same pair who were the ministers replying when the Parliamentary Debate for ME took place in 2018?

- the one where Carol Monaghan used the term 'biggest medical scandal of the 21st century' or something similar for the first time

I know it was Caroline Dinenage because I remember her reading through what seemed a prepared statement from the way it was read, and think it was Brine too which is interesting that the pairing remains if so when in a different dept?
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Yes it was Steve Brine I remember he asked Ricky Gervais to apologise. Like the government has no role to play.
https://meassociation.org.uk/2018/0...ufferers-lazy-in-offensive-joke-23-june-2018/
 
Today's Times article (hard copy) is posted very prominently on page 5, taking up most of the page, headline

"Dragons' Den is accused of backing ' quack cure' for ME"

There is a small item directing to it on front page.
If you read the Times at all, it would be impossible to miss this.

Good quote from Charles Shepherd....." the programme had caused upset and anger in the ME patient community.
People who have ME are often on very low incomes and in the absence of any effective, medical treatment are very vulnerable to these sorts of unsubstantiated therapeutic claims."

BBC said show featured products but was not an endorsement.
 
Binkie4 said:
Today's Times article (hard copy) is posted very prominently on page 5, taking up most of the page, headline

"Dragons' Den is accused of backing ' quack cure' for ME"

There is a small item directing to it on front page.
If you read the Times at all, it would be impossible to miss this.

Good quote from Charles Shepherd....." the programme had caused upset and anger in the ME patient community.
People who have ME are often on very low incomes and in the absence of any effective, medical treatment are very vulnerable to these sorts of unsubstantiated therapeutic claims."

BBC said show featured products but was not an endorsement.
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Is the Times article the same as the online article from yesterday? The headline is different ('quack cure'). Have there been any changes to the text?
 
A 2nd article in The Mail today.

Headline:

'BBC in Dragons' Den 'fakery' storm: Entrepreneur accused of 'selling snake oil' claims producers recruited her to take part - as it emerges Steven Bartlett's brother is director of her firm'

Excerpt

'But Giselle has now responded to the criticism, saying she was recruited by a researcher to appear on the show and went through various stages of due diligence looking into her business before she went on.

It has also emerged that despite agreeing to an offer of £50,000 for a 12.5 per cent of her business from Steven Bartlett, 31, he is not listed as a director in the company on Companies House.

Instead his brother Jason Bartlett appears under the role, while the listing also shows that the company changed its name from Acu Seeds to East Healing Ltd. Jason is also known to be an investor in businesses and has teamed up with Steven before for projects.

Dr Charles Shepherd, honorary medical adviser at the ME Association told MailOnline: 'Like most viewers of this programme, I was always under the impression that people applied to be on it - rather than being recruited. This does seem rather odd and should be made clear to the viewing public.'

https://www.dailymail.co.uk/news/ar...fake-entrepreneur-accused-recruited-show.html



.................................


Lou B Lou:
Steve Bartlett is the Dragon who did invest in the Acu Seeds Company (which is now called East Healing). Steven and his brother Jason are both directors of Steven's own company. Jason Bartlett became a director of Giselles company East Healing on the 19/1/2024, the day after the BBC Dragons Den program (which ws the 18/1/2024.

This article quotes Charles Shepherd and Edzard Ernst well. But the MEA must give better lists of ME symptoms or the journalists will repeat the NHS page trivializing descriptions of ME and calling it "Tiredness".

.
 
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I see the company director thing and name change as non-issues, he can’t be that involved in all his businesses and will have a trusted person added to those that he invests in. And the name change could well be from due diligence of similarly named companies elsewhere- like the one in the US that has come out to distance itself from this.

This line of attack feels a bit weak imho and moves away from the issue that was originally reported and easily countered by many an investor, I would suggest.
 
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