Earseeds, Acuseeds

This one is much better, an excellent and bold article by the Mirror Deputy online Features Editor Ellie Fry (On twitter @iEllieFry ). Ellie Fry's mother has ME and Ellie describes much ME experience very well. Also talks about bad science, patients harmed by graded exercise, Ellie talks about Sophia Mirza and Merryn Croft, and quotes Carol Monaghan.


Headline
''Dragons' Den scandal has caused untold damage to vulnerable viewers - pulling episode is not enough'


'The BBC has been embroiled in controversy after medical charities and experts condemned Giselle Boxer's pitch on Dragons' Den. This isn't some small cock-up - the irresponsible claims play into a wider culture of misinformation about ME'


Excerpts:

'There is currently no cure, and the path towards finding one has been blocked for years thanks to chronic underfunding and a reluctance to give up bad science that harms patients. This isn't some casual cock-up from the BBC - Giselle's claims have entrenched the very stereotypes that charities, patients and experts have been desperately warning against for years.'


'The battle against psychologization isn't the only fight that the ME community has had to endure. For years doctors clung to the notion that graded exercise would help ease symptoms, and it's caused irrevocable damage. One government-funded 2016 trial reported that all patients needed to do to overcome the disease was "think positively" and exercise. However, an untold number of patients who experienced mild ME symptoms became completely bedridden as a result. One MP, Carol Monaghan, called it "one of the biggest medical scandals of the 21st century". The National Institute for Health and Care Excellence (NICE) finally changed its guidance in 2021 after years of research and working closely with patients, but even they faced backlash from doctors who still insisted exercise should be prescribed.'


'The decision to pull and review the episode is welcome, but it shouldn't stop there. The BBC doubling down when experts challenged Giselle's claims is unacceptable, and shows exactly how far we have to go to unburden the ME community from this cruel culture of misinformation. The broadcaster should use this moment as a springboard for action and invest in responsible, in-depth reporting on the disease. A formal apology and a commitment to educating the public on the serious reality of chronic illness is the very least they could do.'


https://www.mirror.co.uk/tv/tv-news/dragons-den-scandal-caused-untold-31972890

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Lou B Lou said:
Action for ME's Medical Advisor Dr Strain in the latest Mail article:

'Professor Strain says that, if caught very early, ME patients have a better chance of recovery from making simple lifestyle changes such as improving diet and exercise.'

https://www.dailymail.co.uk/health/...ake-oil-ear-seeds-Kate-Moss-Cherie-Blair.html



What is he doing for goodness sake! If Dr Strain was misquoted then Action for ME must insist the Mail changes the text. If that quote is for real then what are AFME doing with a medical advisor who contradicts NICE and recommends diet and *exercise* with No evidence?

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Not the first time he’s said stuff that doesn’t stack up. I’d hazard a guess he’s not been misquoted, sadly..
 
oh, I'd thought Dr Strain was one of the more enlightened Drs, i thought AfME had tossed all that GET rubbish out.
TBH exercising at the early stages is what many credit with their becoming chronically ill, so the whole 'if caught early' stuff is a serious concern. Where's your evidence Dr Strain?

That sounds suspiciously like a 'catch them early before the aberrant beliefs & deconditioning become entrenched'.
When will it ever end :banghead:

PErsonally when i didnt recover well after the initial virus i started a new gym programme (increasing gradually) improved my diet, redid my positive affirmations (puke) & did exactly what they now advise. Then i collapsed, ended up in hospital & never recovered. If i'd rested instead of thinking i just needed to get fitter eat more greens & do even MORE positive thinking, perhaps i would still be severe 22yrs later.

Pls stop trotting out this harmful nonsense
 
Lou B Lou said:
Action for ME's Medical Advisor Dr Strain in the latest Mail article:

'Professor Strain says that, if caught very early, ME patients have a better chance of recovery from making simple lifestyle changes such as improving diet and exercise.'

https://www.dailymail.co.uk/health/...ake-oil-ear-seeds-Kate-Moss-Cherie-Blair.html



What is he doing for goodness sake! If Dr Strain was misquoted then Action for ME must insist the Mail changes the text. If that quote is for real then what are AFME doing with a medical advisor who contradicts NICE and recommends diet and *exercise* with No evidence?

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I've started a thread to discuss concern about Dr Strain's opinions.
https://www.s4me.info/threads/can-w...cal-advisor-to-action-for-me-in-the-uk.37027/
 
EDITED AS I'D MULCHED TWO COMMENTS TOGETHER BY ACCIDENT:


Lou B Lou said:
Latest from the BBC - 8.30 ish pm 25th January 2024

The BBC *still* defending the Dragons Den Acu seeds program, and calling ME charities, ME sufferers, ME advocates and ME Doctors "Campaigners". It's a disgraceful, inexcusable, lily livered article.



'Dragons' Den: BBC defends show after ME criticism of Acu Seeds'

https://www.bbc.co.uk/news/entertainment-arts-68097756
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"the show included "unfounded" claims"

:laugh::laugh::laugh::laugh: talk about disingenuous.

What is "unfounded" about the claims that had no foundation? at all
 
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At least two NHS Trusts are offering ear seeds for chronic pain (as part of the patient's management programme) and sleep disturbance, despite the paucity of published studies on efficacy:


Kent Community Health NHS Foundation Trust:

https://www.kentcht.nhs.uk/wp-content/uploads/2016/09/Acupuncture-Auriculotherapy-00460-LIB.pdf

"...Earseeds are sometimes used by our Chronic Pain Service to prolong the effects of standard acupuncture treatments and may help some patients to self manage their chronic pain.

"How can I get the most out my treatment with earseeds?

It is recommended that the earseeds are massaged two to three times a day or when symptoms occur by applying gentle pressure to the earseeds and massaging in small circles.

Will using earseeds cure my chronic pain?

As with any treatment, earseeds are not a cure but they can reduce pain levels for some patients as part of their chronic pain management programme..."



The Christie NHS Foundation Trust:

https://www.christie.nhs.uk/media/usybshpk/1456-sleeping-with-ease-comp-may-2021.pdf

"...Acupressure consists of physically touching, and applying gentle stimulation/pressure to an acupressure point. Although acupressure can be implemented by a health professional, you can also stimulate it on your own, with or without using an acu-seed.

Acu-seeds have a small 2mm Vaccaria plant seed that is attached to a tape/plaster.

Below is a step by step guide how to do self-acupressure..."
 
rvallee said:
You gotta love when they add this meaningless but on a... (OK imagine the rest is in all caps)... tv show that is literally about endorsing products by investing in them!

I mean for sure they don't endorse the product if they all decline, but this episode made the headline by all the investors on the show... endorsing the product. Which is the literal and entire concept of the show.

Words and their meaning, it's all so complicated.

And yeah they are definitely remorselessly standing by it, with some lazily-copied bits from misleading NHS sites, and the usual lies about "managing symptoms". Ah well. They chose to suck, then when given the opportunity to do better, they decided to suck again.
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I'm bored of the fact the people in the country with the least energy are having to have their time wasted by one of the most pathetic things I've seen of recent times. When the real predators like MIller are out and about to really push advice and misinformation that will foreseeably harm more people with what they've caused harm they've had reported to them before - and that does matter. So is this deliberate distraction - that as long as it is for ME then we also don't deserve acknowledgement of basic respect that you can't make false claims on your programme and when you do then as with anything else you have to make good on it and admit what you've done?

The rest of my post is from a non-ME, business perspective as to what I'd see when I saw this snivelling:

Whoever is running this deserves no respect, including from themselves - if you can't be responsible, answerable and accountable for what you produce and be objective in self-assessment of errors. You wouldn't even get away with this on any other channel and the BBC has bigger obligations for good reason. If they 'don't understand the issue' they shouldn't 'be in the job'.

There is a big difference between a crappy product with accurate information about it that people who fancy wasting their money on a e.g. chocolate teapot can choose to do so on the basis of knowing it won't hold much tea because it is made of chocolate.

If said show is allowing the founder to claim the teapot doesn't melt when it does [EDIT: even if that is merely by virtue of some magical personal anecdote that pretends to skirt that claim whilst strongly inferring it], and nowhere is it questioned through 6months of due diligence and a TV programme where supposedly a business process would operate as normal (and therefore check such claims) then it has allowed someone to tell a lie on tv ie 'false claims'. And all that machinery the BBC claims surrounds the programme has enabled that by pretending 'due process' has picked up on nothing, when said process either didn't exist or failed.

Hence their poor response is even worse than their (not one-off given the 6months to do checks) initial programme in the first place.

Endorsing is sidestepping the issue they've been written to with, even though they basically did anyway. But it is is rude to not reply directly to someone's complaint, but answer something you'd prefer instead.

All that used to be 'covered' by the Dragons - who now seem to have been choreographed by someone else not to. So you can't use that same caveat. It doesn't show what normal investors would do at all. SO it needs to clearly look at a whole new introduction and description of the programme to say 'it's fake' basically as it no longer even mimics a serious process.

In its previous incarnation - where the Dragons would normally ask for evidence of any claims - they could maybe hide behind that caveat but now they've done whatever they've decided to do where noone asks questions a normal business person would have, and then they put large sums of their money supposedly behind it and whilst the show claims it has 'due diligence' it doesn't check claims during said due diligence well... it needs to update on or the other of what they are doing. Either make a statement that the show no longer does any diligence and the business people no longer act like business people would or actually do those things.

PS if it is the former then it needs to question whether it has become an advertising show, because it no longer is showing the 'investing or business process' it claims. Just the claims made by the unchecked spiel they allowed however many minutes for it to be shown - what else is that other than advertising where they allow people x minutes to pitch unchecked to the viewing audience? Are there different regulations for that for a reason? CHoreographing 5 dragons to give said spieler a metaphorical round of applause at the end of the speech isn't the same as being a business show now is it?
 
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anniekim said:
Agree latest BBC article is poor. Description of ME pathetic. NHS website on ME still bad.

“ME is a long-term condition with a wide range of symptoms including extreme tiredness, sleep issues and concentration problems, according to the NHS website.”
https://www.bbc.co.uk/news/entertainment-arts-68097756

Feels like the BPS lot may have got their contacts to write new media articles undermining ME.
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THat NHS website description constitutes bullying and propaganda for an agenda when you put it into the context of it knowing full well it provides an opportunity to spread misinformation and will cause harm and maltreatment of individuals by all those around them - it isn't like the writers are unaware they've just chosen to do it to each and every person and know that by Maslow's hierarchy of needs they are frustrating access to nearly everyone with ME and much more devastating symptoms and needs (and whispering behind their back 'they aren't that bad') by what it is doing.

I find the choices of those in charge of it to deliberately leave up such information in order to cause this for so many years after being constantly warned about foreseeable harm they are causing unforgivable and immoral.

If they wrote the same for a cancer website in an attempt to persuade people who somehow 'didn't know it was anything else' what would society be saying about those individuals? And it would be without doubt it was for the agenda of ensuring people with cancer were viewed differently by others than if the info were accurate and treated as instructed which would cause harm. So where is 'the debate' about what they've chosen to do here?
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Discussion of the NHS webpages on ME/CFS has been moved here.
 
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Lou B Lou said:
an excellent and bold article by the Mirror Deputy online Features Editor Ellie Fry
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That article is fantastic. Here's one reader comment (rosiecox1)

I feel as though I've entered an alternate reality. I can't find any inaccuracies in this account. Which must be a 'first' for mainstream media when it talks about ME.

It's useful to hear mention of names of those who have died, names which every ME patient will be familiar with, but, other than by their close family and friends, those deaths have passed by unremarked. And yet they are a very real stain on the scandal that surrounds this hideous disease. A scandal fomented by Beard and McEvedy in the UK in 1970, a cudgel taken up with alacrity by the Wessely School aided and abetted by the CDC ( and other Government orgs) in the US.

Please Mirror: reflect this scandal. See us patients for who we are and what we've been through, and what hells we're still going through. Powerful people have 'got their rocks off' hurting us deliberately. Making up fake evidence bases. This is a longer, bigger, even more heinous scandal than 'Mr Bates and the Post Office'. It's obvious this journalist is writing from a position of really understanding the history and politics of this disease. Now is the time to to break open this horror-show.. part those curtains, see the Wessely's and the Fauci's of this world for who they really are. What they're really capable of. And thank you!
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Adam pwme said:
https://twitter.com/user/status/1750957284899844454
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"what? it cures an illness that medical science doesnt know where it comes from and cant effectively test for it. I'm not getting in the middle of whether its..... long pause.... you know, the illness itself but, back in my day...."

Oooo nicely side stepped Steve.... i'm betting you were going to say - 'not getting in the middle of whether its... real' Or something akin to that! The long pause gave you away.

But nevertheless the snake oil salesman comment is helpful thank you
 
The Times hard copy today, page 19
"Dragons' Den accused of failing to scrutinise pitches"

Proscience group " Good Thinking Society" believe that stars of the show are failing to protect vulnerable people and have written to Tim Davie. Complaints about spiritual healer Liam Browne as well as Giselle Boxer.
Is this going to affect interest in ME?



Online which has much more information. Sorry haven't read it all but I have concern whether the focus will stay on ME.
https://www.thetimes.co.uk/article/...or-claim-that-ear-seeds-can-cure-me-x27f3wqht

edit: also Psychic Sisters- none were scrutinised by BBC.
edit2: a phrase omitted
 
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