Acupuncture and other traditional Chinese medicine news and discussion thread

This segment is really good - a positive to come out of this I think. Dr Arif seems great - informed, sensible and empathetic. I hope we get to hear more from her!

 

And just to add, my sister is an acupuncturist. I don't know if they were 'ear seeds', but I remember having things stuck to my ears by her in the past. Must have been ear seeds I think. Did nothing.

 

Dr Alastair Miller is Medical Advisor to the Sussex ME/CFS Society - sabotaging ME patients since the 1980s

 

https://twitter.com/user/status/1750602582345634097

 

One of the many Medical Advisors to this local group. It has more medical advisors than any of the national ME groups. I have not done the arithmetic but I suspect as many advisors as all the national groups added together. One wonders how many of the BPS researchers in the past that have cited support of patient groups for their research are referencing this group, that declines to disclose the size of its membership.

 

https://twitter.com/user/status/1750613401980551608

 

Great news. It is truly heartening to have seen the wide spread support for the patient view point and largely accurate reporting in all the main UK newspapers rather than just publications like the Canary which has regularly reported accurately on ME issues.

All though it often feels like with ME in the media it is one step forward two steps [back], this last week has felt like real progress.

[edit - corrected wrong word choice]

 

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

 

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.

 

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.

 

https://twitter.com/user/status/1750797506315681969

 

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?

.

 

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

.

 

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

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

 

BMJ

https://www.bmj.com/content/384/bmj.q204

News
Myalgic encephalomyelitis: Charities complain about Dragons’ Den featuring claims about ear seeds

BMJ 2024; 384 doi: https://doi.org/10.1136/bmj.q204 (Published 26 January 2024)Cite this as: BMJ 2024;384:q204

[Most of it paywalled/sub]