How do we stop charities and influencers spreading bio-babble about ME/CFS?'

[ME/CFS Science Blog]

Another increasing issue is AI-created summaries on social media. Researchers often oversell their findings in the paper, and it seems that AI then inflates this even further.

Don't have an issue with using AI per se (it can be useful in many situations), but the LLMs people use don't think, and focus on text and results more than on the data and methodology. So it creates summaries that sound very impressive and impactful without properly scrutinizing the study, making it much easier to spread misinformation.

 

[Medfeb]

To be honest I had never heard of the Mancini study and I don't regard these as significant research progress. I agree that they have the potential to pollute the evidence base but I think most of us have already forgotten about them if we ever knew about them. Yes, Fukuda is unhelpful if used as criteria for ME/CFS (which it isn't) but the issue of what criteria researchers approved of was raised in relation to ICC, which as far as I know nobody much has used if anyone.

Fukuda or some variant of it is still being used by some as referenced above
ICC is also being used by some but I'd have to dig for examples.

 

[Jonathan Edwards]

ICC is also being used by some but I'd have to dig for examples.

Indeed, we would have to dig!
And if you have to dig for things in ME/CFS research you are likely to be digging amongst stuff if no scientific interest.

 

[DigitalDrifter]

Treating Chronic Fatigue Syndrome: The Naturopathic Approach With Dr. Sarah Myhill

Myhill is just another quack.

She is claiming that you can reverse Dementia with diet and supplements.

 

[DigitalDrifter]

They may think someone who says they have CFS may just have been misinformed by a dopy NHS doctor. They think someone who thinks they have ME is more likely to be a disciple of a potty one.

Don't the GMC have rules about lying to patients?

 

[Evergreen]

The Guardian has published a series of detailed articles on their investigation into a pair of unqualified influencers who set themselves up as birth experts with tragic results. It is reminiscent of what we're talking about here.

Influencers made millions pushing ‘wild’ births – now the Free Birth Society is linked to baby deaths around the world

A year-long investigation reveals how mothers lost children after being radicalised by uplifting podcast tales of births without midwives or doctors

www.theguardian.com

 

[DMissa]

We'll never stop biobabble with words. It's like trying to stop the tides. I have driven myself grey and to sleeplessness and stomach pain trying to do so. Memes are too strong. Even as a mitochondrial expert, probably the longest in the tooth for continuous wet lab activity in ME/CFS research in the world, people will publicly disagree with me when I say I am not convinced there is a respiratory defect at play or that medications targeting mitochondria have no apparent basis. I may be the only person on the forum or at some of these conferences who can actually interpret the assay figures correctly and in very fine detail (to the level of individual well or run quality control), having spent tens of thousands of hours doing this in multiple tissues, but online and in short-form bursts of text, that means little.

We'll curtail most of the bulldust with meaningful research outcomes that lead to clearly effective clinical interventions. There will always be some crap left floating around (and opportunistic grifters will never disappear) but if flat earthers and the like still exist this is to be expected and will not be something to lose sleep over.

 

[DMissa]

And if you have to dig for things in ME/CFS research you are likely to be digging amongst stuff if no scientific interest.

I understand and agree with where this is coming from but I think this is an uncharacteristically dangerous sentiment to promote bluntly. Stuff should really be dismissed based on the details, not on first impression based on whether it was missed or not (or some other aspect not necessarily related to the results or design). There is so much research being done that it's reasonable to expect that useful tidbits might get missed in what might appear at a glance to be yet more chaff. Yeah, we all know what the obviously good stuff is, but that doesn't mean that we discard our due diligence, no?

 

[Jonathan Edwards]

Yeah, we all know what the obviously good stuff is, but that doesn't mean that we discard our due diligence, no?

Yes, my remark was in a rather different context.

 

[DMissa]

Yes, my remark was in a rather different context.

Gotcha. Maybe I jumped in without it.

 

[richie]

We'll never stop biobabble with words. It's like trying to stop the tides. I have driven myself grey and to sleeplessness and stomach pain trying to do so. Memes are too strong. Even as a mitochondrial expert, probably the longest in the tooth for continuous wet lab activity in ME/CFS research in the world, people will publicly disagree with me when I say I am not convinced there is a respiratory defect at play or that medications targeting mitochondria have no apparent basis. I may be the only person on the forum or at some of these conferences who can actually interpret the assay figures correctly and in very fine detail (to the level of individual well or run quality control), having spent tens of thousands of hours doing this in multiple tissues, but online and in short-form bursts of text, that means little.

We'll curtail most of the bulldust with meaningful research outcomes that lead to clearly effective clinical interventions. There will always be some crap left floating around (and opportunistic grifters will never disappear) but if flat earthers and the like still exist this is to be expected and will not be something to lose sleep over.

May I ask your view (if any) on this? https://aonm.org/mitochondrial-testing/ aonm is associated with at least one person who is not favoured by many on here, but the tests as far as i recall overlap with those Julia Newton used in Newcastle (UK) to investigate mit function in pwME (diagnosis) some years ago.

 

[MrMagoo]

We'll never stop biobabble with words. It's like trying to stop the tides. I have driven myself grey and to sleeplessness and stomach pain trying to do so. Memes are too strong. Even as a mitochondrial expert, probably the longest in the tooth for continuous wet lab activity in ME/CFS research in the world, people will publicly disagree with me when I say I am not convinced there is a respiratory defect at play or that medications targeting mitochondria have no apparent basis. I may be the only person on the forum or at some of these conferences who can actually interpret the assay figures correctly and in very fine detail (to the level of individual well or run quality control), having spent tens of thousands of hours doing this in multiple tissues, but online and in short-form bursts of text, that means little.

We'll curtail most of the bulldust with meaningful research outcomes that lead to clearly effective clinical interventions. There will always be some crap left floating around (and opportunistic grifters will never disappear) but if flat earthers and the like still exist this is to be expected and will not be something to lose sleep over.

I am really keen to fight memes with memes. I think theyre so underrated as a communication tool. I know we can’t meme everything but they can cut through bs really well.