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

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.
 
Jonathan Edwards said:
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.
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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.
 
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.

www.theguardian.com

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 www.theguardian.com
 
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.
 
Jonathan Edwards said:
And if you have to dig for things in ME/CFS research you are likely to be digging amongst stuff if no scientific interest.
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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?
 
DMissa said:
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.
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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.
 
DMissa said:
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.
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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.
 
Robert 1973 said:
A few years ago (maybe 3) I asked my (very helpful) GP to change my diagnosis on my notes from CFS to ME/CFS. She agreed but then told me that the system would only allow her to enter ME or CFS, so I asked her to change it to ME. From what Jo says above, I wonder if that was a mistake but I doubt it makes much odds.

I don’t know if ME/CFS is an option on GP systems now. If not, it should be.
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Sorry, I'm a bit late to this but my diagnosis was entered into the system as CFS around the time of your post. Furthermore, earlier and later NHS notes and letters mention CFS and chronic fatigue, not ME/CFS.


On a somewhat related note, I'm not sure if I've seen PEM in my GP surgery notes. When I mention it to the doctors, it inevitably leads to the mentions of fatigue and they usually just type fatigue without mentioning PEM.
 
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Jonathan Edwards said:
6. The fluorospot data on circulating T cell cytokine production remain intriguing and it sounds as if there might be more data firming that up soon.
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I just came across this comment again- I was just wondering if the data you were referring to here are still due to be published? And if it was a study that's public knowledge or something you've had advance sight of?
 
Jonathan Edwards said:
I wondered that a while back. I have not heard more. Which is a pity.
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That's frustrating! It was a really interesting paper (I assume we're talking about the long covid IFNy paper from Cambridge) and it would be really useful to know if it replicated, especially in an ME/CFS cohort.

Was it follow on work from the same team? It would be good to know where the data have gotten to in any case.
 
Utsikt said:
People keep putting it out there because the real doctors don’t do better and help them understand that there’s a lot of biobabble going around.

The responsibility and accountability lies with the medical profession.
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There's a long standing opinion with some medical spheres that this is all in our head. This led them to put definitions based on their assumptions. Although there is still so much stigma, gaslighting and mistruths out there, those that are trying are genuinely confused about what these titles mean such as the difference between ME and CFS. I agree the accountability does lie with them as the damage they have done is immeasurable. How can we help them understand? How can we bridge this gap to make changes?
 
SophieME said:
How can we help them understand? How can we bridge this gap to make changes?
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I have very little hope for the people that believe the biopsychosocial explanations. I’m also not confident about changing the minds of the people that do poor biomedical research or clinicians of the same breed.

I suspect we’ll have to get the neutral people to work with us, and that seems to be happening right now with multiple groups of excellent researchers joining from other fields.

The others will be rendered irrelevant eventually.
 
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