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

[Eleanor]

I don't see this as a ME specific issue in medicine, but an issue with medicine as a field unable to cope with not having the answers. I definitiely put the responsibility at the feet of health care professionals and not patients. Yes, patient organisations should not put out misinformation, but there is quite a lot of it coming from the healthcare sector and expecting (mostly) lay persons to stand up against doctors/researchers with years of experience is not fair. And the power dynamic is squarely in favor of the doctor/researchers.

Should we stop helping people with food allergies since there are masses upon masses of social media influencers who talk about different exclusion diets? No. And if someone comes to me and tells me they have an allergy, I will simply ask if it is in fact an allergy and not say an intolerance - it's not hard to ask why they use specific terms/phrases. They might even have been told by a doctor to avoid a specific food - and then other doctors will make fun of them for "believing whatever they read online".

I'm more worried about the harm doctors do when they don't know what they are talking about. I've met doctors who mistake food intolerances for allergies, but for some reason I am not allowed to make fun of them, but it is somehow accepted to do so if it's a patient making the mistake. It is a culture problem.

Vaccination would be another example. There is astonishing misinformation going around about vaccines, people promulgating the weirdest ideas, but this hasn't led to medics deciding to give up vaccinating anyone - because they are confident that what they have to offer is better than what the lunatic fringe is offering.

 

[Jonathan Edwards]

Yes, patient organisations should not put out misinformation, but there is quite a lot of it coming from the healthcare sector and expecting (mostly) lay persons to stand up against doctors/researchers with years of experience is not fair.

But this is not what this discussion is about. It is not about patients standing up to doctors. It is about patients and advocacy groups deliberately and proactively spreading misinformation to other patients. About people with Facebook pages talking about brain damage or charities doing a sheaf of articles on "comorbidities" that do not exist - aimed at other patients.

 

[duncan]

It is about patients and advocacy groups deliberately and proactively spreading misinformation to other patients.

I have never heard of such a thing.

About people with Facebook pages talking about brain damage o

Maybe they believe they have brain damage and assume it's a common ME/CFS feature?

I wouldn't be so quick to attribute nefarious intent to fellow patients.

 

[Jonathan Edwards]

There is astonishing misinformation going around about vaccines, people promulgating the weirdest ideas, but this hasn't led to medics deciding to give up vaccinating anyone

So that situation is completely different from the ME/CFS situation where we have letters showing that doctors have tried to make very sure they can stop treating people with ME/CFS. ME/CFS at UCLH was shunted off to the Homeopathic Hospital to have voodoo treatment so that nobody else needed to be disturbed. And that has happened throughout the country. Ten years ago there were still half a dozen physicians treating ME/CFS. Now there are pretty much none.

 

[Jonathan Edwards]

I have never heard of such a thing.

Well now you have!

 

[Jonathan Edwards]

I wouldn't be so quick to attribute nefarious intent to fellow patients.

You are missing the point. This is not nefarious intent. The people involved no doubt think they are doing good, just like the missionaries did. But believing you are doing good is not good enough. You have to check your facts.

I realise that the wording was not ideal 'deliberately putting out misinformation'. These people are deliberately and proactively putting out what they think is information but is in fact misinformation.

(Although in a recent case an organisation decided it was going to keep the stuff out there despite it being very clear that a medical opinion thought it was unfounded and gave detaiiled reasons why.)

 

[JemPD]

I have had trouble keeping up with the thread but I must confess that the misinformation put out by people believing they are crusading for “getting the truth out there” and informing people, really upsets me. I have tried on a few occasions to point out that a lot of what is in the infographic they just shared is unevidenced. But I just get shouted down and told I am part of the problem. It’s honestly like trying to speak to a crusading antivaxer or conspiracy theorist. And I just don’t know how to counter it. People are so thrilled every time whichever researcher or clinician shared some “facts about…” post.

I am inactive in a couple of fb support groups that I used to enjoy because of the overwhelming torrent of misinformation. It’s appalling and makes me cringe. And not only about ME/CFS but about everything. I just feel helpless in the face of it. I am rubbish at debate even when I was well and when they are coming at you with quotes from drs from eminent places & people including pur charities I just don’t know what to say.

So have now curated my fb feed to show me only cute bunnies and artists.

That was a bit of a lament of what you all already know but what I trying to draw attention to is that I just never know what to say when faced with the misinformation- if anyone is good at this stuff pls tell me what to say… perhaps a thread on that would be good?

 

[JemPD]

Another thing I’d like to particularly ask @Jonathan Edwards is how to distance myself from the biobabble and give the clues to drs that I am sensible and not one of the biobabble brigade. Because unfortunately I am in a wheelchair I need eye and ear protection when I go to hospitals for other conditions. And I know what they’re privately thinking….

Are there things I can say/avoid saying In the first few moments that will dissociate me from the biobabble crowd?

 

[Hoopoe]

It's all a reflection of how patients are treated by society.

Saying I feel shitty and don't want to do this thing isn't accepted. You just get labelled as lazy, lacking willpower or being depressed and then bullied or pushed around. Then you feel even worse and it also interferes with the rest so it slows recovery.

Then you learn how to say I feel sick and can't do this. This works a bit better, but it won't stop people from bullying, pushing you around and mistreating you once they realize that this state might be long term thing or permanent.

Then you learn that explaining the problem more precisely, including technical terms like orthostatic intolerance to describe the progressive difficulty tolerating uprigh posture, is more effective. If you sound like a patient with a serious problem, you'll be treated with the due respect.

The symptoms are hard to describe and people mistake this to mean "cannot be that bad". It just means the symptoms are not part of ordinary life and so society never developed a clearly defined language and cultural knowledge to talk about them.

Society's bad attitude towards this illness creates a demand by patients for material and messages that helps them being taken seriously. Maybe patients don't realize that many clinicians aren't impressed.

 

[Jonathan Edwards]

Are there things I can say/avoid saying In the first few moments that will dissociate me from the biobabble crowd?

I was never much good at that sort of thing I am afraid. You seem to express your position very clearly and I suspect your instincts are what you should follow.