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

Midnattsol said:
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.
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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.
 
Midnattsol said:
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.
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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.
 
Jonathan Edwards said:
It is about patients and advocacy groups deliberately and proactively spreading misinformation to other patients.
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I have never heard of such a thing.

Jonathan Edwards said:
About people with Facebook pages talking about brain damage o
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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.
 
Eleanor said:
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
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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.
 
duncan said:
I wouldn't be so quick to attribute nefarious intent to fellow patients.
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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.)
 
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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 often honestly like trying to speak to a crusading antivaxer or conspiracy theorist, they are so convinced.

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. And they dont want to listen when I appear to pour cold water on it, i guess perhaps because its painful to have a hoped for answer turn out not to be.

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?

Edited to add the 'cold water' sentence, and to say - I'm not throwing shade on desperate sick people who think they're helping. It's just really hard to know what to say or do to counter it.
 
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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?
 
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 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 for 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.
 
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Evergreen said:
That's helpful, thanks.


I think it would be very helpful to feed this (and the other info you provided) back to groups like the 25% ME group, and make specific suggestions of how to communicate with clinicians in a way that is least likely to reduce credibility and lead to harm.

For example, sticking to just what happens to the person if they sit up/are in a bright room etc, and not suggesting why. If giving written info, give only a summary of how the person is, not printouts from websites, no matter how convincing the person or family thinks that info is. An exception might be the section of the NICE guideline on severe ME/CFS.


I can see that misinformation would exacerbate the situation, and may well be a major contributor to some safeguarding orders. But Jonathan, no matter what we say, we are considered mad. They consider all of our symptoms mad. Have to go to bed after a conversation? Mad. Feel worse with exercise? Mad. Noise sensitivity? Light sensitivity? Mad. Pain despite normal ENA panel? Mad.

Again, I think this info should be shared and alternative approaches advised.


Yeah, any time words like "dangerous" or "toxic" are used, I groan. Ditto for inflammation, particularly neuroinflammation.

Again, people need to be advised against this, and explanations given for why.

Yep, not a good idea in general.

But in the case of very severe ME/CFS in hospitals, I imagine this would be said by families when the person is being urged to do more than they're able for even when they're not in a malnutrition crisis e.g. expose them to more light, more sound, sit up etc. And the families may have experience of how the person has responded to previous hospital admissions. They may well have had to rest completely in bed for weeks after those admissions.

I think it would be reasonable for families to explain that just being in hospital is more exertion and stimulation than the person is able for at home, and to say that they'd like the focus to remain on feeding during the admission.


Yes, absolutely.

Maybe S4ME could come up with a factsheet-type-thing about communicating with clinicians?
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I agree with everything you’ve said

I really hate all the biobabble and think that it is straightforward here that calling it out as wrong is actually a duty because none of the patients have that confirmed otherwise even if they smell it. And because if it is charities or advocates we need that confirmation in order to pull them up on it

I think it’s astounding how much kiddery and ‘wanting to believe the best’ excuses still going on regarding the problem of the medical profession and those targeted

The bullying and targeting extends to ‘allied’ definitely as far non medical as teaching, social work access to equipment . So it ensures every aspect we might need to survive in our day to day life has these ‘types’ trained to target us and at best stick their foot out to trip us all the time but many take us as a special case they terrifyingly fixate on for months and months like dogs with bones. Until we’ve had what we need taken away from us but normally they go after much more and mis using their position to influence everything else.

Living with me/cfs is being under attack and knowing what you have is only until somehow despite you keeping your head down some awful next person makes it their mission to make the next six months you trying to stay cool whilst being attacked with ridiculousness from all sorts of angles of people who shouldn’t be picking up the phone to them. But also we don’t have the same rights as others so good luck to us putting thru even the most barn door of privacy invasion as a complaint.

And it’s incited by bps and continually stoked by them. And designed so we don’t even have to be present nevermind say if he anything to be targeted. But those most vulnerable and with the least support or that the usual other human reasons for someone enjoying picking on others are behind it. The ‘there’s a website they never read somewhere’ is just a lie they use to claim they aren’t who they are to themselves and that they’ve done it not because they’ve been provoked but incited.

It normally is neither those who believe in or distribute this stuff. And I frankly assume for most these are lies ,perhaps told to themselves too but lies) that the patient or family committed any of those horrid faux pas at all.

And believe me I’ve spent decades where I can’t describe my symptoms because I’m sat normally opposite a physician or allied who has effectively been instructed to twist my words and lie to make me into that and just reporting the additional of an actual new frozen shoulder gives me terror because of it as it’s an opportunity for this bps crud to be used to lock me away. I’m so hamstrung by what I know they will twist or mishear I’ve hardly any words left I can use and I know that and will suffer the issue healthy people can just get tackled over risking saying something that will make me unsafe if that’s the dilemma. I’m completely silenced and have never been free and I know lying about being more well than I am is sometimes the only way I can escape with my life to suffer another day and start trying again in six months to get a basic in place.

This is just what has been spread to these physicians as the excuse for why the most vulnerable are being killed but it isn’t the cause , it’s what’s sought as ost-hoc justification for something they’d been brainwashed by social pressure and instruction to do and see patients as,

We are all exhausted at the point of seeing medical care. Perhaps a minescupe % might think they are helping themselves using these words but next to no one started off lying in bed when mild - that’s another rumour mill lie.

I think the sad thing is that unless you are an incredibly high integrity kind person who has been turning up prepped in front of this type so many times a year and studying them we feel we can’t call it and we have to say they had good intentions or maybe they were trying to be nice or we misheard. Hildt they are being trained the other way so telling us that is such a nonsense when the hcps are actively trying to catch us out and make it up if they don’t get it often.

It’s rife and it’s disgusting and it happens before they met me or I’ve spoken a word. Just today I’ve had another appointment where I’ve had a call pretending it’s been moved due to a clash . Yet given the last week what one individual has revealed they’ve done and been up to over the space of months despite me not having been able to speak makes it obvious that when they found out this was booked in they’ve now ‘had a word’

This person behind it isn’t even a medic themselves and yet it’s medics they are now trying to influence as well as allied in which they work .

You wouldn’t believe what I’ve had at me over time but it’s disgusting. And I always stupidly stand back and give grace for appalling behaviour and the effort these people go to in their lies.

We need to start admitting that there is a problem with bad people being easily encouraged to do awful things when they are given a free dog to kick and they take a huge amount of time out of their months to do this and then cover it up, dragging in all around and totally wrecking someone medical file and relationship they might have taken years to build after the last one

In this case I’d say I don’t know what I did but I mean I know it hasn’t come from me at all. And it’s no dodgy claims. And their excuses actually contradict each other.

This happens when I’m too ill to speak and I’ve found certain people deliberately choose when it’s raised to put me in a situation to take advantage and then cause havoc and I have to ring up others saying they’ve lied about me without saying that - because as they know , me calling out or describing factually what they did or said makes me look mad or forces the person I’m reporting it to take the side of the liar.

So yes I have issues with those spreading bs that makes those lying about who most of us are have any excuse at all and always disowned the illness because of them. And need the charities to be better and think it’s not on what is happening with the gap for those more severe on them backing our info whilst also telling the medical profession to stop lying that we believe in witchcraft.

But no I’m afraid with most of those who got harmed by these people I’m sorry but I’ve sadly done the on the ground research and they are doing it based on the medics unkindness irrational wish to target us ‘for being severe’ and then they make up these lies is factually what tends to happen. That’s the truth I’m afraid.

And I don’t call individuals liars easily. I give them too many chances until it’s being six pieces of barn door no one would have put up with the first I’m too nice giving leeway stuff where undoubtably I said X and they deliberately wrote the opposite level then phoned people behind my back who they weren’t entitled to telling lies in order to make me distracted sorting what they’d stirred and looking exhausted and eccentric only because I’m trying to defend against wild lies.

These people are bold and incorrigible, I’ve rarely seen anything like it in careers in other places where you say this stuff is ‘rife’ as workplace competitive games. And because those who might be ok are faced with someone they think might not be a loon when it’s other stuff or has a redeeming feature elsewhere it’s my whole reputation that gets rewritten with these lies.

It’s not ok for it not eventually to be called out for what it is and unlocked so you see how deep and extensive it goes. I cross paths by my file going near the desk of some allied one day and I spend the next year being bombarded with issue after issue that clearly traces back to then overstepping their role and picking the phone upwards to stir up my medical care. Because they get allowed to do it and not sacked because everyone believes ‘I must have done something to deserve it’

I’ve had a consultant appointment for something elsewhere I’ve always been cagey and never even mentioned fatigue to him due to terror if this. And one day I had to gently work out a one-liner to ask if c could be looked into and in my one line something must have accidentally struck by sounding too near to the thousands landmjnes bps have set and I got a 30min lecture on this assumption which was bacme function bs before once they’d finished I clarified and said ‘as I was saying before you interrupted , I mean it’s a bucket diagnosis’ . How given I can’t do that long talking and getting to the appointment takes it out of me so that I’m clearly desperate for help to go but only have ten mins to get business done I didn’t crumble into desperate tears was only training over decades that doing that would get me locked up. My life depended on it.

So no even those who are good don’t realise how insidious these rumours have been and how they never have really targeted those either saying or believing them just a straw man claiming that because bps claims there might be some out there who do they’ve stitched everyone up to hear it in whatever people say. So we are silenced. And even when silenced they still hear those words.

It’s because we ‘aren’t out of bed anough’ simple as that. And then comes the lies about why we aren’t being nothing to do with the ‘described function as it is’ because they’ve been told not to believe that and it’s deeply deeply ingrained.

And if a kind colleague might think that’s harsh then they add in lies on top or hear what they want to hear. But it’s all never happened normally. The power of what that bps person who is telling this to Jonathan is extreme. It’s branding us all loopy liars so they think we are saying this even when we haven’t opened our mouths as that person made sure they put that lie in the heads of anyone we meet before we meet them.

And as it is I do not believe someone with MS would be actively targeted to have every aspect of their health life, medical file wrecked by one individual on a mission so often even if they believed in martians or spoon bending and said it on a soap box in the ward.

And most of our supporters aren’t believing in anything other than bps and struggling decades on to make sense themselves with how forcing us out of bed and to push thru had led to us being so much worse. It really is NOT for most of those targeted with awful things even those who ever thought this

It is really really bad. Shocking to a person who knows people can be bad and misguided and does all they can to tiptoe and avoid issues and yet assumes maybe they didn’t mean it until it’s too late because it’s ten times worse than even I thought it was bad. And no one from the few who are good believes us and we know those that do this know what they do is so bad and outrageous then us describing it and their madness instead makes us sound mad or paranoid level.

So these two need separating as issues. And the biggest one that actually needs tackling is the brutality encouraged and the lies that are clearly being reused to encourage doing it before we’ve even been met so when they see us they can’t see straiggg or hear straight and are just primed to harm us having been told we deserve it.


And yes I want these idiots to shut up and stop seeking attention and calling it ‘awareness’ when that only happens when we all agree coherently messages.

But those targeting us are at best punishing those with nothing to do with it in their place and really I suspect even without them are doing it because bps just don’t like being wrong, don’t like really ill people and are priming with whatever they think means they can get away with it others to be their henchman. It’s just a very poor cover they use to incite and then claim it was deserved. And it stopped really having any medical claim behind it in 2021 but they don’t fancy stopping. So these two bs and lies , bare faced, made up rumour mill sicko nonsense from not nice people having a field day at the sickest expense just because they have contempt for those they’ve made so ill and harmed and want others to hate them too and harm them too and believe they were harmed by ‘their own madness’ so no one looks closely at what they did repeatedly and are asking someone else to repeat again is quite simply what it’s about. It’s basic. One hasn’t caused the other
 
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We should separate receipt of disability benefits from diagnosis entirely. Diagnosis should be purely about trying to understand what is wrong and how to best manage it.

These horrible dynamics come in part from diagnosis being required for receipt of disability benefits and other kinds of support.

This leads to base level of distrust towards patients that feels like mistreatment and discrimination. It leads to the psychosomatic propaganda whose purpose is in part to make it harder to access disability benefits... it turns society against sick people. It makes it harder to speak openly about one's illness out of fear or saying something that could be used against us. It leads to doctors being taught to disbelieve, to distort, to push nonsense treatments just to delay the disability benefits.

Or maybe it won't help because the truth is that those who are sick will be abandoned and those who want to abandon them will always create a framework to achieve that. In one way or the other.
 
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Eleanor said:
But if S4ME is going to advise families to stick to saying 'my child can't do XYZ because it makes them ill', rather than 'my child can't do XYZ because it makes them ill due to [unproven theory]' because the second form of words will expose them to safeguarding procedures and allegations of creating a toxic family environment, it'd better be sure that actually is the case, and that sticking to the first form of words won't attract the same allegations regardless.
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I think we have two issues

I’ve always hated the biobabble stuff that makes the rest of us want a new label just as much as the cfs label literally is created to make us feel violated like an actual cattle brand by how it changes how people interact with us so we get the equivalent of ‘everyday jam’ constantly many times a day.

And I don’t get why we’ve never really had a sure, proper good charity just giving good info with no added nonsense from other bits so that the most of us who just want to not be branded by either can just have a normal illness reputation-wise. But also if things are discussed then done so properly so people aren’t having to spend years working out if 35 supplements is bs or not etc. Whilst being open to some small things help some and no sleep hygiene can be incredibly destructive to those with a certain type at least so it doesn’t ‘help’ or need to be imposed on all etc.

But on the other hands it’s not these people having cause of the horrific things being done to others who have nothing to do with it barring there always being if they do it to enough of us the odd one you can claim accidentally said or actually believed one thing then no it’s not them really ‘asking for it’ and at best bps have gone about priming the situation so unless we are saying the lie that doing more makes us more well they can then lie and say we’ve said something loopy. I see it happen.

It’s a worse situation than the ‘she shouldn’t have been walking alone down a dark path’ or ‘wearing those clothes’ because that fib is primed to be seen even when the person actually did or said neither.

I underline the word priming because I’ve seen it where my incredibly careful words have been saying nothing near it but that person opposite has been so incited they imagine it before it’s even said. It is horrific to live under.

It is literally so powerful as a childish tactic that a GP I was seeing for something else over a long period called me in once they realised I also had this diagnosis. And because I knew to slag off myself and level of illness to stay safe based on their intro then started congratulating me on ‘being better’ because ‘I was wearing lipstick’ (when I can’t wear make up only due to eye issues and this was just lip balm as it was winter but it happened to be coloured as that’s what the supermarket had). THEN retrospectively REWROTE history in her own mind to tell me she was relieved ‘because I’d been so ill I’d worn a dressing gown to that first appointment’.

Now firstly I didn’t own a dressing gown then. It was only a day later I clocked she false-memoried (thanks to incitement) a black thick very expensive and well kept cashmere and angora overcoat that just happen to have a tie at the waste. And was complimented by all , probably her at the time. But now I had this label , and she’d read this nonsense and had someone in her ear well that was something completely different. She could no longer see straight and I knew she could no longer hear straight as had been told my voice was that of a deluded, so fox then with saying what they want to hear and get the hell away from the unsafe person. Whatever the lifelong cost literally that has had on the rest of my life that no other illness would take I knew if I didn’t sacrifice everything I needed and should have had to get out of there then the alternative is worse and extreme.

I had to choose sacrificing all just to survive that day. And that’s happened many many times over and it’s chilling and unmistakable.

And no that’s not over reaction as I’ve been there enough times before and you can’t talk sense because once someone has been primed like this they can’t hear you , you don’t exist other than writing a fake file of things they don’t even realise they imagined because bps put it in their mouth and head.
 
And ps I am in an appointment so wary that when I get asked whether ‘I’m allergic to plasters’

as an hcp is asking whether to put one on

That I’m conscious of how I answer that

And yes it sticks in my brain every time I’m asked even more due to this forum that they use the term allergic. When they might mean things that aren’t true ‘allergy’

then realise it doesn’t matter what I say (sometimes leaves an itchy red mark but don’t worry) because whether that becomes something twisted bears NO RELATION to what I said or did and is I have studied only down to the person themselves and others telling lies that influencing their made-up memory or even what they see or hear.
 
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