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.
How do we stop charities and influencers spreading bio-babble about ME/CFS?'
- Thread starter Sly Saint
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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.
Jonathan Edwards
Senior Member (Voting Rights)
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.
I have never heard of such a thing.
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
Senior Member (Voting Rights)
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
Senior Member (Voting Rights)
Well now you have!
Jonathan Edwards
Senior Member (Voting Rights)
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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JemPD
Senior Member (Voting Rights)
Something thing I’d like to particularly ask @Jonathan Edwards is how to distance oneself from the biobabble and signal to drs that I am sensible and not a member of the biobabble group, if I go into hospital. 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…. I don’t want it to be assumed that I have such unhelpful ideas simply because they see me looking like someone they expect to have unscientific ideas.
Are there things I can say/avoid saying In the first few moments that will dissociate me from the biobabble crowd?
Edited to add the last sentence of first paragraph- for clarity.
And I know what they’re privately thinking…. I don’t want it to be assumed that I have such unhelpful ideas simply because they see me looking like someone they expect to have unscientific ideas.
Are there things I can say/avoid saying In the first few moments that will dissociate me from the biobabble crowd?
Edited to add the last sentence of first paragraph- for clarity.
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Hoopoe
Senior Member (Voting Rights)
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.
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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Jonathan Edwards
Senior Member (Voting Rights)
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.
Hoopoe
Senior Member (Voting Rights)
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.
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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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 [sex]ism’ 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.
People are getting these things happen because bps are priming them, and yes they are looking up any material they can use to back up the claim but if it didn't exist, they invent it as we know from the court case on the heckled once in one lecture vs constantly claiming all patients are out there doing death threats nutbagging.
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.
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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.
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.
MrMagoo
Senior Member (Voting Rights)
Oh wow I am never asked, they always come at me with the micropore then get offended that I say it gives me a rash.
Last time I was pointedly told “we don’t have plasters instead, because they give everyone a rash” which seems like either a pointless tit for tat lie, or a bizarre coincidence.
I’m not talking about a situation where patients stand up to doctors. I’m talking about how clinicians should not base their treatment of a group based on how said group is being represented in (social) media by others.
People with food allergies, intolerances and celiac disease have a lot of «champions» and organisations with various fact-checking abilities. As a clinician I can’t just decide to not bother with them as a whole because someone on the internet says gluten is the cause of all ails.
Jonathan Edwards
Senior Member (Voting Rights)
I can't really follow the point @Midnattsol. You said standing up against doctors. We are not talking about whether it is right or wrong for doctors to ignore patients. It is obvious that is wrong. The issue is the potential harm from patients putting out misleading information to others, who find themselves in an environment where they will get ignored if they repeat that information.
Doing something about the doctors is a different problem that I spend a lot of time trying to work out how to tackle. The issue here is just trying to limit damage while the current situation exists.
hotblack
Senior Member (Voting Rights)
It’s a difficult and obviously emotive topic. It feels like we all want the same thing though and there’s just sometimes a bit of talking past each other and getting caught up in what others motivations are or who is to blame. Maybe we can set that aside?
I do think we should all try and focus on the thing we all want and we can all agree on which is to challenge the misinformation. Be that from patients, patient advocates and charities or medical professionals.
I do think we should all try and focus on the thing we all want and we can all agree on which is to challenge the misinformation. Be that from patients, patient advocates and charities or medical professionals.
The point I’m making is that it is the same situation - doctors want to ignore people who come to their office talking about some allergy, diet or supplement the doctor has never heard of. And in nutrition it doesn’t matter if you can test for the problem, it also occurs when there are tests that can show for certain if someone has a condition. It’s purely hubris from doctors going «it’s impossible to be allergic to meat!» or «you can’t have celiac disease without these gut symptoms!».
To me it seems less feasible to educate all patients and carers about what to not say at the doctors, compared to educating the doctors about how sometimes people get things wrong because they are ill informed (and sometimes it is the doctor that is ill informed and should check their guidelines for things like meat allergy because the patient is not just making it up).
MinIreland
Senior Member (Voting Rights)
I was told I should ask when I don't understand so here goes. What exactly is the misinformation here? Is it the distinction between PEM and PENE? Is it the detailed explanation that are based on theory, not evidence? Something else?
Jonathan Edwards
Senior Member (Voting Rights)
I think the focus on theory is at the heart of it. Also the implication that the theory predicts harms we do not have evidence for. The PEM/PENE distinction reflects of the theoretical mindset of the ICC group. As has been said, it is fabricated and sounds uncomfortably like an exclusive club card.
On a wider basis it is all about claiming the existence of 'special diseases' that form a focus for advocacy that threatens to become a sort of religion.
So instead of the pragmatic category of ME/CFS we have the special disease of ICC defined 'ME' with all sorts of nasty brain damage and comorbidities. Instead of common or garden hypermobility we have 'hEDS'. Instead of allergy we have 'MCAS'. And so on.
ME was originally an acute epidemic illness that looked a bit like polio. Ramsay made the mistake of thinking the ME/CFS that some people had later was a chronic phase of this special disease. The CCC people realised that 'ME' was being used to describe the same people as 'CFS', as long as you tightened up Fukuda to avoid any old fatigue. The ICC, I suspect driven by US researchers with 'theories all their own', decided that ME should go back to being a special disease but now one that looked a bit like AIDS.
We now know that ME/CFS really is a special disease but nothing like either polio or AIDS. It is probably 'neuroimmune' but not for any reasons to do with the ICC speculations.
Up until this point in time it has been hard to see how to discourage mistaken ideas without anything to put in their place. But over the last 5 years I think we have learnt enough to know what should go there - ME/CFS. White and co tried to claim this was a bogus new diagnosis but I think he has been outvoted. People practicing now accept the ME/CFS label.
Many, and probably most, of the advocacy groups were built up from people who saw the special disease as 'ME'. Quite what they thought that was is unclear but in some cases it was heavily tainted with the original Acheson idea or the newer ICC idea. It is time to clear all that away and focus on the real disease and on evidence.
Kitty
Senior Member (Voting Rights)
Most of it, really. It's someone setting themselves up in a position of expertise—with little obvious justification—and expounding their views.
But I think the central point is that they're basing their description of "ME" is on something different, a neurological condition described at the Royal Free Hospital after a 1950s polio outbreak.
That has no relation to what we currently understand as ME/CFS, although the same name was used. With 20/20 hindsight there was no justification for doing so—ME/CFS isn't associated with polio, doesn't tend to occur as outbreaks among people who work closely together, etc etc. There appeared to be symptoms in common, but that's not unusual. The doctors who worked on Royal Free Disease and described ME did so in good faith, but things moved on a long time ago.