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Warnings against dangerous Miracle Mineral Solution (bleach, chlorine dioxide)
boolybooly
Senior Member (Voting Rights)
I like to think she was advising people about correct dosage and how to use it responsibly, if they so choose. Not that I would.
This is very similar to water chlorination using chlorine dioxide, which is used for raw water treatment in the UK. This is probably the source of the unconscious appeal & marketing synergy for some.
Not sure what all the fuss is about though. You probably get more chlorine from a trip to the swimming pool and still end up with a veruca.
On AmazonUK the recommended ingredients are marketed as camping equipment for water purification. So presumably food safe if used correctly.
When camping I never drank water from the environment, except once I boiled sea water for mussel and carrageen chowder, which was quite nice, since I didn't have any salt with me, on Skye. Boiling works quite well, there are a lot of things trying to kill us on this planet.
Which is why chlorination can be a good thing but the dose makes the poison. If you call it drinking bleach it does sound bad but that is one reason I don't drink tap water any more.
This is very similar to water chlorination using chlorine dioxide, which is used for raw water treatment in the UK. This is probably the source of the unconscious appeal & marketing synergy for some.
Not sure what all the fuss is about though. You probably get more chlorine from a trip to the swimming pool and still end up with a veruca.
On AmazonUK the recommended ingredients are marketed as camping equipment for water purification. So presumably food safe if used correctly.
When camping I never drank water from the environment, except once I boiled sea water for mussel and carrageen chowder, which was quite nice, since I didn't have any salt with me, on Skye. Boiling works quite well, there are a lot of things trying to kill us on this planet.
Which is why chlorination can be a good thing but the dose makes the poison. If you call it drinking bleach it does sound bad but that is one reason I don't drink tap water any more.
Jonathan Edwards
Senior Member (Voting Rights)
How do you advise on a correct dosage when there is no evidence of efficacy?
boolybooly
Senior Member (Voting Rights)
OK I should declare my interest here as Dr Myhill supplies my medical evidence for PIP so I have an interest in viewing her as benign and maintaining a trusting doctor patient relationship.
In my experience Dr Myhill has always been highly ethical and particularly careful about respecting her patients' agency. I think she has been treated badly by some in the UK medical fraternity because she is a woman and by US owned medical insurers because they dont treat her the same way as the previously UK owned company they bought out did.
As I said she advocates for patents like me so I always think very carefully about what she does and encourage others to find out more.
In this context I expect a correct dose would be one which is food safe, so it does not make people ill.
This is benign if people have been persuaded to try it by internet hype elsewhere and are not sure of the right dose and are asking for advice, which I expect they are.
Since as you say there is no evidence for or against and this product is sold for preparation of potable water, there is no justification for advising against trying it on a sceptical basis and this would not respect patient agency or provide benevolent guidance. So better to guide than not to.
Personally I see it as a similar justification to giving addicts a consumption room.
The fact that the product link leads to a trusted vendor on Amazon for a product which is sold to prepare potable water, apparently using ten times the dosage Dr Myhill recommends (since 120ml treats 60 gals on the website but Dr Myhill's recommended dose of one drop per already potable litre makes 600 gals), appears to make her recommendation responsible and that this does not appear to benefit Dr Myhill herself i.e. not from her shop, is evidence that this page of advice is not motivated by profiteering and is more likely the result of a considered and benign rationale for her patients' benefit.
Since you asked, this is my view on how she probably arrived at a correct dose.
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What research evidence does she use to say what dose is safe?
If it's just the amount water companies are allowed to put in water that is safe for drinking, then why bother to take it at all, why not just drink tap water? And the evidence that drinking tap water doesn't cure ME/CFS must surely be that lots of us drink tap water and remain sick.
If your argument is that Dr Myhill is preventing harm from patients following internet influencers advice to use higher doses than in tap water, then surely her advice should simply be that there is no evidence it is medically beneficial, and advise against taking it at all.
If it's just the amount water companies are allowed to put in water that is safe for drinking, then why bother to take it at all, why not just drink tap water? And the evidence that drinking tap water doesn't cure ME/CFS must surely be that lots of us drink tap water and remain sick.
If your argument is that Dr Myhill is preventing harm from patients following internet influencers advice to use higher doses than in tap water, then surely her advice should simply be that there is no evidence it is medically beneficial, and advise against taking it at all.
Jonathan Edwards
Senior Member (Voting Rights)
If you have a conflict of interest surely it would be better to say nothing at all? It is pretty clear to the rest of us that Dr Myhill is making use of this as part of her claim to be an 'expert' on ME/CFS. My impression is that she has been extremely unhelpful in stirring up conflict between patients and the medical profession by spreading unfounded ideas - like this one.
If the dose is just what is in drinking water, as Trish says, this is just a con. Why not be honest and say so?
boolybooly
Senior Member (Voting Rights)
Personally I think it is placebo and will tell anyone who wants to know. Been there done that, which is up there with faith healing and whatnot. My mum though always told me never to use my intellect to undermine other people's belief systems if they make them happy, take it up with her. She was a primary school headteacher and learned in her career to overcome the impulse to power present in many teaching cultures, leaving teachers and pupils free to enjoy the process of learning thanks to her headmistress at her first school who was large jovial and happy. Besides, my own conscience agrees, mum is not wrong.
People are free to try harmless stuff if they want, denial of agency is unjustified with harmless experimentation. The point of experimentation is we don't know what will happen but want to find out. You cannot find out anything if you do nothing. That is like church v Galileo, suppressing enquiry for no better reason than they think noone should do anything without their say so, again for no reason other than addiction to power.
https://me-pedia.org/wiki/Sarah_Myhill see complaints
I experiment a lot but always play it safe, research carefully and don't base these on unreliable delusions, which is my decision. If anyone asks I tell them why but don't seek to impose my views. Otherwise I respect others' freedom to choose and the rules of this forum not to offer treatment advice, which cuts both ways. Nothing else to be done unless someone is recommending a harmful dose of something provably nasty in which case show the evidence and report it to the proper authorities and get it stopped, of course... but I don't think Dr Myhill's guidance fits that description. I think it is more to do with the GMC and others having megalomanic tendencies, like those which some teachers and ecclesiastical institutions sometimes develope.
Turn the question around, why should anyone tell them not to do it if it is harmless, why should she?
People are free to try harmless stuff if they want, denial of agency is unjustified with harmless experimentation. The point of experimentation is we don't know what will happen but want to find out. You cannot find out anything if you do nothing. That is like church v Galileo, suppressing enquiry for no better reason than they think noone should do anything without their say so, again for no reason other than addiction to power.
https://me-pedia.org/wiki/Sarah_Myhill see complaints
I experiment a lot but always play it safe, research carefully and don't base these on unreliable delusions, which is my decision. If anyone asks I tell them why but don't seek to impose my views. Otherwise I respect others' freedom to choose and the rules of this forum not to offer treatment advice, which cuts both ways. Nothing else to be done unless someone is recommending a harmful dose of something provably nasty in which case show the evidence and report it to the proper authorities and get it stopped, of course... but I don't think Dr Myhill's guidance fits that description. I think it is more to do with the GMC and others having megalomanic tendencies, like those which some teachers and ecclesiastical institutions sometimes develope.
Turn the question around, why should anyone tell them not to do it if it is harmless, why should she?
Because she is recommending a particular, and you say 'equal to tap water', dose of something that is harmful in larger doses. A lot of people are not able or willing to research things as thoroughly as you say you do, and a lot of people think, my doctor recommends dose x of chemical y, but other people recommend more. It didn't work for me, so I'll try doubling the dose. Lots of people are illogical. She should be aware of that.
Yes, I respect your choice to try lots of unevidenced things, I did so myself in the early years of my illness. I wasted money, kidded myself some things were causing improvement and started doing more only to crash, and felt bad about not being able to cure myself. It's toxic even if the chemicals involved are only placebos. I should know, I was a quack back then too, although what I was doing was harmless and I knew my limitations.
boolybooly
Senior Member (Voting Rights)
I dont agree obviously.
If I had an official capacity then that would be cause for recusing myself but this is a discussion forum and I am here to discuss. The correct and ethical thing to do is declare my interest honestly and then share my opinion as cogently as I may and let others decide for themselves based on the strength of the arguments.
JemPD
Senior Member (Voting Rights)
I'm with you broadly speaking @boolybooly - in terms of not imposing our belief systems.
But I dont think her approach can be seen as 'if you're going to do it heres how you can do it without harming yourself', because the title of her page on it is 'Chlorine Dioxide a useful antifungal', and the top of the page is the quote from Jim Humble singing it's praises & uses.
Jim Humble's quote ends with
So it comes over as at best tacit agreement that it will be useful. Her first line especially.
Which from a doctor will be seen by most as tantamount to a recommendation, personally I'd read it as something she definitely recommends.
I dont doubt Dr Myhill's motives to help, her compassion or willingness to fight for her patients, she's been amazing in that regard, I saw her myself in the 2nd year of illness & it was of great help to have a doctor believe & validate my experience.
And I dont doubt issues of power have come in to her treatment by the medical establishment - because issues of power come in to everything involved with the med establishment as far as I can tell.
However I do feel she does have a responsibility as a doctor to present facts, ie evidence, not recommending belief systems. And in the field of ME I think all stuff like this does is contribute to the narrative of ME/CFS patients as nutters with weird ideas about health/illness etc.
The BPS gang present their belief systems as fact, when there is no evidence. Medicine needs to be about evidence, not 'beliefs'.
But I dont think her approach can be seen as 'if you're going to do it heres how you can do it without harming yourself', because the title of her page on it is 'Chlorine Dioxide a useful antifungal', and the top of the page is the quote from Jim Humble singing it's praises & uses.
Jim Humble's quote ends with
& then Dr Myhill says underneath his quote that
Followed by the protocol on what to do & how to do it.
So it comes over as at best tacit agreement that it will be useful. Her first line especially.
Which from a doctor will be seen by most as tantamount to a recommendation, personally I'd read it as something she definitely recommends.
I dont doubt Dr Myhill's motives to help, her compassion or willingness to fight for her patients, she's been amazing in that regard, I saw her myself in the 2nd year of illness & it was of great help to have a doctor believe & validate my experience.
And I dont doubt issues of power have come in to her treatment by the medical establishment - because issues of power come in to everything involved with the med establishment as far as I can tell.
However I do feel she does have a responsibility as a doctor to present facts, ie evidence, not recommending belief systems. And in the field of ME I think all stuff like this does is contribute to the narrative of ME/CFS patients as nutters with weird ideas about health/illness etc.
The BPS gang present their belief systems as fact, when there is no evidence. Medicine needs to be about evidence, not 'beliefs'.