Some concerns about homeopathy

[IreneF]

No joke: My German mother just brought me homeopathic pills already dissolved in water, while I was reading this thread. And she used to be a Biology and Chemistry teacher.

Sorry guys! I'm on the dark side now.

Tell me it ain't so!

 

[Woolie]

On a lighter note:

https://twitter.com/i/web/status/907333223482621957

 

[Jenny TipsforME]

I haven't been able to read the whole thread but has there ever been discussion here about the potential harm of the placebo effect for ME?

Usually the whole placebo phenomena is hailed as positive for health, even if there are other concerns. I wonder if ME is an exception.

1 You take something or do something which you believe could help (There is no objective reason that it does help/the theory is irrelevant to ME, but you don't know this)
2 The placebo sensation kicks in (I'm not talking here of actual physical healing caused by belief).
3 Subjectively you feel so much better so you increase activity
4 You crash or feel worse because there was no objective improvement in your underlying health problems so no capacity to increase activity

Probably something like this is going on with CBT/GET. People feel like they can walk further but on objective tests they actually can't (there's no improvement on the walking test, or they've cut back walking around the house in order to do their timed exercise walk). So what happens if they keep pushing? They crash.

I think stage 4 is why this really matters in discussion of ME and why we should be able to politely argue with claims we suspect are placebo, or correlation rather than causation. Often proponents of a treatment are in stage 3 and don't know they're heading for 4. If their arguments persuade people people to start stage 1 then the problem perpetuates itself.

BUT I don't think we should undermine other people's experience though, remembering that we all have baggage from doctors not accepting us as authorities on our own bodies, but there should be a way to discuss the interpretation of what happened without upsetting each other. This might include not joking about treatments in a discussion of whether they work, even if we do find them ridiculous. I think making fun of ideas in a discussion could make it harder for people to change point of view- both sides get more entrenched rather than having an open debate.

 

[Wonko]

1 You take something or do something which you believe could help (There is no objective reason that it does help/the theory is irrelevant to ME, but you don't know this)
2 The placebo sensation kicks in (I'm not talking here of actual physical healing caused by belief).
3 Subjectively you feel so much better so you increase activity
4 You crash or feel worse because there was no objective improvement in your underlying health problems so no capacity to increase activity

This is also a problem with some/most supplements in my experience, for a few days/weeks/months the results seem good and lead to increased activity, then the inevitable crash, or at least slump.

It probably also applies to a lot of treatments as well.

 

[brenda]

Just to be clear - I am not claiming that homeopathy cures ME. In fact I doubt it - it is too multi layered for a magic cure. But it has cured me of cystitis, in a way that cannot be put down to the natural process of healing. It went in a matter of hours after many days of agony. I took one pill and hour till it eased off and soon it was gone entirely. So I would consider it for certain problems like this. I might give it another go soon for some symptom I develop.

 

[erin]

You hadn't slept for a week. Then after a meal at a friend's house you felt sleepy and slept all night.

No, It was not what I was trying to describe.

Maybe I'm not very articulate, sorry about this. Non-native English speaker and brain fog is my excuse. I needed to add more background I guess...

I had severe sleeping problems since, well, since I know myself at that point in my life. I maybe had very little sleep at nights. Maximum I used to sleep for 4 hours maybe. If that...

There were nights just couple of hours sleep all I'd have. I tried prescribed sleeping medicine (by GP) at the time with no success.

That week I mentioned in the post above 1 week no sleep AT ALL! I mean not even an hour. One of my eye lid closed, I could not speak well. I was like a zombie that week and my friend insisted for this reason.

So I had this homeopathic remedy that night at a friend's house (dinner is maybe not that relevant). It was maybe 10 pm and I never used to go to sleep at 10. I had to rush back home because I started to sleep there.

After this event I never have insomnia.

This is what happened.

 

[Wonko]

I've suffered from insomnia since my mid teens, only I didn't think it was a problem then, it only became a problem about 15-20 years ago. About 2 years ago I had 5-6 months where I couldn't sleep at all, add untreated neuropathic pain and a few other things to insomnia and that's what happens. I was probably diagnosably insane, but as I never went out and interacted with anyone this largely went unnoticed by the world.

So I have some understanding, and I do understand why you would feel the way you do.

That doesn't mean I agree with your conclusions, but I understand how/why you arrived at them.

 

[TiredSam]

No, It was not what I was trying to describe.

Maybe I'm not very articulate, sorry about this. Non-native English speaker and brain fog is my excuse. I needed to add more background I guess...

I had severe sleeping problems since, well, since I know myself at that point in my life. I maybe had very little sleep at nights. Maximum I used to sleep for 4 hours maybe. If that...

There were nights just couple of hours sleep all I'd have. I tried prescribed sleeping medicine (by GP) at the time with no success.

That week I mentioned in the post above 1 week no sleep AT ALL! I mean not even an hour. One of my eye lid closed, I could not speak well. I was like a zombie that week and my friend insisted for this reason.

So I had this homeopathic remedy that night at a friend's house (dinner is maybe not that relevant). It was maybe 10 pm and I never used to go to sleep at 10. I had to rush back home because I started to sleep there.

After this event I never have insomnia.

This is what happened.

Ok, I wasn't doubting what happened and I know it's not easiest described in writing on an internet forum.

Do you have any thoughts on how/why the homeopathy worked?

A common answer I hear is "it just did, so I believe in it", but I'm afraid I'm a little more inquisitive than that. The answer given by homeopathists (water memory etc) makes no sense at all, which is why homeopathy comes in for such ridicule. If homeopathists said "we don't know how it works, it just does if you believe it" that would be one thing, but to make up some sciencey sounding nonsense that anyone can see through as such is just insulting. Why do they do that, and why don't you care?

Thanks for posting by the way.

 

[erin]

There is also the distinct possibility in this unregulated field that what you were given was not what it was claimed to be. Although there is literally nothing in true homeopathic remedies, there have been cases where bottles have been tested and found to contain all manner of substances.

She actually claimed no information. I found this very creepy at first. This middle aged quite cold mannered lady just knelt down and opened a drawer full of stuff and she said "take these....".

But it worked, and it worked for good. So I do not at all feel creepy about it now. I was very surprised myself that it worked.

After this experience I had NHS treatments in a brilliant homeopathic hospital by doctor who trained medicine, everything was clearly labelled in the homeopathic dispensary. Most of the remedies worked really well. I can tell two did not worked comfortably, they made no difference.

One remedy had a huge difference on me was ozonium. This was very effective with my brain fog. Others I benefited were, sepia, arsenic, thuja and (goodness more fun to some members) raven. When I was on those remedies I did well. I mean I would go with a complaint, or there were sudden problems arose I asked for telephone consultations and given remedies try to fix the problems. I used many many remedies, I can not remember them all naturally.

 

[Mrs Sowester]

(dinner is maybe not that relevant).

It might have been, if you were given a cooked meal by someone who was taking care of you.
A hot meal can make you feel sleepy. A kind friend can take your mind off the pressure of trying to sleep.

I've found my hormonal cycle can have a tremendous impact on my sleep initiation, the week before a period is really difficult, period arrives so does sleep. The right hormone kicks in and its like a switch is flipped.

 

[erin]

Ok, I wasn't doubting what happened and I know it's not easiest described in writing on an internet forum.

Do you have any thoughts on how/why the homeopathy worked?

A common answer I hear is "it just did, so I believe in it", but I'm afraid I'm a little more inquisitive than that. The answer given by homeopathists (water memory etc) makes no sense at all, which is why homeopathy comes in for such ridicule. If homeopathists said "we don't know how it works, it just does if you believe it" that would be one thing, but to make up some sciencey sounding nonsense that anyone can see through as such is just insulting. Why do they do that, and why don't you care?
Thanks for posting by the way.

I have no idea how/why it worked. I was not suffering from ME at the time. I was young, at the art school, had many parties to attend and have fun with my life. Feel quite sad actually remembering those days that I never had a major health problem to think and spend time about. So this is gonna sound a bit silly but I never wondered about it. I was happy to be able to sleep. Though it made a huge difference to my life, like one member mentioned above I did not even think it was that important to sleep that much, until that horrid week. And after this I just got on with my life, I had other stuff to deal with.

After ME diagnosis, and the explanation that the medical establishment has no idea about if from my GP I was diverted to homeopathic hospital. Many of the remedies were working. I never thought of asking why, because they were working. I was not interested in sciencetical explanations about it. After all "proper" medicine had no explanation or knowledge about ME.

Later on, finding out about ME from others, mostly friends or friends of friends I realized how debilitating this is, and is going to be. I was on a long journey. Then I started to question everything. I question mainstream science and medicine as well as homeopathy. To be honest with, none of them makes sense to me.

I don't believe many medicine I am prescribed either. I can comfortably say I don't believe in science.
I don't believe in anything, science, religion, whatever you name it.

I find it hard to believe in water memory theory either.

I cruise along and try everything with my instincts.

This is very difficult and a very organic process. If I have a bad feeling about something I resist to take up on it.

Homeopathy felt OK by my instinct.

Levothyroxine and TSH does not. The theory behind measuring TSH sounds very quackery to me. But mainstream science recognizes it. So I MUST believe?

Therefore, I am forced to take this lactose ridden pill every morning makes me feel worse. Though when I asked my homeopath, who is a doctor of medicine as well, she said I have to take this horrid pill, there is no homeopathic remedy can replace thyroxine hormone.

 

[erin]

It might have been, if you were given a cooked meal by someone who was taking care of you.
A hot meal can make you feel sleepy. A kind friend can take your mind off the pressure of trying to sleep.

I've found my hormonal cycle can have a tremendous impact on my sleep initiation, the week before a period is really difficult, period arrives so does sleep. The right hormone kicks in and its like a switch is flipped.

I explained about it a bit better above, the "relevance" is about the description about the sequencing the event. This was not a mere I had a bad sleeping week and able to sleep after dinner. What I was trying to say I was not at my house, I had to leave friend's house and had to go home and sleep asap.

Shall we discuss the science behind why hot meal cooked by someone who take care of me cures my insomnia? Sorry about being cheeky. I don't remember this friend much and the meal, it may not even be hot. It was not the good friend who suggested the homeopathic treatment. Maybe you assumed that?

 

[Wonko]

..... there is no homeopathic remedy can replace thyroxine hormone.

Whilst that may or may not be true there are other sources of thyroid hormones, "natural" not "chemical" sources, such as natural desiccated thyroid (NDT), made from erm......dried bovine or porcine thyroid glands, generally free range organic animals.

These were used, by people, for a long time before more profitable patentable pharmaceutical products were developed.

The downside with them is the dosage can vary by a few percent between batches, this is the stated reason why they fell out of favour with GP's and it's got nothing whatsoever to do with all the money - honest.

The dosage on pharmaceutical thyroid drugs has also been known to vary by quite a bit but generally they don't bother to mention that in their dismissive approach to NDT.

Not saying you should try NDT, just saying your homeopathic doctor wasn't giving you complete information. It may be worth discussing with them if you object to the pharma version that much.

 

[erin]

Whilst that may or may not be true there are other sources of thyroid hormones, "natural" not "chemical" sources, such as natural desiccated thyroid (NDT), made from erm......dried bovine or porcine thyroid glands, generally free range organic animals.

These were used, by people, for a long time before more profitable patentable pharmaceutical products were developed.

The downside with them is the dosage can vary by a few percent between batches, this is the stated reason why they fell out of favour with GP's and it's got nothing whatsoever to do with all the money - honest.

The dosage on pharmaceutical thyroid drugs has also been known to vary by quite a bit but generally they don't bother to mention that in their dismissive approach to NDT.

Not saying you should try NDT, just saying your homeopathic doctor wasn't giving you complete information. It may be worth discussing with them if you object to the pharma version that much.

I am aware of NDT, it is difficult to get it where I am at the moment.
It was difficult to get it on NHS in UK too. Because mainstream science thinks NDT is an old fashioned silly thing! I would like ti use better and cleverer words for the last sentence. But I'm a bit tired today.

I also don't want to divert the subject from homeopathy fun thing!

 

[erin]

Guys, I would like to add here again that the homeopathic treatment I was given (and benefited from) was completely FREE!

It was supplied by the NHS of UK at the time when my wonderful GP said "ME" and "I don't know!", this was in 2008.

Unfortunately, this service is or may not be available now.

To me these are important points considering the argument.

 

[Wonko]

I am aware of NDT, it is difficult to get it where I am at the moment.
It was difficult to get it on NHS in UK too. Because mainstream science thinks NDT is an old fashioned silly thing! I would like ti use better and cleverer words for the last sentence. But I'm a bit tired today.

I also don't want to divert the subject from homeopathy fun thing!

If you can tolerate the fillers (generally kelp to provide thyroid "friendly" helpers/co-factors/minerals) then NDT can be bought from bigvits, sometimes even amazon or ebay - I have used "Raw Thyroid" with some success in the past, there are several other brands which are basically the same thing. Unfortunately (?) NDT does seem to always come with these fillers, at least that I've seen.

 

[Jenny TipsforME]

This is also a problem with some/most supplements in my experience

Oh yes could apply to anything if you attach some sort of belief that it may help you. Of course placebo also applies to treatments which genuinely work, it's just that then there's a therapeutic effect on top of the placebo effect.

I do genuinely believe that some nutritional supplements help us, at least individually. We can have deficiencies, and supplements can help biochemical processes even if we're not technically deficient.

I also think that we can waste £££ if we don't individually make some attempt at measuring what works for us and what doesn't. You can even create home placebos, though it's tricky.

Things I've tried are the ME/CFS Assistant app (record symptoms and what you take and it gives graphs and notices trends). This might be closed to new people.

Mendus is also a great Citizen Science resource, started by a neuroscientist who has CFS. http://www.mendus.org/

But it has cured me of cystitis,

I think some communication breakdown may occur in these discussions due to using different definitions of words. I don't think you can say that you know it 'cured' your cystitis. What you know is you took a tablet and then the thing that happened afterwards is that you felt better. It is reasonable to ask if there's another explanation.

Did you know it was an infection for example? I often get an irritable bladder which can seem similar but comes and goes (BTW I take pumpkin seed capsules for this, I'm fairly convinced they help but I'd also accept this could be coincidence or placebo).

Helpful viewing on this is Lecture 3 on the Calling Bullshit course

I think 3.3 is most relevant

Everyone (well enough) who has ME should watch this lecture series IMHO
Their website is http://callingbullshit.org/index.html

I'm up to lecture 5 and intend my September blog post to be about this (cognitive energy permitting).

 

[wdb]

Guys, I would like to add here again that the homeopathic treatment I was given (and benefited from) was completely FREE!

It was supplied by the NHS of UK at the time when my wonderful GP said "ME" and "I don't know!", this was in 2008.

Unfortunately, this service is or may not be available now.

To me these are important points considering the argument.

I'm curious why that you got it free is an important point, I'm glad you didn't lose any money but someone paid for it ? I suspect most GPs have no expectation of it having any effect beyond placebo but prescribe it anyway as it doesn't cost very much, makes the recipient satisfied that they got a treatment and keeps them away for a few weeks.

Current NHS position:
NHS set to ban homeopathy for patients because it is 'not evidence based and any benefits are down to placebo'

Doctors should stop prescribing homeopathic medicine to NHS patients, the health service has said. The change has been proposed because "at best, homeopathy is a placebo and a misuse of scarce NHS funds which could better be devoted to treatments that work", said Simon Stevens, NHS England's chief executive.

 

[svetoslav80]

Just to be clear - I am not claiming that homeopathy cures ME. In fact I doubt it - it is too multi layered for a magic cure. But it has cured me of cystitis, in a way that cannot be put down to the natural process of healing. It went in a matter of hours after many days of agony. I took one pill and hour till it eased off and soon it was gone entirely.

From wikipedia: about 50% of uncomplicated UTIs will recover without treatment within a few days or weeks.
But you're so sure it was the piece of sugar you took that healed you.

 

[TigerLilea]

If you read the FDA site you find that many "herbal Viagra" and similar remedies contain actual Viagra when tested. And that muscle building concoctions contain steroids.

There have been several herbal supplements over the years that have been found to contain ground up pharmaceutical medications. If I remember correctly a lot of these came from China.