The Placebo Experiment: Did anyone see the Horizon... - PMRGCAuk

PMRGCAuk

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The Placebo Experiment

peace_lover profile image

Did anyone see the Horizon programme on BBC2 last night?Very interesting.

The point I wish to make (with more than a little tongue in cheek) is that Dr Mosley said at the end that we should all take our medicine believing that it will do us good.

So, next time you take your Pred repeat after me:

“This WILL make me better, this WILL make me better, this will MAKE me better...”

You must say it three times or the pills will disappear in a puff of steroid smoke. Yes of course I’m 🤥 lying. Whether this works with the bisphosphonates I really doubt... 🤔

67 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Just to cheer you up - they DO make you better - got the T-shirt!

Now if I could just find some magic ones for other ailments!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Suppose it depends on what you call "better" - to some extent they are preventative management...

Wraysbury profile image
Wraysbury in reply to DorsetLady

And the side effects

Hi

Yes it was very intreating

At the end of the day it comes to having a positive attitude

Which thay did as believed the new medication would make them better and for some it did

You can do this for many things without the intermediary of medicine or placebo. Just projecting healing thoughts towards an injured part or a casual ache or pain such as many of us elders are prone to can seem to speed up the healing. Breathe deeply a couple of times, exhaling fully. Then breathe in and hold the breath, thinking while you do that the place you want healed is receiving health from the breath - project the healing towards the hurt place. Then breathe out, I always breathe in through my nose and out through my mouth, and as you breathe out imagine the toxins exiting. Do this a few times. I always do it outdoors beside the harbour where I live. I expect a forest or a garden or some other reasonably peaceful clean outside space would be good, but if you know the air in your house is fresh and not full of chemicals off gassing from furniture or cleaning products, etc., then by all means try it inside as well.

That is lovely Heron. I think just being in Nova Scotia would heal me.

No it wouldn't. Over the years since the introduction of medicare I venture to say that our health care system has gone from second to none for the average patient to a disaster for many. Nearly a tenth of us now have no one to call "family doctor" and have to resort to going to overloaded emergency departments or walk in clinics which keep no records so if tests are called for there's nowhere to send the results. And the people in charge, well words fail sometimes. A young doctor recently left our fair province for improved work conditions in one nearby and even smaller. Her work week was always at least 80 hours a week. When the local authority was questioned about this his response was perhaps she wasn't the right person for the job. Now who would be the right person for the job? Could you trust the judgement of someone who was consistently working flat out nearly twice a normal modern work week? And I believe these family doctors are still the lowest paid in the country.

That being said, I do like where I live and I am very very grateful I have a reasonably competent and kind family doctor

Crikey, that is even worse than the cash strapped NHS.

I meant Nova Scotia for its wide open spaces, architecture, proximity to the sea, the sheer picturesque image I have of it in my head. Please tell me that you live in a pretty place.

I live on the other side of this harbour (not in the building where the webcam is). About an hour ago we watched the Queen Mary 2 leaving, a view (Halifax Waterfront) we will have from our condo, but can't quite see from the house we live in now.

novascotiawebcams.com/en/we...

You clearly do live in a pretty place with plenty of interest. It’s on my bucket list. Thanks for posting. I love imagining you all in your settings around the world.

CT-5012 profile image
CT-5012 in reply to HeronNS

Many thanks for the webcam a lovely reminder of a few days in Halifax at the start of a holiday in Canada. 😊

Telian profile image
Telian in reply to HeronNS

Lovely..

yogabonnie profile image
yogabonnie in reply to HeronNS

oh I love that web cam! I also look at one on an Eagles nest and one in Puerta Vallarta!

Suet3942 profile image
Suet3942 in reply to HeronNS

Blimey. We thought the uk was bad but......!!

HeronNS profile image
HeronNS in reply to Suet3942

Here health care gets a lot of funding from the federal gov but each province is responsible for how they organize things. I think this is unfortunate and is likely the main reason we've never been able to get a proper pharmacare program in place. It also makes it very much harder for a small province like Nova Scotia which doesn't have massive land and resources, a small population, and in fact the oldest population in the country where as we all know well people need more health care, but we are being funded per capita, not according to actual needs, thanks to an earlier gov which loved Alberta. Alberta with the changes to the funding formula got an amount more which was fairly close to the amount Nova Scotia lost. Ironically many of the workers in the oil patch are from the Maritimes, and our young people keep leaving to find jobs which is the main reason our demographics are so skewed. I've lost my daughter and her partner to Ontario. :(

Suet3942 profile image
Suet3942 in reply to HeronNS

That is not a fair way to distribute funds. Don’t think our nhs will last many more years though. Too many people in the country.

HeronNS profile image
HeronNS in reply to Suet3942

Number of people shouldn't matter because then there are more people paying into the tax coffers. The problem is the distribution of wealth.. Far more should be spent on the common good, via our taxes and wise governance, and far less lining the pockets of the super rich who now have so much money they have to spend it on things like buying up properties all over the world and awfulizing our cities and other communities. Rant for the day over now!

PMRpro profile image
PMRproAmbassador in reply to HeronNS

I'll join you on your soapbox though!!!!

My sister suggested I give up steroids and take sugar pills!

HeronNS profile image
HeronNS in reply to piglette

Would they work, do you think, if you didn't know they'd been subsitituted?

I did read once about a man who was healed of cancer in a similar way. The trouble is there then came out a report "proving" the method used didn't really work and he relapsed because he'd lost his faith. There was more to the story than that but it was an interesting case study.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Clinical trials include a placebo arm in some cases...

HeronNS profile image
HeronNS in reply to PMRpro

Don't they often find that things like antidepressants don't even work as well as the placebo? And I read a few years ago that they'd somehow discovered that people recovered as well from a particular knee operation even if only a fake operation was performed.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Such things do happen yes. Usually though if the responses are less good than placebo it doesn't augur well for gaining approval from the authorities!

HeronNS profile image
HeronNS in reply to PMRpro

As long as those results are included in the submission. Isn't it a problem that negative results are sometimes omitted?

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Probably...

scats profile image
scats in reply to HeronNS

They showed something similar on the programme last night. It was a shoulder op. Everyone was prepped for the op and the surgeon entered all shoulders but only then found whether or not he was to remove a bit of bone. It appeared to make no difference to people's recovery. Perhaps just entering the joint was enough to make a difference.

I knew about placebos. What I found interesting was that those who responded to the placebo were more likely to if they had more empathy and extra time from their doctor!

Now that is something our hard pressed GPs are going to find difficult.

HeronNS profile image
HeronNS in reply to scats

Did the time and empathy also help the real medication? I'm sure people will get better faster from anything, or die in less distress if they are going to die, if they are surrounded by caregivers who actually show they care.

scats profile image
scats in reply to HeronNS

They didn't say but I'm sure you're right.

powerwalk profile image
powerwalk in reply to HeronNS

Care - that would be nice. I'm not saying that flippantly. My GP is so cold I feel I need to apologise for bothering her. It's not nice at all.

HeronNS profile image
HeronNS in reply to powerwalk

:(

PMRpro profile image
PMRproAmbassador in reply to scats

That is felt to be at least part of the success of complementary therapies - the relationship with the therapist and the time devoted to the patient.

scats profile image
scats in reply to PMRpro

And that's where we all fall short most of the time, until we find this forum!

piglette profile image
piglette in reply to HeronNS

I know they did a trial with acupuncture and had pretend needles which worked just as well as the real thing.

PMRpro profile image
PMRproAmbassador in reply to piglette

But weren't the placebo ones positioned differently? Not on meridians, just randomly?

Doctors here do something called needling using a hypodermic syringe and sometimes saline, sometimes lignocaine, injected subcutaneously. Obviously you would expect the lignocaine to soothe sore muscles but which they use doesn't make a difference for me - saline also works. The idea is to stimulate the muscle to heal itself and relax and it does work. It is excruciatingly painful as it is being done - but the subsequent rellief means most patients ask for it to be done again!

So the placebo needles may be doing something like that - and there is a tecnique called intramuscular stimulation which might parallel it.

piglette profile image
piglette in reply to piglette

I know the one I read about had ‘needles’ that had a bit that pushed down in the middle but never entered the skin, so sounded pretty ineffectual. I thought they were in the correct place but who knows! It did work though for the some people. I had cupping which was pretty unpleasant and did not work, that probably should do something. Perhaps I am the opposite of the placebo effect, the real thing does not work.

HeronNS profile image
HeronNS in reply to piglette

I have received something called "dry needling" which uses no solutions at all but really does to something to the muscles - you can feel it! Sometimes it feels like a finger being pressed into your flesh, right in, not just pressure on the surface, sometimes just very painful as you'd expect a needle to feel, other times something in between. It's definitely not the same as the virtually painless acupuncture I had years ago.

piglette profile image
piglette in reply to HeronNS

I think a physio I had offered dry needling. I did not try it though.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Some here do it using fingers/thumbs, difficult to explain. But when they catch the right point - you feel it!!!! And it works...

HeronNS profile image
HeronNS in reply to PMRpro

My physiotherapist hasn't done the dry needling since the beginning of my time with her, but a while ago she did something which felt really strange and I asked her what was going on and she said it was instead of the needling. Yes, I did feel it!

piglette profile image
piglette in reply to HeronNS

It would be interesting to know.

in reply to piglette

Did you reply?.........

scats profile image
scats in reply to

.....and would you be able to print here?

in reply to piglette

Have you ever got on!!!

piglette profile image
piglette in reply to

Not yet.

in reply to piglette

Bothered about that!!

piglette profile image
piglette in reply to

We spend a lot of time teasing each other!

in reply to piglette

Lovely

I must admit the prednisolone really did make me feel much better after my initial diagnosis of PMR. ,most of the pain was gone within 48 hours.

Wraysbury profile image
Wraysbury in reply to Grants148

Yes and me

Marijo1951 profile image
Marijo1951 in reply to Grants148

I felt all my pain draining out of me within a few hours of taking my first dose of pred, and I haven't had any severe pain since. I wish the same could be said of the crippling fatigue.

piglette profile image
piglette in reply to Marijo1951

Perhaps we should offer a sugar tablet for fatigue, I wonder if it would work for anyone!!

Placebos are only that - ie. 'placebos' for which the 'evidence' says they will help 'some people' feel a bit better ...

piglette profile image
piglette in reply to Rimmy

As they say 'it is all in the mind'!

Rimmy profile image
Rimmy in reply to piglette

Yes - you can't 'separate' mind and body ....

Just to prove I am not barking (or even meowing!) mad, no comments required... 🙂

My last comment about the bisphosphonates was prompted by a comment a lady made at my local support group a couple of weeks ago. Several people were on alendronic acid and all hated taking it. One lady told me she had a mental and physical aversion to the act of taking each weekly tablet, something I can empathise with as I feel the same. I have currently stopped, as I need to sort out which side effects are caused by which drug - but that’s another tale.

It occurred to me that having a positive mental attitude to a drug might help (I actually hate that expression but can’t think of another). But then, there were no side effects to be experienced with the placebo, although some patients thought they had experienced one or two. So - the question is - does knowing that there are likely to be serious side effects from a drug affect our attitude to it and thus our physical response to it?

Answers on a postcard, or more likely a PHD thesis. I think there is a lot more research required. But the answers could have the potential to affect mental health research in general.

I think I need to go to bed now. 😉

I took AA for a couple of weeks but the effects were so dire, I stopped. I was offered the intravenous infusion but was horrified at the idea. I'm now officially on a weekly dose of risendronate sodium, and it certainly doesn't have the immediate horrible side effects of AA, but I feel a strong physical and mental aversion to putting it in my body. I haven't seen the programme but will watch it on the iPlayer today.

I took 2 AA tablets. Hated the burning in my oesophagus. Stopped and told GP I would not take more till a Dexascan proved I needed it. Dexascan a couple of months later showed extra strong bones. So no AA for me. This was early PMR days. Now, 3 years later, I would refuse before I took first tablet. Does this prove I am a more aware patient? I am certainly better at advocating for myself with medics. Before PMR I had very little contact with GP and accepted their words as law!

All the best Valerie

I won't take AA either. and I do have osteoporosis. There are other ways. The LAST thing I need is esophageal problems. and now that I have read all these comments the fact I BELIEVE AA will give me something terrible... it might! Placebo must work both ways!

That’s sort of what I was thinking, but it seems to apply to the bisphosphonates because most people do their research before taking (or not) .I knew little about Pred before it took it, but was in such a state I would have taken almost anything - and although 15mg didn’t work, an increased dose did and I felt the physical effect almost immediately.

But with osteoporosis we seldom have any physical symptoms, so there is no potential for immediate relief - so is that why so many people seem to have a real physical and mental aversion to taking them? Or is it that the instructions for taking the tablets alone are enough to frighten folk off!?

good point! I think in truth that some Medications simply work! I had FULL believe that tylenol and ibuprofen would take away the muscle ache I was feeling and it didn't go away until I got that prednisone... which I didn't understand at all..except that it had helped my sons asthma ..and I did not have that!

I saw the program but I think all it proved that there are people out there that a sugar tablet may help but also that the ones that it didn’t help were genuinely illl and needed the real thing which I think many of us know already

I must admit that reading the possible side effects of prednisolone scared me so much that when l had a bad asthma attack and was given the Pred,on a prescription,l managed to not take any,having had treatment from the out of hours doctor l managed to just use my inhalers and was OK.This was pre PMR,and little did l know that l would have to take it for a long time,and l am very grateful for it now.l do think that placebo’s can sometimes work but it obviously depends on the condition. I have always been cautious of drugs and do not even take paracetamol unless l really have to .

Well presumably our brains are responsible for turning on this condition so maybe we could tap into out brains and get them to turn it off again. If only we knew how!!!

HeronNS profile image
HeronNS in reply to Omanain

I think there is some evidence that some conditions can be affected this way. I remember years ago thinking that I was teaching myself how to have headaches, so I consciously did what I could to avoid that kind of thought and although I am still headache prone it was never the same problem again after that time. Also a cousin of mine claims she had (has) fibromyalgia but upon learning that it had something to do with perception of pain appears to have taught herself not to feel that pain any more. It had been so bad she even had her bathroom remodelled so she didn't need to get in and out of a tub, so I am awestruck.

peace_lover profile image
peace_lover in reply to HeronNS

And then there is this dangerously close line between what medics consider “all in the mind” i.e. psychosomatic and symptoms which might be kept under control by the mind. My late Mum has severe backache for years. Unfortunately she was also a bit of a hypochondriac so it was always difficult to tell exactly what was what. One doctor labelled her backache as psychosomatic and that label went with her to the grave. A dentist even refused to have her as a patient! Not long before she died (of a cardiac tamponade) she was diagnosed with osteoporosis, which probably explained her curvature of the spine, and probably the pain (compression fractures? we will never know).

I find this really quite exciting. Of course the first thing is to absolutely reassure patients that this has nothing to do with the old idea of ' it's all in the mind' as in you are imagining it, that it's not real in some way. Surely psychosomatic means something that has started in the mind and is present in the body. Present in the form of very real pain and disease. We all know the very real problems stress causes.

Finding a way to connect with the brain so that it will release painkilling endorphins and other healing processes MUST be worth a try and where the funding would come from for the research is anybodies guess. Break big pharma of course, but could save the NHS. After all some of the people in that programme had their lives really turned around and it continued even once they knew they were taking a placebo. A DRUG with such a success rate would be marketed a 'wonder' cure I expect.

One word for him and all who pass judgement without being in our place. But I’m too polite to write it.

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