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Is false hope better or worse than no hope

Hi all Here’s a purely rhetorical question. I have just watched the Panorama programme called selling hope. And it got me to thinking…is false hope better than no hope? Whether or not you believe in what the doctor concerned is peddling, he offers hope to desperate families and from what a few if them said, their children survived longer than expected. Is this because the hope offered positivity which has an effect on your health ? In which case does hope act as a placebo ? An interesting programme from this perspective and gas certainly whirred my cogs into turning !!

I really don’t know I’ve wondered this before if it gives comfort etc is it a bad thing but then so often the people peddling charge such a lot that people can’t pay and may cause other problems. Btw love your pic people always ask me how I can fall over flat surfaces X

Hi H,I don’t think anybody complained about the weather today,well not much as there wasn’t loads of global warming falling out of the sky and it was pleasantly warm.Tomorrow it will be too hot for too many people.

I didn’t see the programme but know something about it and I wonder if giving the parents some hope would give them strength to be stronger. Oh,your question,if applied to us, we can have a faith in something.I believe in CCSVI,I spent £1100 on an MR Venogram in Frankfurt and it was the final proof we needed that the theory applies to me and explains some things that have gone on for 6-7 years

I was a couple of days away from booking the Liberation in Bruges and discovered that the US FDA had forced many clinics in Europe to close.Good of them…LOL. The whole deal would have been £6K.The powerchair I’m getting through Motability will cost me £7.5K over three years.Maybe I wouldn’t need it,but we’ll never know.The FDA stole my freedom of choice and owe me £1500. My hope is that I come across £40K and my friend will get me to to California to have it done there.'Cos we all have our own version of MS I defy anybody to prove to me before I get there that it will have no effect.It cannot be done and in three years no medic has looked at the scan which is in my Casenote.

This is a very slim chance,and I live in this oh too real world, but the NHS have left me with a selection of ‘non-exotic drugs’ and told me to play pick’n’mix to try and mitigate the worsening pain for the rest of my life with no help barring my annual 15 minutes of fame.Oh, some psychologists are going to discuss CBT with me even though I can find no evidence of this helping with Neuropathetic Pain.The Consultant at the Pain Clinic thought he’d better be seen to be doing something that couldn’t possibly be a bad statistical outcome on his profession.

Enough already,but thanks H for causing me some distraction.I am an ardent pragmatist,but life with no possible hope is a bleak place and a little tiny light is better than total darkness.I can guarantee when we get there the San Andreas fault will open and the clinic will slip into it,closely followed by me waving a reservation number.

Be lucky,

Wb xx

I’ve always told people… " I’m a firm beleiver in mind over matter". I actually said this to my neuro, and she said " oh so am I " . She also said its one of the best things for ms and such.

I don’t have a problem with positive thinking and people trying different things. But what does bother me is the price tag for things that there is no evidence to back up the claims of a cure or improvement.

People bankrupt themselves on unproven claims. If I’d all the money in the world I’d try everything going though.

I just wouldn’t put myself under financial pressure to do so because stress doesn’t help anything.

Good question C.

The normal psychological state of healthy individuals is to believe that nothing bad is going to happen to them. This optimism is an adaptive way of thinking that promotes good mental and physical health. So, in healthy people, normality is like a sort of blind hope - an expectation that they will be OK. When we are hit with the fact that, actually, the likelihood is that we are NOT going to be OK, that rose-tinted view gets stripped away. Over time (ie after diagnosis), most of us move back into a sort of modified form of denial so that we accept that things might get worse, but secretly hope that we’ll be one of the lucky ones; we’ll be OK. Every time something gets appreciably worse or we have a new relapse, that denial is ripped apart and we have to face the truth again. But gradually we get used to our new normality and the semi-denial sets in again: we had a set back, but we’ll be OK now. It’s not the same as healthy people, but this is our form of optimism - rose-tinted, but with black around the edges.

For those of us who manage to maintain our semi-denial, it is usually enough. But some people aren’t so lucky, either because their MS is more aggressive or because they have symptoms that are too much to cope with and for which there isn’t sufficient help or simply because they can’t accept that they will ever cope with what might come. Unfortunately, the search for hope drives some of these people right into the path of charlatans who take full advantage, ripping off those who will try just about anything in their desperation. We’ve seen it again and again over the years and it never fails to disgust me that anyone could do that to a fellow human being :frowning:

So, is hope good for us? Yes: if nothing else, it definitely supports better mental health and probably leads to better physical health, if only via a placebo effect.

Is false hope good for us? It depends. If you look at it in the short term, then yes. The above benefits apply. If you look at it in the longer term, when reality crashes in on us and we realise that 1) we’ve been taken in, 2) we’ve wasted a lot of money on something, 3) we’ve lost the opportunity to do something else (e.g. all too often people reject their neuro’s advice and go their own way, only to miss their chance at DMDs) and/or 4) it was never going to work, then no. That’s never going to be good for someone.

Perhaps the fall out is lessened when it’s the kind of false hope that springs from discovering an “expert” who genuinely believes that they have found the answer? Or from buying into a load of personal, anecdotal stories that something is the best thing since sliced bread? Then at least it’s not our fault that it didn’t work out: “We gave it a shot. It’s a shame it didn’t pan out.” rather than “What a bloody fool I am.” Much better, psychologically. I still think it’s foolish because science is my first and last measure of everything to do with MS, but I can understand why people do it, especially when there are no other options. In fact, if I had no other options, I’d probably be doing it too.

Karen x

It is an interesting question and seems to have so many answers. Personally i like to have facts and respond well to them, i can go off do my own resarch and come to my own conclusions. I would struggle to put myself forward for any treatment/procedure purely based on anecdotal evidence…that being said i have children and i’m pretty sure that god forbid i was ever in a desperate situation concerning their health, i would be prepared to do anything if there was nowhere else to turn and nothing was to be lost from trying i would choose the false hope for them over no hope everytime. In my own case i like to think i would be more pragmatic, but the fear of mortality is powerful.

Laura x

It is an interesting question and seems to have so many answers. Personally i like to have facts and respond well to them, i can go off do my own resarch and come to my own conclusions. I would struggle to put myself forward for any treatment/procedure purely based on anecdotal evidence…that being said i have children and i’m pretty sure that god forbid i was ever in a desperate situation concerning their health, i would be prepared to do anything if there was nowhere else to turn and nothing was to be lost from trying i would choose the false hope for them over no hope everytime. In my own case i like to think i would be more pragmatic, but the fear of mortality is powerful.

Laura x

It is an interesting question and seems to have so many answers. Personally i like to have facts and respond well to them, i can go off do my own resarch and come to my own conclusions. I would struggle to put myself forward for any treatment/procedure purely based on anecdotal evidence…that being said i have children and i’m pretty sure that god forbid i was ever in a desperate situation concerning their health, i would be prepared to do anything if there was nowhere else to turn and nothing was to be lost from trying i would choose the false hope for them over no hope everytime. In my own case i like to think i would be more pragmatic, but the fear of mortality is powerful.

Laura x

Hi, I guess Laura feels strongly about this post, as she has replied 3 times!

Sorry laura, I know it will have happened by itself, due to a computer blip…I`m only teasing!

Yeh, it is certainly an interesting thread. With many interesting replies.

I guess some folk would call me over-optimistic. I do get excited about possible things to help me in my disability. Then if/when they go wrong, I get very upset or annoyed.

But these feelings are my way of dealing with disappointment and I always bounce back…as many of you here have seen.

I do think a hopeful positive attitude gives us good vibes. but if some charlatan exhorts money out of sick and vulnerable people, by selling them something which has no beneficial effects, then that is surely sinful and sadistic.

luv Pollx

Most of conveniently forget most of the time that we are all going to die, and a good thing too or everyone would just give up in despair, and that would be a pity, because there is plenty of fun to be had in the meantime and it would be a shame to miss it. So selectively ignoring things that one can do nothing about is an important life skill, and the same sort of thing can come in handy when dealing with life’s other bummers like major illness etc, I suppose.

Taking a creative approach to hope is the same sort of process, perhaps. I guess we all have an instinct for knowing what we need and the best way of keeping our show on the road. Whatever kind of hope gets you through will do, I guess, as long as you can avoid being suckered by people peddling the false sort.

Alison

I believe I will win the National Lotteery one day otherwise I wouldn’t do it! I think a treatment for m.s. will appear in the not too distant future. I believe I will have a good day to-morrow. Realistically I know the odds on my winning the Lottery are miniscule. Realistically I know that a treatment is along way off. Having had a crap few weeks the odds are against my having a good day tomorrow. And so I live with this slightly schizophrenic mind-set – mis-placed optimism is better than no optimism at all.