How to politely decline helpful miracle treatment suggestions

Everyday living
21

Well, it’s not my relationship, and perhaps my unwillingness to compromise is why I’ve never been terribly good at them, but personally, I wouldn’t even have offered a compromise about taking something obnoxious I had no faith in - even in the hope I could bin it while he’s not watching. To me, the latter’s worse, because I’d be forced into a deception, instead of just saying: “Look, I’m not taking it, and that’s that!” I hate having to lie, so I’d prefer to be honest, and say: “I’m not doing it”, even at the risk of annoying him.

Somebody will find the answer one day, but the chances of it being an amateur experimenting at home are negligible, in my view.

For a start, how would you ever know if it had worked? We all know MS is a fluctuating and unpredictable disease. So you take the mushroom gunk, and a year down the line, hopefully, you’re doing well. Is that proof of success? No! Because you can’t eliminate the chance (in my opinion, the certainty) you’d have done just as well without the mushroom gunk. That’s why mass trials are done. One person doing well after a year proves nothing, because they might have been someone like me who would still have done well after a year, despite doing nothing - that’s right, NOTHING about it. If all MS cases progressed in the same way, at the same rate, it would be relatively easy to see if something’s working or not. But it isn’t, because you can’t remove the element of chance - the chance that the person would have done well anyway.

Tina

x

4 Likes
22

I feel your pain! I have a few people who have read up on MS (parents, parents-in-common-law and my OH, who is inclined to bully people into things as well) and think they’re making helpful suggestions, so I smile politely and say ‘Thanks for that, I’ll look into it’. But I’m not exactly rushing to do any of it! My neuro and MS Nurse should know what the hell they’re talking about rather better than the Daily Fail does! “A lady at our church has it and she says that…” - NO, thank you! I’m on the drugs that I’m on, and am sticking to them. Nice of people to want to help, but I would really rather they didn’t…

1 Like
23

I would suggest you personally investigate anything he comes up with and decide if it has any credibility to you, because unless you do that you cannot possible ague one way or another . Unfortunately ‘miracle cures’ makes good headlines but I for one yet to find anything that deserves the title ‘cure’ for MS. There are however things like diet, LDN, CCSVI and probably many other options which some people find very helpful. You need to be aware that doctors working for the NHS are very tightly controlled as to what they can offer and we are getting very much to the point where you can not have say LDN because some PCT’s will not allow their doctors to offer it and you can not have the latest licenced drug because they will not fund it. So you can say have LDN (not licenced) on the NHS in some places and not others and you can have say Sativex (licenced) on the NHS in some places and not others. However at the end of the day you run the risk of any treatment you decide to have and risk loosing potential benefits of those you choose not to have, so to me you must make the decision on what treatments you accept or reject be that a suggestion from you most respected doctor, your husband or anyone else. These are far from easy decisions because nothing is risk free and nothing I am aware of works for everybody. In short Daily Mail ‘cures’ - be thankful they have told you about it but look very much deeper into it.

2 Likes
24

I have read this thread carefully and at the risk of offending our male readers this boils down to something men do to women.

Namely bullying wrapped up in a caring guise. If one person imposes their will upon another, riding rough shod over any objections it is just domination. I used to be married to a man who liked to use “rational” argument to get his own way. No matter what I had to say he had an answer. In the face of such determination it is very hard to be assertive. I feel for Janet because she is being overwhelmed.

For people looking in the answer is obvious but faced with a dominant will if you are not an assertive person it is very difficult to just say no. I have no suggestions that don’t involve world war three. I hate the idea that someone’s opinions are not being respected. I feel very strongly about this. One person making another do something that they don’t want to is just plain wrong

Jane

5 Likes
25

I’ve survived being told about ProKarin, The “Liberation” Treatment, Stem Cell Treatment and various other “Miracle Cures” from well-meaning friends and family. I just simply smile and let them know I’m happy with the treatments I have now.

26

There must be loads of people who go through this, and it won’t be limited to those with MS. Now I’m on the receiving end, I can understand how frustrating it is.

I think part of what makes it hard to really put my foot down (I’ve said ‘no thanks’, and that didn’t work), is that if/when I decline, he will be the one who has to do more to help. I really do think that he would always be thinking ‘if she’d taken those supplements I suggested she wouldn’t be this bad/this wouldn’t have happened’, and the blame would be put on me, even if he didn’t say that outright. In his head, these things work, and he simply can’t get past that. As has already been pointed out by Anitra, there is no way to prove what difference the supplement has made, so I’d never be able to prove that things wouldn’t have been different no matter what I did… Hope that makes sense!

I’m hoping this thread will help other people in the same situation. Perhaps other people can show their OH’s what’s been said, and perhaps they’ll understand where we’re coming from!

27

Janet, it can be tough for partners to accept or deal with the changes brought about by MS. As a man with a technical background I like to provide solutions or help to fix stuff. However as a man with MS and a caring wife who would give anything to make things better for me, I think I understand a little from both sides. I now have a neurologist and MS nurse whose knowledge and opinions which I trust and have confidence in so I can vet any “interesting / novel” “remedies or treatments”

I suggest that you tell your husband that he should trust your judgement and concentrate on being supportive, even if that is just giving you a hug when needed.

All the best

2 Likes
28

Out of interest, I looked up the mushroom, and there has been some evidence it stimulates remyelination and nerve growth - but only in ONE in vitro experiment each - i.e. in a test tube or petri dish. No trials of the same in humans, or even mice.

For me, this wouldn’t be enough to persuade me to take it, especially if it’s horrible. There are loads of things out there that have shown some promise in the lab, but they’re a long way from being developed and approved as medicines, and personally, I wouldn’t be willing to wade through every one, just on the off-chance You could literally spend your life pursuing every interesting lead that anyone has ever found, but most lab experiments don’t lead to a safe and successful medicine, and life is short to keep trying everything.

I must admit, I have fallen for a couple of supplements that are “rumoured” to help - but I don’t have high expectations, and also they have the advantage of not being horrible, which does make a difference, I think.

It is much easier to narrow the field by going only for things that have been proved and tested than chasing after everything that has ever shown any promise, in any experiment, anywhere. Also, with the latter, even if they help, we don’t know about long term side effects. If you stick to mainstream medicine, you at least know (or should be advised) what risks and possible side-effects you are accepting.

Hubby’s research is not totally misguided, and it’s obvious he means to help, but it still doesn’t mean you have to go along with it. From memory, less than two percent of “promising” lab results translate into successful medicines, so I wouldn’t rush to take stuff just because it’s done well in a test tube, or even a mouse.

Evidently the mushroom has been tested in humans with mild symptoms of dementia, who apparently showed “some cognitive improvement”. But I don’t know how large the trial was, and MS is NOT dementia - despite also being a brain thing. So I don’t think it’s safe to conclude the results would be the same.

We just can’t put ourselves through trying everything - it’s expensive, impractical and unpleasant.

Tina

x

1 Like
29

You claim ‘bullying wrapped up in a caring guise’, but i might counter with ‘caring misconstrued as bullying’.

I do not think it fair to dismiss the efforts on the part of one person, as simply being chauvinistic bullying. but i would agree that relentless pressure to coerce someone to yield to an otherwise objectionable plan of action is wrong.

I very much doubt that the pedlar of foul mushroom concoctions mentioned in this thread, is motivated purely by an egocentric desire to dominate ‘her indoors’. More likely, is that they are desperate to find a solution to a significant problem and the extent of their efforts to promote something, anything, merely emphasises their commitment, hope and resolve to finding that solution.

(It’s like profanity for emphasis; it’s not that i am a foul mouthed idiot, it’s just that i [Profanity edited] mean what i say!)

Ultimately, there is an imbalance. the person bullying needs to back off, the person being bullied needs to step up (perhaps by demanding that the bully backs off?)

The tragic thing is, a rift has the potential to form here between two people who in actual fact, are looking to secure the exact same thing. Dismissing / categorising someone as being a bully would be detrimental i think.

1 Like
30

So I’ve kept away from this up to now, but I started researching the topic
Apart from the usual wild claims made by the people who supply such things, I found this:

“A study was done in a rehabilitative hospital in the Gunma prefecture in Japan, with 50 patients in an experimental group and 50 patients used as a control. All patients suffered from cerebrovascular diseases causing senility, Parkinson’s disease, or other spinocerebellar and orthopedic diseases that afflict the elderly. Seven of the patients in the experimental group suffered from different types of dementia.>
.
.
The results of this preliminary study show that after six months of taking Lion’s Mane Mushroom, six out of seven Alzheimer’s patients demonstrated improvements in their perceptual capacities, and all seven had improvements in their overall FIM score”.

Now to me this looks like what we used to call the “shotgun” approach to research.
They have 50 in the experimental group and 50 in the control group and they suffer from a wide range of conditions.
Out of the control group, they select seven people and state that these seven had a cognitive improvement
They do not mention the control group, and there are no statistics given.
if this had been proposed as an undergraduate project, I would have failed it as not controlling the variables.

Another study by Mori in 2009 (yes, that long ago) had 30 patients given the mushroom extract.
They were tested for cognitive function at 8, 12, and 16 weeks - all apparently showing improvements in cognitive function.
At this point, they were no longer given the mushroom extract, and after 4 weeks their scores in the cognitive function test “decreased significantly”.

Now, to me, that says that the mushroom extract is not a cure. If it were, the improvement would have been maintained for a lot longer

So, the next time hubby tries to get you to take some, you can reply “But I’m not Japanese”.
When he asks what that has to do with anything, you can tell him that the only evidence that the mushroom extract is good for anything, is from Japan.
He probably won’t know that.

There is no doubt that mushrooms placed upside down in the sun can store Vitamin D. There is substantial evidence that some compounds extracted from mushrooms can be beneficial - but if the effects were that good, one of the major pharmaceutical firms would have synthesised it, patented it, and be looking for authorisation to market it.
At the moment, mushrooms are claimed to be a cure for several viruses, cancer, alzheimers, etc
Yeah, right.

Geoff

2 Likes
31

I think it can still be bullying, regardless of being well-intentioned (as the bully sees it).

To “suggest” is fine, but to stand over someone and insist they do what they have expressly said they don’t want to is not respecting their autonomy. Calling them things like: “Pathetic” if they won’t go along with it is also oppressive.

What is: “I know what’s best for you, and you’re pathetic if you won’t do it.”, if not bullying? It may be from sincere and even desperate motives, but nobody has the right to insist someone adopts a particular treatment regime, and that goes for orthodox medicine too. A parent or legally appointed guardian of someone who lacks capacity to decide for themselves might have to make that sort of decision, but it doesn’t extend to a partner who’s fully sane and capable.

What if it was their money, not their medication? Is it OK as long as it’s from good motives, and: “I just want to make sure you make the right financial decisions”?

Tina

3 Likes
32

Yeah… good points, well made Tina.

To be honest, i had forgotten about the use of terms such as “you’re pathetic” etc which i think is an abhorrent thing to say, irrespective of the situation or the underlying motives of anyone involved.

Perhaps such name calling was provoked by frustration, but in any event, it remains entirely inappropriate.

I stand corrected. Sincerely, thank you.

33

'shroooms maaaan!

apparently the magic form of mushrooms can undermine anyone’s need for eye glasses for the entirety of their lives!

1 Like
34

Now, if it was that kind of 'shroom I might be interested! Lol!

Thanks, DoctorGeoff, for confirming what I thought (though I couldn’t understand or explain it in such an edjikaytid way!)

i think that the ‘you’re pathetic’ statements were made through frustration. I can understand. It wasn’t intentionally meant to hurt. I have considered saying ‘cigarettes have been shown to have neuro protective benefits’, so if he wants me to take the mushroom stuff, I will start smoking again! (Yeah, I know smoking is not a good idea, can cause relapses, cancer, and so-on, but perhaps it’d get my point across?..)

35

You have all impressed me. Taken an emotive subject, discussed it and managed to come out the other side with nobody taking offence or being upset (I hope). Is the problem that MS is actually so mind blowing, the fact that you’re going to have to live with it forever, that being the partner of an MSer is hard. Men (I think?) especially want an answer. They really have a need to try and fix the problem so want you to try whatever they can find which offers a potential solution. Those of us who live with it, and especially those of us who’ve lived with it for years, know that there is no simple Lions Mane mushroom mush that will be a ‘cure’.

Ultimately, those of us who are being encouraged/persuaded/bullied/goaded/urged to take supplements, cures or treatments that we don’t believe in or are too unpleasant to take, need to find some way of telling our lovely partners that although we love and respect them (probably?), taking such gunk is beyond the bounds of marriage, unless you have promised to obey!!!

Love Sue

1 Like
36

as a ‘male reader’ I find your initial comments disappointing.

2 Likes
37

Hey Loretta I don’t really have much to add to what’s already been said but I too have had the unfortunate of drinking that mushroom concoction in the first couple years after my diagnosis. It was from a well meaning work colleague of my mums at the time & I can honestly say that in the best part of 20 years, I can still remember the taste. It is truly disgusting! No wonder you’re feeling & being sick! I drank it twice & that was enough for me - it stinks so bad too! I’m really sorry your husband is basically forcing you to drink it. I understand he means well but I don’t agree with the manner he uses in trying to help you. He needs to back off & listen to what you’re saying. You know your mind & your body better than anyone, he really shouldn’t be demanding you drink it. I hope he listens to you & leaves you alone. Take care x

2 Likes
38

Thank you Mogace.

I like this approach which may just help to diffuse any emotions when / if this subject is raised again.

It is so difficult when we love each other very much but struggle against each other when the ms makes such big changes to our lives. We are having to redefine our relationship after 26 years because our day to day life is very different from what we had planned.

I suppose it’s an opportunity really. No chance of being in a rut !

Janet

39

he is a bully, and you need to tell him he IS being a bully, let him take a good look at himself, dont put up with it!

1 Like
40

My mother used to send clips from the Daily Mail to me but I would check up on the research mentioned and tell her the flaws in the small samples of people involved or the estimated time when a medicine may be developed and the clips seem to have dried up!