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Trial for Progressive MS

Anyone fancy signing up for a trial into progressive MS? Multiple Sclerosis Research: CrowdSpeak: NIMBYism in MS

Hi Whammel,

No use to me as I haven’t been on any DMDs do you fancy it yourself?

Mags xx

No good for me either for the same reason, but otherwise I would be happy to try. At least there seems to be more effort going into finding a treatment for progressive MS and hope they a get a few more responses.

A shame…No DMDs here.Looks interesting,

Wb

Now l do not understand the criteria. This is a trial for PPMS - which l have - but l thought you were not prescribed dmd’s for PPMS. PPMS - starts off as PPMS - you do not have RRMS first - thats SPMS.

Whammel - whats your thought on this. As l would happily go on a trial - if l lived near enough.

Apologies, I should have made it clearer that the trial is for SPMSers only, and as PPMSers, we both don’t meet the criteria.

Like you, I have no objection to signing up for a trial in principal, but refuse to stop taking ldn and that appears to be a stumbling block for my Neuro. There’s no pleasing some people.

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Thanks Whammel for clearing that up. No way- would l give up my LDN - and its thanks to you that l learnt about it.

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No good for me i have spms but never been on a DMD i was never offerd them.i would have thought about doing it too.

I’m not eligible anyway, due to never having taken DMDs, but I actually thought the article was rather arrogant, accusing people with MS of being “NIMBYs” (not-in-my-back-yard) for refusing to consent to a trial that would require multiple lumbar punctures. No person with MS is obliged to take part in any sort of trial whatsoever, but I fully understand there being a pretty low take-up rate for one that involves multiple LPs. If anyone is kind and generous enough to do it, then good for them, but certainly no reason to tear a strip off others, and refer to them as “NIMBYs”, because (for some reason - can’t think why!) this trial is a deeply unattractive proposition. I don’t really care that they’ve done a lot of research into making lumbar puncture as safe as possible, and minimising discomfort. That doesn’t mean anyone should be stigmatised or held morally culpable for still not wanting to do it.

Yes, it would be great if we were all willing to make sacrifices - including physical unpleasantness and possible risk and pain - for the greater good - but I don’t think that’s a virtue given to everyone, and no researcher has the right to criticise already sick people for choosing not to subject themselves to such things. Trial consent - where given - is a gift. Not something the researcher has a right to expect, and slag off people who can’t or won’t give it!

I also think it’s ethically dubious to request that would-be participants NOT be told up-front by their neuros that there would be a requirement for multiple lumbar punctures. I do appreciate that they would be told before finally giving consent, but he wants to have his own go at persuading them, by not telling them until they’ve already indicated an interest, and turned up for further information.

To me, that would be an outright insult and waste of my time. I know I’d never consent to a trial involving multiple LPs (I wouldn’t consent to even one, for diagnosis), so I would think it duplicitous of my neuro to send me along as a possible candidate, without mentioning a factor that - to me - would make it an absolute no-no from the start. I’d be angry to go along and find I would never have considered it anyway!

The only hope they’d have of persuading me to join what I would find a deeply stressful and unpleasant trial would be to focus on how important the work is, and how really, really appreciative they’d be. I’m afraid accusing me of being a “NIMBY” if I won’t do it is certainly not the way to earn my trust and confidence, and make me think really long and hard about it.

There should be absolutely no negative judgments attached to not wanting to do a trial. I do understand drugs need eventually to progress to human trials, and researchers rely on the goodwill of volunteers to do that. But you really can’t admit your trial needs multiple invasive procedures, and then blame MSers themselves for not flocking to sign up. “We’ve worked really hard to minimise any risk or discomfort!” is hardly a fantastic selling point. So now people have a duty to participate, because it’s not as horrid as it might have been?

I’m relieved I’m not eligible, but he’ll need to work very hard on his persuasion skills, if his best shot is: “Well, you’re just a selfish NIMBY if you won’t do it!”

Tina