To wish the papers would stop telling us about another 'miracle cure' for MS

[MrsKravitzFromAcrossTheStreet]

Today my lovely DS brought me a copy of the Telegraph to show me an article describing a 'miraculous' treatment for MS that makes the blind see and the paralysed walk again apparently. I thanked him and agreed that yes, that is encouraging, hope it's available soon! (as I do with everyone who brings my attention to these reports which crop up regularly) but I knew it would be yet another drastically exaggerated tale of a treatment which is probably no good for my type of MS and I am unlikely ever to be offered by my doctor anyway.

And as I had expected, when I looked into it I found this blog from Barts and the London and this article from the MS society which describes the results much more tentatively. In short, the results of the trial are encouraging, but just half of the participants saw improvement. And most importantly, they all had relapse-remitting MS for less than ten years and it doesn't work for people with the progressive kind (ie me).

I'm so pissed off with this lazy, sensationalist reporting that raises hopes unrealistically. I have learned to pay little attention to these articles but I feel so angry that they have begun to affect my own children, so their hopes for me can be dashed too.

AIBU to wish these fucking journalists would tone down the sensationalism and claims of miracle cures in these articles and print all the relevant facts FFS.

Sorry, here is the original article - www.telegraph.co.uk/news/science/science-news/11442985/Miracle-stem-cell-therapy-reverses-multiple-sclerosis.html and another from the Daily Mail.

Yanbu. Fucking annoying all round.

Yanbu it happens with most chronic illnesses. I've told my mum if she comes round waving a newspaper article at me again she's banned from my house. So far she's listened

My dad has PPMS. YANBU in the slightest.

I have just cut out a friend who said she didn't think I was considering all the options for my dad and that I was being unduly negative.

She's obviously an exception but people who are so optimistic based on a newspaper article just can't understand.

YANBU. We lost a friend to ms at the age of 34. Diagnosed at 19. I am sure his mother - whose graveside sobs I will never, ever forget - is most interested.

Progressive MS is s bastard. We lost my dad to complications from it. Stay strong and hopefully the cure does come through.

YANBU
My heart always sinks when the newspapers/BBC Breakfast(they are particularly lazy gits) have an 'experts say ...' story. A thirty second Google almost always reveals they've said nothing of the sort.

YANBU. I have rrms And just ignore the articles now, it will be about 10 years before any treatment is available anyway and during trials it might be shown not to work. I used to find articles such as these really exciting but now they depress me.

Yes, I think it exasperates the scientists too sometmes.

Before I read your post, OP, I knew you would post a link to the Daily Mail. Bastards. My DF has secondary progressive MS and I confess I have previously been guilty of excitedly showing him an article. The Mail and Express just rotates sensationalist crap on a daily basis. Tomorrow it will be a cure for cancer.

The problem with articles like this is they give people who don't know anything about MS (this week, cancer next week) the impression that MS has been cured. Which can make life for sufferers even worse.

Bear in mind, there will be discussions in workplaces around the water cooler today, where people who suffer from ME will be told there's now a cure - it's in the Telegraph.

As an aside, stem cell research is quite advanced in MS. And it does work. To a point. However, people who have "got better" after stem cell therapy, very soon return to how they were before. Which demonstrates that the demyelination in MS is an ongoing process, rather than an historic event, and that any treatment for MS needs to look at two aspects. (1) stopping the process of demyelination and (2) repairing any damage done to reverse the effects of the disease.

Since the body already has a remyelination mechanism, the main goal is (1) preventing demyelination. If that can be cracked, then the body could heal itself. Although people who have suffered for years and years may still be unable to walk, as their muscles will have atrophied.

If there were a scale of 0=pisspoor, and 10=balanced, informative, researched and comprehensive with signposts to further reading, then general level of science reporting in the UK is about -5 on a good day, but usually more -7, -8.

Yy, there's a truly horrible feedback from these sort of articles which becomes blaming sick people for not getting better - because everything can be cured, doncha know.

I've seen plenty of it on MN - teacher blaming student for "not controlling their diabetes", lots of "fed up with my friend/relative for being boring, ruining my birthday, getting benefits when they should just put the effort in and get better from their chronic condition."

MrsKravitz, for you and your lovely DS.

Most people with diabetes can control it, though, Pausing (to some extent, at least) - so that is very different to blaming someone with a disease like MS for not getting better when a potential future cure has been reported.

On the most basic level, people with diabetes control their disease through a combination of diet and insulin. It doesn't always work - if you have an infection or illness, that can screw up your blood sugar, but the general theory is that, by eating the right things, testing your blood sugar regularly, and taking the right dose of insulin, you can control your diabetes.

If someone with diabetes is constantly becoming hyper- or hypo-glycaemic (ie blood sugar too high or too low), and there is no other factor that is affecting their blood sugar, then the assumption is that they are not taking the right amount of insulin and/or they are not eating the right diet. Since these are things that people can control, if someone is deliberately not taking these measures to control their illness, then it is not unreasonable to blame them for not controlling their diabetes.

IIIRC, the thread in question was about a comparatively newly diagnosed teenager, who had little practice in managing it, whose pancreas had not yet completely packed up, and who had just done a games lesson.

When he started becoming unwell, the teacher instead of seeing it as a medical issue, treated it as a disciplinary matter and sent him to sit alone in a corridor.

Again IIRC, a teacher on the thread backed up what the RL teacher had done, coming out with pretty much what you said above.

Made my blood run cold.

Thankyou for your kind words, and I am sorry for those of you who have experience of MS yourselves

I meant to say in my OP that these articles apply to other illnesses too; because of my own experiences I always read such articles sceptically now, whatever they refer to.

The point about other people assuming a cure has now been found for an illness so what are you still moaning about? is so true. My Dad once told me what his partner had said about me - 'If' - she actually said if - 'If she's got MS, why isn't she taking medicine for it?'. She and he couldn't comprehend that after all the miracle cures they'd heard about, there still wasn't a suitable treatment for me that made everything better. I still don't know what he hoped to achieve by telling me that; perhaps that I would admit I didn't have MS after all, or that I was deliberately refusing treatment because I enjoyed being ill

I wish that reporters of such articles would realise how these over-optimistic reports affect us and our families. At Christmas my BIL informed me in front of all the family that he'd read about a new MS wonder drug cure, and when I explained it would be nice but these treatments never seem to materialise - certainly not in the form that they're originally hailed - it made me feel like I was being negative and pessimistic. So from now on I will just smile and nod.

In that case, Pausing, the teacher was in the wrong.

Apologies for derailing the thread.

It's rubbish isn't it? My elderly Mum tries hard not to fall for this cheap, lazy journalism. I'm not her only child with MS and I hate to think her mind is being messed with whenever I see these articles. My DC is too young to pick this stuff up but it is only a matter of time. OP, your post is a gentle reminder to me to keep a watch on it. Thank you.

YANBU. And agree that people who don't understand the these types of conditions decide you are being negative and not helping yourself when they have presented you with a cure

Also, I was just about to text a friend who has burns scars from childhood about a new laser treatment I saw on a programme last night about acid attacks. I won't now! I'll maybe mention it when I meet up with her, but I don't want to do the same to her! So thank you for stopping me making a gaff by your thread.

I couldn't agree more. I read an article last week that was headlined "caffeine can help eliminate MS". I'm sure the sufferers who have to inject on a daily basis will feel much better that they can just switch to a cuppa instead.

I have RRMS too. I think articles like this 'downplay' chronic illnesses, Joe public will think "well, there's a cure so you're not that bad" and they won't realise how upsetting their comments are or that there isn't actually a cure. The media tar all MS patients with the same brush, and only show people with very advanced MS who are in wheelchairs and don't acknowledge that every patient's MS is different. I rarely tell people that I have this because their faces are all the same and they assume I'll be severely disabled whereas I've not had a relapse for years and I have no symptoms.

Not ms - but when we got ds's diagnosis the doctor immediately launched into all the miracle cures that were being worked on around the world and assured us we musn't give up hope. My view is that it's false hope and our energies are better spent on small tangible ways we can improve things now rather than pipe dreams. I want to know who's going to pay for them too!

As a rule (viagra excepted - strange that) anything you hear about on the news regarding medical treatments is at least 15 years away from a doctor being able to prescribe it.

It's also worth remembering that there's many a slip twixt cup and lip, and a proportion of these newsworthy treatments will simply prove to be ineffectual, dangerous, or plain useless. CCSVI anyone ?

Is anyone on the MS drug tecfidera? I ve just started it last week and want to sleep non stop

No, Justyou. Have you spoken to your MS nurse? A lot of medication have side effects, which you have to take medication for. Are you taking Vitamin D as that can help with fatigue.