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.

My dad died of MS
My dh2 died of MS aged 45
My friend's son died of MS aged 38
My dh3's sister died of MS aged 55
When I say 'of MS' MS was always the secondary cod on the certificate but was always there as a major contributory factor. I wish to God they would find a cure and hope this stem cell treatment provides some hope.

No, YANBU at all! It's lazy, careless crap journalism.

YANBU - it's the same for many other illnesses too.

YANBU - the same for many chronic conditions and it just makes the sufferer feel even more crappy and somehow responsible for the fact they are not getting better.

I suffer from a rare lung condition and the number of articles I get sent from helpful friends - from going dairy free through to ayurvedic medicine - it feels like a bombardment sometimes of 'oh, look at this, you could be better if you just put some more effort into it.' It's exhausting.

So sorry MrsKravitz

Hehe I like that pic madhairday

We stopped watching bbc breakfast a long time ago. I think someone on their editorial team has an obsession with serious illness,mostly cancer I seem to remember. DH had recently lost both parents and it was the last thing he needed to hear over breakfast every day. Similarly, since being diagnosed with breast cancer last year I am experiencing the same with news of wonder cures. I have also been shocked at how often it is used as a 'story' in tv and films. Just as you're trying to relax and forget your troubles for a while there it is plastered all over the screen as entertainment. Sorry to distract, it upsets me very much.

It's partually that the general public would like to believe that there is a miracle cure round the corner for everything, and partually shoddy journalism/journalists not understanding the actual science.

It's going to sell more papers to headline "Miracle cure for X just round the corner" than a headline that says "Small hope that new treatment might be able to slow the progression of X after 10 years more research..."
Yes, I know that woul be a rubbish headline anyway but you get the point.

Problem is that people see the first headline and think it's a case of hassling doctors and all will be fine. And even if the actual numbers/research is produced in the article, more people don't understand the numbers any better than the journalists.

I get it with dd2 who was born without a hand. Yes, the 3-D printed prosthesis are a nice gimmick. Yes, they will get better. Yes, for some people it is great. But actually the bog standard NHS ones are less bulky and do a better job thank you, so I'm not going to get excited about them. Particularly when you're the twentieth person to tell me about them.
If they get to a stage of being comparable with the NHS ones then I suspect the NHS will use them as they're cheaper anyway.
It is great that they are researching into better prosthesis, but I'm not going to get excited about something that isn't going to be available for 10 years.

And no, hand transplants aren't any more exciting as a prospect. Sorry.

But when dd2 was first diagnosed at scan, those articles seemed full of hope. Maybe she wouldn't always be the girl with one hand
It was only as I read into them and discussed with experts and they became clearer for what they were rather than what they were portrayed that I could accept dd2 the way she was. You see, while there was hope that science could "cure" her, I wouldn't get to the point of dealing with the actual situation.
If you spend your time thinking in 5 years, 10 years... then you aren't able to look for the best solution now. And now is what matters in most cases.

I like that pic too!! My aunt works in a hair salon and she always ringing me with "advice" from Mrs So-and-So about my MS. It hits my mum hardest. She's due to visit in a few weeks and I know she come clutching this article like its some holy grail. Makes it hard on my 5 yr old DD who then thinks mummy can take a magic pill.
I feel like a real old ogre trying to kindly let DM down from the media high she is fixed on.
It's exhausting.

I know what you mean. I think the media is like this for all chronic diseases unfortunately as it sells papers. I quite like the fact that MS is in the media such a lot nowadays though. I don't remember it being mentioned as much 25 years ago when there were no treatments and it does give me hope that things are changing and they will be able to totally stop it progressing in the future.

YANBU My mother has a genetic condition and refuses to get blood taken so we can get tested because she read that stem cell treatment can do wonders for it so by the time we might start showing it (it's late onset) there will be cure and we don't need to worry about it.

Yanbu. However once many years ago I read an article in the metro (or one of those free london papers, there used to be two) about a new drug called herceptrin for advanced breast cancer.

I took the article to my sick mum who showed it to her consultant at her next appointment. It turned out he was involved in the drug trial which she signed herself up to.

She went into remission for three years as a result of that newspaper article and we got to spend a lot more time with her as a result.

Probably though I am one of the only people ever to find out something useful from a newspaper health story.

My DD has relapsing and remitting MS and there are constantly new drugs coming up which may or may not help. Her consultant is quite optimistic that, if not a cure, there will be better ways of managing it.
However I have a relative with secondary progressive MS and the picture there is much more bleak. Most of the treatments for RR MS came after she went into the secondary progressive phase and the drugs trials seem to concentrate on RR presumably because there is more chance of helping the patient.
Also, as any MS patients will be aware, there is definitely a post code lottery. DD lives in an area where a lot of treatments are available. If she lived here with us it would be a lot less favourable for her.
OP you are not being unreasonable.

Interesting analysis of the story by the NHS here

My Ds has cerebral palsy and recent reports, combined with a 13 year old dd who is very scientifically minded and tends to 'get into' stuff resulted in her demanding to know why I hadn't had her umbilical cord frozen so we could use her stem cells to 'cure' her older brother.
One day...

YANBU OP

The trouble is, it doesn't get much better when there is an available treatment.

SIL recently asked my dad why he was still taking medication for his Parkinson's as "They don't seem to have cured you yet".

And that is coming from a healthcare professional, albeit from the paediatric group.

Interesting article by an Oncologist in the Guardian on alternative therapies for cancer

The drugs that are being prescribed now, when did they first appear in the newspapers? What's the time between it appearing in the papers, and the patients getting the medicine?

CFSKate

The drugs that are being prescribed now, when did they first appear in the newspapers? What's the time between it appearing in the papers, and the patients getting the medicine?

It depends when the "news" came out. Usually it's at the preliminary research stage. I'm sure others here are more expert, but the general route is ...

1. Idea for drug (driven by biochemistry)
2. Drug development and research (at which point 99/100 get binned)
3. Initial drug testing (be prepared to lose a few more here)
4. Initial animal testing (oops, lost some more)
5. Review of testing so far (not out of the woods yet)
6. More detailed animal testing (getting closer)
7. Collation of results, peer reviews (could still be dropped)
8. Medico-commercial review (nervous !)
9. Protocol for human trials (getting better)
10. First human trials (could this be it ?)
11. review of human trials (fingers crossed)
12. further human trials (toes crossed)
13. develop drug for commercial sale (are you wishing very hard ?)
14. sell it - MADE IT !!!!!!

The whole process takes years, and you normally only get to hear about it at (10) at which point you are 5 years from market at the very least.

As any pharmacologist will tell you, all the easy drugs have been found, so new drugs will take longer. However, advances in supercomputing have meant that most new drugs can be made and analysed virtually, thus saving billions.

However, one emerging field, is the development of "personalised" medicines. Basically scientists (one is a family member) have started to notice that peoples reaction to medicines can be affected by their genes. Which is why an drug may work for one person and not another. So in future what you are prescribed may be dependent on your DNA.

Another development is the realisation that peoples metabolisms affect medicines far more than previously thought. Meaning work is being done on the best time of day to deliver medicines, based on a persons metabolism.

The funniest thing is these last two developments basically take us back to pre-enlightenment medicine, when patients diseases were treated according to the patient, rather than the disease !!!!!

LurkingHusband - thanks. It's both hopeful and frustrating, the computing power and knowledge of DNA/gene expression/etc. To know that these things will be possible, but not in time for me.
My current hopes rest on an existing drug getting approved for my illness. So I guess that would be stage 10 onwards on your list.

You know how when you were at school, it seemed everything was "knowed", and we just had to finish off a few loose ends ?

We now realised we "know" much much less than we "knew" 30 years ago. And the answers we are all seeking are in that gulf. The more questions we seek to answer, the more we end up creating.

The latest wrinkle in biology (not my field, but of interest) is the suspicion (if not proof) that quantum effects are at work - that evolution has built the quantum world into itself.

If this is true (and there's no proof it isn't) then the bottom has just fallen out of everything. Because nobody understands quantum physics.

"that evolution has built the quantum world into itself"

I don't have a clue what that means. I did read something about robins using quantum stuff?

This reminds me of when someone posted a couple of years ago that none of this is real and we are all just a big hologram.

Is any of this related to vibrating superstrings?

My DM has RRMS and people are constantly saying to me about miracle cures, or mentioning how long she has been ill for if she is in the middle of another relapse. Really really irritates me.

As a side note (as lots of MS sufferers are on this thread) DM has been told she can now change her medication as she has had >2 relapses in a year. The Neuro has offered her Teriflunomide (tablets) or Alemtuzumab (Transfusion) - has anyone had any experience with either? The transfusion is one one she is most keen on but it seems to have a lot of risks/side effects. She is current taking Rebif injections 3 x per week.

DM is a HCP but likes to bury her head in the sand when it comes to her MS

I got the tablets wrong, it is Tecfidera not Teriflunomide!

Could I ask a question about RRMS - when you are not having a relapse, do you feel normal then, or are you still feeling ill, just not as badly?