Did you watch Panorama?

On Monday, BBC One aired a Panorama show all about multiple sclerosis. The programme included exclusive access to patients pioneering a crossover cancer treatment that has enabled some people with MS to regain movement.

You can view the show on the BBC One website at http://www.bbc.co.uk/programmes/b06ss17g.

Twitter was ablaze throughout the evening of the show, with people commenting about it positively and negatively. At MS-UK, we saw people who felt the show was really hopeful, and some who simply didn’t like the use of the word ‘sufferer’.

The show definitely got the nation talking about multiple sclerosis, but how did it make you feel? In this blog we get Kahn’s view on the programme, and please do leave us a comment below saying what you thought about it!

Kahn’s view on the programme, and what it meant to him…

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Kahn, Editor of New Pathways

Monday seemed to be a day when people felt compelled to ask if I was going to watch Panorama’s look at a new multiple sclerosis treatment being trialled in Sheffield.

I wasn’t going to. I was off to watch Room.

Monday evening and Tuesday morning, the same people again Tweeted and Facebooked me to ask if I’d seen the Panorama programme.

I hadn’t. I’d watched Room.

Enjoyed it too.

Which is more than can be said for the Panorama programme, which I sat down to watch on Tuesday as I had my lunch.

It being a programme by the BBC and Panorama, I was expecting a fair, balanced, honest look at a potential new treatment that could help people but comes with risks given that it involves stem cell transplants and chemotherapy.

Sadly, what I got instead was some kind of tabloid sensationalism, full of ‘sufferers’, ‘miracle’ cures and people with MS whose lives were over the minute they were diagnosed.

Now I know diagnosis is tough – it’s taken me years to get my head round it. But at no point did I think my life was over. It had just changed. Radically, sure, but still only changed. I was still alive.

And I know many fellow MSers who would say the same.

Panorama gave me the impression we’re all marathon runners and snowboarders whose reason for living has been stripped away.

Personally I couldn’t snowboard before I was diagnosed, never mind after…

So what message did that send out to people newly diagnosed? Or people, like me, who are doing OK at the moment?

Yes, I know Panorama aren’t there to do a PR piece for living well with MS. But they shouldn’t be there to scare the socks off you.

I like my socks. Leave them on.

And what about the side effects of chemo? Did I miss that bit? Or does everyone feel great straight away, if a smidge bald?

And what about all the other unanswered questions? Is the trial still open? Can it be carried out anywhere else?

And crucially, who did it not work for? What happened to the people whose immune system wasn’t rebooted?

I know they only had half an hour, and could only cover a certain amount, but the 30 minutes we got served left me feeling disappointed.

Disappointed that only the extremes of the condition were highlighted. Disappointed that a more sensationalist approach was favoured. Disappointed that all the good work the MS charities en masse do in promoting a positive approach was being systematically undone.

Maybe it wasn’t. Maybe people took something positive from the show and it was just me in a bad mood (hey, could happen…).

Part of me hopes so.

Let me know what you think by commenting below. I would love to know if you found watching the show difficult, like I did, or if you took it completely a different way?

And if I get answers to my questions, I’ll let you know.

Kahn

Editor, New Pathways

Affected by the show?

You can contact the MS-UK Helpline to discuss anything related to multiple sclerosis. Just visit our website to live chat with us, or call 0800 783 0518.

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About MS-UK

MS-UK was established in 1993, and is a national charity dedicated to empowering people with multiple sclerosis to make the most of today, and live life to the full. We put people affected by MS at the heart of our work. We provide high quality, professional services to support people living with multiple sclerosis, and we listen to people affected by MS.
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23 Responses to Did you watch Panorama?

  1. Gavin King says:

    Panorama should come with a health warning. Once upon a time, many moons ago, you might have got balance. In a field swamped by sensationalism I think we meet might be naive to think they should be any different. In general, it is my experience that whatever field they report on, if you wish to cut through the crap, just ask what someone involved in that field thinks. After having once watched a Panorama expose about corrupt dentistry with growing anger, I knew then that the programme had sold its soul to great God Murdoch.

    Liked by 1 person

  2. hanyagordon says:

    I love the fact that you raise the issue that we were not all Marathon Runners / SnowBoarders before our diagnosis!

    The programme got people talking about MS, which is great and the treatment is a reason for cautious optimism, but it is the start of a potentially long process.

    Thanks for sharing your views.

    Liked by 1 person

  3. Dom Maclaine says:

    I just felt it was too short. If it had been an hour, say, there could have been more balance.

    Liked by 1 person

  4. Sue Bnnison says:

    That is weird Kahn – my thought process was exactly the same.

    Liked by 1 person

  5. Ann Ford says:

    I was left with lots of questions. I have Primary Progressive MS and why is it not recommended for this type of MS. It offered hope on one side and total disappointment on the other. I wish I had not watched it!

    Liked by 1 person

  6. Rory Marriott says:

    No balance to the programme at all. Made it out to be a new treatment when it has been carried out in Russia and Mexico for several years. Made it out as if it is only an option for RRMS when it isn’t. After all the delay in getting it to air it was a disappointment

    Liked by 1 person

  7. Nicola says:

    I had mixed feelings about it. Felt a bit like dangling a carrot in front of a crowd of starving people and only a few are allowed to eat. I wish they had of gone a bit more into the statistics of its success/failings. What happened to the people whose immune system didn’t reboot? What are the risks? Are you exposing yourself to other disorders by rebooting? So many questions….a longer programme would potentially of balanced it out a bit. On the back of this programme I am asking my neuro about stem cell trials though.

    Liked by 1 person

  8. Karen says:

    It was journalistic sensationalism. My thoughts were what about those that weren’t relatively newly diagnosed? You didn’t really see the end of the story, the chap with the dog had just been given hope to get him going, not anything that improved his walking. Makes it much the same as all other treatments, just you have to go bald, vomit your insides out and be at risk of dying from an opportunistic infection. This is the sort of sensationalism that you expect from red top newspapers not the “educated BBC”. I went for a non MS related scan the next day and even the radiographer said I bet you can’t wait for that new treatment. I replied I wanted a lot more I information before I seized this particular cure.

    Liked by 1 person

  9. msuk2015 says:

    Hi everyone – thank you so much for your comments, it’s great to know how you responded, and I really do appreciate you sharing your thoughts with me. We will definitely be picking this up in the next issue of New Pathways, and trying to get some answers to share with everyone. We’ll keep you posted – in the mean time, keep commenting! Thanks again, and have a good weekend everyone, Kahn

    Liked by 1 person

  10. Wendie Worsley says:

    I think the programme was a little vague it didn’t mention the different sorts of MS is cannot help, it gave hope to thousands of people, but quietly slipped in it ‘could’ be available in three decades. Where there any drawbacks to the treatment, is it only suitable to the young highly active people. It gave hope to the few, and confusion to many, I have PPMS aquaintances now think I can be cured. There were too many unsaid items, I am pleased for those three it helped, can we see them in twelve months time to see how they have coped. Wendie Worsley

    Liked by 1 person

  11. Nikki says:

    I have had rrMS for 13 years and I am on Rebif have been for almost 2 years. The amount of my friends that have asked me about the panorama programme is small thankfully because my answer is I’m not sure if I would want to try stem cell therapy. Plus I have seen Chemo for the cancer side of things and lost my mum 3 months after her first and only dose as it knocked her for six.
    I think the programme only showed positive people not those that didn’t reboot. I think we need to see what happens at the end of the trial and see both sides of it. I certainly don’t see it as a possible cure for ms.

    Liked by 1 person

  12. Danielle Reilly says:

    I have to say I completely agree, I felt cheated and deflated and a little annoyed that they didn’t give further info on people that it hadn’t worked for and like you said a balance of the the great and good and the not do good.
    It’s fantastic that it got people talking about ms but I know a lot of my friends with ms spent the following day trying to explain that it isn’t a miracle cure and why they wouldn’t be able to have the treatment or that they wouldn’t risk it. Also that the people that had the treatment still have ms it’s just been put into remission but for how long nobody knows.
    I think the programme could be very daunting for newly diagnosed msers and those newly diagnosed need to be looked after and showed that you can live life well with ms.

    Liked by 1 person

  13. Louise says:

    I think that you seem to have been lucky with your support with carers etc to talk so glibly about this disease. I have been left for 18 hours in bed at home because 2 carers could not be found to toilet me using a hoist at home. I have managed to get back onto using crutches after a few years and financially have lost my business, my day job and any hope for me that this will stabilise my relapses is such good news. It is a wretched depressing disease. And yes I have thought that I could not go on at times.

    Liked by 1 person

  14. Mary Trimarco says:

    I like your views and I like my socks too!!! It cant help me with the type of MS I have however I do believe that stem cell treatment is the way forward but a positive outlook is far more important than any treatment 🙂

    Liked by 1 person

  15. Kirsteen says:

    I watched with the view of even if this is s radical new treatment, it’ll take decades before it becomes mainstream. It only grazed over the fact they were only treating one type of MS, and like the others I was disappointed that it didn’t even touch on the negative side effects or whether the treatment has been unsuccessful for any of the trial participants.
    Personally, I’m fairly new to the diagnosis of why I’ve been so tired and numb and wobbly on my feet etc etc. My father watched the show and he came out the complete opposite reaction to us, the ‘wow’ factor got him hooked; so much so that he believes there’s hope that his daughter will “see a recovery. He’s not uneducated by any means, but the rose tinted glasses were there.
    So, what I’m saying in my waffle, is the show not only sensationalised this ‘miracle cure’, but gave false hope to those whose family members have MS.

    Liked by 1 person

  16. Andy says:

    During my first 7 years of MS I also went through this kind recovery with out any Chemo/stemcells and that was also with a crappy diet and zero phisio,
    how many of us went the first few years like this? I know at my local MS therapy center loads of my mates were exactly the same.

    By only treating newly diagnosed people they are simply picking the low hanging fruit.
    3 success stories reported out of 20 treated? these results could easily have been eclipsed by just helping these people with diet and intensive phisio.

    Stemcells i’m sure will be the future but teaming it with chemo is just a way of keeping the big pharma money flowing in.

    Liked by 1 person

  17. Sally Martin says:

    Long story but here goes!

    I took voluntary redundancy in 2013 from a well paid & travelled job rather than move my family to Puerto Rico. A month later I was encarcerated in hospital for a few months with acute m.s. I didn’t even know what m.s was!

    A year ago the dvla took my driving licence due to it. But am working on it!

    So now unemployed AND disabled! Can’t find a frigging job so am gonna try teaching! Despite my brain condition, I can still speak 4 European languages fluently!

    Right done!

    Liked by 1 person

  18. Andy says:

    Whilst this treatment is good for some people, the examples being used I suspect are the exeption rather than the rule. I have been on Tysabri for 7.5 years and I have had no relapses since starting it but I have had none of the miraculous recoveries that some have had on it. Plus when it was being trialled there was a fatality rate of 10% which they didn’t mention on the Panorama show. IMO this is a treatment that should only used as a method of last resort for those who have not had any success with either Tysabri or Lemtrada.

    Liked by 1 person

  19. Sally Martin says:

    I was diagnosed with m.s. nearly 3 years ago. A month before, I took voluntary redundancy from a good well paid & travelled job. I spent 4 months in hospital with it. Came out in a wheelchair but now hobble with a stick! Oh and a year ago the dvla took my driving licence due to it but am working on it! . The programme was good because it highlighted the fact that 100000 people have this in Britain alone! Right rant over!

    Like

  20. Elia van Schaijk says:

    Bit of a late reply to your post, but I don’t often check in to this site 🙂 But as it is today to the date that I got diagnosed 4 years ago with PPMS, I thought, let’s see if there is something new on the horizon for me/my type of MS.

    I didn’t watch the show, was thinking about it, but decided not to watch. Heard all about it obviously afterwards. It isn’t a new therapy, it has been trialled before with success and less success. I had read the description of the program and seeing there was no mention of progressive MS I decided that I didn’t want to watch it. I find it disheartening to watch or read a whole story about some new treatment to find out at the end it isn’t trialled or suitable for my type.

    I had a good laugh about some parts of your post as I do recognise myself in it. According to the MS nurse I am in denial as I want to live my life as normal, but life does goes on! When I was just diagnosed I did go on to the support sites, read what could happen and within a month I was an emotional wreck. So hence my approach of not going to support groups or watching these kind of programs, I don’t suffer from my illness. That’s how I deal with it all and it works for me. Live life in the now, not being scared of what might happen in future.

    The good thing though is that it has brought the attention onto MS, people are talking about it. Hopefully now there will be a follow up and it doesn’t stop just with this one off program. And that there will be more funding coming available for more research that at some day, all types of MS can be cured. Never give up hope 🙂

    Like

  21. msuk2015 says:

    Hi Elia, following on from your comments we thought this recent MS news story may be of interest – FDA grants ocrelizumab ‘breakthrough therapy designation’ for primary progressive MS – http://www.ms-uk.org/feb18

    Like

    • Elia van Schaijk says:

      Thank you, will have a better read about this in time. The article doesn’t give much info about the medicine, side effects, availability etc. Will do some research on it. Appreciated, thanks 🙂

      Like

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