MS-Selfie

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Educating/Empowering MS patients

Every five minutes someone, somewhere in the world, is diagnosed with multiple sclerosis – joining the 2.8 million people already living with it.

What they soon discover is MS is a fiendishly complex disease. No two people have the same disease course or symptoms – nor do they respond to drug treatments in a similar way.

They also find – in the lengthy periods between clinic visits – it can be difficult to find accurate and accessible information about how best to manage their MS – so they can live their fullest life possible with the disease.

Which is why Prof G launched the MS-Selfie three months ago…

WHAT: an online newsletter for people with MS that covers issues surrounding the disease – from starting/switching disease-modifying therapies (DMTs) through to advice on symptoms/side effects – with the aim of empowering and educating each person to self-manage their MS.

WHO: Prof Giovannoni is one of the world’s leading experts in MS. He has treated MS patients for more than three decades, regularly lectures internationally on the subject and was part of the team that developed one of the first oral disease-modifying treatments for the disease.

WHEN: once or twice a week a new edition lands in your e-mail inbox.

HOW MUCH: Free – unless you want access to the personal but anonymised case studies and opinions ($9.99/month or $99/year). This fee will be used to administer and curate the associated microsite. If you can’t afford this, please contact Prof G via email (gavingiovannoni@substack.com) and he can arrange for it to be complimentary.

WHY: to educate and empower people with MS.

Because being your own MS advocate is best…

About the author

Rachel Horne

8 comments

Leave a Reply to Jacqueline K. Cancel reply

  • Warning: Alternative view

    I’ve lost track of the MS information / material which is on line. This comes in various forms eg newletters, blogs, videos, webinars etc.etc. Type in Aaron Boster, Barry Singer, MS Trust, U.K. MS Society (and a hundred other MS Societies around the globe) and you will find information on MS symptoms, treatments….. There is so much information – it’s become an industry. I would say that all this information can lead to a lot of confusion, particularly when opinions differ eg IRT v maintenance. I’d like to see one source of information to avoid all the duplication and repetition. It appears to me that a lot of neuros spend their time retweeting posts from other neuros. Is this a good use of precious resources ie more clinic time.

    I would also like an end to the ‘celebrityisation’ of neuros. Some of the Twitter accounts come across as either self-promotion or neuros who failed to get their chosen career in show business.

    My final point is a call for neuros / MSologists to revert to what I call proper doctoring. The purpose of a doctor is to diagnose and treat (to either cure the patient of the illness or reduce the negative impact of a disease). When my father had prostate cancer this is what happened. When my neighbour had liver failure this is what happened. They weren’t offered hundred of leaflets and website addresses. The doctors they dealt with knew their specialism, the patients trusted them, and they were treated effectively and received high quality care. Patients don’t need to be “empowered” they just need doctors who understand the diseases they cover and treat the patient to achieve the best outcomes. I don’t see why neuros / MSologists should be any different. When I take my car to the garage because it’s misfiring go, I don’t need a lecture from the mechanic on the workings of the internal combustion engine or reams of information and graphics on how the engine management system works – I just want it fixed.

    • I understand what you are saying: “There is so much information out there.” I get overwhelmed too… and wonder if I have missed something key.
      That said, MS is such an individual disease – so there is “no one size fits all” when it comes to treating us – unlike say fixing a Vauxhall Corsa. Plus MS neuros have different approaches to treatment – and different constraints.
      In addition, I like the fact that is more patient involvement when it comes to MS treatment vs “doctor knows best”. But again – that is my personal view.

      • Rachel,

        I respect your opinion – I just have a different view. The main difference I have is: “I like the fact that is more patient involvement when it comes to MS treatment vs “doctor knows best”.

        Getting an MS diagnosis is a life changing shock. I remember being spaced out following my first relapse. I couldn’t think straight – my aunt died of MS in late 40s. A doctor has gone through 6-7 years at medical school, years of specialist training and for many neuros a PhD. Is it really my responsibility to challenge the expert? I’m a patient with a grim disease, surely the doctors job is to put me on the best treatment to achieve the best outcome. I’ve got an E grade in O level biology! The last time I said to my neuro “Prof G says……” he looked like he would strangle me with his stethoscope. It’s neurology that needs changing not the neurology patient. They could learn so much from oncologists. A friend with breast cancer didn’t have to read 35 leaflets about her condition, she trusted the training and experience of her oncologist to do the best for her (and she got a good result). I don’t see why neuros should be any different. If IRT offers the best chance of a better long term outcome then the neuro should be offering this (strongly) to the patient.

        • If there is an industry then there is a need, nothing wrong with that.

          The format of the selfie site is much better than youtube vids as it is more efficient, less time-consuming, easy to navigate and all together. Plus I don’t have to watch/skip annoying & loud intros of AB’s videos.

          Patient evolvement is only relevant when doctors can’t offer perfect solutions, I’d rather to see when MS specialists know exactly what to do.

          Personally, I’ve always had a problem with how prof G presents his ideas on this blog but I have to say the selfie site is well constructed and the contents are a lot less subjective and very very useful. Thank you Prof G!

        • I think you bring out some really key points… so thank you. I remember chatting with a friend who has MS and was diagnosed with breast cancer several years ago. She was immediately put on a treatment path… no hesitation. Is this because it was cancer vs a chronic disease like MS? Or is this because there is a different approach in oncology? I don’t know.
          I also know I bring my own bias to this because my first neuro – post diagnosis after a severe relapse – suggested no DMT – just wait and see. Do I wish I had pushed harder and got on a DMT? Yes, but he was the neuro – with all the training and practice, so I demurred. Thank goodness at least we have choices these days… I am sorry to hear about your aunt. How devastating.

    • This last bit made me laugh (if we don’t laugh we cry etc), it’s so true. I’ve said the same.
      The sad fact is no one knows how to cure this horrific disease. Until they do, it’s all words. It’s not their fault – I’m grateful for neuros for trying to find the answers everyone needs. Sorry that these answers are elusive.

  • ‘The MS-Selfie is a terrific project and I am glad to subscribe. It is tiresome, however, that you end up paying an additional 20% or so in currency exchange fees because it’s only possible to pay in US dollars, for which my bank charges a sizeable fee. It wouldn’t be so bad if the money were going to MS-Selfie – but it’s just a pointless monthly donation to the bank.

  • “MS is a fiendishly complex disease. No two people have the same disease course or symptoms – nor do they respond to drug treatments in the same way. ….” Just nails it! The go to response to the opinions and good intentions of others. Prof G’s MS-Selfie and your daily posts tell me more about living with a progressive condition which I and my sister live with than any other source. I am so grateful to you.

By Rachel Horne

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