Tuesday, 8 September 2015

PoliticalSpeak: are we ready to promote the concept of brain health in MS?

Is your MS team an early adopter? #MSBlog #MSResearch #PoliticalSpeak

"In April last year one of the anonymous commentators mentioned that 'It is no wonder there are legions of neurologists who disagree with Giovannoni'. At the time this observation, or criticism, may have been correct. However, I didn't take the criticism lying down and prepared a response on the diffusion of innovations and adoption. This latter post was also heavily criticised. As the Mouse Doctor has said many times before, you have to develop a very thick skin to become a blogger."


"I subsequently got involved in the development of a policy document to try and change the way we view and manage multiple sclerosis. I was very fortunate to have professional help from the Oxford Health Policy Forum and a group of like-minded colleagues. It has been a privilege and a pleasure working on this project with all those concerned; thank you."

"The document simply promotes the messages I extol week-in and week-out on this blog.  To manage MS holistically, to empower MSers, to involve MSers in shared-decision making, to make the point that time matters and that we should be aiming to maximise the lifelong brain health of people with MS (diagnose early, treat early, treat effectively, monitor & document actively, treat-2-target)."

"The document will be made available via the web after its launch on the 6th of October. If anyone is attending ECTRIMS in Barcelona next month you may want to attend the launch meeting. Please RSVP online at www.msbrainhealth.org."


CoI: Please note that the launch symposium is being funded by grants from AbbVie and Genzyme and by educational grants from Biogen, F. Ho mann La-Roche and Novartis, all of whom had no inf uence on the content of the programme or document.

10 comments:

  1. MSers world-wide should feel incredibly grateful that such a knowledgable individual is so genuinely concerned about preserving brain health. I know that my neurologist (in Australia) follows Prof G's thoughts & has told me that he is renowned for telling it how it is, regardless who is sponsoring whatever event at which he is presenting. Respect. With Prof G leading the way in innovation & treatment approach, MSers have the best chance at preventing ongoing damage & achieving enduring remission. There will always be neurologists who believe 'near enough is good enough' & for risk adverse conservative MSers, the less effective but low risk treatments will remain. But it would be good to have induction treatments available as a FIRST-line option, with patients strongly involved in taking up this option.

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  2. Dear Prof G.

    Firstly; I think the cover art is excellent and thank you for being a thought leader.

    How can we detect earlier? Would mass MRI screening work?

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    1. Re: "How can we detect earlier? Would mass MRI screening work?"

      No I think we need to develop a risk calculator and screen at-risk people. Mass MRI would result in too many false positives and unnecessary investigations.

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    2. Re: "Firstly; I think the cover art is excellent and thank you for being a thought leader."

      Thank you; the cover art was chosen to shock and make you think about the brain differently. I am not a thought leader; using the term to describe me is plain wrong. I am more a plagiarist;. All the concepts around treat-2-target of NEDA have been cloned from rheumatology and oncology; time is brain from the storke field and brain health from Alzheimer's. Sorry to disappoint you there is nothing original here. The only thing that is novel is bringing these concepts together under the MS umbrella.

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  3. Excellent. But not so inspiring in terms of PPMS, I feel. I'm doing all I can to maximise my general health and fight as well as live with PPMS. I keep my ear to the ground regarding new drugs and therapies which may help with that, but thus far, there has been nothing. The only thing that the medics can offer me is physiotherapy (which I certainly appreciate). So "maximising lifelong brain health" is left to me, alone.

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    1. Re: "But not so inspiring in terms of PPMS..."

      Progress in PPMS will come; there is a lot happening. I suspect the same principles will apply for PPMS as they do for RRMS. Time matters!

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    2. Re "Progress in PPMS will come; there is a lot happening."
      I'm not Prof G bashing - it's not his fault, but I just wish the progress with progressive MS could happen a lot faster.
      Time does matter - and the more time that passes the less I am able to do. I look back at what I could do a year or two ago, and what I can do now - and it is getting to be less and less. As a single person with absolutely no family support my hopes of an independent and reasonably fulfilling life in defiance of my MS are becoming less and less also. Having been a very capable, independent, and self-sufficient person all my life the prospect of being dependent on paid care-givers is very scary and depressing. Some days it seems like a move to some sort of care home or supported accommodation is getting closer at a rate which is way too fast for my liking.

      So - turbo-charging the progress with progressive MS would be wonderful for so many - including those who are RRMS now but will most likely become SPMS in the future

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    3. What a heart breaking comment; we will try and speed things up. But we only have so many hours in a day.

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    4. I can understand the fears and frustrations of Anon 5:46 completely. Although I have the sheer good luck / fortune of loved ones around to help, I _hate_ asking for assistance with things. If someone had said to me 10 years ago that, before the age of 40, I would not be able to stand on a step ladder to change a light bulb, or carry something requiring two hands, I would have had something very brusque, flippant or rude to say to that. I try to remember that progression can be slow and can plateau. But I too look for that light appearing on the horizon at last and I keep in mind what my beloved grandfather said when times were tough: "Hang on till daylight."

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  4. p.s. "Progress in PPMS will come; there is a lot happening." Thank you for this assurance and all that you and your team do for PPMS/SPMS.

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