Monday, 13 July 2015

ClinicSpeak: an MS epiphany

The holy grail of MS research; finding the immune signature of an MS cure. #ClinicSpeak #MSResearch #MSBlog

"What is an epiphany? I am not talking about in the biblical sense."

epiphany
ɪˈpɪf(ə)ni,ɛ-/
noun
  1. 1.
    the manifestation of Christ to the Gentiles as represented by the Magi (Matthew 2:1–12).
  2. 2.
    a moment of sudden and great revelation or realization.



"Standing on the start-line of the Vitality British 10km London run yesterday made me realise how fortunate I am to be in 'good enough shape' and 'healthy enough' to be able to run 10km to help raise money for charity. We always tend to take the things we have for granted until they are taken away from us. It also made me think about what it must be like for someone who develops MS and realises that they may not be able to remain physically active due to the consequences of their disease."

"Three things; (1) we need to make sure we disseminate the knowledge that MS disability, both physical and mental, in the modern era, is tractable (epiphany 1). We now have therapies that can prevent, or at least delay, the onset of disability. We need to get the community to adopt the principle of early effective treatment and treat-2-target. (2) We need to study the immunology of induction therapies in more detail. We have to find the immune, or viral, signature that defines an 'MS Cure' (epiphany 2); we can't expect MSers to wait 20 years to find-out for themselves if they have been cured or not. I know  that latter is the holy grail of MS, but there is no reason why we shouldn't try as a community. (3) We need to improve services for MSers; this is not a national, but an international, initiative. It is only through access to healthcare that we can achieve the above objectives (epiphany 3)."


"A big thank you to the Barts-MS Team - Klaus, Paul, David (aka the MouseDoctor) and Bonnie - for running yesterday. We have almost reached our target of £2000."

4 comments:

  1. There is nothing new regarding the 3 points I made above. I simply realised the importance, and relative urgency, of them.

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  2. Thanks for this. Loosing the ability to do things you loved is a killer. I love the way fundraising for MS often involves running, scaling a mountain, huge long walk - the things many of us have lost. You might want to add repair to your list. If a drug could get me from 4 to 2 on the EDSS, this would be a huge victory against this disease.

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  3. Not 100% sure this is what you meant by epiphany 1, but when I tell people I have MS, I quickly say, "it's not the disease it used to be...treatments over the past 5 years are much more effective." That helps people stop feeling sorry for me, and it's only rarely that I get treated like something's wrong with me. Most people forget over time. I like it that way.

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  4. It's reading things like this that will give peple hope if only a glimmer, I know many may claim to feel the same, but somehow the above is more believable than most
    Your right regarding urgency, families and relationships get torn apart, for every month uou can speed up these epiphany's you could save lives and families, livelihoods and more important than all of this is the future.
    The ability to look forward to a future a life, after all we may only have one

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