Monday, 6 March 2017

#PoliticalSpeak & #BrainHealth: we are finally meeting some politicians

Finally we get to present our Brain Health policy document to the European Parliament. #PoliticalSpeak #BrainHealth #MSBlog 

I had flu about 2 weeks ago and I have been floored with post-viral fatigue. I have never had it this bad before. I have literally found it impossible to get through a working day. I get home each evening and crash. I have spent two weekends in a row prostrate on the couch drifting in and out of sleep and feeling miserable. I have had to limit my exercise to a minimum. I even find walking the dog an effort, which induces a tachycardia. I thought I was the only one affected, but I have found two other people with the same complaint as me; both are men so this must have been a virulent strain of 'man flu'

Joking aside, if this is how people with MS fatigue feel I now understand why 50% of them are unemployed within 10 years of diagnosis. Working, or trying to work, when you are used to burning the midnight oil and getting by with 4-5 hours sleep a night is not easy. I am so behind in my work that I have no idea when, or if, I will catch-up. Apologies to my colleagues and acquaintances if you are waiting for me to deliver a completed task; I will get to it eventually.  

I have had to stay up tonight to try and finish a presentation for a very important meeting we are having with the European Parliament on Tuesday. Gisela Kobelt and myself are finally going to make the case to MEPs for 'early effective treatment in MS'; i.e. we are presenting our 'Brain Health: Time Matters in Multiple Sclerosis' policy to them. I sincerely hope we get some traction with them and that they will help smooth the variation of MS practice across the EU. 

If there is anything you want us to discuss with MEPs that is MS-related can you please let me know. Thanks. 

4 comments:

  1. It's very encouraging to know that you have this opportunity to promote 'BH - Time Matters' with European politicians. But is it fair to say that another vital component to this presentation is missing - that of numbers?
    This is clumsily put, but for nations to put sufficient resources into cancer care and reduction in smoking, and now the focus on dementia and a Type Two Diabetes here in the U.K, it seems that there has to be huge population numbers involved. As MS is the predominant neurological condition worldwide, it's gobsmacking there aren't figures being accurately collated - such as the Scottish register. This is reinforced by the distinct possibility that numbers are increasing - improving diagnosis or something scary going on?
    Either way, the sad reality is that the emphasis on economic and social consequences - those things that grab the attention of policy makers - are likely to be undermined without the addition of accurate numbers - estimates just don't hit home do they?!
    Best wishes for the best possible reception to your presentation. Despite my point about numbers, it represents a positive step.

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  2. Are you sure it wasn't just a bad cold?

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    1. Don't know..what if they heard this from another London
      consulting neuro..?..makes it sound like wasting money..

      "Based on the very thin evidence of favorable outcomes and the high cost of maintaining treatment, the option of continuing treatment is not feasible, he said. Instead, he argued that clinicians should focus on offering patients an optimal treatment withdrawal process. He stated that many patients feel apprehensive when faced with the prospect of stopping treatment, and patients should be offered counseling and a slow withdrawal process."

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  3. I'm tired of hearing about fatigue ;-)
    I am so fortunate, as are you flu-less, not to suffer.
    Best of Brussels luck and numbers (above) make sense and, for me, fits with what you've said previously about not really being able to say where the edges of the MS circle can be drawn or even, at your most radical, that there's no such thing as MS.
    There's a thought - off to brief MEP's about a disease that does not exist!

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