Wednesday, 21 February 2018

Our Prime Minister has the decency to send her apologies

We are hosting our #ThinkHand awareness event tomorrow night. We were hoping to get Theresa May to attend and endorse the event. At least she responded. JK Rowling didn't even acknowledge our invitation. Very poor form? 









What is the #ThinkHand Campaign?
#ThinkHand is simply an awareness campaign with the primary objective to get the wider MS community to focus their attention on hand function, particularly in people with more advanced MS. If you have MS and you lose the ability to walk, your hands and arms become your legs. Hand and arm function keeps you independent and allows you to maintain a reasonable quality of life. Recent clinical trials showing that disease modifying treatments, in people with more advanced MS, may delay worsening of their hand & arm function despite having very little, or no, impact on leg function.
The #ThinkHand campaign has achieved, or is trying to achieve, the following:
  1. To get the research community to study several hypotheses that underpin the science behind the preservation of hand function in MS and to design better trials for people with more advanced MS. 
  2. Design, test and validate an environmentally friendly cardboard 9-HPT to allows pwMS to self-monitor their arm & hand function. 
  3. To survey UK MSologist’s attitudes to the importance of hand function in MS. 
  4. To perform a clinical trial to study the effect of subcutaneous cladribine in MS wheelchair users (Chariot-MS Study). 
  5. To challenge the NHS England guidelines for stopping DMTs when people with MS develop secondary progressive MS and/or start using a wheelchair. 
  6. To get the pharmaceutical industry to do trials in more advanced MS focusing on hand & arm function as the primary outcome. 
  7. To validate the 9HPT as a primary outcome measure in clinical trials. 
  8. To develop a new personalised, or humanised, outcome measure to assess hand function in MS. 

13 comments:

  1. Did you invite Minister for Health? Or maybe the Chancellor to point out cash savings from #ThinkHand... keeping people independent and active, less community and residential care, fewer hospital admissions....not to mention low cost of #ChariotMS and ongoing low cost of #cladribineinjections until such time as Pharma get on board and develop something even better :)

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  2. The prime minister probably has staff whose job it is to respond to all such requests

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    1. How does jk rowling not know you are the next ccsvi? A number of your theories have been wrong- raltegravir and other money you have taken from the public without results. Good to be cautious.

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    2. As a writer JK I am sure can read...and if you read you can see it is based on biology and fact not fanasty like CCSVI.

      Next if you are going to have a pop at us, you need to get your facts straight. The charcot one project was funded by American Merck and not the public, because it was pharma funded they used raltegrovir, rather than HAART which would have been more ideal. I never understood the logic of an anti-integrase as the HERV has integrated, but there was the anecdote that raltegrovir worked.

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    3. When will you guys ever be modest and admit you get things wrong. What happened to the crowd funded study? Don't you feel guilty about keeping it quiet and asking for more money. Hope this doesn't give you another heart attack.

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    4. Sure I get things wrong.... publishing this comment is one example

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  3. will you be sending information to the Prime Minister and the Minister for health following the outcome of the meeting this evening?
    Yes, a letter was sent, but we honestly need the content acknowledged and understood.
    Cannot believe JK Rowling could not even be bothered to reply. I understand she must get asked by a lot of charities for financial help but obviously this charity is relevant to her and as a consultant writing to her, you would think she would take note.

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    1. Maybe because this is happening in England rather than Scotland, where her generous donation for MS has been siloed?
      Maybe we should move the team to Bonny Scotland?

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  4. I think you're kind of setting up Rowling to fail here. I'm no Potter fan, but Scotland is a global hotspot for MS and there are good research centres in Scotland. It's not unreasonable for her to channel her funding the way that she does. Maybe not just think the worst?

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  5. It is a little disturbing to see that such studies might get funding
    http://www.psypost.org/2018/02/neuroimaging-study-finds-heightened-brain-response-seeing-people-different-ethnicity-50789

    but real patients cannot get their drugs.


    However, comparing the prime minister with a philanthopist only blurs the political responsibilities the prime minister has.


    PS Wondering if Sweden is up to something similar with Rituximab?

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  6. Ya know, you are starting to sound a bit defamatory there. I appreciate that it wasn't the intention, but it's a slippery expensive slope :)

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