Saturday, 7 June 2014

Unrelated Blogger Comments June

When you have something to say that is unrelated to the thread you can post here.



21 comments:

  1. Prof M,

    What was te point behind your whire knights / phoenix post?

    ReplyDelete
    Replies
    1. I was going to tell all at the Research Day next week, but perhaps not yet the time to spill the beans, so you will just have to suffer the posts.

      Delete
    2. I find the white knight posts reassuring even though I have no clue what exactly they stand for - they are a good sign for sure.

      Delete
    3. Exactly! I agree with the Anonymous 9.07

      Delete
    4. Mouse, i find the white knight post cruel (and I may boo you at the research day). We live on the speck of hope we get from this site. Can't you give us a clue as to the topic eg nuroprotection, repair or dmt (?cladribine)

      Delete
    5. Give us a clue.
      Nope......otherwise it could be White knight "dead in a ditch", which it may well be anyway.
      I am just a scribe......

      Delete
  2. Professor G, I have read in the past how you cite the advances in the treatment of Rheumatoid Arthritis as a goal for how much further we could advance in treating MS. I was just curious if we use the ability to work as a quality of life indicator, i had read years ago that Rheumatoid Arthritis stopped many people from working fairly quick... similar to how they say 50 percent of MSers are unemployed after 10 years.... have there been recent studies to indicate if people with RA are likley to work longer now with effective DMARDS? As an Mser who loves my job and hopes to be able to do it for a while I wonder were the stats about 50 percent unemployment after 10 years based on studies before effective DMTS, or more recently in regards to ms? Do you think that statistic would be different now in ms, also is there any research to see if these numbers have changed with the more effective dmts in ms?... i assume you suspect the ability to work would be preserved longer with early intervention with a highly effective dmt, has any research to this point been done to show this?

    ReplyDelete
    Replies
    1. Dear Anonymous,
      Don't worry too much about the statistics, I have had MS for 28 years, 7 of which have been SPMS, and I am still working. Work is a good provider of routine, and keeps me fitter than I would be if I stayed at home. It also keeps me sane, and keeps my brain more active. I hope work will slow down the cognitive decline, which is already apparent to me, but hopefully not to others.
      I would love to have been on DMT's but they weren't around 28 years ago, and I believe it is too late for me to start on them now.
      Things get harder to do, and I do them more slowly, but I am hoping to work for another few years at least. (To achieve a better pension etc.)
      For most MS'ers progression is slow, and you get time to accommodate and adjust to your circumstances.
      Best of luck, and let's all hope that something will appear in the not too distant future. (And that MS'ers are given the option of trying drugs off licence that are still in phase I or II but which slow promise.)

      Delete
    2. Thank you Andrew. I've had MS for 36 years worked full time until the company I worked for relocated. I've had other illnesses that have not helped my cause. My memory is better than my able bodied peers. I now work part time and have SPMS. Never been on a DMT. I'm glad to hear your blog. The statistics are causing people to worry about something that may never happen.

      Delete
  3. Found it,Any chance of putting this one in lay man's terms ?
    http://www.ncbi.nlm.nih.gov/pubmed/24899728

    Thanks
    Regards as always.

    ReplyDelete
    Replies
    1. Its in ProfGs pile of to-does, but if he doesn't have time...we .will do.it

      Delete
    2. Thanks seen it, if you have time next Saturday might get you to explain what it means :-). Thanks
      Regards as always.

      Delete
    3. It is largely observational as pathology usually is, It says damage occurs in grey matter and this is associated inflammation and oxidative stress as a mechanism for the damage.

      Delete
  4. Prof G is very quiet. Perhaps having a break in his Italian villa or his farm in South Africa. Thank heavens for Prof Mouse.

    ReplyDelete
    Replies
    1. Not far off.....living in a suitcase`... but lack of broad band and having enough free time may be part of the equation.

      Delete
  5. Critical review of outcomes used in MS clinical trials
    The MS UK website has a video by Prof Ebers where he says that suppressing relapses has no impact on long term outcomes / dmts have no impact on disabilty. He says that once you are SP the time to cane / bed / dead is the same. Any thoughts on this? Pretty depressing stuff. Would like to ask him what benefits MSers have seen from his decades of research.

    ReplyDelete
    Replies
    1. Any thoughts of this.....

      Please read through this blog there are loads of posts on this very subject and how in the age of highly effective DMT ProfG thinks that is not the case. To not worrying about relapses..tell that to anyone who has had a devastating relapse and they will tell you what they think of that view. Likewise we have discussed the effect of SPMS on progression.

      Delete
  6. Any updated views on the stem cell treatment therapy that seems to be going on for more and more MSers? Is it still 'dont do it'?

    ReplyDelete
    Replies
    1. I have to remain cautious, I ask where is the evidence that they work and promote repair in MS.

      Delete
    2. As a layperson I only see things via Facebook groups! Certainly MSers are heading out there to do it. It would be a shame if nobody were monitoring the process clinically/researchwise. And you are up very late answering questions! :-)

      Delete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.