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Reasons for hope, 2016 :)

Discussion in 'General ME/CFS News' started by Sasha, Mar 28, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Excellent post from another thread:

     
    Last edited: Mar 28, 2016
  2. charles shepherd

    charles shepherd Senior Member

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    As far as the UK is concerned, it is clearly not accurate to state 'PACE trial being retracted' and I am not aware of any firm information confirming when and where the proposed clinical trial of rituximab is going to take place

    It might be worth adding that here in the UK there are a number of research studies being funded in relation to autonomic nervous system dysfunction, immune function, muscle and mitochondrial function, neuroimaging, and the ME Biobank at the Royal Free Hospital will shortly be 'open for business' to supply blood samples to researchers who require them
     
  3. Skippa

    Skippa Senior Member

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    Wait, wut?

    PACE trial being retracted?

    Where? Got a link?

    It is worth a 3 day hangover from a bottle of bubbly if that is the case...
     
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  4. Kina

    Kina Admin Support Staff

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    Kati said 'on the verge of being retracted'.
     
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  5. Skippa

    Skippa Senior Member

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    Ahhh maaaannnnn....

    *puts champagne back in the fridge*
     
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  6. Sasha

    Sasha Fine, thank you

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    I've put an edit into the quoted post to clarify the PACE situation.
     
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  7. Tuha

    Tuha Senior Member

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    I always try to be optimistic and many things already look better in Me world. But this schientific world works so slowly. How many times did we already hear that there are promising results and so on? I start to have impression that it can continue like this another 30 years. But till now there is no efective treatement. For me to get hope it means to get an effective treatement which would decrease the level of exhaustion by at least 50 %. The other symptoms for me are not so bad and I got used to them but the exhaustion is something else.
     
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  8. Sasha

    Sasha Fine, thank you

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    I think Jarred Younger's fast-track clinical studies unit is promising for that - plus anything that cracks the mechanism could indicate off-label/over-the-counter approaches without the need for lengthy trials...
     
  9. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    i would think the same if it wasnt for how potent and serious the drugs being researched are. Rituximab & cyclophosphamide, are no diffuse lightweighters in their mechanism of action.. On the other hand, OMI & Stanford are not be frowned upon either, as institutes.

    ME-patients have been promised things before, but not on the same scale that we see in the makings as of now.
     
  10. Tuha

    Tuha Senior Member

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    I follow all these stuffs and I hope it will soon lead to an effective treatement. But what I learnt the last years if scientists say that there are positive results it can take another 30 years to get a treatement option. But let´s hope this time - anyway we dont have another possibility
     
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  11. halcyon

    halcyon Senior Member

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    Rumor is that VanElzakker actually has a study going finally.

     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You could also "do it yourself" if you could get hold of the device.
     
  13. SB_1108

    SB_1108 Senior Member

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    Lipkin Study - Anyone know the status? I thought it was supposed to come out this Spring? Its been one week and I can't take much more! ;)
     
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  14. Navid

    Navid Senior Member

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    Do what yourself, please.
    thanks : )
     
  15. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    This is all I see. Did you edit your post so much that the link is now gone? Thanks.
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  17. Bob

    Bob

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    There are multiple Lipkin studies underway, and I think the largest project is only just getting started, and will take some time to complete yet, so I'm not sure if we should be expecting any major announcements this spring, but sometimes news comes out of the blue, unexpectedly. We'll be sure to share any updates we get.
     
    Last edited: Mar 28, 2016
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  18. SB_1108

    SB_1108 Senior Member

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    Last edited: Mar 28, 2016
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  19. SB_1108

    SB_1108 Senior Member

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  20. Bob

    Bob

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    Jennifer J likes this.

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