1. Guest, to read the 'News In Brief' from w/c 18th June, just click here.
    Dismiss Notice

Pharma industry newsletter on ME/CFS drugs ('Pink Sheet') - Ampligen, Rituxan and KPAX-002

Discussion in 'General ME/CFS News' started by Sasha, Nov 3, 2017.

  1. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    1,546
    Likes Received:
    12,178
    Location:
    UK
  2. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    1,750
    Likes Received:
    8,972
    I've never heard of Kpax-002 till now.
    And i wonder why Ampligen won't do the trial the FDA wants, money, something else?
    And the trial that had no patients should be restarted, i bet between this and the unmentionable forum could we come up with 10 patients...
     
    adambeyoncelowe and Simone like this.
  3. Simone

    Simone Senior Member (Voting Rights)

    Messages:
    104
    Likes Received:
    1,054
    Location:
    Australia
    KPAX-002 is the Synergy trial (methylphenidate plus proprietary mitochondrial support), so named because they noticed that methylphenidate and mito support each yielded modest improvements (though obviously not in everyone), and they wanted to see if there was a synergy if using them together.
    http://www.kpaxpharmaceuticals.com/the-synergy-trial
     
    MEMarge, Indigophoton, Trish and 5 others like this.
  4. Valentijn

    Valentijn Not a moderator

    Messages:
    2,282
    Likes Received:
    13,167
    Location:
    Netherlands
    A combination of supplements and a stimulant, from what I recall. Phase 1 showed it has no effect.

    I think this is the one where they were demanding very specific and rigid dosages. People couldn't start with a smaller dose, or adjust to a smaller dose, etc, if the mandated dose was too high for them to tolerate.
     
    Last edited: Nov 4, 2017
    MEMarge, Trish, Inara and 1 other person like this.
  5. Adrian

    Adrian Administrator

    Messages:
    2,128
    Likes Received:
    10,890
    Location:
    UK
    Did that lead to a high dropout rate? If it does it makes the ITT figures difficult.
     
    MEMarge, Trish and Valentijn like this.
  6. Valentijn

    Valentijn Not a moderator

    Messages:
    2,282
    Likes Received:
    13,167
    Location:
    Netherlands
    I think there were some people who refused to even start on it with the restrictions on dosages. There was someone on PR discussing it - maybe @Gingergrrl ?
     
    Trish and Inara like this.
  7. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    1,679
    Likes Received:
    6,041
    May I ask a side question: I read repeatedly of Vicky Whittemore. That is the Mikovits Vicky Whittemore, isn't it? Has someone an opinion about that?
     
  8. Trish

    Trish Moderator Staff Member

    Messages:
    4,191
    Likes Received:
    27,605
    Location:
    UK
    Are there any trials under way of LDN (low dose naltrexone) for ME?
    I had an idea Jarred Younger was planning this.
     
    adambeyoncelowe and ivorin like this.
  9. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    1,546
    Likes Received:
    12,178
    Location:
    UK
    He talks about it in this video (first on his list, about 1 minute in):

     
  10. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    1,750
    Likes Received:
    8,972
    So they want to use Ritalin with a bunch of nutrients, try it on ME/CFS, Parkinsons and Alzheimers (casting a wide net), patent it ("KPAX002 possesses strong IP protection through 2032") then sell it. So a "drug" made with commonly available ingredients but hike the price :facepalm:
    Anything to make a buck :emoji_face_palm:

    I don't know the specifics but this was not a problem with Rituximab?
     
    adambeyoncelowe, Inara and Trish like this.
  11. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

    Messages:
    625
    Likes Received:
    3,856
    Hi @Valentijn and everyone! I had some trouble last weekend when I tried to join this new board and it would let me read but not reply to posts, post a new thread, or write a PM. Then I had my Rituximab infusion last week and didn't get a chance to try again until tonight but now it is working! Yay!

    To answer your question @Valentijn, it was not me who was discussing the K-PAX trial on PR. It's possible I asked questions about it in one of the threads but it is not something that I ever pursued for myself.
     
  12. Valentijn

    Valentijn Not a moderator

    Messages:
    2,282
    Likes Received:
    13,167
    Location:
    Netherlands
    Drugs which can raise blood pressure are very tricky. Too much, and it can be absolute hell (and even dangerous).
     
    Trish and FreeSarah like this.
  13. Valentijn

    Valentijn Not a moderator

    Messages:
    2,282
    Likes Received:
    13,167
    Location:
    Netherlands
    Whoops, we were referring to droxidopa while neglecting to name it :p I thought that was one you'd considered trying at some point via a certain program/trial, but couldn't due to the dosing being inflexible.
     
  14. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

    Messages:
    625
    Likes Received:
    3,856
    Oh, I'm sorry and must not have read the thread carefully enough and thought you were referring to that K-PAX trial. Yes, I was going to try Northera (Droxidopa) but never did b/c they wanted to start me on a very rigid schedule, combined with the fact that the medication had four food dyes that I would have been deathly allergic to and there was no generic. So I ended up staying with Midodrine and am very glad that I did.
     
    Trish and Valentijn like this.
  15. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    1,750
    Likes Received:
    8,972
    I see. I don't know much about Ampligen so perhaps i should not comment on it, but in the end the FDA is a behemoth...
     
  16. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    198
    Likes Received:
    1,312
    Allele likes this.
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    1,623
    Likes Received:
    18,628
    I was puzzled by this but I think there is no connection. Someone may know for sure.
     
    Inara likes this.
  18. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    1,679
    Likes Received:
    6,041
    Ah, thanks @Jonathan Edwards, I may confuse her with another Ms Whittemore. So many names and people!
     
  19. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    1,750
    Likes Received:
    8,972
    This wasn't the one that approached significance?
     

Share This Page