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Phase III Rituximab Trial - News

Discussion in 'ME/CFS research news' started by Scarecrow, Nov 21, 2017.

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  1. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    Scotland
    That's exactly how I interpreted the original announcement via Marky90.
    Here's hoping but perhaps a bit too much to expect.
     
    MEMarge and hinterland like this.
  2. Woolie

    Woolie Senior Member

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    2,918
    Yes, I'm a bit taken aback by the posts above describing PEM as an energy shutdown, because its nothing like that for me. The experience after exertion is more like I've stirred up a hornet's nest of nasty fluey sickness, aching and soreness.

    I'm weird, and don't think I'm a typical case at all. But it just goes to show PEM may be many things to many people.
     
    Last edited: Nov 26, 2017
    Trails, MEMarge, ukxmrv and 11 others like this.
  3. Woolie

    Woolie Senior Member

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    2,918
    Presumably, when Fluge and Mella analyse their adverse effects data, they'll be able to tell us if there's any evidence for a subgroup getting worse on ritux. It seems to me its entirely possible, given that ritux is an immune suppressor.
     
  4. AliceLily

    AliceLily Senior Member (Voting Rights)

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    1,734
    I wonder if it is neuro-immune induced weakness that some of us are feeling as well.

    When my ME is severe, or I have accumulated too many "over-doings" over a period of time I experience as part of the PEM experience 'what feels like' a neuro-immune weakness. I barely can look after myself because of the weakness. It feels like a energy shutdown due to the weakness. I can't explain it any better right now. The weakness is dense and it makes one feel very fragile, 120 years old.

    I get the flu-like symptoms as well with PEM. The summer months not so bad.
     
    Last edited: Nov 26, 2017
  5. zzz

    zzz Senior Member (Voting Rights)

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    214
    Location:
    Oregon
    Admin edit: Off topic text discussing adverse effects of Rituximab has been moved to this post in a new thread - https://www.s4me.info/index.php?thr...adverse-effects-of-rituximab.1242/#post-20907

    I'm sure it is. The ICC definition for ME replaces "PEM" with "PENE" - postexertional neuroimmune exhaustion. As soon as I heard that term, I thought, "Yeah, that's it!" In the ICC, it is the only symptom that is compulsory in order to be diagnosed with ME.
     
    Last edited by a moderator: Nov 26, 2017
  6. AliceLily

    AliceLily Senior Member (Voting Rights)

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    Thanks for mentioning this @zzz I must read through the ICC definition again and refresh my memory. Good to see ICC has this 'Pene'.

    I hope they describe a weakness + exhaustion but I will check if they do. The weakness part should also be in the description.
     
    Last edited: Nov 26, 2017
  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    6,237
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    Norway
    Yes, same here. I experience it as a flare-up of symptoms. Also, for me, a crash is an extreme version of PEM, but I see others use crash and PEM as the same thing. It is a bit confusing..

    ---

    By the way, thought you guys should see this tweet from Wesseley about RituxME as a response to Henrik Vogt's gloating tweets a couple of days ago.
    https://twitter.com/user/status/934695566889701376
     
    Webdog, Hutan, hinterland and 12 others like this.
  8. TiredSam

    TiredSam Committee Member

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    10,482
    Location:
    Germany
    Wessely is trying to stop his followers gloating because he's finally realised how counter-productive it is, having ended up with egg on his face every time he's opened his mouth recently. Anything else he or the SMC said would only lead to them being taken apart and made to look as stupid as they are yet again. SMC silent, Wessely careful not to gloat. Who'd have thought that even they would be capable of reviewing their disastrous PR gaffs of late?

    Simon Wessely starting a sentence with "No one should mock ...", I've lost count of the amount of times that guy has broken my irony meter. Will he be applying his newfound wisdom "One result rarely settles anything" to the PACE trial?
     
    Joh, MEMarge, Awol and 15 others like this.
  9. TiredSam

    TiredSam Committee Member

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    10,482
    Location:
    Germany
    Wessely's weasel-words from 2015:

    For someone whose ship is such a thing of beauty, he seems remarkably keen to be prepared to jump off it when the time comes.
     
    Barry, Viola, Ron and 12 others like this.
  10. Valentijn

    Valentijn Guest

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    2,275
    Location:
    Netherlands
    It was a bit odd that he he seemed to be happily sailing along with the rest of the crew for so long after saying "bon voyage" to ME/CFS. Now I realize he'd merely relocated from the captain's seat to an unlaunched life boat to prepare for the inevitable :rolleyes:
     
    Last edited: Nov 26, 2017
    Webdog, MEMarge, Barry and 10 others like this.
  11. Skycloud

    Skycloud Senior Member (Voting Rights)

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    2,187
    Location:
    UK
    SW has his ducks in a row for a happy future. I wouldn't be surprised if from his perspective he can afford to loosen his grip on PACE; his position in the establishment is secure, his image well protected. I expect his income is too.

    He's not always right though, is he.
     
    Webdog, Awol, Barry and 6 others like this.
  12. Prairieplant

    Prairieplant New Member

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    3
    Location:
    Chicago area
    This was a wonderful translation by Anna Mitchell, making it clear to me where this trial stands, as clear as it can be until the paper is published. I wanted to read what was at the second link quoted from her post about the patient who recovered & spent the day making dinner, but it does not work, says the item is not found at aftenposten.no. I figured I could put it through google translate once the right url is available. Thanks!
     
    Awol, Barry and Inara like this.
  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    6,237
    Location:
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    Apparently this was NOT said after all. No numbers were given, according to another attendee.
    Guess we'll have to wait for the publication.
     
    Hutan, hinterland, Joh and 11 others like this.
  14. Cheshire

    Cheshire Moderator Staff Member

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    ME Association Statement: Negative phase III clinical trial result from Norway for Rituximab in ME/CFS
    http://www.meassociation.org.uk/201...rway-for-rituximab-in-mecfs-27-november-2017/
     
    Justy, TiredSam, Jan and 15 others like this.
  15. Awol

    Awol Senior Member (Voting Rights)

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    Thank you @Prairieplant :) The link doesn't work as it is a copy-and-paste of an insert in the main article, and I don't know what the full link is, but these are the articles on Aftenposten tagged as ME: https://www.aftenposten.no/tag/ME
     
    Inara, Esther12 and Andy like this.
  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Location:
    Norway
    One of the biggest newspapers in Denmark, Politiken, writes about RituxME and the negative results

    Håb brister for kronisk trætte patienter: Kræftmedicin hjælper ikke
    Google translation: Hope fails for chronically tired patients: Cancer medicine does not help

    The article also contains a bit on the ME-debate in Denmark and it mentions the IOM-report.

    The sick no longer wish that the disorder, as is the case in Denmark, should primarily be remedied by cognitive behavioral therapy and so-called graduated training, in which the sick person should slowly have sustained his physical ability. Especially in England, for a couple of years, there has been a violent showdown with the psycho-somatic approach to suffering, which we also use in Denmark.

    Edit to add tweet about the article from the journalist, if anyone wants to "like" or retweet or engage otherwise. He participated on the Europe-premiere of Unrest in Copenhagen and has written a few decent articles on ME. One where Norwegian experts were criticising Denmark for defining ME as psycho-somatic.
    https://twitter.com/user/status/935139365482835970
     
    Last edited: Nov 27, 2017
    Jan, Indigophoton, Valentijn and 6 others like this.
  17. Esther12

    Esther12 Senior Member (Voting Rights)

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    I thought that this bit really reflected the Fink spin on things, but other than that it's not too bad.

     
    Inara likes this.
  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Yes, it isn't perfect, but considering it is from Denmark, this isn't bad.
     
  19. Inara

    Inara Senior Member (Voting Rights)

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    Sounds not so good to me... :(
    "The sick no longer wish...[CBT, GET]" (sounds like patients are little children who should get reasonable at last)
    "Tired patients..."

    My opinion may be unjust, then I excuse.
     
    Wonko likes this.
  20. Andy

    Andy Committee Member

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    21,803
    Location:
    Hampshire, UK
    Comment from Charles Shepherd
    http://www.meassociation.org.uk/201...rway-for-rituximab-in-mecfs-27-november-2017/
     
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