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Phase III Rituximab Trial - News

Discussion in 'BioMedical ME/CFS News' started by Scarecrow, Nov 21, 2017.

  1. Jo Best

    Jo Best Established Member (Voting Rights)

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  2. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    That's exactly how I interpreted the original announcement via Marky90.
    Here's hoping but perhaps a bit too much to expect.
     
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  3. Woolie

    Woolie Senior Member (Voting Rights)

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    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
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  4. Woolie

    Woolie Senior Member (Voting Rights)

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    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.
     
  5. Rosie

    Rosie Established Member (Voting Rights)

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    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
  6. zzz

    zzz Senior Member (Voting Rights)

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    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
  7. Rosie

    Rosie Established 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
  8. Kalliope

    Kalliope Senior Member (Voting Rights)

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    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.
     
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  9. TiredSam

    TiredSam Moderator Staff Member

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    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?
     
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  10. TiredSam

    TiredSam Moderator Staff Member

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    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.
     
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  11. Valentijn

    Valentijn Moderator Staff Member

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    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
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  12. Skycloud

    Skycloud Senior Member (Voting Rights)

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    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.
     
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  13. Prairieplant

    Prairieplant New Member

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    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!
     
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  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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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.
     
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  15. Cheshire

    Cheshire Senior Member (Voting Rights)

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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/
     
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  16. Jo Best

    Jo Best Established 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
     
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  17. Kalliope

    Kalliope Senior Member (Voting Rights)

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    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.
     
    Last edited: Nov 27, 2017
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  18. 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.

     
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  19. 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.
     
  20. 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.
     
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