August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Artical on fresh evidence on CFS that appeared in Pharmaceutical Journal today

Discussion in 'General ME/CFS News' started by Invisible Woman, Jul 15, 2016.

  1. Invisible Woman

    Invisible Woman Senior Member

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    Never Give Up, Sea, waiting and 19 others like this.
  2. Roy S

    Roy S former DC ME/CFS lobbyist

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    From the article:
    "In addition to the trial with rituximab, the team at Haukeland is conducting a trial using the chemotherapy drug cyclophosphamide. Fluge treated three CFS/ME patients with breast cancer using cyclophosphamide, after which they had remission of their CFS/ME symptoms. A 40-person open-label trial is now underway, with the results expected to be published in January 2017, he says."
     
  3. worldbackwards

    worldbackwards A unique snowflake

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    Poor you.
     
    Justin30, Never Give Up, zzz and 25 others like this.
  4. Bob

    Bob

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    Interesting article. If annoying in places.

    Yes, one side of the debate says 'recovery' should represent an improvement in health and a return to ordinary activities, whereas the other side of the debate says that 'recovery' should represent a deterioration in health after treatment and severe physical impairment.

    Hmm.. I can't imagine why there were a flurry of angry responses from patient groups when deterioration was mislabelled as "recovery"! These patient groups are soooo boring and pernickety about details sometimes!
     
    Last edited: Jul 15, 2016
    Never Give Up, Sea, Marky90 and 28 others like this.
  5. worldbackwards

    worldbackwards A unique snowflake

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    Doesn't this contradict the research that said that outcomes were worse in a clinical setting? And what does this mean exactly? That after 2.5 years they were no better than having had no treatment? Or aren't we mentioning that? Again.
     
    Never Give Up, Sea, Woolie and 9 others like this.
  6. Bob

    Bob

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    The large study (see below) by Collin, and his colleague Crawley, of clinical settings in England found CBT & GET had worse outcomes in clinical settings than in the PACE trial. Importantly, there were no significant improvements in (self-report) physical function after treatment...

    Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database.
    Crawley E, Collin SM, White PD, Rimes K, Sterne JA, May MT.
    QJM. 2013;106:555-65.
    http://www.ncbi.nlm.nih.gov/pubmed/23538643
    http://forums.phoenixrising.me/index.php?threads/treatment-outcome-in-adults-with-cfs-a-prospective-study-in-england-based-on-the-cfs-me-nod.22583/
     
    Last edited: Jul 16, 2016
    Justin30, Never Give Up, Sea and 11 others like this.
  7. user9876

    user9876 Senior Member

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    I thought the way the recovery piece was phrased was strange by starting it with a 'n a two-year follow up of the PACE study, published in Psychological Medicine, ' they appear to be confusing the long term followup paper in the lancet with the recovery paper. Or perhaps they are just saying it took them two years to find a definition of recovery that let them claim success.

    What really strikes me is that Miller and Collins appear happy to put opinions into patients mouths without bothering to understand what is being said or reading the criticism. Or worse is they are knowingly misrepresenting the facts. Either way is bad. If people like Collins doesn't understand the substance of the criticism of PACE how can he properly assess stats from other similar studies. Perhaps his comment that his BACME study had roughtly the same results as PACE was more due to seeing movements in only subjective measures.

    In saying CBT is used for cancer Miller shows he really hasn't understood the nature of what is being proposed in PACE and the criticism. Or is just choosing to mislead the journalist.

    However, I thought the journalist had clearly tried to do a good job talking to a range of different people including Fluge and Mella who always come across as very good and careful in what they say. Its just obvious that there is a group of people involved with CBT and GET in the UK who will keep twisting their message to keep their beliefs.
     
  8. Kalliope

    Kalliope Senior Member

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    Agree. It is not often I´ve seen such effort put down in research to an article on ME. I hope the journalist will consider adding a bit on why the PACE-trial is so controversial. I see several have commented on this on Twitter to the journal.

    Also, the shutterstock image to illustrate ME was rather good!
     
    Last edited: Jul 16, 2016
    Marky90, waiting, Woolie and 6 others like this.
  9. Hutan

    Hutan Senior Member

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    From the article
    First I have seen of this; presumably I have missed it being discussed here?

    I think prospective studies have the potential to be very helpful.
     
  10. barbc56

    barbc56 Senior Member

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    Really, the nerve.

    By PACE's definition of recovery, I just keep getting better and better!;)

    @Hutan

    I had not heard of the prospective studies either. That's very encouraging.
     
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  11. Comet

    Comet I'm Not Imaginary

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    :rofl: :lol: :jaw-drop: :wide-eyed: :bang-head: :meh:
     
  12. Bob

    Bob

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    Yes, and that was a weakness of the journalism; the journalist (as is typical) didn't seek opinion about the research evidence and politics from the people who are at the receiving end i.e. patients and patient representatives.
     
  13. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Montoya feels ritux-results supports the inflammation hypohesis?. How exactly? Not even gonna care about the psychobabble turds.
     
    Last edited: Jul 18, 2016
  14. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Awesome that the cyclo resutls are expected jan 2017, i thought we didn`t get them before fall 2017. Also glad to see that Fluge&Mella understands the potential pivotal role of pathogenic plasma cells. that gets me hoping that they might be planning drug regiment-trials.
     

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