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News from Germany

Discussion in 'Regional news' started by TiredSam, Aug 28, 2019.

  1. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    3,494
    Location:
    Belgium
    Looks like really positive news.

    EDIT: Germany is the largest and most powerful European country. If they change course and act for ME/CFS patients, other countries might follow.
     
    Last edited: Dec 17, 2020
    alktipping, Hutan, Dolphin and 12 others like this.
  2. Sean

    Sean Moderator Staff Member

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    7,044
    Location:
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    Looks like good news. All the best with it. :thumbup:
     
    alktipping, Hutan, MEMarge and 4 others like this.
  3. Andy

    Andy Committee Member

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    21,810
    Location:
    Hampshire, UK
    Automatic translation of three tweets.
    Code:
    https://twitter.com/iqwig/status/1361696697596993536
    
    https://twitter.com/iqwig/status/1361696823904239619
    
    https://twitter.com/iqwig/status/1361709932144431110
     
    alktipping, cfsandmore, diwa and 6 others like this.
  4. lycaena

    lycaena Senior Member (Voting Rights)

    Messages:
    195
    Location:
    Germany
    I hope that Cochrane will not have a negative impact on this report.:nailbiting:
     
    alktipping, cfsandmore, diwa and 3 others like this.
  5. Andy

    Andy Committee Member

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    21,810
    Location:
    Hampshire, UK
    I note that they say that interested parties will be able to comment on the report plan, does anybody know who counts as an interested party, as this might be something that the forum can comment on?
     
    alktipping, Hutan, Snowdrop and 3 others like this.
  6. lycaena

    lycaena Senior Member (Voting Rights)

    Messages:
    195
    Location:
    Germany
    https://www.iqwig.de/sich-einbringen/betroffenensicht-einbringen/
     
    Andy likes this.
  7. Sphyrna

    Sphyrna Established Member (Voting Rights)

    Messages:
    71
    Location:
    Germany
    Well, I hope this time they'll actually try to assess risk of bias with something akin to the GRADE system, unlike the phoned in RKI and DEGAM approach, which was more along the lines of "Checking if the paper is labelled as an RCT, disregarding how well "controlled" it really is, or a systematic review, and calling it a day."
     
    Wyva and Andy like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,299
    Location:
    Canada
    Translation:

    Covid19 and the long consequences: under the chronic fatigue syndrome #CFS Hundreds of thousands are already suffering in Germany today. The number is likely to increase significantly due to Corona. Our detailed film about it now on our #MONITOR Channel on YouTube.​

    https://twitter.com/user/status/1368971416071270405
     
  9. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,368
    Location:
    Budapest, Hungary
    What is German PwME's opinion on the organization Fatigatio? The Mepedia article doesn't really paint them in a very good light.

    https://me-pedia.org/wiki/Fatigatio_e.V.

    (I actually have a personal reason to ask this, not just out of curiosity.)

    Edit: For some reason the page doesn't show up here, but it's there on Mepedia and if you google it, you can read it.
     
    Last edited: Mar 8, 2021
    Invisible Woman, mango and cfsandmore like this.
  10. Leila

    Leila Senior Member (Voting Rights)

    Messages:
    1,157
    In the past, not so good, actually severe misrepresentation. Better now with new chairmen. Edit: But I haven't followed them much since I quit membership a couple of yrs ago.

    "Deutsche Gesellschaft für ME/CFS" is doing a good job on public communication.
     
  11. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,529
    Location:
    Aotearoa New Zealand
    From this thread: Possibility of ME or PVFS after COVID-19, Long Covid
    German politician Karl Lauterbach has been tweeting about opening up society and mentions ME/CFS as one of the reasons for being careful. According to wikipedia he's a professor of health economics and epidemiology and is a Member of the Bundestag. His acknowledgement of the severity of the illness and the lack of any therapy - it seems a sign of a changing approach to ME/CFS in Germany (?)

     
  12. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
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    Location:
    Belgium
  13. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
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    Location:
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    There appears to be another region taking initiative, if I understood this correctly, saw several things about this in my twitter feed today:

    https://twitter.com/user/status/1400765665070522372
     
    Joh, MEMarge, Hutan and 4 others like this.
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    12,299
    Location:
    Canada
    Joh, MEMarge, Hutan and 3 others like this.
  15. rvallee

    rvallee Senior Member (Voting Rights)

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    12,299
    Location:
    Canada
    Joh, diwa and Peter Trewhitt like this.
  16. Hutan

    Hutan Moderator Staff Member

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    26,529
    Location:
    Aotearoa New Zealand
    MEMarge, Peter Trewhitt and Trish like this.
  17. alexoffline

    alexoffline Established Member

    Messages:
    9
    The IQWIG revealed their method of creating a report about the current situation of ME/CFS for the german government.

    https://www.iqwig.de/download/n21-01_me-cfs-aktueller-kenntnisstand_berichtsplan_v1-0.pdf?rev=209654

    I wonder if we have any members here who are familiar with such a process. First of all its disappointing that they want to publish a first version of this report in summer 2022. And after that it will take another year until the report is finalized and sent to the government. Nothing will change for ME/CFS in germany until they have this report in 2023.

    However the most worrying part about it is... what if after 2023 they are finally done with the report and come to the conclusion that CBT/GET are an effective treatment for ME/CFS.

    On page 17 they say:
    "Da es sich bei der vorliegenden Fragestellung um eine Evidenzkartierung handelt, werden keine Aussagen zum Nutzen und Schaden getroffen. Jedoch wird – falls sich Evidenz in ausreichender Qualität abzeichnet – eine Auswahl von 2 Therapieverfahren getroffen, für die Nutzenbewertungen durchgeführt werden (siehe nachfolgenden Abschnitt)."

    "[...], no statements on benefits and harms [of therapeutic programs] are made. However, if evidence of sufficient quality emerges, a selection of 2 therapeutic programs will be made to evaluate if they are useful (see following section)."

    And I really cant shake off this bad feeling that they already paved the way for a CBT/GET homage with this sentence.

    We still have a month time to give them a feedback. I have to admit that I'm out of the loop with all the studies for ME/CFS especially regarding CBT/GET so I can't tell if there are harmful studies out there, that would actually be included in their evaluation by their criteria.

    I'd be happy to help with translating the important parts of this pdf if anyone here is knowledgable enough to interpret it.

    Following critera need to be matched for a study to be evaluated in their report:
    1. Patients with ME/CFS (at least 80% of the patients in the study need to have ME/CFS)
    2. Results of a therapy program are for ME/CFS
    3: study needs to be randomized controlled trial, have evidence based guidelines and a HTA report.

    We have 1 month to give them our feedback.

    Edit: Here is the file translated with DeepL.
    https://1drv.ms/b/s!AohT_k4FnlZ-hBt1MkxzGTFWtjtd?e=2LcvbX
     
    Last edited: Jul 1, 2021
  18. Hutan

    Hutan Moderator Staff Member

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    Location:
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  19. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
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    Location:
    betwixt and between
    Documentary about living with ME/CFS on French-German public service TV channel ARTE, 10.07.2021, 22:00

    (also available on the website during the day)

    Die rätselhafte Krankheit - Leben mit ME/CFS - Die ganze Doku | ARTE

    https://www.arte.tv/de/videos/096283-000-A/die-raetselhafte-krankheit-leben-mit-me-cfs/

    Automatic translate with deepl:

    The mysterious disease - Living with ME/CFS - The whole documentary | ARTE

    Code:
    https://twitter.com/dg_mecfs/status/1406263092019970053
    Edit: Time
     
    Last edited: Jul 7, 2021
    sebaaa, diwa, rvallee and 7 others like this.
  20. Leila

    Leila Senior Member (Voting Rights)

    Messages:
    1,157
    I'm very ecxited about this documentary, ARTE is well known for their high quality content.

    Unfortunately, their ratings are way below the ones of the main channels with far worse content.

    But it's a good first step.
     

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