News from Germany

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.

 

Automatic translation of three tweets.

Code:

https://twitter.com/iqwig/status/1361696697596993536

https://twitter.com/iqwig/status/1361696823904239619

https://twitter.com/iqwig/status/1361709932144431110

 

I hope that Cochrane will not have a negative impact on this report.

 

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?

 

https://www.iqwig.de/sich-einbringen/betroffenensicht-einbringen/

 

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."

 

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

 

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.

 

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.

 

More good news from Germany:

https://twitter.com/user/status/1375063855097901060

 

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

 

Vascular surgeon with Long Covid:

https://twitter.com/user/status/1401238715356299267


https://www.linkedin.com/pulse/der-umgang-mit-den-sp%C3%A4tfolgen-corona-pandemie-claudia-ellert

 

Can't read the text in the image but comments indicate this is good.

https://twitter.com/user/status/1404768010179596291

 

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

 

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

 

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.