News from Germany

Automatic translation of three tweets.
The #MECFS project can now be found on our website: iqwig.de/projekte/n21-0… Now we are drawing up a report plan. It is expected to be published in just over three months (May or June). Interested parties can then comment on this, for example

... to highlight aspects that are important for those affected but do not yet exist in them. The public will also be involved in later project steps such as the commentary on the preliminary report. We will then announce this in good time, among other things, by press release.

Because there have been several requests: "Non-drug procedures" is there, because the processing department is called so. Even with "areas of application" (predetermined categories, from which we had to choose something) we do not want to make statements about possible causes o. of the like.
Code:
https://twitter.com/iqwig/status/1361696697596993536

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

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

 
https://www.iqwig.de/sich-einbringen/betroffenensicht-einbringen/
Bringing in the viewpoint of those affected

The central questions in our evaluations and reports are always whether an examination or treatment method prolongs life, whether it reduces complaints or complications and whether it improves the quality of life.

Against this background and on a legal basis, we also regularly involve people affected by diseases (patients and relatives) in our reporting. This is done indirectly through the spokesperson of the Patient Involvement Coordination Committee at the Federal Joint Committee, who is in contact with self-help groups and patient organisations throughout Germany and who seeks and finds suitable partners for IQWiG's work (indirect contact). In addition, those affected can also approach us directly at various points in our work to contribute their views (direct contact).

Translated with Deepl
 
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."
 
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.)

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.
 
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 (?)

(3) Many younger people suffer with them #LongCovid Damages that may accompany them for the rest of their lives. For the #MECFS , a disturbance of thinking, memory and the ability to concentrate that severely restricts the quality of life, we have not yet had any therapy. It is considered incurable
 
There appears to be another region taking initiative, if I understood this correctly, saw several things about this in my twitter feed today:

Auto-translate said:
Today is a landmark day for all patients suffering from #LongCOVID & #MECFS . # With this initiative, Thuringia is taking on a pioneering role in the field of basic research and specific health care issues. I would like to thank the CDU and R2G for their constructive cooperation.
 
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
 
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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

ME/CFS is a devastating disease that affects approximately 300,000 people in Germany alone. So far, there is little help for those suffering from the disease. Many doctors are unfamiliar with the clinical picture and treat incorrectly. But recently something is happening, also due to the Corona pandemic: because late effects of Covid-19 correspond to the typical symptoms of ME/CFS ...

ME/CFS - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - is a severe neuroimmunological disease that often leads to a high degree of physical disability.

17-24 million people worldwide are affected by ME/CFS. In Germany, there are an estimated 300,000, and in France, approximately 250,000. Women are more often affected than men. Researchers believe that no more than half of those with the disease have a diagnosis.
Despite this high number of sufferers, ME/CFS is virtually unknown to the public and physicians, even though it was included in the International Classification of Neurological Diseases by the World Health Organization as early as 1969.
Research is still in its infancy, and there are no drugs or therapies to treat the causes of the disease. Those affected are usually stigmatized as depressed or mentally ill.

The new virus Sars-CoV-2, with which more than 100 million people worldwide have been infected so far, makes the disease particularly explosive: Some still suffer from late effects weeks and months after surviving the infection - with symptoms similar to those of ME/CFS sufferers.

The documentary accompanies sufferers and their relatives as well as internationally renowned researchers and discusses the current state of science. They all bring the drama and hardship of the disease to life and dispel myths that have hindered scientific progress for decades.

Translated with www.DeepL.com/Translator (free version)



Code:
https://twitter.com/dg_mecfs/status/1406263092019970053

Edit: Time
 
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Documentary about living with ME/CFS on French-German public service TV channel ARTE, 10.07.2021, 22:40

(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

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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