New Documentary "Living with Chronic Fatigue Syndrome"

The German/French TV channel ARTE premiered a documentary yesterday: "Living with Chronic Fatigue Syndrome". German and French can be chosen as languages, subtitles are available in English, Italian and Spanish.

It can be viewed online here and will also come to YouTube:
https://www.arte.tv/en/videos/096283-000-A/living-with-chronic-fatigue-syndrome/

It features three pwME, one pwLC, their carers and researchers Scheibenbogen, Behrends, Prusty, Fluge and Mella.

Sorry for crossposting – but I thought this documentary deserves its own thread.

 

https://twitter.com/user/status/1413845398607835147



https://twitter.com/user/status/1413899045970583556

 

Here's an interview with the director of the documentary.

German: https://www.mecfs.de/interview-mit-regisseurin-daniela-schmidt-langels/

Automatic English translation: https://translate.google.com/transl...view-mit-regisseurin-daniela-schmidt-langels/


https://twitter.com/user/status/1413865266988077060

 

I watched it yesterday with my wife. I appreciate that it was made and hope it will increase awareness.

However I found it impossible to watch from the point of view of someone who doesn't have ME or is new to the subject, and as I have seen a few films showing the daily routines of PWME already it didn't grab me. At one point my wife said "Why do we have to watch him brushing his teeth? I don't want to watch someone brushing their teeth". I explained that the fact that even brushing your teeth can be so exhausting is the point, but if it has to be explained maybe the film could have made the point better? We both agreed that he shouldn't have tried to brush his teeth standing up anyway. I found it more interesting once the film moved on to long covid.

I was a little uncomfortable with the assertions of what we know (eg Scheibenbogen, or the way she was edited), and was impressed with how Prusty was much more measured and emphasised that we are at a very early stage. I was unimpressed with the way the film tried to offer hope that we are on the edge of a breakthrough, because aren't we always? After years of there always being someone claiming to be on the edge of a breakthrough I can't get excited or inspired or hopeful every time. Does every film about ME feel it has to offer hope that we are on the edge of a breakthrough? On the other hand one of the PWME did say that they realised how long-term their illness and situation was.

There are a lot of good things about the film, and nothing bad. The fact that it didn't grab me or keep me riveted (which some ME documentaries have managed to do) may just be a reflection of how jaded I am and unable to come to the subject with fresh eyes.

 

https://twitter.com/user/status/1413890764757782529

 

I watched yesterday, and thought it was good. Too many assertions about etiology and following particular hypotheses. And I did not understand the German doctor who used length of crash to distinguish between PVFS and ME/CFS. I think she just made that up.

 

Now available on YouTube

https://www.youtube.com/watch?v=poNH6YNIYtI

 

Just watched on YouTube and thought it was well done. The people with ME in the film gave a realistic impression of living with ME and the interviews with several researchers generally gave the overall impression that we need a heck of a lot more focus on ME to get anywhere.

Good to see awareness increasing in Germany.

Minor point and question.

I hadn't realized that Fluge and Mella think that the lower maintenance dose they ended up giving people in the Rituximab Phase 3 study may have been a factor in the failure of the treatment. Is this still the case or has their thinking changed on this?

 

why 'Living with Chronic Fatigue Syndrome'?, (tags 'fatigue' and 'chronic fatigue').

eta: have watched it now, shame about the title because it was good.

 

Possibly because most people will have been diagnosed with CFS rather than ME & maybe will attract a wider audience?

 

Chronic Fatigue Syndrome is what it is known as in Germany. That's what's on my diagnosis from the Charite. M.E. is barely used by anybody.

 

This film had so much to commend it. I'd love to show it to people I know, except for one thing: the yellow subtitles on pale background are almost impossible to read, and I found it frustrating to try to follow what was being said because of this.

 

Not saying the title should have been just 'living with ME' instead; maybe something more ambiguous to 'appeal' to all and more likely to be watched by those outside the community.

It would be good if someone could link this video on twitter re any discussion of the Panorama Long Covid documentary that was on last night;
see https://www.s4me.info/threads/artic...ndings-bring-hope-for-diagnostic-tests.21428/

to say 'there are similarities' would be an understatement.

 

The German, English and French titles are different. The German title is: "The mysterious disease – Living with ME/CFS". It has been criticized, as the disease is not mysterious but ignored and underresearched.

 

So that makes even less sense! Why not just call it 'Living with ME/CFS' in all three languages......talk about 'complex' HHSH

 

I'm afraid i only got a few minutes in, the visual effects of all those little pictures moving about etc, are unwatchable for me - i cant read words while also processing high intensity visual movement (anything with flashing/several items moving at the same time etc).

- same for web pages with moving adverts, sporting events with moving flashing bilboards behind the action - all totally inaccessible.

 

Nice video, thanks for sharing. I liked the way they incorporated both the patient experience and the research being done by the German and Norwegians. Prusty seemed awfully optimistic that some breakthrough could be found in a short amount of time despite such limited government investment.

I think they captured the varying levels of severity well. Given that the vast majority of my interaction with pwme is over the internet and not face - to - face it is always interesting to see other pwme going about their daily life and how even within this illness, experiences and symptoms may be so different.

 

Given I think anyone can watch a recording at any stage, I’m not sure how interesting this is but this was posted to a list today:


From: Dr. Marc-Alexander Fluks
Subject: WebTV: Living With ME/CFS



Station: Deutsche Welle (English service)
Date/Time:
07.04.2022 – 01:15 UTC
07.04.2022 – 04:15 UTC
07.04.2022 – 18:15 UTC
08.04.2022 – 09:15 UTC
09.04.2022 – 19:15 UTC
10.04.2022 – 02:15 UTC
10.04.2022 – 15:15 UTC
WebTV: https://www.dw.com/en/live-tv/s-100825
URL:
https://www.dw.com/en/mysterious-illness-living-with-me-cfs/a-61204722

Item: Living With ME/CFS