logo: erdstrahlenfrei

Short report from ERS congress 2018 in Paris.

Dear friends,

my wife and me, we are back from Paris since Friday night. After the ERS congress we took the opportunity and spent some holidays between Versailles and Disneyland. The following Saturday started busy because of the ongoing annual congress on rare diseases in Austria. Like always it was a "family reunion" and the relevant network event in preparation for the upcoming annual meetings of our various medical societies.

I have been at the ERS congress from Sunday to Wednesday morning and would like to share some of my "highlights" (in case you didn't have the opportunity to spend so much time at the congress).

Sunday, 16. September

On Sunday there was a nice poster on choir singing in COPD patients. It appealed me, because we also recommend singing for our sarcoidosis and IPF fellow patients. At least for me the Sunday had some focus on rehabilitation, showing, that there are many common features of respiratory muscle weakness for COPD and ILDs. And for training the well-known wisdom: more is more.

Monday, 17. September

Whereas the focus on the ERS congress was clearly on COPD and IPF, Monday was the day for ILD. It started for me with the rare populated ERN lung related session where Tobias Welte (since the congress president of the ERS) gave a lecture on the role and problems of ERNs, especially reflecting the need of concentration for higher case numbers to establish and maintain quality. According to his working area he focused a little on lung transplantations. We are lucky that sarcoidosis as reason for lung transplantation was not even listed.

Gergely Meszaros (patient representative in ERN lung for PHA Europe) told about patient expectations in ERNs based on the 5 As principle around quality health care: Available - Adequate - Accessible - Appropriate - Affordable. Not really new, but still an unmet need in wide areas.

From the following sarcoidosis patient group meeting I have some notes, but you have already been there and I'm sure, Jeanette will give us a more precise summary.

From the following meeting of the ERN lung PAG group I understood more what has been talking about from a 5 minutes renarration by Bernd than from the complete 90 minutes of the meeting - too many acronyms and too little my background knowledge. But I will work on that.

Poster session

PA3010: Long-term follow-up of patients with pulmonary sarcoidosis
Of course this is a highly selected subpopulation of sarcoidosis cases. Nevertheless, the final conclusion is what also patients request since years:
Conclusion: The pathology discovered after many years indicates the need for an expanded involvement of specialists in primary and dynamic examination of patients with sarcoidosis.

Tuesday, 18. September

In the third lecture of the "state of the art" block Dominique Valeyre reported on State of the art: Sarcoidosis. In his lecture he also reported features of Parasarcoidosis (manifestations not directly linked to granulomas, e.g. see conference recording Marc Judson@FSR). At the end of his talk he had to speed up a little, so there was only little time for our Survey Results and the Take Home Message.

Poster session 411:

PA3840: The effect of pulmonary rehabilitation on health-related quality of life in patients with pulmonary sarcoidosis
Sarcoidosis patients on a pulmonary rehabilitation programm (poster). For us not really surprising - all patients had nearly normal lung function.
(It's time to evolve from a lung disease ... :-) )

Wednesday, 19. September

On Wednesday morning there was the last session on my to-attend-list, the poster discussion of "our" survey results.

Poster session 533: Sarcoidosis: from basic research to patient outcomes

PA5206: Placebo-controlled randomised trial of dexamethasone for quality of life in pulmonary sarcoidosis
During the presentation of this poster I had a not so little frustrated breakdown. No, not because of the specific posters content. But dexamethasone in the title remembered me on some Yesterdays posters, on a concluding statement in an article "Current guidelines for the initial evaluation of sarcoidosis are stuck in the 1960s ..." and a german article (translated) "Therapeutical experiences with Dexamethason for sarcoidosis of the lungs" - from 1960.

This article from Karl Wurm is the real reason which made me frustrated. Basically he formulated there - 60 years ago - a version of Wells Law: treat because of organ danger or because of subjective discomfort.

PA5217: Sarcoidosis treatment and outcomes: what is most important to patients?
Jeanette presented our sarcoidosis survey poster (the four people on the photo from left to right: Paolo Spagnolo, Robert, Dominique, Jeanette :-) ).
You already know the figures for participants and results.
After all the 2 minutes presentations of individual posters there are open discussions with the presenters at their posters (posters are arranged along the walls of the conference room). I was really impressed that Robert and Dominque were not only there during the poster presentation, Robert also spent some more time to give me the chance to take a photo with him, Jeanette and our Survey Poster.
It is really motivating to have some of the world leading sarcoidosis experts with and behind us. Not only in closed rooms, but also in the public.

Finished, end of congress impressions. Time to spend some time in the city and to send final greetings From Paris with Love. :-)

(Last change: 2018-10-05)