ectrims2022 - first insights

 

Hi all! 

This is a first review about my days at ectrims in Amsterdam. I am writing this in bad English to give all the people the opportunity to be informed and also to share their thoughts with me. 

#ectrims2022 is again the worlds largest MS Meeting. I was one of the more than 7000 participants during the last 3 days and there is a lot to digest and still also to review during the next days. But my 3 super key take aways are at the moment:

- we need to do more research in some areas like women and ms and the issues they experience, also in aging with MS and how to avoid that we reduce the quality of life of a person living with MS, there is a big unmet need too. Also that was the outcome of a wonderful discussion with some ladies coming from different communities, patients of course, HCP, Researcher and Nurse, we have to think how to find out the differences between women and men and how to make provide gender - specific care.

- a great new format came up: brain dates you were able to book brain dates via a market place in the web or on the website and invite people to join. 

Small rounds of discussion, meeting new people, expand the network and valuable information exchange can be done there and this is something I would love to see at other congresses too. 

It is a short, but very constructive and intensive discussion and the person who invites others wants either to discuss a problem, find advice how to move forward or also want to look for new themes to come up in the near future. 

You get new ideas and inspiration and you can learn from others.

- #digitalhealth is there and is used also already in some cases. It was mentioned that video consultations were helpful but not always well organized or used by doctors and PwMS. It was completely new but, as we all know, the pandemic was an accelerator to the use of it. It was mentioned also that we need to do more in this and also to prepare that much better just for the case that we need to use it again. 

In my opinion it is there, it can help to create more efficient consultations because you don't need to ask the doctor face to face all the time or sometimes the advice of a nurse is absolutely ok. 

I think we should not discuss how prepare just for the case, we need to use it in the best way because it is a great help to take better care and also make care more efficient. Also for those who are not able to go to the doctor always, because they are bedridden or also sitting in a wheel chair without assistance to go to other locations. 

In some sessions I wondered how long do we discuss the use of video consultations or sensors and wearables and in some cases how long do we have to discuss till we start to realize things in a better way. There is a lot to do in the next years.

Other: Covid and it's impact on People living with #ms is very often discussed and it is no question, there was a lot of lost abilities, social isolation and also a loss of quality of life for many. Also the mental health issues are huge and people are left behind. The rate of thinking about suicide is much higher and in many cases people don't receive the care they need. 

I was also very pleased to see more patient advocates in the sessions and to listen the patient voice in some sessions. I think, this is really important and I'd love to see more in the coming years on many congresses around patients and diseases.

There is a lot going on and this is really appreciated. In all areas of a life with MS. But ectrims showed too that we need to do more and also strengthen our activities in research, digital health and last, but not least in health data sharing. Because there is a big need of better data sets, more high quality and: the data exchange across countries to set up bigger data bases to find out more about specific themes.

Another homework to do right?

This was a short overview about the ectrims congress. I am happy to discuss further. :-)

Text: Birgit Bauer

Photos: Birgit Bauer

About hormones, women and menopause!

Ok, it is happening right now. I am in the age of a woman where we have to talk about the wired thing called menopause. 

This is my warning: it could be that there are some little signs of sarcasm, irony or exaggeration on some points. I could play with some of those typical stereotypes too. ;-) 

To enter the phase of menopause isn't easy for many or most of women. It is a life changing time and although it is mentioned by World Health Organisation (WHO) as an important health issue, it's a theme we mostly don't talk about very much. It is uncomfortable, stressful and it seems to be a bit scary for most of us. 

I was grown up in a society of many taboos. "We don't talk about this" was one of the sentences I heard very often as I asked things about my monthly period, taking the anti baby pill and the other stuff around being a woman. It was and still is for some an uncomfortable theme and yes, it is not nice all the time.  It's pain- and stressful, not just for the women, also for their families, friends and also for the society and the economy. But, many women keep the silence about their symptoms or questions, they think it is embarrassing although it is a part of our lives. It is nature or destiny of women. 

To be frank, to keep silence is not healthy or an option. It is stressful to suffer in silence with that menopause thing. It is a strain. 

Das Virus, die MS und ich! Eine Nachlese!

Am 27.09. wurde per PCR Test bestätigt: Ich habe Corona. 

Am 04.10. erhielt ich den Genesenenstatus. Weil negativer Test und derlei. 

Ich hatte angefangen von üblen Gliederschmerzen, Halsschmerzen, verstopfte Atemwege, extreme Erschöpfung, Symptome und Beschwerden, die sich wirklich keiner wünscht. Ich landete also in der Infektionsabteilung beim Arzt und wurde mehr oder weniger abgefertigt. Es dauerte keine 3 Minuten. Kurze Besprechung, Stäbchen in den Hals, der übliche QR Code für die App und Tschüß. 

Über das Leben, ein Karussell, das Reflektieren, Motivation und inneren Frieden!

Das Leben ist wie ein Karussell. Letzte Woche war cool, diese Woche ist es nicht. Und eine ganz andere Woche ist so glorios, dass man nicht mehr aufhören kann, sie zu genießen. Auf und ab eben. 

In einer Diskussion neulich ging es um den Satz "Gesundheit beginnt im Kopf" und um Motivation. Es war für Menschen mit Erkrankungen und schon die Vorgespräche waren spannend. 

Was ist Motivation? Ein Motor? Der innere Antrieb oder entspringt Motivation einem Wunsch oder einem Ziel, das wir zu erreichen versuchen? Geht es im Zusammenhang Erkrankung und Motivation nur um das ständige Umsichselbstkreiseln und die Erkrankung oder geht es vielleicht um mehr? 

Und ist Gesundheit nicht auch die Summe aller Gedanken, die wir haben? Was mich zur nächsten Frage bringt: Kann Selbstreflexion krank machen? Also zu viel davon? 

Und kann das dann vielleicht auch nicht für eine ordentlich demotivierte Haltung sorgen, weil man anfängt sich nur noch in die Fragen rund um was hätte ich besser machen können zu kreisen um was hätte anders laufen müssen oder was wäre wenn zu verstricken und damit auch auf der negativen Seite des Konjunktiv 2 zu leben? Also auch auf der dunklen Seite der Macht?