A better example for patient advocacy re fatigue from a German patient organisation -- for Multiple Sclerosis

[MSEsperanza]

Lacking the resources to write more -- just would like to let you know how the German Patient Organisation for MS "AMSEL" handles the issue of false (psycho-) perceptions of illness related fatigue.

Apologies for the Google translation (always funny though) - hope the key message is not lost:

Error: Multiple sclerosis is a matter of will
01.02.2018 - AMSEL cleans up with the errors and prejudices about MS. Today the topic: Multiple Sclerosis is a matter of will.

AMSEL e.V. tidies up with the errors around multiple sclerosis!

For example, everyone knows lead tiredness after a hard day at work, after an intercontinental flight over several time zones, a night that has been danced through. With concentrated effort of the will you can keep your eyes open to a certain extent until you fall into bed. Unfortunately, this does not work for MS-related fatigue. It has a completely different cause and here the body demands immediate rest and sleep - with power!

Effort of will? Wrong! To fight against it with all mental power is rather counterproductive. Even well-intentioned advice does not help one step further, but is felt by many to be misplaced and inappropriate. Or put them under unnecessary pressure and possibly aggravate their situation.

URL:
http://www.amsel.de/multiple-sklerose-news/medizin/Irrtum-Multiple-Sklerose-sei-Willenssache_7152

"Amsel" also means Blackbird by the way

 

[Joh]

Interesting, thanks for sharing.

I like Jen Brea's effort to get in contact with other illness communities to fight together and to look at the similarities. When I looked at a cancer society site, in the main menu was also a prominently placed notice, that positive thinking is not curative. I've already started to make a list of bloggers and websites with similar illnesses and plan to contact them e.g. about Unrest. Of course it's important to keep a profile (especially as a disease without biomarker) and to also emphasize the differences, but I think it would help to get the word out about ME to other illness communities and cooperate in some areas.

This MS Amsel site has 11.000 Facebook followers, a huge difference to the ME Facebook pages. Prof. Scheibenbogen recently said in an interview that ME is four times (?) more prevalent (or a similar number, but more prevalent) than MS. The German Facebook page about ME with the most followers has 1000. It shows how much we still need to do to get the word out, get people diagnosed etc.

 

[MSEsperanza]

Thanks @Joh , you completely got my point.*

Hoping I will be able to add some thoughts soon.

*Edited: (even though I didn't elobarate.)

 

[Inara]

@MSEsperanza, what is the take-away? Sorry I don't get it.