Social Challenge - An Initiative Of ME/CFS Foundation Netherlands And Helping Heroes.

Summary:

Young people with ME symptoms suffer from extreme fatigue. Many can’t participate in normal social life or go to school. This leads to isolation, discrimination and stigma of being lazy.

Via our tool Illornotill.org they find out whether they might have ME/CFS to get help from their GP.

We team them up with healthy peers. Together they do a community service internship. The healthy ones do the physical work, and the ill ones do other corresponding work, like fundraising. Therefore, we give them proper training. So, they also learn a trade for later.

Teaming up healthy young people with sick peers takes the sick ones out of isolation and shows the healthy ones that their peers with ME are also normal youngsters. This fights discrimination and stigma and shows that ME patients have a meaningful contribution to society.

This initiative can be replicated elsewhere. It does take some effort in fundraising and organization. But it is rewarding to make a difference in the life of a young person.

Website links: https://mecvs.nl/mdt/ and https://illornotill.org/ (English demo version)

Related link: https://helping-heroes.nl/mecvs/social-challenge/

Facebook group link:

Code:

https://www.facebook.com/meetingpoint.mecvs/photos/a.451416278254663/4836316283097952

[Source: http://www.brainmindpain.eu/bestpractices2021/#1637162525306-45c7e8b3-7244]

 

The approach is more positive than usual. But coupling someone to a sick person to do the physical work misunderstands the disease. Sometimes I can run around the house with my niece or nephew on my neck but not be able to make a simple phone call at the same time.

 

might be useful to the very mildly effected but peer pressure in those situations will lead to the sick person overdoing things till they crash possibly starting a downward spiral into severe m e .