Unfortunately the ME Steungroep has made the painful decision to cease their activities at the end of this year.
Het bestuur van de Steungroep ME en Arbeidsongeschiktheid heeft een pijnlijk besluit moeten nemen. De Steungroep gaat aan het eind van dit jaar stoppen met haar activiteiten. Geen spreekuur en geen informatie-voorziening meer via de website en Ste...
www.steungroep.nl
Translation
July 1, 2026: Important message from the ME and Disability Support Group
The board of the ME and Disability Support Group has had to make a painful decision. The Support Group will stop its activities at the end of this year. No more consultation hours and no more information provision via the website and Support Group News; our projects and lobbying activities stop and our memberships and active contribution to partnerships end.
Painful decision
This decision is painful for the ME patients. It was not taken because we are unnecessary and our work is on it. On the contrary. It is still hard-needed to stand up for the interests of ME/CFS patients in every possible way, especially in the areas of work, incapacity for work and benefits. We have done this for more than thirty years. The number of people we have given information and advice about benefits, work and study is in the thousands. We have had numerous consultations, written letters, published reports, organized and signed petitions. We visited the UWV, courts, ministers and MPs, spoke to the media and you name it. And that all remains necessary.
This decision is also painful for those who have put time and commitment into the Support Group all these years and have often built up a lot of knowledge and expertise in the process. There is no guarantee that all this will be preserved or can be transferred.
Pure necessity
But our decision is well thought out. The board is convinced of the need for this step, however drastic it is for people who depend on our advice and support. The reason for stopping and abolishing the Support Group lies in the available workforce in the short and long term. Age, declining health (also of partners) and lack of sufficient new growth require us to reduce the commitment of the Support Group. This applies to many volunteers and to all activities and tasks: advice and information provision, advocacy, lobbying, publishing Steungroepnieuws, administrative and organizational work in the office and the board work.
We see no opportunities to continue the work of the Support Group at the same level with new people. This means that continuity is no longer guaranteed and the risk of our work crumbling is becoming too great. We want to prevent that.
Still get results
In the second half of this year, we will carefully complete our activities and transfer them where possible. We will not miss results that are still achievable. In the course of 2027, the Support Group will be formally dissolved. We are in the process of preparing for this.
We want to transfer our knowledge and experience as much as possible to organizations and/or individuals who compete with and for ME/CFS patients to improve their social position.
Careful finishing
We are going to tackle the dismantling carefully:
• People with whom we have recently had consultation hours contact will receive a message about stopping the office hours and about the careful deletion of the confidential data (sent documents, office hours notes, etc.).
• In the coming months, the consultation hours will take place by appointment, (callback request via e-mail or voicemail). See the information on the website.
• From now on, we will no longer register new donors. All information on our website is freely available to everyone; login is no longer necessary.
• In the autumn we will announce what this means for the UWV Research into ME/CFS Assessments, for the work on the new ME/CFS Directive and for the ME/CFS Research Program.
• Two more issues of Steungroepnieuws will be published. In it, we will pay attention to what we have achieved and what activities the Support Group transfers.
We will provide information about the completion of the activities and the financial settlement via the website and Steungroepnieuws. We want to do this in a transparent way.
Thanks in advance, everyone!
At this place we already thank all the people and organizations we have worked with in all these years. We have done a lot of work together and achieved a lot. Many thanks also to the many volunteers who have worked for the Support Group Work. And finally, thanks to our more than 1200 regular donors: without their support and involvement, we would not have been able to build what we have now achieved.
The board of the Support Group ME and Disability:
Ynske Jansen, Betsy van Oortmarssen, and Katy van der Sluis
www.linkedin.com
