This month, ME/CVS Stichting Nederland joined the World ME Alliance as a member. This Dutch organisation has been advocating for people with ME since 1987, and has a variety of focuses as they work to empower and improve the position of people with ME in the Netherlands. Their core focuses include providing information, enabling peer support, advocacy with government and healthcare providers, and contributing to research.
They were a member of the ZonMw Steering group that was responsible for setting up the long-term ME/CFS research program in the Netherlands. They are actively involved in multiple bids for the multi-million euro pot available to researchers setting up colloquiums and financing research projects. The final decision on where this funding goes is will be announced toward the end of 2022.
They keep in touch with members through a quarterly magazine – “MEdium” and through regular newsflashes by email. In the past couple of years, they have developed a tool aimed at young people experiencing any symptoms similar to those in ME. Based on responses, the tool provides advice and signposting toward services able to support diagnosis. The project aimed to improve the rate of diagnosis in young people, and has now been used over 30,000 times.
ME/CVS Stichting Nederland is led by a board that includes people with ME and carers. They have a director and one other employee. Like many ME organisations, they depend on volunteers for a significant portion of their work, most of whom have either had or cared for someone with ME. The Stichting is recognised as a national patient organisation in the Netherlands and therefore receives a small government subsidy for its work. They are a registered charity.
We are excited to collaborate with them through the World ME Alliance, and pleased to have a new member that is so enthusiastic to engage in international work.
A growing Alliance
We are looking for more national ME organisations to join the World ME Alliance, and welcome other organisations from the Netherlands alongside ME/CVS Stichting – if you’re interest find out more here.