Representative MECVS Nederland
Representative Stichting Steungroep ME en Arbeidsongeschiktheid
Representative ME/cvs Vereniging
Theo Kuiphof has been the chairman of MECVS Nederland since 2016. During this period, numerous innovations took place within the organization, he was closely involved in the political lobby around the Health Council’s advice on ME/CFS, and MECVS Nederland won a prestigious award from the European Parliament for its youth project, as the first ME/CFS organization ever.
He was a member of the ZonMw steering committee, which developed the research agenda for ME/CFS in 2020. This served as the basis for the funding of the research program by the Minister of Health, Welfare and Sport. Theo has been involved with NMCB from the very beginning, when the consortium took its current form and the grant applications were prepared. As a member of the executive board of the NMCB, he organizes the contribution of MECVS Nederland within the consortium.
Theo studied econometrics at Vrije Universiteit and Dutch law at the Open University. In the past he has gained extensive experience in change processes within complex organizations. He has lived experience with ME/CFS.
Betsy van Oortmarssen has been involved with the Steungroep ME en Arbeidsongeschiktheid (ME and Disability Support Group) for years. In her work at the Hanze University of Applied Sciences and later at the FNV labor union, advocacy and attention to social security were central themes. In 2014, she obtained her PhD with a thesis titled ‘Reintegration after long-term sick leave. A longitudinal study of actions by and interactions among employees, managers and occupational physicians’. After her early retirement, Betsy became more involved with the Steungroep, serving as a board member and contributor to the helpline. Alongside two other volunteers, she assists over 200 ME/CFS patients annually with issues related to work, income, benefits, education, or school. Most inquiries concern disability assessments for WIA or Wajong benefits and appeal procedures. Regular discussions are held with the Employee Insurance Agency (UWV), the Ministry of Social Affairs and Employment, and members of parliament regarding the challenges faced by ME/CFS patients in their workplaces, schools, studies, and disability assessments.
Through her volunteer work with the Steungroep, Betsy – who is not an ME/CFS patient herself – has a clear understanding of the profound impact that ME/CFS has on the personal lives of patients and their loved ones. Confrontations with misunderstanding and injustice, along with being unheard by institutions such as the UWV, often exacerbate their suffering. ME/CFS patients are frequently told that their limitations are ‘not medically objective’, attributed to ‘deconditioning’, incorrect behavior, or erroneous thoughts.
This motivates Betsy to advocate for the NMCB alongside representatives of other patient organizations. Her hope is that the researchers associated with the NMCB will achieve scientific breakthroughs soon, bringing about the long-awaited change that ME/CFS patients and their families have been waiting for.
Markus is father of three daughters, two of whom have severe ME/CFS and are house/bed-bound. His wife also has ME/CFS, a diagnosis she had to wait for about 31 years to receive. She has been ill for over 36 years, now in a very severe condition. She has been staying in a dark room for almost four years now.
In addition to his full-time job as an LSH innovation advisor and caregiver for his two family members, Markus has been involved as a patient representative on behalf of the ME/cvs Vereniging with the NMCB (in formation) since January 2022.
The profoundly disabling and life-destroying nature of ME/CFS – for his family members and fellow patients – and the fact that this complex multisystem disease has been ignored, minimized, and psychologized for decades – are the main drivers for him to want to contribute.
The lack of care, societal recognition & support, and the enormous knowledge gap among, for example, doctors – with all its consequences – also contribute to this. Fortunately, the tide is slowly turning, partly due to all the attention on Long Covid.
As of October 2023, Markus is an NMCB board member, contributing in various areas (such as technical content, recruitment, strategy, communication, setting up patient-led drug research, etc.). He collaborates with the two other patient organization NMCB board members, other patient representatives, and the NMCB management team.
