CCI Support and other ME/CFS Support groups around New Zealand are putting our weight behind the ANZMES submission to the NZ Royal Commission around the COVID-19 pandemic response. The submission by ANZMES to the NZ Royal Commission was made in consultation with CCI Support and other ME/CFS agencies in New Zealand.
The following key areas of concern were expressed:
- Lack of nuanced response for prevention and protection for people with ME/CFS
- Adverse reactions from Vaccinations. I can say that I (Miranda Whitwell – CEO) personally contacted the MOH as soon as it became apparent (in 2021) that not only were members of the public getting ME/CFS symptoms soon after taking the vaccine, but our own members were having adverse reactions. The MOH met with me, to discuss this issue, but essentially denied it and the conversation was shut down.
- Consequences of vaccine mandates in people with ME/CFS: 60% of respondents experienced a level of deterioration in their health, with 3.1% experiencing a severe relapse, and a significant number experiencing reduced capacity to work and increased care requirements.
- Lack of funding for long COVID support: At CCI Support, we made very early calls for Long COVID (before it had a name) funding and support, as we knew what was coming (this comes from our 40+ years of experience with post-viral conditions). Even to this day, we are still fighting for any support or funding for Long COVID directly. The Government instigated some long COVID clinics, but in our opinion, they were not fit for purpose, but we were ignored when we tried to explain. Despite dealing with post-viral conditions for decades, we weren’t asked to come to the discussion table.
- Lack of consultation: Despite dealing with post-viral conditions for decades, we weren’t asked to come to the discussion table. We tried desperately to be heard. Including adding a submission to Ministry of Health Manatū Hauora’s Discussion space on the Future of the Health system. Whilst we never received any direct communication around this, we do believe it has softened some doors for discussion.
- Lack of clear communication about post-viral complications: And therefore no timely response, which could have reduced the harm to the public.
- Health protections – the early protections put in place did protect our vulnerable community.
- Protections have been removed but the pandemic is not over: Our members are still vulnerable to relapse or worsening of their symptoms if they get COVID.
- The Aotearoa COVID Action group has developed an 11 point COVID plan. We support and encourage the implementation of these strategies.