ME/CFS & Long COVID Support in New Zealand
- Partner with community groups already providing services for people with ME/CFS and Long COVID. Not only do they hit the ground running but are a cost-effective option that doesn’t neglect people with these conditions. It makes economic sense (now and for future long-term issues that will arise if these people aren’t supported NOW)
- The Support in the first 3-6 months impacts the long-term outcomes. This support should not be delayed
- Home help with or without personal cares
- Food preparation
- Access to support
- 1:1 holistic support and education
- Taha tinana (physical health)
- Taha wairua (spiritual health)
- Taha whanau (family health)
- Taha hinengaro (mental health)
- Health Professionals
- 1:1 holistic support and education
- ANZMES & ME Awareness GP education should be mandatory for all Health Professionals.
- Te Whatu Ora to put their weight behind the call for Insurance agencies to stop using harmful and out-of-date recommendations for treatment in an effort to refuse claims.
- Te Whatu Ora to support ANZMES petition in parliament and change the lives of approx. 40,000 people in NZ living with ME/CFS and Long COVID.
With respect, we are asking for the delays in support to stop. Utilise what support is readily available in the community, and financially support them to provide the services. We are ready and willing to sit at the table with you and discuss this further.
Complex Chronic Illness Support Inc.
Why the contribution is important
- Te Whatu Ora needs to not only acknowledge the latest international and national research and guidelines for diagnosis and treatment of ME/CFS but accept it and promote usage of it. Eg NICE guidelines around the use of GET and CBT are no longer acceptable treatments for ME/CFS. Including research from local researchers like Emeritus Professor Warren Tate and Dr. Anna Brooks.
- Health Professionals in New Zealand need to understand that ME/CFS is not a psychological issue, but a physiological disease.
- The Attitude of Te Whatu Ora – in conversations I had had with Te Whatu Ora the following were apparent.
- No Long COVID issue in NZ – there is, I have questioned if in fact, this is a lack of acknowledgment (as we have seen for decades with ME/CFS), the ability to diagnose confidently by Health Professionals, or the categorisation in the computer systems, which meant the full extent was not known. Just like with ME/CFS, there is no ‘test’ – no positive result meant no diagnosis mantra – this has followed on from ME/CFS into COVID.
- No interest in ME/CFS. I was told that Te Whatu Ora has NO INTEREST in people in ME/CFS
- Bureaucracy takes too long. We’ve been told for years to ‘just wait’ we are trying to sort something out. The reality is, we are being ‘put off’. Early intervention and management of symptoms give a higher chance of better long-term outcomes. We KNOW this because we have been working with people for over 40 years with Post Viral conditions and ME/CFS. In this regard, Long COVID is NO DIFFERENT. Right now – these people and their families are being neglected by Te Whatu Ora
- There are already well-established charities in New Zealand. Charities provide holistic support. But are funded by gambling etc – causing harm to other sectors of society. If Te Whatu Ora has no intention of supporting ME/CFS and Long COVID within the health sector in a holistic manner. Why not fund these groups adequately and allow them to provide this support on your behalf. Professional community groups can provide services at a cost-effective level.
- There has been NO consultation with those clearly providing the support – and have been for decades.
- The fight for recognition
- ME/CFS and Long COVID are conditions that are very disabling for those living with them. But it’s not classed as a disability.
- I contacted the Long term conditions team – who suggested I contact Disability team. ME/CFS fits NOWHERE for funding – yet affects around 40,000 people in NZ
by CCISupport on March 28, 2023 at 10:32AM