ME/CFS & Long COVID Support in New Zealand

  1. 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)
  2. The Support in the first 3-6 months impacts the long-term outcomes.  This support should not be delayed
    1. Home help with or without personal cares
    2. Food preparation
    3. Childcare
    4. Access to support
      1. 1:1 holistic support and education
        1. Taha tinana (physical health)
        2. Taha wairua (spiritual health)
        3. Taha whanau (family health)
        4. Taha hinengaro (mental health)
      2. Counselling
      3. Advocacy
        1. Workplace
        2. MSD
        3. Health Professionals
  3. ANZMES & ME Awareness GP education should be mandatory for all Health Professionals.
  4. Te Whatu Ora to put their weight behind the call for Insurance agencies to stop using harmful and out-of-date recommendations for treatment in an effort to refuse claims.
  5. 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.

Miranda Whitwell

CEO

Complex Chronic Illness Support Inc.

www.ccisupport.org.nz

Why the contribution is important

  1. 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.
  2. Health Professionals in New Zealand need to understand that ME/CFS is not a psychological issue, but a physiological disease.
  3. The Attitude of Te Whatu Ora – in conversations I had had with Te Whatu Ora the following were apparent.
    1. 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.
    2. No interest in ME/CFS. I was told that Te Whatu Ora has NO INTEREST in people in ME/CFS
  4. 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
  5. 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.
  6. There has been NO consultation with those clearly providing the support – and have been for decades.
  7. The fight for recognition
    1. ME/CFS and Long COVID are conditions that are very disabling for those living with them.  But it’s not classed as a disability.
    2. 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

Current Rating

Average rating: 5.0
Based on: 53 votes

Comments

  • Posted by taniakarauna March 28, 2023 at 10:56

    Completely agree with all of the above. Spreading awareness and education about ME/CFS and associated illness with GP's is necessary so that there is increased recognition of symptoms, ability to treat symptoms, and provide support.

  • Posted by Rose March 28, 2023 at 11:32

    Post viral conditions such as ME/CFS and Long Covid are severely disabling but are severely neglected in our health system. Ensuring that evidence based education has prominence in medical education and that supports for this condition have equivalence with other disabling health conditions is essential. To single out some long term health conditions for extra support (as is done in Te Pai Tata) while neglecting others is inequitable - something the health system claims it is working to overcome.

  • Posted by Annabelle March 28, 2023 at 13:14

    The above recommendations are totally valid and I wholly agree with them all. It is imperative to start managing symptoms as soon as possible to achieve better long term health outcomes. GPs and other Health Professionals need to be informed and supported in their diagnosis of ME/CFS and related conditions. Awareness of these conditions in all health sectors is a must in preventing relapse, severe conditions and even more strain on a fragile health system. ME/CFS is a disability condition that needs attention/awareness and support.

  • Posted by melngapo March 28, 2023 at 18:48

    Fully support this. As a person living with ME/CFS I feel this is so important.

  • Posted by stephlay March 28, 2023 at 20:36

    Thoroughly support this. Haven't we moved on from a medical system that only believes in health issues if they show up in a blood test? The benefits of early intervention and support can help reduce the duration and severity of symptoms.

  • Posted by LizByrne March 29, 2023 at 09:50

    Tautoko. He tika, he pono tēnei kōrero. Many of us living with Long COVID do not have the financial means nor the energy to source and fund our own treatment eg to find private physiotherapists with an understanding of vestibular issues and post-viral conditions. For many of us self managing disabilities and/or chronic conditions before LC, LC has been the unrecognised tipping point whereby we can no longer maintain our independence, yet we fall between the gaps when it comes to support or access to funded treatment. Ko te tūmanako ka whakarongo koutou i tēnei kōrerorero.

  • Posted by JBreach March 29, 2023 at 12:53

    As a long covid suffer I completely agree with the above comments. We are simply not being actively supported by the MOH. My GP also feels this lack of support which is frustrating for her as she feels she is being hindered with providing the medical care she should be giving me. Without the people from our Long Covid Facebook group I am left feeling very much alone. How many other Long Covid suffers are there in NZ who are truly suffering in silence, not coping and alone?

  • Posted by ANZMES March 29, 2023 at 13:57

    The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) agrees with CCI Support and offers full endorsement for their suggestions for improving the future of the health system for people with ME/CFS and long COVID. ANZMES asks Te Whatu Ora to take this matter seriously because this growing community of chronically ill people deserve better treatment and urgently need more access to financial support and health services with acknowledgment that their illness is disabling.

    In our surveys people with ME/CFS have told us that they feel ignored, isolated, and their quality of life is low and ANZMES fully endorses the motion that delays in their support must end and action must be taken to improve the situation now.

    ANZMES has presented detailed submissions to the government outlining the following requests on behalf of people with ME/CFS:

    Reclassification of ME/CFS to disability.
    All ME/CFS patients will then be supported under the existing framework of the Disability Support Services.
    Dedicated Funding - We ask that the government commit to a fair financial contribution.
    This will provide improved services for people with ME/CFS and long COVID - a growing community of people with significant needs.
    Unique Coding for ME/CFS
    A unique code for ME/CFS will enable real time tracking of diagnoses and treatment plans. This would enable more accurate data for funding purposes and better understanding of prevalence, in NZ, so that future healthcare plans can be modified.
    One Nationwide Model
    Develop a universal referral process with appropriate eligibility criteria used throughout NZ by Te Whatu Ora and Te Aka Whai Ora in all regions.
    Modified eligibility criteria
    Currently throughout the country the eligibility criteria for NASC is for over 65 years of age, or those requiring 7 days per week care. ANZMES recommends that the eligibility criteria be modified to include ME/CFS, and those with this disabling disease who require 3-4 days care, are granted access to appropriate support.
    Partnerships with Māori and Pasifika
    Healthcare providers, trained by ANZMES on ME/CFS diagnostic criteria and symptom management, may improve equity in healthcare for these groups.
    Subsidised Medication
    Overseas research indicates that people with ME/CFS have substantially higher medical costs than other individuals and subsidising medications may reduce this burden.
    A streamlined approach with accessibility at the forefront
    A nationwide model with a centralised approach to care simplifies the process; improving access for people who may struggle to navigate a complicated system alone. A contract with ANZMES would enable a wraparound service of support for patients presenting with this condition, through our regional support organisations.

    The most defining feature of ME/CFS and long COVID (LC) is Post Exertional Malaise (PEM), where the ability to exert energy is limited due to malfunction of energy production, and the consequences are long periods of rest. Best practice management (from the UK NICE Guidelines) emphasises the importance of a personalised management plan for energy management - including rest and staying within the individual’s energy limits - the treatment of specific symptoms, and guidance on managing flares and exacerbations.

    If people are able to operate now within their energy capacity due to help with chores at home, over time their bodies may heal enough that they can manage it themselves, or return to work.

    A change in classification would be a lifeline to dedicated support and a positive first step towards wider acknowledgement that their illness is disabling, providing fairer access to established support and care.

    With changes being made within the healthcare system through the formation of Te Whatu Ora there is an opportunity to create better pathways and funding to care and support people with ME/CFS.

  • Posted by SeanOConnor55 March 29, 2023 at 14:26

    I have many long covid symptoms although never confirmed as such. One Emergency Care Centre Doctor did seem confused by many symptoms and referred to a list of long covid issues of which tinnitus was one.

    Since then, I have had daily bouts of nausea, dizziness and vertigo with migraines.

    I fully support research in to this area as there is so much misinformation out there and to have recognition that this is actually a ‘condition’ would mean a lot in itself.

    I’m taking one minute, one hour, one day at a time as that’s all I can do. It’s very hard for partners and family members to live with too. It’s not just the sufferer, it is the impact on people close to the sufferer who carry a burden.

  • Posted by jaya_gibson March 29, 2023 at 14:51

    Please support this. I am unable to work and have no support at all.

  • Posted by listay1 March 29, 2023 at 15:22

    Wholeheartedly agree with the commentary above.

    Long-covid doesn't show up in blood tests, but there are markers that are present! I have high levels of inflammation and frequently get sick with everyday bugs, I've lost count how many sinus infections, UTI and other skin conditions I've had since catching Covid. Being triple vaccinated and out of hospital I was told it wasn't possible to get Long-covid and yet here I am.

    I'm part of a group of NZ based LC patients and supporters (currently around 3,000 people) and it's shocking to know nearly 230,000+ NZ patients (to date) who have caught Covid have or have recovered from Long-covid. That's not even close to the 40,000 indicated!

  • Posted by scoutriver March 29, 2023 at 17:28

    I agree 100% with above comments.

    I had ME/CFS for around 4 years after a bout of glandular fever in 2015, and have had Long Covid for 357 days.

    Neither time have I had support besides occasional symptom management.

    I am a single parent to a 4 year old, and I have spent most of the last year begging for help at home. I experience POTS symptoms (but the local cardiology department is too busy to assess me for diagnosis) when I stand to do housework. Because I'm a beneficiary I cannot afford the costs of outsourcing tasks I am too unwell to do - that is, dishes, vacuuming, tidying, any other cleaning, getting on the floor and playing with my daughter, half the time I can't cook, I can't easily walk around the supermarket, and I cannot work.

    A friend mows my lawn and my mother does my laundry because I can't do either. My GP, a lawyer, several disability rights advocates, two social workers, and multiple nurses have all tried their hardest to get me a NASC assessment - every referral has been declined.

    I've been battling for a term now to get the WINZ Childcare Subsidy for my child so she can reap the benefits of having ablebodied kaiako, but WINZ aren't willing to give funding for something without a predicted "recovery date".

    I was told I'd be better within 6 weeks.

    All I want is to be well enough to work.

  • Posted by Norene March 30, 2023 at 08:12

    I have suffered with fibromyalgia for 30+ years and now have long covid. There needs to be more help and validation for those who are suffering the effects of LC. We need financial help when we can no longer work or have to reduce how much we work. Some need in home help. Right now we feel forgotten, lost and made to feel we are putting this on. This is real! Very real! Please help us.

  • Posted by RosieRayner March 30, 2023 at 08:29

    Totally agree with this, there is zero support for people with ME/CFS, financially, mentally or physically. Doctors bills and medication alone set me back, nevermind the fact that I am unable to work.

  • Posted by janicegreenidge March 30, 2023 at 13:37

    I completely agree with these recommendations.
    I am the mum and carer of an 18 year old who's had severe ME/CFS for 3 years
    I've had to reduce my work hours to 15 hrs a week to care for her.
    She is unable to work at all currently. She needs assistance with every daily task. A good day is one where she manages to eat a meal with the family and have a shower.
    The impact on families is huge
    The process of getting help from WINZ is challenging

    Having a needs assessment should be standard practise for anyone who's mainly bedbound with this illness
    GPs are struggling as they don't have the knowledge to assist and earlier diagnosis would have saved us many months of stress and heartache
    We are lucky as I can advocate for my daughter.
    For those struggling to care for themselves the added strain of getting a diagnosis, dealing with doctors and running around trying to prove their case to WINZ will be increasing the crash state and causing long term harm.

  • Posted by Francie March 30, 2023 at 21:11

    I fully support this proposal. My husband has suffered from ME/CFS for more than 10 years.

  • Posted by Deanne March 31, 2023 at 14:11

    I support the recommendations and additional comments made here.

    A diagnosis of MECFS means you are treated like a pariah by the health system instead of a severely unwell patient deserving of treatment. Sadly, this disdain includes children.

    Prior to my son being diagnosed with MECFS at the age of 13, my experience of the NZ health system in paediatrics was excellent. His older sister was diagnosed with Type 1 Diabetes at 12 and the care she received was thorough, caring, regular, and well-coordinated across all disciplines involved. In contrast my son’s “care” has been intermittent, inadequate and, at times, inappropriate.

    My daughter, now 19, leads a full life at university in another city and continues to be well supported by the health system. My son is now 17 and his health has continued to decline to the point where he is mostly bedbound. He is now categorised as having Severe MECFS.

    I can’t help but wonder if my son had received more comprehensive & appropriate care from his Paediatricians early on, he may have been able to make a recovery instead of becoming more debilitated. It is perplexing that NZ paediatricians can diagnose a child with MECFS and then not treat them according to current guidelines which are easily accessible. https://www.frontiersin.org/[…]/full

    Instead, my son was given referrals to a psychologist and a physiotherapist who offered a programme of High Intensity Interval Training. At subsequent appointments the underlying message was that he should be trying harder and that getting back to school was more important than feeling better.

    CCIS, ANZMES and Facebook groups have been invaluable for information and moral support in our whanau’s journey. Caring for our son is having a massive detrimental effect on us emotionally, socially, and financially.

    At this point in time our son’s future looks very bleak. Te Whatu Ora has the power to change that.

  • Posted by traceylarsen April 01, 2023 at 08:58

    Totally agree !!! Over the years of supporting the ME/CFS community it is frustrating to see no change in medical opinions, attitudes and improved knowledge towards ME/CFS, even with the volume of research available proving its existence and the reality of impact on people's lives. Then long COVID arrives and there was much hope that now we would see government and health system eyes open and become more open, accepting and approving of these conditions. But NO. Unbelievable!!!! With the now over stretched medical system NZ faces, it makes sense to provide funding to community based organisations to provide the education and support to help this cohort of disabled people in our communities. Support us so we can continue to support these people with the level of professionalism and quality care that we currently do.
    BUT we cannot do this along. This community ALSO requires the in home practical support with house hold chores and child care too. It is imperative that funding is available in this regard. We speak in terms of energy envelope which for the ME/CFS and LC community are severally limited. And already mentioned in another comment, post exertional malaise results when living beyond this energy envelope. Each episode of PEM perpetually continues to deteriorate their health. Parenting responsibilities and household tasks and even showering can result in PEM for many. Supporting this community in these areas = improved health outcomes = returning to some form of work for many = healthier relationships/mental health/self idenity = healthier society. The ME/CFS/LCcommunity are not able to live a quality life. In reality their dreams and goals in life remain just that and the lives they were living are now in complete contrast, with much loss experienced -jobs, relationships, homes, identity,
    Do what is right Te Whata Ora and live up to your purpose statement noted on your website "All New Zealanders deserve access to consistent quality care when they need it, to live longer in good health and have the best quality of life."

  • Posted by BevHicksonSnook April 01, 2023 at 13:38

    Absolutely agree.
    I am largely bed bound with severe ME/CFS. I nolonger use my GP to manage my symptoms and have not done so for several years, due to a number of factors including his lack of knowledge and commitment to the business model as a GP, our discussion around his role in my care, financial hardship, the difficulty of getting to his medical centre site and the difficulty of picking up prescriptions. I cannot tell my family what it is really like because it distresses them how little help is available and how hard it is to get anyone to help. My husband suffers from my illness more than I do. There is no respite. I did not ask for this and neither did he. We both deserve a great deal more help. I wish you could live my life for awhile so you could experience it's impact for yourself.

  • Posted by whia April 01, 2023 at 17:16

    I was 4 years 'in the dark' with ME/cfs before I was diagnosed by an appropriately qualified doctor. It is almost impossible to find a doctor who has adequately upskilled re. this disabling multi-system disease in this country to date. Doctors (and other health professionals) here are STILL not trained re. this disease and I'm still met with a mix of ignorance and disbelief around many of my symptoms, in most of my medical encounters.

  • Posted by rubymedlicott April 01, 2023 at 19:15

    Completely agree. We need more recognition and awareness for those suffering with ME/CFS and any associated illnesses. Our GPs and health practitioners need to be educated to fully support their patients, and those suffering should be able to equitably access support services.

  • Posted by FYRBAL April 01, 2023 at 20:02

    I support any idea that calls for an increase in training, awareness and resources for those with Long Covid and ME/CFS.

  • Posted by rumseys April 01, 2023 at 20:04

    ME/CFS and now Long Covid it is now paramount to have funding set up and centers set up around NZ to address long term disability for those affected by virus. The suffering has been shoved into a dark corner with medical staff with little or no comprehension of how to help. Services need to be set up and then streamlined towards those affected in their home settings. The numbers are only going to increase annually as people are not aware of how serious it is for them in long term after infection. There should be panic alarms going off in regards for the incoming patient that will be needing help in years to come.

  • Posted by parekawa777 April 01, 2023 at 20:06

    100% tautoko this.

  • Posted by LeanneME April 02, 2023 at 08:00

    In addition to the original post I would add that we need ME/CFS specialists in the secondary care system that GPs are able to refer some patients to for holistic assessment and treatment. ME/CFS is a complex systemic condition that often has a myriad of symptoms across different systems (immune, endocrine, cardiac, gastro, muskulosketal etc). GPs can refer to specialists for individual symptoms e.g. to cardiology but there is no specialist Dr with indepth knowledge of ME/CFS that can treat the person and their interconnected symptoms. GPs are generalists and may only have a few patients enrolled with them with ME/CFS so it is not feasible for them to develop expertise in this condition, especially more complex and severe patients. GPs should have the ability to refer on to specialists in ME/CFS as they do with other health conditions.

  • Posted by juzdvs April 02, 2023 at 21:07

    Couldn't agree more with everything stated in this idea as well as all of the comments so far.

    It is absolutely crazy that a person with ME has to spend so much time and effort to get the support they need (if they even get it!) when they are struggling with this horrible disability.

    Urgent change is long overdue for ME and LC sufferers.

  • Posted by AJayC April 03, 2023 at 18:29

    I’ve struggled with CFS for over 10 years and have felt quite let down by the health system and the lack of understanding and support. This needs to be changed

  • Posted by juleswatson April 03, 2023 at 18:41

    In 2020 I had never heard of ME/CFS. In October of that year my then 15 year old daughter was struggling with declining health. Then we got the ME/CFS diagnosis and we were suddenly thrust into a nightmare from which there has been no waking from.
    This is a completely debilitating and disabling disease process and I've been dumbfounded by the lack of awareness of the medical community of the effect this has on a sufferer or their family.
    Please listen to us, the patients and their families. Other countries are more advanced and yet we are still getting told that CBT and graded exercise therapy are suggested for patients. The handouts given by the hospital are so outdated and we were told, even though this is a multi system disease that affects the neurology, immune, gastrology, endocrine and muscular systems, that there is nothing a Dr can do. Then we have the medical system itself promoting snake oil type "cures" at their GP conference with The Lightening Process and related "believe yourself out of illness" speakers having lecture spots this year. Which have been advised against for this illness by well known medical institutions globally. It's time NZ did something.

  • Posted by drl April 03, 2023 at 19:27

    100% agree with this!
    I have had ME/cfs for 6 years now after a virus and been housebound for the past year. My condition has deteriorated due to the lack of care or support from NZ health system for this debilitating illness. It’s absolutely appalling that Te Whatu Ora has zero interest in the 40,000+ people suffering from ME/cfs in NZ .

  • Posted by kimhalliday April 04, 2023 at 10:45

    I fully support this post and all the additional comments.

    My daughter was diagnosed with ME/CFS when she was 14yrs and is now severely ill and bed bound at the age of 31yrs due to the complete ignorance of the health professionals who prescribed CBT, Graded Exercise Therapy and consistently advised her to push through and aim to live a normal life. She also fell victim to many predatory alternative health "practitioners" due to her vulnerability and desperation to be well. All of this harmful ignorance and gaslighting has resulted in the level of severity that she suffers today, culminating in being informed by her GP (the only health professional who will provide home visits and who has, thankfully, been supportive and willing to be informed on this incredibly debilitating disease by research I have presented to her), warning that my daughter will not survive if she gets COVID due to the impact ME/CFS has had on her body. I had to stop work 3 years ago to provide her full time care and as a result of the risk to her life from COVID we live in isolation.
    I know we are not alone in this.

  • Posted by Snow April 04, 2023 at 23:54

    I fully support the proposal/idea, as well as the comment from ANZMES.

    I gave up work in 2015 to care for my wife who had developed CFS/ME in 2012. It took 18 months to diagnose by a process of elimination. She was advised to undertake CBT and GET by her then doctor. Her condition deteriorated rapidly until she became 99% bedbound in 2016.

    In 2018 my wife was admitted to the Older Persons and Rehabilitation Services ward at Hutt Hospital by sheer chance. A visiting locum had some experience of ME/CFS and brought her in having seen the referral was almost 2 years old. The locum used this as a learning opportunity for the regular staff, over my wife's 10 day stay. A wrap-round care package was created by a large multi-disciplinary team, both in hospital care and community support. We are incredibly fortunate. I illustrate this to show how service can be improved with existing resource.

    In 2021/22 I engaged with our then DHB, more specifically with the 2DHB policy model for then C&C and HV DHBs. I advised them I intended to take a case to the Human Rights Review Tribunal (via the Disability Commission) regarding the discriminatory practices that lead to those of us under DHB care receiving a lesser service to those under MoH care (Disability Support Services, "DSS"). Specifically that there was no equivalent option to Individualised Funding (IF). Rather than fight legally over the matter we came to a meeting of minds where 'exceptional circumstances' under the old policy could be applied to all recipients with similar 'very high needs' in the 2DHB regions. This gave some small(?) handful of people in our area more flexibility with how their care support package could be formed.

    I was surprised to hear recently that a similar approach is not available in almost all other areas around the country. This despite the new Health Organisation coming together in July 2022!

    I make my comment for two reasons; first to support the long-term views proposed by others in the comments here, as well as highlighting the urgency required in some actions. Second, to illustrate there are some fine examples of both good practice and interim work arounds already in existence from which learning can be drawn.

    I would be more than happy to discuss this further as well as the legal, reputational and political risks that may confront both Manatū Hauora and Te Whatu Ora in not doing so with some increased level of priority. My email contact address is available via the account I have registered on this system.

    Thank you.

  • Posted by louisefeelingangry April 05, 2023 at 11:57

    I fully support the CCI idea, the ANZMES comment, and all other comments. As a person experiencing ME/CFS and related conditions for the past 12 years, I am totally shocked and disappointed at how we are treated in NZ's health and disability system. Most GPs have very little understanding of what we are dealing with - yet these conditions are really common. Our community is truly a deeply "under-served" population group. This must change.

    I would like to see these urgent actions from Te Whatu Ora to start to improve this unjust situation:
    1) ensure that all health practitioners, including GPs, receive evidence-based education about ME/CFS and Long Covid - at medical school and in ongoing professional development.
    2) increase funding for NZ-based research into causes and potential treatments for ME/CFS and Long Covid
    3) collaborate closely with existing patient networks to develop dedicated, tailored support and health care for people with these conditions. This should involve multi-disciplinary teams, holistic wraparound support as happens with older people's services, and applying best practice evidence on what works in treating and managing these conditions.

  • Posted by ellemich13 April 05, 2023 at 16:03

    Please support us. After 10 years of ME/CFS I am tired of receiving no support from the health system whatsoever. I am tired of ill informed doctors who don't understand our illness and won't take us seriously. I am tired of receiving no financial support because I have an illness instead of an accident. I am tired of no treatment and no cure. I am tired of being a burden on my husband because we can't get any home help and he has to do everything. I am tired of being misunderstood and unsupported.

  • Posted by foxenbridge April 06, 2023 at 10:08

    When I was diagnosed in March 2022 by my GP, she sent me home with a link to a local support group but no information on illness management. I was then referred to a general medical specialist a CHDHB. I saw him 2 months later. By then I weighted 48 kg and was largely bedbound. He recommended CBT and graded exercise, told me he believed the illness was psychological and that I simply follow a 'healthy lifestyle'.

    At that stage I was desperately unwell, had to give up my study and work and soon had to be cared for by relatives. If either of the medical professionals had given me information on pacing, I believe I would not be as severe as I am today. I went home and kept pushing through my symptoms and became sicker and sicker. My weight dropped to 43 kilos as I could not digest food properly and had major food intolerances. I was assessed for home care, but turned down as I was able to get myself to the toilet and microwave. On that day, yes, I was able to, but on many other days I cannot. The assessors were completely ignorant of this illness and it's fluctuations, and one of the doctors also suggested I try graded exercise. Now, I am cared for by relatives anf friends and have some private care through fundraising, which will run out at the end of the year.

    It is untenable that I am this ill and unable to get medical support, either from my GP - who admits she is out of her depth with my illness - a specialist, or any sort of home help. Prior to this illness I had treatment for cancer and received incredible medical support; now I only go to my doctor if I am very ill, as getting there makes me sicker, and mostly she is unable to help.
    The two top priorities are that:
    1. Doctors are taught the benefits of pacing and make sure all new patients are supported with this - it's not rocket science.
    2. People with severe and even moderate ME receive home help so they can recover. If they don't not only will they suffer, but so too will the health system as they will continue to be a drain on it.

  • Posted by amscraig April 06, 2023 at 11:03

    I support the ability for our MoH to support our long covid whānau. They are struggling and need help immediately. We will only have more whānau getting long covid as well.

  • Posted by Pooka April 06, 2023 at 16:24

    I fully support the ideas put forward by CCI Support as well as the comment by ANZMES above.

    After living with ME/CFS for 40+ years and managing it enough to study and work, I now have long Covid and am unable to do a job I love.

    Ever since I was a child chronic fatigue has been a stigmatised disease with ridiculous amounts of misunderstanding associated with it, and as such I am very cautious about who I talk to about having this condition. I have found that many doctors as well as society at large are uninformed on what is involved in having ME/CFS, and this leaves patients not just with potentially damaging misdiagnoses but also open to bad management strategies that can exacerbate the disease (eg "it's all in your head" or graded exercise therapy).

    Although I have spent most of my life able to study and hold down jobs, recently I am close to being housebound with a family member supporting me financially and with household activities. There are those with ME/CFS who are much worse off than me, with no family and little to no state support: these people are particularly vulnerable and should be recognised as such. It's long overdue that ME/CFS and long Covid are recognised as disabilities and support given for people coping with these conditions.

  • Posted by Jbeans April 06, 2023 at 16:42

    I agree with the above. Have severe ME/CFS. Was told the symptoms were all in my head so pushed through . . . Lost the ability to walk and frequently lose speech too. Very angry health professionals in NZ know so little about this devastating illness and that it is not recognised as disabling.

  • Posted by wadeReny April 06, 2023 at 20:02

    I have suffered from ME for 30 years, I have been made to feel embarrassed, neglected, depressed, persecuted, inadequate, alone and being exhausted unable to seek help. I have tried suicide due to this persecution, there has been nothing available for me and because i look healthy i am disbelieved, luckily i had a diagnosis by one of the leading infections diseases specialists in the country, still this was disbelieved by many in the medical sector. Life has been a struggle as I feel alone and too exhausted to seek help.

  • Posted by Anonymouse April 08, 2023 at 14:05

    I have been chronically unwell for more years than I care to remember. I still have a few years before I reach the magical age when I can “retire”. In the meantime, I am reluctant to be labelled. I don’t want to be “disabled” however I may need that label if I am ever to get the support that I need from within the medical community. CFS/ME is another label that brings with it a number of negative connotations. It a double-edged sword and sometimes it is a toss of the coin. You are always wondering which side the coin will land on, on any given day. z

    Before any medical appointment or procedure there are the inevitable questions. Will the doctor listen to me today, will they read my notes, will they understand the vague or cryptic comments left by a previous potentially uninformed medical professional, will they refer to test results as the holy grail of medicine, will they take me seriously or will they dismiss my concerns, are they laughing at me behind my back in a snide “ I have studied too many years to be told anything new” kind of manner, will they make assumptions about me without taking the time to talk to me, will they express empathy but place me in the too hard basket, will they really understand or are they just going through the motions.?

    To the casual observer I am fit and relatively healthy. The reality however is far different. I am a swan, calm and serene on the surface. Underneath I am furiously paddling away in an effort to maintain my composure, and that effort in itself is both physically and emotionally draining. My options are twofold. I can carry on until the point of exhaustion at which point I can either have a total breakdown or I can just give up on life entirely. I have never been a person who willingly gives up on anything, so I just carry on. The fact that I have no option but to carry on is, in itself, seen as a sign that I am doing well. Essentially it is a case of coping until you physically, emotionally, or mentally can’t. Tossed to the wayside are things that “normal” people take for granted such as a career, relationships, family, hobbies, and interests. These are replaced by the day-to-day grind of managing a chronic illness that is often misunderstood.

    The question is “is this fair or acceptable in today’s society with today’s values?” and “is it not a more efficient and effective use of resources to support people so that they can contribute to society in a meaningful way?”.

    What I am ultimately looking for from within the health sector is:

    • Respect for me as an individual and not just as a patient.
    • Wider acknowledgement of CFS/ME as a chronic condition and disability.
    • Improved communication including actively engaging with me as a patient.
    • An understanding of my individual needs and not the needs of the stereotypical patient.
    • Ability of specialists to work with other specialist disciplines where appropriate and putting my individual needs as a patient above any measures of performance.
    • Wrap around support that is based on a coordinated approach that is centred around me and my needs and not around a medical professional e.g., specialist, GP or nurse.
    • Removing arbitrary measures that can’t take into account complex needs or address a situation where specific medical knowledge is lacking due to a lack of targeted research.
    • Access to funding to meet my specific needs as a patient including appropriate household help, physical therapy, additional nutritional requirements, and medicines.
    • Actively engage with and work with other agencies such as WINZ to ensure that my needs are being met regardless of which agency is ultimately responsible.
    • Improved training of health professionals to allow them to better communicate with patients and assess their needs as an individual.
    • Research into long term chronic conditions such as CFS/ME with the aim of developing science based interventions that will improve the quality of life of patients living with this condition to the extent that they can become more fully functioning members of society.

  • Posted by vision4ME April 11, 2023 at 13:08

    The comments below this 'idea' make for harrowing reading and very clearly demonstrate the urgent need for much better support for people with ME/CFS, Long Covid and similar illnesses.
    I support CCISupport's call to partner with community groups and to fund and enable them to provide this desperately needed support as well as to create further practical, up-to-date medical and other education resources.

    It is notable - and an indictment on the NZ health system - that much of the best educational materials have been created without public funding by patient group volunteers, many of them ill themselves. Those volunteers have the knowledge, experience and competence to do the job but they need and deserve much more support from Te Whatu Ora, including help with disseminating the resources like those mentioned by CCISupport to all health professionals.

    My complementary 'idea' titled "National postinfectious illness telehealth 4 ME/CFS, Long Covid & related illnesses" outlines how improving medical care and medical education could be tackled in tandem.

    Regarding points 4 and 5 of CCISupport's 'idea', I agree that the failure of Te Whatu Ora to take a clear stance on ME/CFS being a disability and on what constitutes appropriate and inappropriate treatments has lead to unnecessary suffering by people with ME/CFS, with some being pushed to undertake ineffective and potentially harmful 'therapies' and many more missing out on financial and other support. The comments here make this crystal clear. The ethical choice for Te Whatu Ora is to support the efforts of patient organisations to secure fair treatment and appropriate care for people with ME/CFS and similar illnesses.

  • Posted by judyt April 16, 2023 at 15:29

    I support CCIS & ANZMES with their efforts to improve the lives of people with ME/CFS & Long Covid.

    I have had ME/CFS for 15 years, & it took a year to diagnose. An Endocrinologist finally gave me a CFS diagnosis, but my preference is calling it ME or Myalgic Encephalopathy/Encephalomylitis due to the neurological effects this disease has on my functioning.

    I had been fortunate to keep working - initially at various jobs full-time, until of all places the DHB I worked for (BOPDHB) failed to take into consideration my ME status as well as my increasing workload without extra personnel support, ending up in a total mental & physical breakdown. I am now only able to work a part-time job, with very judicious use of my energy levels on my non-work days. Obviously this has also meant a drop in my ability to earn thereby putting pressure on my husband to pick up that financial slack. He does this willingly, along with putting up with household jobs not getting done & accepting my non-ability to accompany him on some weekend visiting/activies if I need to make sure I have enough energy for my work days.

    To say that it is a psychological problem & we just don't want to be active, is not only insulting but in most cases very far from the truth. Many ME/CFS or Long Covid sufferers have been extremely active & fit people. We do not want to be like this!

    Without the recognition of Te Whatu Ora to categorise ME/CFS & Long Covid as bona fide conditions & therefore make it possible to support sufferers with financial & practical assistance, we will be no further ahead than in 1988 when the first working case definition for ME/CFS was first put forward. That's over 30 years with no real gains.

    Come on Te Whato Ora - this is 2023. If NZ can recognise & accept gay marriage & non binary identities amongst other things within the last 30 years, why can't you recognise ME/CFS & now Long Covid as legitimate disabilities & start assisting clearly in-need New Zealanders. And to finish I quote from your webite: 'Te Whatu Ora
    We're building a simpler and more coordinated health system that will support all New Zealanders to live better and longer. '

    Please read your own words, & walk the talk.

  • Posted by hesterbox April 17, 2023 at 14:38

    I completely agree with this.
    I have had ME for a total of 23 years.
    I had 10 years remission after the first stretch of 5 years and then it came back. If I had received an early diagnosis after my relapse and the correct guidance about rest and pacing I believe my health would not have deteriorated as much.
    It is shocking that there is so little knowledge about ME in our medical system and no comprehensive support from our health system.

  • Posted by Kaye April 18, 2023 at 12:16

    As a person with ME/CFS in full endorse this submission.

    Health Professionals in New Zealand need to understand that ME/CFS is not a psychological issue, but a physiological disease and needs to treated as such.

    I have personally had several extreme examples of doctors, and other healthcare professionals and employees of MSD make unprofessional and harmful statements. Including a Paediatrician at age 14 telling me I was like “a little old lady who likes to stay home with her cat”, or other classics, “you don’t look sick”, “we all get tired”, and “no one will want to be in a relationship with you because you are sick”. This also effects other interactions with other professions outside of the medical field such as my school. They didn’t see a sick kid in need of support, but a kid who didn’t want to go to school, because of what the paediatrician reported.

    Now as an adult I live with my parents who are my caregivers because I only have 30 to 40 percent of the energy of a healthy person on a good day. On a bad day I am in bed, in a dark room in pain.

    There are so many others in our community who have the constant stress of keeping a roof over their heads, getting food on the table while trying to care for themselves and/or their whānau. While dealing with Doctors, MSD, and family members, and employers who don’t believe they are sick. Again, while operating on drastically reduced energy levels.

    People and their and whānau with this condition need more support. Early intervention is key to better management and outcomes, and will save money in the long term. There are so many who are in desperate need of medical, in home, and financial support for themselves and their whānau.

  • Posted by Kiwij64 April 18, 2023 at 17:00

    As a person with complex health conditions, and Fibromyalgia, I fully endorse this report.
    Education and promoting these long term illnesses is important for those suffering ‘invisible’ disease(s). Too often, medical professionals do not give the patient time or the resources to help, often battling with their own staff shortages or funding issues. We, as a group, want to be treated with dignity, however when confronted with inadequate treatment and funding inadequacy, compared to other well-known diseases, we find we’re just left to struggle on in a community who tells us ‘we look well,’ when we are clearly not.
     We need education of the public as other diseases have had. We need funds available to the patient and their whanau, to help those suffering to receive the assistance they need for a quality of life, and not suffer the indignity of having illnesses that no one seems to care about.

  • Posted by Kaylene April 22, 2023 at 15:21

    My teen has had confirmed and diagnosed long covid after an initial March 21 covid infection and recovery. Then got worse after second covid exposure Dec 22 and, we are, again waiting to see our paediatrician regarding likely POTS due to second exposure.
    I now have a child who can't attend school, is sick daily and have absolutely no guidance from our healthcare professionals, as they don't have much information to pass on to us to help her. This is absolutely ridiculous that our children have to journey with no support except don't do to much activity and eat well balanced diet??? Really? Come on. From a parent who is not the only parent trying to locate good information to help their child have some normality with very little help. I am thankful for the longcovid kids Facebook support group as we can share research from the UK and states which may or may not help our kids. This support is not coming from our New Zealand health system and needs too. I am looking at this from a concerned parents perspective as watching my child have no support as we try navigate this journey the best we can with little resources. It needs to change and quickly.

  • Posted by EnzoBenzo799 April 22, 2023 at 18:32

    My daughter has long covid in the form of Covid acquired Irritable Bowel Syndrome, she now has a huge list of foods she can’t eat, she deals with stomach pain, vomiting, diarrhoea, loss of appetite and weight loss. There is no help for her, we were told she should just not eat the food that upsets her stomach, and that a referral to a dietician could take months if not years for her to be seen. How is this ok? She is 12, no one can tell me if this is permanent damage to her gut or if she will get better.

    It would be good if some government body could start counting/recording long covid so that support is there for people who need it.

  • Posted by larisahockey April 24, 2023 at 09:51

    I support the comments by CCI and ANZMES and all the subsequent comments.

    My three teenagers and I have been diagnosed with ME/CFS/Long Covid. This is completely debilitating and our lives as we knew them have stopped.

    I have been horrified to find how little medicine knows about this condition and how little support there is. What support you receive comes down to chance - what does your doctor know? What do they believe about the condition? Do they think it is a mental health problem? Some will order tests for POTS, others won't. Some will prescribe LDN, others won't.
    Some still prescribe GET and CBT even though these have been discredited by WHO and the NICE guidelines and shown to be harmful.

    We urgently need consistent training for our doctors. There is plenty of research now proving the biological basis of ME/CFS and it is getting closer to understanding the mechanisms and being able to provide diagnostic tests. Doctors need to know this.

    This kind of information would be far more valuable to have at the GP conference than promoting the Lightning Process which is a dangerous and poorly studied technique. Yes it may help a subset, perhaps those who hsve healed more than they thought and are held back by fear, but it has also severely damaged others and doctors should not be advocating for such an experimental and dangerous treatment. They wouldn't do so if they properly understood the biological mechanisms.

    We need our doctors educated. And we need to support research into this debilitating disease.

  • Posted by larisahockey April 30, 2023 at 19:23

    The Aotearoa Long Covid Support group agrees with the points put forward by ANZMES and Complex Chronic Illness Support Inc.

    Ensuring GPs and specialists are upskilled on post-viral conditions is essential. MECFS and Long Covid need to be understood by GPs as a complex medical condition, affecting multiple systems of the body. As part of this upskilling the Clinical guidelines put out by the MOH should continue to be updated as more research comes out revealing biological impacts and mechanism, and should be mandatory reading.

    There is still a tendency for GPs to dismiss LC symptoms as anxiety, and therefore it is imperative that the most comprehensive information is available to GPs at all times. It is natural for patients to have anxiety as a result of their illness, and psychological support should be made available, but not as a treatment for the LC symptoms.

    Long Covid clinics need to be established as a priority enabling patients to quickly and easily receive the support they need. While there are no treatments at this stage, physios, cardiologists, and other specialists all have a part to play in reducing symptoms and ruling out other conditions.

    LC patients often need extended time off work and financial support through this time. The process of obtaining this support needs to be streamlined between the MSD and MOH.

    Ultimately LC needs to be recognised as a severe and debilitating disease, which can impact a person's quality of life, affecting their ability to work, socialise, exercise, or participate in their community. The GP as the first port of call needs to be an empathetic source of support and guidance, while there needs to be a solid framework of support available to wrap around an individual when dealing with the impact of such a life changing condition.

    Larisa Hockey on behalf of Aotearoa Long Covid Support Group

  • Posted by larisahockey April 30, 2023 at 19:45

    Long Covid Kids New Zealand is part of the International charity Long Covid Kids,. LCK which has links to the WHO, their resources are used in the NHS and the charity has received multiple awards for their resources and commitment to children's health.

    On behalf of LCKids New Zealand, we ask that GPs and Pediatricians are trained to recognise long covid in children, and that they be dedicated to staying up to date with research and developments. We also ask that the Ministry of Health advocates for clean air in schools, and supports research into diagnostic testing and treatments.

    1. Education

    Having a child with Long Covid is heartbreaking: they often can't go to school, participate in their activities, or play with their friends, and their future can look uncertain. It is vital that parents see doctors who understand long covid, can recognise and diagnose it, and who can work with the parents to support the child through treating symptoms. We often hear stories of children being diagnosed with anxiety when it is obvious that their physical issues started with the covid infection so it is important that doctors recognise the difference between a child who has anxiety and a child with long covid. Children and young people may become anxious and depressed due to their illness, but that is different to their illness being caused by mental health problems and this distinction must be clear. Parents need to feel that doctors are on their side, that they are a team working together to support a child in a very difficult and distressing situation.

    2. Mitigation

    We are putting an entire generation at risk as children are repeatedly exposed to the virus in schools. The Ministry of Health needs to look at not just what needs to be done when children are unwell, but what can be done to prevent long covid in the first place. Please prioritise getting safe, clean-air schools, and raise awareness of the risks associated with repeated infections so that parents and schools will do all they can to minimise infections.

    3. Research

    Currently Dr Anna Brooks, an immunologist at the University of Auckland, is crowd funding for her research into the mechanics of long covid where she aims to find a biomarker. We need diagnostic tests to streamline the process for patients so please support her work.

    The research coming out on the effects of Covid-19 infections is dire with the World Health Organisation warning people of those risks, saying that 10% of all infections will lead to long term health issues. The health of our children and therefore the future of our country is in jeopardy. Please educate our doctors, reduce risk, and contribute to research into diagnostic testing and treatments.

    Larisa Hockey
    Long Covid Kids NZ
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