Looking well but feeling extremely unwell?
Do you suffer from…
Persistent fatigue?
Muscle or joint pain?
Impaired memory & concentration?
Disturbed sleep patterns?
Digestive issues?
Our support service may be able to help
As a community health agency that supports people with Chronic Fatigue Syndrome, Fibromyalgia and other related illnesses. Complex Chronic Illness Support has a vision to “Empower People Towards Wellness” and our purpose is to improve the quality of life of people who suffer from a complex chronic illness, as well as that of their loved ones.
Illnesses We Support
Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome
Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome (CFS) - an abnormal immune system response to any number of infectious or environmental triggers, causing a long-term illness that can result in significant disability.
The main symptoms include
- persistent and overwhelming fatigue
- post-exertional malaise
- muscle and/or joint pains
- cognitive dysfunction
- sleep disturbance
- digestive problems
It is estimated that there are between 16 000 to 20 000 people with ME/CFS effecting people of all ages, ethnicity, and socio-economic groups, although there is higher prevalence among women than men. ME/CFS is challenging to diagnosis in which other conditions need to be ruled out and a specific set of diagnostic criteria met. There are currently no specific medical treatments for ME/CFS.
Symptom severity ranges from ‘mild’ (just able to manage work but at the expense of other areas of life), to ‘very severe’ (bed-bound, tube-fed, paralysed, without speech). Even symptoms which are classed as mild can involve the loss of at least 50% of normal function.
Fibromyalgia
A chronic condition causing fatigue, widespread pain, and tenderness throughout the body and often co-exists with ME/CFS and/or many of the symptoms of this condition. People with Fibromyalgia generally experience pain in specific points around the body and these points are used as a gauge for diagnosis.
Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.
For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities. Fibromyalgia affects two to four % of the population, mainly women, although men and adolescents can also develop the condition.
Symptoms:
- Chronic Widespread Pain
- Moderate to extreme incapacitating fatigue
- Sleep Disturbances
- Cognitive Difficulties
- Headaches
- Sensitivity to touch/light/sound
- Anxiety and/or depression
- Impaired coordination / balance
- Gastrointestinal problems
- Chemical senstivities
- Orthostatic intolerance
Post-Viral Fatigue / Syndrome
In most straight-forward viral illnesses, recovery takes 2-4 weeks, with symptoms disappearing by six weeks. However, in a small percentage of patients the duration until recovery can take up to several months. If symptoms remain after 3-6 months with the illness unchanged, a change of name/diagnosis to CFS/ME is appropriate.
Dysautonomia
Dysautonomia is a term used to describe autonomic nervous system dysfunction. Our autonomic nervous system acts largely unconsciously and regulates body functions.
A common form of Dysautonomia for people with ME/CFS is Orthostatic Intolerance, which is often caused by Neurally Mediated Hypotension (NMH) or Postural Orthostatic Tachycardia Syndrome (POTS).
CCI Support only supports a few Dysautonomia conditions; Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH).
Long COVID
Long COVID is a term used to describe the symptoms that continue or develop after your initial COVID-19 illness and cannot be explained by any other condition. Long COVID is usually diagnosed when symptoms continue more than 3 months after the initial COVID-19 diagnosis.
For some people, corona virus disease 2019 (COVID-19) can cause symptoms that last weeks or months after the infection has gone. This is sometimes called post-COVID-19 syndrome or “long COVID”.
Research from Professor Tate states that people who develop Long COVID develop a chronic inflammatory immune response in the body system. This has strong neurological symptoms like brain fog and sleep dysfunctions. Inflammation in the brain is called neuro inflammation. The brain is misfunctioning and communicating back to the body that it is in danger and the inflammatory response just keeps going, resulting in a vicious cycle and on-going disease.
Both Myalgic Encephalomylitis (ME/CFS) and Long COVID share certain key symptoms and may exhibit a comparable degree of fluctuating functional impairment. Nevertheless, there are significant distinctions that set apart individuals with Long Covid from those with ME/CFS
There seems to be 3 very distinct variations of Long COVID:
- A significant amount of people are presenting with symptoms directly related to COVID with ME symptoms too
- Some people are presenting with ME symptoms and no COVID symptoms - labelled Post-Covid ME/CFS
- A smaller group of people with COVID symptoms ONLY - These people are best treated/managed directly within the medical system.
- We are also seeing a considerable amount of people with a ME/CFS history, relapsing with ME/CFS after getting COVID-19
COVID Symptoms - A considerable portion of individuals with Long Covid experience an additional layer of symptoms directly linked to the involvement of various organs such as lungs, heart, blood vessels, liver, kidneys, brain, nervous system, gastrointestinal tract, or skin. These symptoms typically stem from damage or disruption in the function of these organs during the initial infection. Common Covid-specific symptoms include*:
- Shortness of breath and/or cough
- Chest pains
- Cardiac arrhythmias or heart-rhythm disturbances
- Palpitations upon exertion
- Periodic fevers
- Loss or alteration of taste (parosmia) and/or smell
- Abdominal pain and diarrhea, which may indicate post-Covid irritable bowel syndrome or an inflammatory bowel syndrome
- Skin rashes, including phenomena like 'Covid toe'
- Hair loss
A diagnosis of Long Covid does not require the presence of the very significant (ie 50% or more) functional impairment relating to physical and mental activity that is required to confirm a diagnosis of ME/CFS.
Treatment for Long COVID is similar to that of ME/CFS. It is about managing symptoms and pain.
The key to symptom management is pacing.
If PEM (post-exertional malaise) is experienced, you must avoid exercise and activities that cause fatigue or increased symptoms, and conserve your energy.
* https://meassociation.org.uk/literature/items/long-covid-and-me-cfs-are-they-the-same-condition/
An Existence Project
A paper stop-motion animation about what it’s like to live with mild or moderate ME/CFS. Inga made this short film so people would have something they could show their friends and family to help them communicate the complex aspects of living with this chronic illness. Created by: Inga Topolnicki and added to our website with direct permission.
What services we provide:
To ask for help, please complete the Referral form
CCI Support is now a national service. We can work with people throughout New Zealand. Tauranga, Hamilton and Wellington have local Facilitators, all other areas are currently supported online and via phone at this stage.
We also offer support for family and friends of people living with the conditions that we support. The person does not have to be a current CCIS member.
Frequently Asked Questions
Who is CCIS?
CCIS (Complex Chronic Illness Support) is an Incorporated Society*, that is also a non-profit registered Charity in New Zealand.
We have five qualified staff in Tauranga, Whakatane, Waikato, and Wellington, and also provide remote and virtual support to all other parts of New Zealand.
Our administrative office is based in Tauranga. Consisting of a facilitator support administrator, a funding manager, and a CEO.
We have nine members, placed throughout the North Island, that bring together business acumen and support to maintain the forward-thinking services that this agency has provided for over 41 years.
Whilst we are the largest one on one support service for people with ME/CFS in New Zealand, the reality is that we are made up of many smaller regional groups, providing personalised support and care for people with ME/CFS and FM. This is achieved through a fabulous bunch of volunteers placed throughout the country to facilitate social groups and provide support for the Facilitators, as well as manage our social media.
As an incorporated society, we are member-focused. Members vote on constitutional changes, members pay an annual fee, and have the ability to bring communication to the CEO and Board, on how CCIS is run.
To be a member of CCIS there is a small annual fee of $40. This fee helps our Funders understand how much our members respect and support the work we do. This in turn often means that they are more likely to be generous with their funding toward us. Leading us to develop and provide the services we do. This fee can be paid off for as little as $1 per week. Members can also get support from the Ministry of Social Development via the Disability Allowance or Temporary Additional Support, if their GP signs it off.
- An incorporated society is a membership-based organisation that has registered under the Incorporated Societies Act 1908
What do we do?
We provide qualified one on one facilitator and group support to people with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome/CFS), Fibromyalgia (FM), some Dysautonomia’s (POTS and Orthostatic Intolerance), and Long COVID.
We are well aware that these conditions do not stand alone, that they often come with co-morbidities. We are NOT a medical agency; we are a social support agency. This means that we can work with the entire family and be holistic in our care. We support the medical care provided by health professionals and allied health professionals. We can also provide names of specialists you can access.
We walk alongside our members on their journey towards wellness (whatever wellness may look like for them). We provide holistic and completely non-judgemental support.
We teach symptom management and provide the resources to give members a personalised toolkit to manage their condition, within their capacity/capabilities. With our support, people with complex chronic illnesses can, in time, develop an increased ability to participate in family, social and community life, and lead a life that is fulfilling and meaningful for them.
We also provide low-level advocacy for people needing support with Health Professionals, MSD, and workplaces, as required.
CCIS works within the Te Whare Tapa Wha framework, this model focuses on the four cornerstones of health. Should one of the four dimensions become damaged or missing, the person’s sense of well-being is unbalanced, this is not a healthy state. We work holistically to support each member and their loved ones, understanding that each of the four cornerstones are important to their well-being.
- Taha tinana (Physical health)
- Taha wairua (Spiritual health)
- Taha whanau (Family health)
- Taha hinengaro (Mental Health)
We can work with family/Whanau and supportive friends of people living with chronic illness. We explain to loved ones, how this illness affects people and how they can best be of support. We provide them with a deeper understanding of what this person is going through.
Please be aware our resources are stretched and are provided by Grants and Donations. But in all aspects, we are good stewards with the money that does come in. ALL money is accounted for and is used to provide support directly to members. We do not hold onto any profit.
What Services do we provide?
Health and Wellness Facilitators
We have qualified Health and Wellness Facilitators based in the Bay of Plenty, Wellington and Waikato and virtually throughout NZ who work with members and the community to provide support, mentoring, advice, counselling, and advocacy. This essential role is undertaken through home visits, and phone and online contact, in addition to guidance and support through regular support group meetings, education sessions, access to counselling service and the CCI Support library and newsletters.
Our Staff have a range of qualifications including
- Comprehensive Nurse (Psych and General)
- Counsellor / Diploma in Health & Human Behaviour
- Bachelor of Community Health / Diploma of Rehabilitation
- Bachelor of Science / Teachers Diploma / Mindfulness Coach
- Masters in Health Psychology / Bachelor of Science with Clinical & Health
Support Group Meetings
The support group meetings offer the opportunity for members to have a group catch-up with our Health and Wellness Facilitators, and to share ideas and support with one another. The objective of the group meetings is to give members access to tools and resources to enable them to develop their own solutions to issues, and manage their own illness, developed from conversations in a confidential and safe space.
Social Groups
The CCI Support social groups are locally placed around NZ and also available online. Once you are a member, you will be given all the details for the groups available to you.
Online Support and Resources
We have a Members Only section on the website, it gives links to:
- Meeting information (Educational and Social)
- Resources for managing symptoms
- Forums to connect with other members and ask questions
- Newsletters and information about what is going on in CCIS
- Regional updates for the Facilitators – so you know what’s happening in your area
Towards Wellness Programme
The CCI Support Towards Wellness Programme offers the best of research-based knowledge into an easy-to-understand package to help people living with complex chronic illness begin to find their next steps towards wellness. Participants learn foundation principles to assist them in navigating their journey, and in creating an individual road map to support increasing health and wellness.
The programme is the first of its kind in New Zealand, winning the Highly Commended Innovative Provider Award at Adult Learner’s Week in 2016, and is endorsed by New Zealand’s leading authority on CFS /ME, Doctor Ros Vallings.
The course structure comprises two hours fortnightly (in total 10 workshops) based at the premises of CCI Support, or, more recently online with the impact of COVID-19, with a follow-on 5 workshops to reinforce key learnings. Guest speakers are also invited, and include a nutritional coach, physiotherapist, and general practitioner. Workshop topics include Understanding the Conditions, Systems and Stages, Pacing – Balancing Activity and Rest, Stress Management, Sleep, Nutrition, Pain Management – A GP’s Perspective, and Building Your Support Network.
Towards Wellness Hub
The Towards Wellness Hub is an online knowledge base of content, resources, and services, available 24/7 for those in the community with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Fibromyalgia, Dysautonomia, and Long COVID, their whānau, and their communities, throughout New Zealand. It’s also a resource for health professionals and other organisations and individuals who wish to learn more about complex chronic illness. The Towards Wellness Hub is a new way of delivering the resources and services of CCI Support to clients and interested parties, which they can access as needed, from their own home and environs. As with many health issues and disabilities, the hardest time to cope is when people are alone. With access to the hub, clients can feel accepted and safe, with access to a familiar support system at their most vulnerable times.
There is an extra cost of $200 for this course.
Community Workshops
Complex chronic illnesses affect not only the individual, but also those people around them. Compounded by illnesses where symptoms and their effects fluctuate, and which are hard to manage, difficult to understand and often misunderstood, can prove to be challenging for whanau, friends, carers, and the wider community. CCI Support provides workshops to assist in educating those surrounding an individual so they can understand and support their loved ones.
Advocacy and Awareness
At CCI Support we are continually striving to raise awareness of all complex chronic illnesses. Increasing awareness is a key goal, ultimately enabling us to support more people, increase our membership and develop our services further. Recently this included meeting with local MPs to discuss party policies and support with regard to complex chronic illness.
We provide low level advocacy, by providing supportive documentation and support for meetings with health practitioners, WINZ, family members and members workplaces, where appropriate.
Online Support – Facebook Community
CCI Support has an active online community, comprising two Facebook pages – a public page to raise awareness, and a closed private members page to provide connections and reduce isolation, providing a way to keep in contact and give group support to each other.
Newsletters
CCI Support creates and distributes a comprehensive newsletter to our members, including up-to-date research, information, strategies, techniques, wellness stories, plus links to events and meetings. This is a key tool to keep members involved with our organization and other members.
Library
We offer a comprehensive library service to our members, with access to specialised books and information to help them through their journey to wellness. We hope to develop this further in the coming year and make it more easily accessible to more members.
Group Seminars
We provide events, specialised speakers, doctors, nutritionists, mindfulness coaches, physiotherapists and other experts in this area.
How do we achieve this?
A person comes to CCIS, either via a self-referral, GP referral or a family member reaching out asking for help. They are then assessed to see if their condition fits within our illness parameters. We then ask for the person to become a member, so that they are able to get the support we provide.
We then provide a telephone or telehealth appointment that is 30-45 mins long, this is where we hear their story, assess their needs and then provide some support, advocacy and tools to help them manage their symptoms.
Our Facilitators encourage attendance to the online support group. These are held and are themed educational sessions provided via zoom (easy click link access). Research suggests the importance of social connection is beneficial to a person’s wellness journey.
As a charity, our funds are EXTREMELY limited and group education is a way we can be good stewards of our resources, as well as connecting our members with other people going through a similar journey to themselves.
4-6 weeks after a support assessment (or at a time agreed upon) the facilitator will contact the member back, to see how they are going, reassess their personal goals and provide more tools, strategies and a plan moving forward.
What else do we ask of you?
We highly recommend that our members attend a social group, these are available in person in some regions, otherwise, we have a few online ones (men’s, women’s, mums, young people etc). Often one of the first things to go when someone is unwell is their social support system. As a human, personal interaction is incredibly important, to have someone in their corner that completely understands can be very encouraging.
There are mindfulness/meditation groups that meets virtually, as well as breathing and restorative movement short videos to help you.
We have a private group on Facebook where members can reach out to others in a similar situation for advice, support, and just a connection with someone else who “gets it.” We understand that our members can have maladjusted circadian rhythms, and although our facilitators are only available during office hours, within the private Facebook group there are other members to talk to. This group is moderated by volunteers. We recommend 1737 is used for counselling needs.
We have counsellors available at times to provide free counselling. We are in the process of trying to raise the funds to get a counsellor on staff.
The Towards Wellness Programme is currently being held online. It covers many topics that are incredibly important or relevant to those with ME/CFS and FM. This can be done in a person’s own time, and at their own pace – in bite-size pieces that support your energy envelope requirements. This also includes a monthly zoom catch-up to ask facilitators any questions. This programme is highly recommended and was endorsed by Dr Ros Vallings. In 2016 the programme won a local Adult Learning Innovative Provider Award.
Wellness does not mean perfectly healthy. It means your health is at a level where you can manage your life, develop an increased ability to participate in family, social and community life, and lead a life that is fulfilling and meaningful.
We find that members who (within their limitations) join in with one-on-one support, group meetings and social groups progress on their journey towards wellness more effectively than those who try to go it alone.
Suggesting loved ones also join in on a member’s wellness journey, helps them to support our members in their own environment. This then makes long-term progress towards the life that our members find meaning in.
Do you know of any GP’s who understand ME/CFS/FM/POTS, in my area?
Yes, each region has a list of supportive GPs. We have been compiling this list from member recommendations over many years. Please be in touch with your Facilitator for this list. Please note: CCIS takes no responsibility for the treatment provided or any costs incurred seeing any of the Health Professionals on this list. We do not personally recommend these people, it has been compiled from asking our members directly.
Where are you in New Zealand?
We have Facilitators in
- Tauranga / Western Bay of Plenty
- Whakatane / Eastern Bay of Plenty
- Waikato
- Wellington
- We also provide remote services to all of New Zealand, via way of phone calls, telehealth appointments and online support and social groups.
Do you provide advocacy services?
We provide low level advocacy services. Letters to take to employers, schools, Health Professionals, MSD etc. If you have a local facilitator in your area, we may be able to attend some appointments with you.
Do you support other conditions?
Unfortunately, we do not have the expertise to support chronic pain conditions, rather we support illnesses which may have a pain component. If you have a condition that sits outside our scope of practice, please find below links for helpful information and support
Arthritis https://www.arthritis.org.nz/
https://www.healthnavigator.org.nz/health-a-z/o/osteoarthritis/
Chronic pain
https://www.healthnavigator.org.nz/health-a-z/c/chronic-pain/
There are many chronic pain groups on Facebook to choose from: FACEBOOK SEARCH
You may also be eligible for a referral with the Tauranga pain clinic which can be accessed through your GP
Do you offer any support to non-members?
We are a member based charity service. All of our services are available to members only. We ask for a nominal $40 pa joining fee. This gives you access to the services provided. Some courses may have extra charges.
I am in a crisis and need support NOW
CCISupport is not an acute service, so in a crisis please contact your GP.
Where to find other help and Support
- Need to talk? 1737 or text 1737 for support from a trained counsellor
- The Depression Helpline: 0800 111 757 or free text 4202
- Healthline: 0800 611 116
- Lifeline: 0800 543 354
- Samaritans: 0800 726 666
- Youthline: 0800 376 633 or free text 234 (8am-12am), or email [email protected]
- The Lowdown: thelowdown.co.nzor free text 5626
- Kidsline (ages 5–18 years): 0800 543 754
- OUTline NZ: 0800 688 5463 for confidential telephone support for the LGBTQI+ family, as well as their friends and families
- Alcohol Drug Helpline: 0800 787 797 or free text 8681
- Gambling Helpline: 0800 654 655 or free text 8006
- What’s Up? whatsup.co.nz (for 5–18 year olds). Phone counselling is available Monday to Friday, 1pm–10pm and weekends, 3pm–10pm. Online chat is available 7pm–10pm daily.
- Womens Refuge: https://womensrefuge.org.nz/ 0800 733 843
- Shine: Domestic Abuse Services: https://www.2shine.org.nz free call: 0508 744 633 (9am and 11pm)
- Hey Bro: https://www.hewakatapu.org.nz supporting men to be free from violence 0800 HeyBro (439 276)
- Family violence information line Areyouok.org.nz to find out about local services or how to help someone else: 0800 456 450
- Need to talk? Free call or text: 1737 for mental health support from a trained counsellor
- Youthline: Youthline.co.nz: 0800 376 633, free text: 234, email: [email protected]
- Shakti – for migrant and refugee women – 0800 742 584 – 24 hours
- Elder Abuse Helpline 0800 32 668 65 – 24 hours
In an emergency
If it is an emergency and you feel that you or someone else is at risk:
Call 111 or Go to your nearest hospital emergency department (ED) or Call your local DHB Mental Health Crisis Team (CATT) 0800 611 116 and stay until help arrives. If someone is unconscious, call an ambulance (111).
How can I contact my Facilitator?
Via email, phone or text. If calling outside of work hours, please leave a message and your Facilitator will be in touch at their earliest convenience.
Office hours are Tuesday to Friday 9am – 2.30pm
0800 224 787 or text 022 658 0251
Our Blog
Our Blog has some wonderful stories and encouraging words from other members. It’s well worth checking out.
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Let’s talk
If you’d like to learn more about any of our services, or get involved, we’d love to hear from you.