07 281 1481 or 0800 224 787 or Text 022 658 0251 [email protected]

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

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

A term for a group of diseases that include postural orthostatic tachycardia syndrome (POTS) and (OI) Orthostatic Intolerance. In these conditions the autonomic nervous system (ANS) is dysregulated which can lead to blood pressure problems, heart problems, trouble with breathing and swallowing, and erectile dysfunction in men.

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 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”.

The latest 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.

General symptoms include:

  • fatigue
  • fever
  • abdominal pain
  • joint pain
  • muscle pain
  • nausea and vomiting
  • diarrhoea
  • weight loss
  • reduced appetite
  • sleep issues.

Neurological symptoms include:

  • loss of concentration or memory issues (cognitive impairment, 'brain fog')
  • headache
  • sleep disturbance
  • pins and needles and numbness
  • dizziness
  • delirium (in older people)
  • lack of strength in arms or legs (mobility impairment)
  • visual disturbance.

Ear, nose, and throat, Cardiovascular and Respiratory symptoms.

ANZMES: Preventing Long COVID

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.

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.

https://www.facebook.com/anexistenceproject

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

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 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.

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

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).

What Services do you 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 Social Work with Honours
  • 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.

 

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.

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.

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.

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 provide many resources to our members including our innovative award-winning “Towards Wellness” Programme. We work with our members, their families and their community providing practical tools and developing strategic plans on how to find their next steps towards wellness and educate, empower and give them the tools to manage their symptoms.

If you would like some help, please complete the self-referral form below and a Health and Wellness Facilitator will endeavour to get in touch with you within 10 working days.

We do ask for a nominal membership fee that will cover your support for 1 April till 31 March annually.

What services we provide:

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/

https://www.retrainpain.org/

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

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.

Our Blog

Our Blog has some wonderful stories and encouraging words from other members.  It’s well worth checking out.

Pets

Pets! They are such wonderful sources of  unconditional love, support, and connection. Research has shown that having a pet can be helpful for your mental and physical health. They provide much more than just companionship, as they can help reduce your stress...

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.