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

About CCI Support

We are an Aotearoa / New Zealand registered non-profit charity and our purpose is to improve the quality of life of people who live with complex chronic illnesses, 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.

Our vision to “Empower People Towards Wellness” is delivered through support services and resources offered to members by our Health & Wellness Facilitators and through our innovative award-winning “Towards Wellness” Programme. We work with our members, their families, and their community by providing practical tools and helping them to develop tangible next steps for their journey towards wellness.

CCI Support, is more than just an organisation; it’s a beacon of hope and understanding for those facing the challenges of chronic health conditions.

At CCI Support, we understand the unique struggles and uncertainties that come with managing chronic illnesses. That’s why we’re committed to providing comprehensive assistance and a supportive community for individuals and their loved ones every step of the way.

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.


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.


  • 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 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 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.

 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. 

* https://meassociation.org.uk/literature/items/long-covid-and-me-cfs-are-they-the-same-condition/ 


Complex Chronic Illness Support's vision is to Empower People Towards Wellness. Our purpose is to improve the quality of life of people who live with 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.

Charlotte  (ex Facilitator) explains who CCI Support is and what we are trying to achieve.

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.

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