About CCI Support
Health Professionals are often the first to see people with Complex Chronic Illnesses. CCI 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. Complex Chronic Illness Support would like to work together with Health Professionals to provide support and education to our clients.
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.
We are a symptom based service, so whilst we specialise in the illnesses listed below. We can help many people who have illnesses with similar symptoms of fatigue and pain. We can support them and their loved ones, and educate, empower and give them the tools to manage their symptoms.
If you have a client that you would like us to assess if they fit within our scope of practice, please either get in touch or refer with the form below. A Field Officer will endeavour to get in touch with your client within 10 working days.
If a client fits within our scope of practice, we ask for a nominal membership fee that will cover their care for 1 April till 31 March. For this they will have access to:
* Qualified Support Field Officers support and advocacy.
* Bi-monthly newsletter – MEssenger (which is either emailed or posted to members)
* Group support meetings / coffee mornings (both educational and social in nature)
* On-site library – books & other resources are available for you to borrow
* Membership to our Closed Facebook community.
* Free Counselling services in the Western Bay of Plenty.
* Access to our Towards Wellness and other Programme/s
Illnesses We Support
Chronic Fatigue Syndrome (CFS/ME)
ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome, has been described as an abnormal immune system response to any number of infectious or environmental triggers, causing a long term illness that can result in significant disability.
Main symptoms include:
- Persistent and overwhelming fatigue
- Post-exertional malaise (PEM)
- Muscle and/or joint pains
- Cognitive dysfunction – impaired memory & concentration
- Sleep disturbance
- Digestive problems
- Sensitivities to light and sound
- Sore throat and/or enlarged lymph nodes
- Dysregulated temperature control – fever/chills
- POTS / Orthostatic intolerance – erratic heart rate, feeling faint or dizzy upon standing
- Anxiety and/or irritability
Post Viral Fatigue/Syndrome (PVF/S)
In most straight-forward viral illnesses, recovery takes 2-4 weeks, with symptoms disappearing by six weeks. However, a small percentage of PVF’s patients will take several months to recover.
If symptoms remain after 3-6 months, with the illness unchanged, a change of name/diagnosis to CFS/ME is appropriate.
This condition comes about after a person has experienced a viral illness like:
- Common cold
- Epstein-Barr Virus
- Herpes Virus
- Other virial illnesses like Corona Virus, SARS etc
Most people will recover from a viral illness after a week or two, but if after many weeks or months you still feel unwell with these symptoms you maybe experiencing PVS:
- Confusion and trouble concentrating
- Body aches and pain in the muscles
- Stiff Joints
- Sore Throat
- Swollen Lymph Nodes
- People who have compromised/weakened immunity or have pre-existing conditions maybe more prone to PVS.
There are no clear-cut answer as to what PVS is yet. It is possible it is caused by a delayed response from the immune system to the virus, inflammation in the brain, or an overload on the immune system from the virus. At present there is no clear treatment from GP’s for PVS.
It is important to act quickly if you think you may have PVS. Getting a diagnosis is important but responding to the symptoms is more important.
If left, PVS can develop into Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome (ME/CFS), this is a long-term chronic illness with poor quality of life outcomes and few treatment options.
At Complex Chronic Illness Support we can provide you with the right information on how to manage your symptoms and how to live in a way that supports your body to heal itself. There are no quick fixes but CCIS are experts in symptom management information and providing the right support for conditions like PVS. We also support people with ME/CFS, Fibromyalgia, Postural Orthostatic Tachycardia, and Orthostatic Intolerance.
Fibromyalgia is a chronic condition that causes fatigue, widespread pain, and tenderness throughout the body and often co-exists with CFS/ME and/or many of the symptoms of this condtion. People with Fibromyalgia generally experience pain in specific points around the body and these points are used as a gauge for diagnosis.
The points around the body are:
- Back of the head
- Area between the shoulders
- Front of the neck
- Top of the chest
- Outside of the elbows
- Top and sides of the hips
- Insides of the knees.
Dysautonomia is a term for a group of diseases. 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.
Orthostatic Intolerance (OI)
Orthostatic Intolerance (OI) is an umbrella term for the development of symptoms when in an upright posture. OI can be caused by standing in an upright position for long periods of time, after being in a warm environment, immediately after exercise, after an emotionally stressful event, after eating (blood flow moved to digest food) or if salt and fluid intake is inadequate. These symptoms subside when returning to a horizontal position. Symptoms of OI include:
- Light headedness
- Altered vision
- Heart palpations
- Exercise Intolerance
- Neurocognitive deficits
- Abdominal discomfort
- Syncope (fainting)
Postural Orthostatic Tachycardia Syndrome (POTS)
Main symptoms include:
- Lightheadedness and fainting
- Heart palpitations
- Exercise intolerance
- Diminished concentration
- Tremulousness (shaking)
- Coldness or pain in the extremities
- Chest pain and shortness of breath.
Primers and Diagnostic Tools
This primer was developed by consensus among members of the primer committee for use by clinical practitioners. The primer provides information essential to understanding, diagnosing and managing the symptoms of Myalgic Encephalomyelitis (ME) otherwise known as Chronic Fatigue Syndrome (CFS)
ME/CFS Pediatric Primer
This primer was written by the International Writing Group for Pediatric ME/CFS. The primer provides information essential to understanding, diagnosing and managing the symptoms of Myalgic Encephalomyelitis (ME) otherwise known as Chronic Fatigue Syndrome (CFS) in children and adolescents.
General Information Brochure on Orthostatic Intolerance and its Treatment by Peter C. Rowe, MD, Chronic Fatigue Clinic at the Johns Hopkins Children Center
Current diagnostic criteria and management of Postural Orthostatic Tachycardia Syndrome.
Fedorowski, A. (2018). Postural orthostatic tachycardia syndrome: Clinical presentation, aetiology and management. Journal of International Medicine, 285(4), 352-366.
Every 2 months we send out a MEssenger Newsletter to all members, and on request to all Health Professionals. If you would like a copy of this Newsletter, please follow the link and sign up.
Up to date Research
As an agency, we like to keep up to date with the research going on around the world. Here are a few that we have found.
New Fibromyalgia research reviewed https://www.hindawi.com/journals/prm/ Roie Tzadok and Jacod N. Ablin of the Department of Internal Medicine H, Tel Aviv Sourasky Medical Centre and Sackler School of Medicine, Tel Aviv University, Tel Aviv, Israel published the...
An article Cherie (Field Officer Rotorua Lakes) recommends is a research on perspectives of people living with CFS on the use of technology as a self management technique of CFS. Very interesting reading. Patient Perspectives on Self-Management Technologies for...
Elizabeth recommends this excellent research article by Cort Johnson. The immune system in chronic fatigue syndrome (ME/CFS) has been kind of like a mirage in the desert. Given the way the disease starts and its symptom presentation – so close to the “sickness...
If you’d like to learn more about any of our services, or get involved, we’d love to hear from you.