Looking well but feeling extremely unwell?
Do you suffer from…
Muscle or joint pain?
Impaired memory & concentration?
Disturbed sleep patterns?
Our support service may be able to help
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.
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 would like some help, please complete the self referral form and a Field Officer will endeavour to get in touch with you within 10 working days.
We do ask for a nominal membership fee that will covers your support for 1 April till 31 March annually.
This will give you 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 known as Orthostatic Intolerance (OI), under OI are:
Postural Orthostatic Tachycardia Syndrome (POTS)
Neurally Mediated Hypertension (NMH)
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.
Main symptoms include:
- Light headedness
- Altered vision
- Heart palpitations
- Exercise Intolerance
- Neuro-cognitive deficits
- Abdominal discomfort
- Syncope (fainting)
Our Blog has some wonderful stories and encouraging words from other members. It’s well worth checking out.
VIDEO and Original article can be found here: https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12331040 By: Nathan Morton Video Journalist, Rotorua, NZH Local Focus email@example.com @NMortonOfficial While May has been significant for all sorts...
Article can be found here: https://www.sunlive.co.nz/news/242216-my-life-is-lockdown-tauranga-me-sufferer.html Completing daily tasks like getting out of bed, showering, cooking a meal is a “full-time job” for a Tauranga woman battling with chronic fatigue syndrome. ...
Pacing I love swimming. Being in the water is like sweet relief for my body. I feel weightless and wonderful. Getting out is hard. It’s like walking into a solid wall. The air itself feels like molasses, and my body is barely able to hold itself up. Because swimming...
Reframing – language and thought Positive Reframing can be thought of as the skill of seeing the upside of every situation. Yes, a skill. And just like any skill, it can be learned. When this was first suggested to me, I thought “Nah. Nope… No. Way. My illness drains...
https://www.youtube.com/watch?v=14oT6mi8PVU "My little boy he just... It was really hard." The heart-breaking experiences of mothers with ME. Made with funding from NZ On Air. Full story can be found here: NZ HERALD Holly Rinii lives in Kawerau with her partner and...
Original Article can be found here: https://thebeacon.co.nz/2019/05/asking-for-help-suzannes-story/
SunLive article and video can be found here: https://www.sunlive.co.nz/news/206191-when-horrible-monster-called-on-kaye.html “Yeah, yeah, we know that.” Bev Dickson has just been reminded of some desperately dark times in her daughter’s 30-year struggle with ME,...
“It’s great to be able to help people, especially my lifesavers, who helped me out of the darkest place I have ever been in.” Matt Appleton’s giving back – a 40-year-old living with ME, or chronic fatigue syndrome, who’s now a volunteer field officer working with...
SUNLIVE article can be found here: https://www.sunlive.co.nz/news/183324-burning-candle-at-both-ends.html Her body spoke louder than she did. Each arm movement felt like a heavy sack of potatoes and each step felt like walking with lead boots. It was a near paralytic...
SUNLIVE Article can be found here: https://www.sunlive.co.nz/news/99641-highlighting-an-invisible-illness.html She’s vivacious and irrepressible. You’re immediately drawn to her. Cassandra Grey’s also gorgeous – a looker with smarts – and if life hadn’t cut her such...
If you’d like to learn more about any of our services, or get involved, we’d love to hear from you.