About CCI Support
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.
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
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.
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.
Dysautonomia is a term for a group of diseases that include postural orthostatic tachycardia syndrome (POTS). 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.
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.
Imagine being stuck in your home 24/7
Not able to go anyplace but the supermarket, pharmacy, or doctors. BUT what if lockdown was your normal? What if you lived with a chronic illness that made every day a lockdown day? That’s right. Lockdown level 4 all the time. Not because Jacinda says so, but because your body says so. People with ME/CFS & FM often live in 24/7 lockdown when they first get sick. A lot get sick because of a virus, so there may be many new people with ME/CFS after Covid-19.
What can we do? How can we help these people in 24/7 lockdown long after we have returned to level 1? We can support Complex Chronic Illness Support, a charity which is trying to help provide resources for our members who are doing it really tough. The funds will be used for CCIS members health care needs which are not covered by the government. Medical and Specialist costs, unsubsidised fees and treatment that will help them and their families. It will go directly to those most in need.
A Special Thank You to the Legacy Of Nicola Evans
Nicola battled bravely with ME throughout the later years of her life and was cruelly taken by cancer at only 53 years of age. Cards of her paintings are available for sale, with all proceeds going to Complex Chronic Illness Support. This is Nicola’s legacy to us all. You can contact us directly to order these.
If you’d like to learn more about any of our services, or get involved, we’d love to hear from you.