About CCI Support
Welcome to the Complex Chronic Illness Support website. Our vision is 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.
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.
For some people, coronavirus (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".
Whilst this is a new 'condition', we at CCIS were all too aware of it's possible implication from SARS-CoV-2. What we are seeing is that 'long-covid', is essentially Post Viral Syndrome with organ damage complications. To date, the information we are getting is that many that are dealing with long-covid, may in fact have had 'mild' cases of covid-19, however may be unwell and have extreme fatigue weeks to months later. We may not be able to medically help with the issues related to long-covid, we can certainly give tools to help manage some of your symptoms. We can give support and walk this journey with you.
Common long COVID symptoms include:
- extreme tiredness (fatigue)
- shortness of breath
- chest pain or tightness
- problems with memory and concentration ("brain fog")
- difficulty sleeping (insomnia)
- heart palpitations
- pins and needles
- joint pain
- depression and anxiety
- tinnitus, earaches
- feeling sick, diarrhoea, stomach aches, loss of appetite
- a high temperature, cough, headaches, sore throat, changes to sense of smell or taste
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.
- 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)
CCIS AGM 2021
Please RSVP so that we can arrange appropriate Venue, resources and catering.
As always with CCI Support, RSVP is the ‘intention’ of making it if you are well on the day.
If you’d like to learn more about any of our services, or get involved, we’d love to hear from you.