Health Professional Referral
To refer your client to Complex Chronic Illness Support, please complete the secure form:
Chronic fatigue syndrome (CFS) is a complicated disorder characterised by extreme fatigue that lasts for at least six months and that can’t be fully explained by an underlying medical condition. The fatigue worsens with physical or mental activity but doesn’t improve with rest. There’s no single test to confirm a diagnosis of chronic fatigue syndrome and there is no known cure. You may need a variety of medical tests to rule out other health problems that have similar symptoms. Treatment for chronic fatigue syndrome focuses on improving symptoms.
Health Professionals are often the first to see people with ME/CFS and related disorders. CCI Support recognises this and understands that within your own limited resources it is impossible for Health Professionals to address all the aspects of care required for these complex cases. We would like to work together with Health Professionals to provide the holistic support and education required to patients and their Whanau.
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.
We do have resource packs available for Health Professionals as well as extra brochures available for your clients.
Three primary symptoms ALWAYS occur with ME/CFS. These must be of at least moderate intensity and be present at least 50% of the time to diagnose a patient with ME/CFS:
The diagnosis of ME/CFS is based on the patient’s history, pattern of symptoms, and the exclusion of other fatiguing illnesses. Clinical Primer Diagnostic Criteria Worksheet
The terms chronic fatigue syndrome and myalgic encephalomyelitis (ME/CFS) describe a complex physical illness characterized by debilitating fatigue, post-exertional malaise, pain, cognitive problems, sleep dysfunction and an array of other immune, neurological and autonomic symptoms. The key feature of the syndrome, post-exertional malaise, is the exacerbation of symptoms following minimal physical or mental activity, which can persist for hours, days or even weeks. Rest and sleep produce only modest relief of fatigue and the other symptoms. The illness is also characterized by substantially reduced physical and/or cognitive functioning. Although ME/CFS is a physical illness, secondary psychological symptoms may be present as in many other chronic illnesses.
The management of ME/CFS is as complex as the condition itself. CCI Support works in a holistic way with patients and families with ME/CFS, Fibromyalgia and related conditions. We understand the limitations within primary practice and aim to work WITH Health Professionals to provide well-rounded care.
- Manage the Symptoms
- Treat Comorbidities
- Be aware of the contraindications
Statement – CCIS Position on Graded Exercise Therapy
Statement ‘Global move away from ineffective therapies for ME/CFS’, 21 August 2021
Emeritus Professor Warren Tate, Biochemistry, University of Otago
Statement ‘ME/CFS and Exercise’, 2 September 2021
Dr. Lynette Hodges, Senior Lecturer in Sport and Exercise, Massey University
Cognitive behavioural therapy, CBT, is no longer recommended as a treatment for ME/CFS
- The patient may require:
- Disability Allowance to cover their costs
- They may benefit from being on Support Living Payments instead of a Job Seekers benefit
- A referral to NASC for home help
- Specialist referrals to sleep specialist, local pain clinic, rheumatologist for Fibromyalgia etc
- A pamphlet from CCIS, explaining how they can access our services
- CCI Support has the expertise to provide support and education around:
- Understanding the Condition
- Pacing – Balancing Activity & Rest
- Stress Management
- Understanding pain
- Nutrition / Gut Health
- Restorative Movement
- Building and maintaining a Support Network
- Counselling in some regions
- Low Level Advocacy re: employment options, WINZ and other government agencies
From Harm to Help
Promoting an evidence-based shift in our understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
In collaboration with M.E. Awareness NZ
NZ Doctor (8th April 2020) ‘How to Treat’ article on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
Pages 25-29 – 1 RNZCGP credit M.E. Awareness | How to Treat ME/CFS
ThinkGP – Module 1 (Australia, 2021) “Busting the myths and redefining myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS)”
Module 1. View our brief introduction to this RNZCGP-endorsed CME here. 1 RNZCGP credit
ThinkGP – Module 2 (Australia, 2021) “Ensuring a patient-centred approach to care for people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)”.
International Continuing Medical Education
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CPD, 10 clinical cases, StudyPRN (UK, May 2020)
Unrest CME (USA, Nov 2018)
International Continuing Medical Education
A good link for Physios is Physios for ME
CME/CNE session with Dr Ros Vallings - July 2021
This CME/CNE education session will assist attendees to further understand the condition and latest research; diagnosis efficacy and effective management, along with complex chronic illness support services, and how to refer.
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.
Long COVID is a condition that “occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis". For some people, SARS-CoV-2 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 its possible implication from SARS-CoV-2. Long COVID resembles the very familiar to us (ME/CFS) Myalgic Encephalomyelitis. We are aware that Long COVID has a serious impact on people’s ability to go back to 'normal' life. It affects their mental health and may have significant economic consequences for them, their families and for the wider community.
Emeritus Professor Warren Tate says the main difference between the two is ME/CFS can be caused by several viruses, including Epstein Barr and Glandular Fever, and also by non-viral sources like trauma and agricultural chemicals, whereas what we call Long Covid is caused by just one pandemic virus, Sars-CoV-2. Long Covid also includes unique symptoms particular to the effects of Covid-19, including hypercoagulation, a condition that causes blood to clot more easily.
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
Treatment of Long COVID is similar to that of ME/CFS - managing symptoms, pacing, pain management, if PEM is experienced, you need to avoid exercise and activities that cause fatigue or symptoms and conserve your energy.
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)
How CCIS Supports Clients
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.
CCI Support has been following research from around the world for over 4 decades. This link will take you to what we feel is some of the most reputable sites for information of Chronic Fatigue Syndrome and related disorders.
As an agency, we like to keep up to date with the research going on around the world. Here are some articles of interest.
Research Update on Fibromyalgia (FM), 2021 The Third International Virtual Congress on Fibromyalgia was held in June 2021. Eleanor Stein MD FRCP(C) was there and captures the essence of this new research. She states that latest research discusses Neuroplasticity and...
NICE have published their new #MECFS guidelines! Extracts from the Science for ME press release... "The National Institute for Health and Care Excellence (NICE, UK) has today, Friday 29 October 2021, published the guideline for #MyalgicEncephalomyelitis (or...
The National Institute for Health and Care Excellence (NICE) has now published its ME/CFS guideline. ME Action gives us the lowdown:
37% of people had at least one long-COVID symptom diagnosed in the 3-6 month period after COVID-19 infection. The most common symptoms were breathing problems, abdominal symptoms, fatigue, pain and anxiety/depression. This new study from the University of Oxford and...
A great deal more is known today than 35 years ago about the underlying biology of ME/CFS. It is clear that many biological measurements clearly distinguish patients with ME/CFS from healthy control individuals. At the same time, some areas of ME/CFS research remain a...
Metabolic features of chronic fatigue syndrome (2016) by Naviauxa, R. J. et al. Chronic fatigue syndrome is a multisystem disease that causes longterm pain and disability. It is difficult to diagnose because of its protean symptoms and the lack of a diagnostic...
https://www.rnz.co.nz/programmes/the-detail/story/2018807667/long-covid-short-on-research From The Detail, 5:00 am on 12 August 2021 "Otago University’s Christchurch campus will look at 3,000 New Zealanders to see if they have been exposed to Covid and have developed...
Howick physician Rosamund Vallings speaks to Meghan Lawrence about her new book The Pocket Guide to Chronic Fatigue Syndrome/ME. Full article can be found here: Stuff: East Auckland physician's quest to demystify debilitating illness
The ME/CFS/FM Coronavirus Vaccine Side Effects Poll Update + the New Severely Ill Vaccine Side-Effects Poll Note the poll can be taken online and has been taken to find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health...
With governments worldwide under pressure to ease pandemic restrictions as vaccination rates rise and impatience with border restrictions grows, new threats become clearer....
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