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.
Institute of Medicine (IoM) criteria
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 International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) ME/CFS Primer for Clinical Practitioners
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
- We are happy to send you a resource pack with the latest information re: management of these conditions. ORDER HERE
- M.E. Awareness and Dr. Cathy Stephenson have collaborated in a GP presentation, it is well worth the time to watch this. WATCH HERE
- Treat Comorbidities
- Be aware of the contraindications
Graded exercise therapy (GET) is no longer recommended for ME/CFS.
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
The NICE Guidelines cover diagnosing and managing myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) in children, young people and adults.
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
Presentation by Dr. Cathy Stephenson, RNZCGP General Practice Conference, 7th August 2021
In collaboration with M.E. Awareness NZ
M.E. Awareness has a comprehensive list of CME sessions available, including:
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
NASA 10 minute Lean Test
The Bateman Horne Center recommends that all ME/CFS and Fibromyalgia patients have a NASA 10-minute Lean Test to assess for orthostatic intolerance.
Recently we created a PowerPoint presentation to explain CCI Support Services to Health Professionals.
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
Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome
Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome (CFS) - an abnormal immune system response to any number of infectious or environmental triggers, causing a long-term illness that can result in significant disability.
The main symptoms include
- persistent and overwhelming fatigue
- post-exertional malaise
- muscle and/or joint pains
- cognitive dysfunction
- sleep disturbance
- digestive problems
It is estimated that there are between 16 000 to 20 000 people with ME/CFS effecting people of all ages, ethnicity, and socio-economic groups, although there is higher prevalence among women than men. ME/CFS is challenging to diagnosis in which other conditions need to be ruled out and a specific set of diagnostic criteria met. There are currently no specific medical treatments for ME/CFS.
Symptom severity ranges from ‘mild’ (just able to manage work but at the expense of other areas of life), to ‘very severe’ (bed-bound, tube-fed, paralysed, without speech). Even symptoms which are classed as mild can involve the loss of at least 50% of normal function.
A chronic condition causing fatigue, widespread pain, and tenderness throughout the body and often co-exists with ME/CFS and/or many of the symptoms of this condition. People with Fibromyalgia generally experience pain in specific points around the body and these points are used as a gauge for diagnosis.
Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.
For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities. Fibromyalgia affects two to four % of the population, mainly women, although men and adolescents can also develop the condition.
- Chronic Widespread Pain
- Moderate to extreme incapacitating fatigue
- Sleep Disturbances
- Cognitive Difficulties
- Sensitivity to touch/light/sound
- Anxiety and/or depression
- Impaired coordination / balance
- Gastrointestinal problems
- Chemical senstivities
- Orthostatic intolerance
Post-Viral Fatigue / Syndrome
In most straight-forward viral illnesses, recovery takes 2-4 weeks, with symptoms disappearing by six weeks. However, in a small percentage of patients the duration until recovery can take up to several months. If symptoms remain after 3-6 months with the illness unchanged, a change of name/diagnosis to CFS/ME is appropriate.
A term for a group of diseases that include postural orthostatic tachycardia syndrome (POTS) and (OI) Orthostatic Intolerance. 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.
Long COVID is a term used to describe the symptoms that continue or develop after your initial COVID-19 illness and cannot be explained by any other condition. Long COVID is usually diagnosed when symptoms continue more than 3 months after the initial diagnosis.
For some people, corona virus disease 2019 (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”.
The latest research from Professor Tate states that people who develop Long covid develop a chronic inflammatory immune response in the body system. This has strong neurological symptoms like brain fog and sleep dysfunctions. Inflammation in the brain is called neuro inflammation. The brain is misfunctioning and communicating back to the body that it is in danger and the inflammatory response just keeps going, resulting in a vicious cycle and on-going disease.
General symptoms include:
- abdominal pain
- joint pain
- muscle pain
- nausea and vomiting
- weight loss
- reduced appetite
- sleep issues.
Neurological symptoms include:
- loss of concentration or memory issues (cognitive impairment, 'brain fog')
- sleep disturbance
- pins and needles and numbness
- delirium (in older people)
- lack of strength in arms or legs (mobility impairment)
- visual disturbance.
Ear, nose, and throat, Cardiovascular and Respiratory symptoms.
Treatment for Long COVID is similar to that of ME/CFS. It is about managing symptoms and pain.
The key to symptom management is pacing.
If PEM (post-exertional malaise) is experienced, you must avoid exercise and activities that cause fatigue or increased symptoms, and conserve your energy.
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)
Fibromyalgia Diagnostic Criteria
AAPT Diagnostic Criteria for Fibromyalgia
The International Fibromyalgia working group diagnostic criteria adopted by ACTTION-APS Pain Taxonomy (AAPT)
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.
Orthostatic Intolerance & it’s treatment
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.
A handy 1 page guide to POTS for Health Professionals
Author: Prof Lesley Kavi, Published 19/04/2020 potsuk.org
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.
Goodfellow Unit: the impact of Myalgic Encephalomyelitis/CFS on young people.
https://www.goodfellowunit.org/podcast/myalgic-encephalomyelitiscfs?fbclid=IwAR3hrnNBSwuN1WYHHWJgCMsIt8sTRfaadF_-dOtXSvihG8Q_A29VwSELVHY In this episode Dr Cathy Stephenson and Rose Silvester discuss the impact of Myalgic Encephalomyelitis/CFS on young people. Take...
Griffith University: Brain similarities for long COVID, chronic fatigue syndrome
https://news.griffith.edu.au/2023/03/14/worlds-strongest-mri-investigates-covid-and-myalgic-encephalomyelitis-chronic-fatigue-impacts-on-the-brain/ Dr Sonya Marshall-Gradisnik, Director of Griffith’s National Centre for Neuroimmunology and Emerging Diseases and also...
Brainstem volume changes in ME/CFS and long COVID patients
Key findings ME/CFS and long COVID patients had larger than normal volumes of several areas of the brainstem These volume changes correlated with clinical measures of pain and breathing difficulty...
Systematic Review of Mind-Body Interventions to Treat ME / CFS
Written by S K Arestani, M Karkhaneh, E Stein, S Punja, D R Junqueira, T Kuzmyn, M Pearson, L Smith, K Olsen & S Vohra, 2021 The mind body connection is essential to grasp, if most people are to make significant progress towards wellness. There is no known cure...
A Burning Question: Can Niacin Help Mitochondrial & Blood Vessel Issues in ME/CFS, FM and long COVID?
By Cort Johnson, Health Rising, April 2022. Some people intermittently experienced significant periods of mental clarity and energy improvement while using niacin, which may or not be associated with the flushing that some forms of niacin produce. Niacin (Vit B3) in...
RNZ: 300,000 cases of long COVID – Study
Full article: https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018875322/300-000-cases-of-long-covid-study New research conducted for the Ministry of Health estimates around 300 thousand New Zealanders may have Long Covid, and reccomends the establishment...
Increase Risk of POTS after COVID
Overall, the study findings showed that new-onset POTS diagnoses and POTS-related diagnoses occurred more frequently following COVID-19 vaccination as compared to the pre-vaccination period.
Nevertheless, the rate of new POTS diagnoses was more than five-fold greater post-COVID-19 as compared to that following vaccinations.
Risk of Debilitating Illness from Long-COVID Could Grow
An article published by Radio New Zealand on the 17th of January, has highlighted that the risk of Kiwi’s developing chronic and debilitating illnesses from long-COVID could grow as more people are becoming re-infected.
Long read: The rolling maul of Long Covid
As reported by Mark Daalder of Newsroom (Updated 26 December 2022), tens of thousands of New Zealanders have Long-COVID. Soon, they'll seek care from a crunched health system unequipped to help them and financial support from a Government which has closed its wallet....
An Update from Ron Davis and Janet Dafoe: The Neutrophil Study
Please watch this video from Ron Davis and Janet Dafoe - This could just be the next new exciting research to watch unfold!
If you’d like to learn more about any of our services, or get involved, we’d love to hear from you.