07 281 1481 or 0800 224 787 or Text 022 658 0251 [email protected]

Supporting people impacted by Complex Chronic Illness.

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.  

Diagnosing ME/CFS

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.

Managing ME/CFS

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
  • 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
    • Sleep
    • 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

The Goodfellow unit presents

This MedCase describes a typical case of CFS/ME encountered in general practice with a focus on management ideas around caring for these complex patients.

RNZCGP accredited CME (Continuing Medical Education)

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.

NASA 10-Minute Lean Test

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
  • Headaches/migraines
  • 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
  • Influenza
  • Pneumonia
  • Epstein-Barr Virus
  • Herpes Virus
  • HIV
  • 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:

  • Fatigue
  • Headaches
  • 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

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
  • dizziness
  • 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
  • rashes

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 (FM)
 

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.

 

 

Orthostatic Intolerance
  • 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
  • Headache
  • Heart palpitations
  • Exercise Intolerance
  • Fatigue
  • Neuro-cognitive deficits
  • Anxiety
  • Nausea
  • Abdominal discomfort
  • Tremulousness
  • Sweating
  • Weakness
  • Syncope (fainting)

How CCIS Supports Clients

Primers and Diagnostic Tools

ME/CFS Primer

The latest ME/CFS Primer

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

The 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

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

POTS Diagnostics

A POTS Diagnostic Tool

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.

POTS Diagnostics

Pots on a Page and GP Guide

A handy 1 page guide to POTS for Health Professionals

Author: Prof Lesley Kavi, Published 19/04/2020  potsuk.org

EXTRA RESOURCES...

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.

EXTRA RESOURCES

Medical Research

As an agency, we like to keep up to date with the research going on around the world.  Here are some articles of interest.

Stuff: Here comes the long-Covid tsunami

Article Written By: Stuff science columnist Dr Siouxsie Wiles. Diagnosis of ME/CFS is challenging and generally requires people to have experienced symptoms for six months. With the pandemic in its third year, many people with long-Covid are now meeting the diagnostic...

ODT: Long Covid link

Otago research has established that Long Covid patients have an almost identical chemical composition to people with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). Those conditions had been dismissed and labelled a psychological ailment for many years...

RNZ: How to tackle the Long Covid threat, and how not to

Full Article written By Patrick Hadfield - ME Auckland Post-infectious illnesses are not new. In fact, I'm writing this because 12 May is ME/CFS Awareness Day - a day chosen as it marks Florence Nightingale's birthday. The famous nurse was thought to have developed...

Waiting to Exhale

"Waiting to Exhale”: Breathing and Chronic Fatigue Syndrome (ME/CFS) By Cort Johnson More than half of our patients with FMS or CFS develop a disordered pattern of breathing. They take very small rapid breaths using the small muscles of their chest instead of slow,...

1News: Advice being developed to help long COVID

We see it again, that Long COVID advice is still in the development stage in NZ. CCIS already supports people with Long COVID within our community. As well as those with ME/CFS relapse from COVID and ME/CFS symptomatology from the COVID Vaccine. But we are grateful...

The impact of COVID on people with ME/CFS

We have been very lucky in NZ that we haven't to date had the COVID spread like other countries.  To this end though, we are also locally unaware of the effects of COVID on people with ME/CFS and have to look overseas for related data.  The article linked below is in...

NICE Guidelines updated 2021

AN ME ASSOCIATION SUMMARY OF THE 2021 NICE CLINICAL GUIDELINE FOR ME/CFS The booklet features the main clinical recommendations from the guideline which we hope will be effectively implemented by healthcare providers as soon as possible. It has been written by Dr...

Research Update on Fibromyalgia (FM), 2021

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...

Let’s talk

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