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Supporting people impacted by Complex Chronic Illness.

Health Professional Referral Form

To refer your client to Complex Chronic Illness Support, please complete this secure form:

Health Professionals are often the first to see people with Complex Chronic Illnesses.  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.  Complex Chronic Illness Support would like to work together with Health Professionals to provide support and education to our clients.

We do have resource packs available for Health Professionals as well as extra brochures available for your clients.  These can be ordered here:

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

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 people 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
  • 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
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)

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.

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...

RNZ: Long Covid short on Research

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...

ME/CFS/FM Coronavirus Vaccine Side Effects Poll

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...

Long covid and vaccines

With governments worldwide under pressure to ease pandemic restrictions as vaccination rates rise and impatience with border restrictions grows, new threats become clearer....

YT: The Why, When and How of Pacing

This Video is useful for explaining pacing and understanding how to use pacing as a tool.  This is a long, but good video - so please pace yourself through watching it. It's not overstating the fact to state that PACING is the singular most important management...

Stillness

Information sourced by Neurochild Community (18/7/2020). Science is now showing that stillness may be just what we need to regenerate our exhausted brains and bodies. The demands of modern life put a significant burden on the prefrontal cortex of the brain, which is...

Covid-19

NZ Covid Vaccine Below is some general advice on the Covid-19 Vaccine which Dr Ros Vallings spoke about during her presentation at the public talk held in Hamilton last month for the launch of CCIS Waikato. The entire meeting will be available on Video soon. Experts...

ME Association: COVID VACCINES AND ME/CFS

ME Association - based in the UK.  May 2021 Update Having endured all the restrictions imposed by the COVID-19 pandemic for well over a year, we are now in a position where the country is slowly returning to some form of normal life. This is mainly due to the rapid...

Let’s talk

If you’d like to learn more about any of our services, or get involved, we’d love to hear from you.