Extra Resources
Reputable Resources
Sometimes it is hard to go online and decipher whether what you are seeing is legit and a good place to find relevant, up to date and ‘good’ research. Often we are bombarded with opinion-based ‘research’ – presented as fact.
CCI Support does have some places that we consider reputable research-based groups and thought sharing these with you would be beneficial. We have also given some handy hints about researching information to be able to evaluate if in fact it is reputable, valid and reliable.
01
Reliable Source?
Who wrote the article?
Who conducted the study?
What is their qualification?
What is their bias?
Are they a trustworthy source of information?
02
Why?
Every research has a reason. We need to determine the motive and bias that may be present in the research undertaken. Are they trying to generate income, lobby for change, sway a group of people to their belief system. Essentially we look for what has influenced the study.
Who funded the study?
03
Methodology
How was the data collected? Was it interviews, self-completed questionnaires or science based results. It could be a combination of all of the above. Who was selected and what was the sample size of participants. Was the response rate sufficient to really see if this is a good cross-section of the community analysed?
04
The data
Does the data back up the claims made?
Have they referenced other reputable sources of data?
Do they have secondary data?
Was it peer reviewed? Peer review is a system of evaluation by peers whom, ideally, have expertise in the subject area.
Is the data valid/accurate?
Extra Resources
Dr. Ros Vallings
These hand outs provide useful information in more detail about managing specific aspects of Chronic Fatigue Syndrome
Emeritus Professor Warren Tate
University of Otago researchers have proved in two studies that chronic fatigue is not psychosomatic, despite the widely held belief. The Panel on RNZ speak to Emeritus Professor Warren Tate, from the University of Otago’s Department of Biochemistry.
Bateman Horne Center
BHC provides informed educational resources and programming to improve understanding and assist with self-management.
On these pages, BHC delivers specific disease content, resources for managing your care, and an extensive video library.
Health Rising
Health Rising is dedicated to providing timely, accurate information to people with chronic fatigue syndrome (ME/CFS) and fibromyalgia.
CFS Self Help
Optimum Health Clinic
Optimum Health Clinic
Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid
Frontiers in Paediatrics
Invest in ME
http://www.investinme.org/index.shtml
Annual international Conferences and research Colloquiums. Bring together researchers, clinicians, patient groups and patients/carers in order to make progress in research into ME. These are CPD-Accredited events held in London.
#ME pedia
https://me-pedia.org/wiki/ME/CFS
Great guide to all things ME/CFS
The ME Association
ME Awareness
A New Zealand based group aiming to raise awareness about the condition in NZ.
Statements about ME/CFS
from New Zealand Academics
EMERITUS PROFESSOR WARREN TATE – UNIVERSITY OF OTAGO
DR LYNETTE HODGES – MASSEY UNIVERSITY
We can help!
If you are ever concerned with the information you are finding online. Please contact your facilitator, they can help you determine if what you are finding is legit, reputable and a good source of information.
Just click the link below and navigate to your ‘area’ to find your facilitator’s contact details.
Testimonial
Updates:
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...