
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
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:
Book Review: Who Deserves Your Love: How to Create Boundaries to Start, Strengthen or End Any Relationship by KC Davis.
Some of you might recognise the name of this author – she is also the author of the last book I reviewed, How To Keep House While Drowning. Being a big fan of her last book, it seemed worthwhile to check this one out as well, despite being on quite different topics....
Through the Grapevine – October 2025
As some of you may remember from previous blogs etc. Rachel Riggs’ cookbook is shaping up to be an uncomplicated, allergen-aware cookbook. After a recent catch up, Rachel who has been living with ME/CFS for 21 years -- the last twelve of them housebound -- really...
Update on the DecodeME Study
The DecodeME team has just released the first results from the world’s largest ever genetic study of ME/CFS. Over 15,500 people with ME/CFS and more than 259,000 people without it took part. This makes it the biggest and most detailed look so far at whether our DNA...