Clinical ME/CFS Resources
Clinical Resources for Health Professionals and People with ME
Key website: m.e.awareness.nz
Note on diagnostic criteria: Despite the IOM Criteria for ME/CFS-SEID, ME/CFS (2015) being the latest, it is worth noting the main biomedical findings with recent research are coming from the International Consensus Criteria (2011) for ME and the Canadian Consensus Criteria (2003) for ME/CFS.
1. The US Centre for Disease Control (CDC) Information for Healthcare Providers’ page has links to most of the basic information that practitioners may need to understand assessment, diagnosis and management of ME/CFS. These documents may also be useful for people with ME, both to educate yourselves, and/or to take along to your doctor/practitioner to help them to understand the condition.
Each of the referenced reports offer something slightly different and very useful. The ME/CFS Clinicians Guide (IOM Report) has some very sobering statistics if you are wanting to make an impact – not for the faint hearted.
2. Likewise have a look at the Open Medicine Foundation web page. It provides numerous links to great information for pwME, doctors, educators and so on. The authors all reference recent and good quality evidence.
3. The British Medical Journal (BMJ) has also compiled a great summary that is kept up to date.
4. #ME Action has produced a fantastic quick reference guide for doctors. We suggest this as a starting point for clinicians, if the full reports references above are a bit overwhelming. We also recommend the youtube video by Dr David Kaufman talking about diagnosis and management of ME and CFS. Also included under 'Video Media we Recommend'.
5. Primers (guide to diagnosis and management)
Young people: please note this excellent primer for diagnosis and management in young people (2017), with contribution by Dr Ros Vallings (Auckland).
Another great primer “Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Primer for Clinical Practitioners” by IACFS/ME (2014), also with contribution by Dr Ros Vallings (Auckland).
Adults & young people. An excellent international consensus primer (2012) - with contribution by Dr Ros Vallings (Auckland) Myalgic Encephalomyelitis - Adult and Paediatric: International Consensus Primer (ICP) for Medical Practitioners (2012).
6. A simple GP oriented summary “Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: What Every Family Physician Needs to Know” taken from a Family physicians journal "Family Doctor" in New York (2018). Also particularly good as it discusses the debunking of the PACE trial and thus how Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are harmful and no longer considered treatment options for people with ME and CFS.
7. Key Recent Articles
You and ME. An update on Myalgic Encephalomyelitis. by Rose Silvester, a clinical psychologist based in Wellington, NZ. This article was first published in the June 2018 edition of the Journal of the New Zealand College of Clinical Psychologists (NZCCP)
Article by Dr Nina Muirhead (Dermatologist/Surgeon with ME from UK) published by Royal College of Physicians UK: Do you really believe in ME? April 2019, she shares her experiences and brings attention to the issues faced by those with ME/CFS.
Article by Dr Olson in Berkeley Wellness, Re-educating Doctors About ME/CFS. Also discusses issues/harms of GET and CBT.
Article by Miriam Tucker New Findings Elucidate Potentially Treatable aspects of ME/CFS - Medscape - Apr 10, 2019, published on ME Association. Highlights recent biomedical findings.
Article byS. Eyssens on PEM and GET in ME/CFS, 2017, explains the harm caused by Graded Exercise Therapy for people with ME.
8. ME/CFS Research Summary 2018 - Summary of ME/CFS research findings for 2018 by the #ME Action Network.
9. ME/CFS Research Summary 2019 - An abbreviated summary of ME/CFS research findings from the last 10 years by the #ME Action Network.