RESOURCES FOR people with me (PWME)

ME is far more than just being tired.png

Introduction to ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome):

  • Six minute video from the Bateman Horne Center, a ME/CFS specialist centre in Utah, USA which provides a basic introduction into the IOM 2015 diagnostic criteria for ME/CFS. It is intended as education for medical providers but is also a good introduction for patients and the public.

  • Emerge Australia covers key ME/CFS topics on their website, such as What is ME/CFS, Diagnosis, Facts, and Associated Conditions.

Post Exertional Malaise - PEM guides:

Ineffective behavioural therapies for ME/CFS

Until recently Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) were proposed as the best treatments for Myalgic Encephalomyelitis /Chronic Fatigue Syndrome. However, this has changed due to the now widely accepted finding that exertion aggravates the debilitating symptoms of ME/CFS - what we now know as Post Exertional Malaise.

If GET is being recommended to you, we suggest that you share the following:

  • Statements from senior ME/CFS researchers in New Zealand:

  • The latest ME/CFS guidelines from the National Institute of Clinical Excellence (NICE, UK), which state that a fixed exercise programme should not be offered to people with ME. (Item 1.11.14 within Managing ME/CFS section.)

Support for living with ME

  • Please see our map of support groups for people with ME/CFS on our NZ Support page. This includes regional organisations and individuals in smaller areas.

  • Your GP has access to updated clinical guidance about ME/CFS on the Health Pathways platform provided by their District Health Board. Ask them to read the guidance.

  • The Associated New Zealand ME Society (ANZMES) is the national support organisation for ME/CFS in New Zealand.

Alternative Therapies

Covid-19 Vaccines and pwME

Although doctors experienced with ME/CFS recommend that People with ME have the vaccination, they are unable to state how it will affect each person. Most suggest it is safer to have the vaccine than to fall ill with Covid-19. However, pwME can be sensitive to medications and it is up to you (hopefully with your doctor’s support) to consider the risk of further severity of ME/CFS symptoms.

As per ‘To Vaccinate or Not - with ME/CFS’ by Nancy Klimas, MD, Director, Institute for Neuro-Immune Medicine, the consensus protocol for PwME seems to be:

  • Plan rest days before and after the vaccination.

  • Take antioxidants beforehand.

  • Take antihistamine 1 hour before & for several days after the vaccine – particularly if you tend to have allergic reactions.

Statement from ANZMES:

Further information:

  • Information about CFS/ME and Covid-19 from Dr Ros Vallings, Howick Medical & Health Centre

  • ME Action has pulled together recommendations from various sources about safety of the vaccines for pwME.

    "ME/CFS experts from the Centre for Complex Diseases, the Institute for Neuroimmune Medicine, the Bateman Horne Centre and, in the UK, the ME Association have weighed in with their recommendations on this matter. Overall, clinicians are recommending that people with ME get a COVID-19 vaccine, but take precautions to offset adverse effects. The Bateman Horne Center recommends that people with ME/CFS wait a few months until the vaccines are broadly administered."

  • Cort Johnson on the Health Rising blog shares vaccination advice from ME/CFS experts and the results of pwME vaccination surveys.

  • An international Facebook Group, ME/CFS and the COVID VACCINES, exists as “a forum for people with ME/CFS to share information about the Vaccines that is relevant to pwME, and to share individual first hand reactions of pwME to the vaccine.”

NZ News about ME/CFS and vaccination:

Resources for when admitted to hospital/surgery

  • Health Passport - NZ initiative by the HDC, to download a copy and read more, go here

    "My Health Passport” is a booklet that you can carry with you when you visit health and disability services. The booklet has information about how you want people to communicate with you and support you when you use health or disability services.

  • For a hospital checklist (NB this has been created by #MEAction for US patients but still helpful) see here

  • For a health information printout (also by #MEAction for US patients) see here

  • See page 42, Appendix E for surgery guidelines in the Primer for Clinical Practitioners (International Association CFS/ME, 2014)

Other References