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This post has been copied and following posts copied or moved from this thread: News from Australia I found this thought provoking - how do we get more understanding? The dilemma for medical professionals This programme highlighted for me the dilemma that medical professionals have. They need...

Dr Ros Vallings is scheduled to be interviewed by the Nine-to-Noon team at Radio NZ this Wednesday about her updated book 'Chronic Fatigue Syndrome - Symptoms Diagnosis Management'. To listen to the interview live, go to... https://www.rnz.co.nz/national/programmes/ninetonoon and click 'Listen...

I thought this article provided some content relevant to the topic of this thread. We need to throw out a mindblowing amount of science and start again Danyl McLauchlan reviews Stuart Ritchie’s book "Science Fictions: Exposing Fraud, Bias, Negligence and Hype in Science", which outlines the...

This Otago Daily Times article was from a few days ago... 14th Jan Post-viral illness thrust centre stage https://www.odt.co.nz/opinion/post-viral-illness-thrust-centre-stage

Some advice for ‘long Covid’ sufferers, from the chronic fatigue community Hannah Gibson | Guest writer Understanding the connection between chronic fatigue syndrome and ‘long Covid’ might be helpful in treating symptoms that doctors will find all too easy to dismiss...

I came across this virtual conference in March 18th - 19th March. CHF (Consumers Health Forum) Virtual Summit 2021: Shifting Gears Australia and New Zealand Consumer Experience and Leadership in Health Summit http://www.chfsummit.com.au/ehome/index.php?eventid=518286& The conference invites...

Just trying this out... "Living with ME/CFS is hard. The body's systems no longer function as they should. There is very little energy for daily activities, and the more you do, the sicker you get."??

This is the trap isn't it. Everyone brings their own perception of phrases and words. Some words can feel just right from one point of view, and then be completely wrong from someone elses.

Agree. How about "ME/CFS is a life changing illness. The body's systems no longer function as they should. There is no energy for daily activities, and the more you do, the sicker you get."

Someone shared with me that they talk about their energy production being faulty. "My energy factory is staffed by one dude, who hasn't been trained to run the facility properly. He does his best, but he messes up the energy orders. He doesn't send enough energy to places, nor to the right...

Audience is important to consider. I am wanting a phrase for members of the public, rather than health professionals. But maybe the same sentence/s could be used as an ice-breaker for health professionals too? What do you say when you want to describe ME/CFS?

I quite like some of the phrasing here. What about "ME/CFS is a debilitating, long-term illness that effects many parts of the body. It involves an abnormal physiological response to exercise, altered immune function, and impaired energy production."

A search across likely websites: CDC: https://www.cdc.gov/me-cfs/index.html Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may...

I am searching for a couple of sentences that describe what ME/CFS is, while giving some insight into how it affects the body and daily life. A couple of reasons for this search A powerful sentence (or two?) could be used by pwME and their supporters to more successfully educate those around...

Just wondering if two years on from the last discussion on this thread, do we feel it can now be said that ME/CFS involves altered immune function with the support of research?

I noticed that the NZ Doctor article was tagged as an 'Otago University press release', so maybe that is what got the mainstream press interested? And Otago Uni probably thought it was worth doing the press release because of the BHRC 2020 lecture? I might make a few enquiries to find out the...

I believe these are the two recent studies... https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02533-3 https://clinicalepigeneticsjournal.biomedcentral.com/articles/10.1186/s13148-020-00960-z

Perhaps we can get you /people to write press releases for future NZ research @Ravn ? And get the story improved.

Also article based on the Otago Uni press release published by NZ Doctor on https://healthcentral.nz/proof-chronic-fatigue-syndrome-not-psychsomatic/ who bill themselves as

Also on Apple podcasts. "Chronic fatigue is not psychosomatic - study." RNZ: The Panel https://podcasts.apple.com/podcast/id877823652?i=1000501906570