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No, it’s a reference to allodynia (that the skin is so sensitive to touch that something even very light, like a butterfly landing on your arm, can cause pain).

Yep, the FM butterfly is a reference to allodynia, which is very specific and clearly relevant. Apart from the cocoon/butterfly metaphor, I can’t find anything similarly specific for ME/CFS.

Yes, they do. It’s also used by Lupus (purple), Adrenal Insufficiency (blue) and other illnesses.

I’ve posted about this elsewhere and had some suggest that perhaps the butterfly was a connection to Florence Nightingale, though I’ve not been able to find one. Others wondered if, because many ME/CFS orgs also represent FM, the orgs just adopted the FM symbol, but that doesn’t really fit for...

@Peter Trewhitt Thanks, yeah those are the ones I found too. It definitely has a history here in Australia, but I can’t find how it came about. I wonder if it was that many of our orgs also support FM and just adopted that symbol? It’s disappointing that the history and meaning isn’t clear. It’s...

They’re adorable, but so close to the idea of slothfulness and laziness.

I’m not a fan of the butterfly as a symbol either. It’s less utilised in an awareness-raising context, which is good. I’ve heard the cocoon/butterfly idea too, but can’t find anything documented. We’ve had a couple of orgs/groups here in Oz who used the butterfly (though not so much recently)...

Hello brains trust! I’m looking for something documented that explains why sometimes a butterfly has been used as a symbol for ME/CFS. I know it’s used for FM (and I understand its meaning for FM), but my brain has hit the wall and I can’t find anything on why butterfly = ME/CFS. It seems...

Devastating for ME/CFS patients who donated to this trial.

The authors don’t mention that, out of the 279 Long COVID patients in their sample, only 46 have been sick longer than 6 months. These studies need to only include patients sick longer than 6 months for them to be of any use.

Thank you! Emerge Australia provided the content for this page (and then crossed our fingers that the site managers would accept our changes). It’s not been updated for a few years, but we did a major update recently and are hoping to review it annually (or at least every 1-2 years).

I’ve not read the paper but it’s disconcerting (though unsurprising, considering it’s Crawley) to see ACT misused like this.

For anyone who missed the research panel, the video is now available. A written summary will also be published. https://www.emerge.org.au/mecfs-research-panel

Thanks, @Trish! If we have the resources, we will definitely produce a summary (always too much to do, and not enough people/time etc). For anyone who missed the session, the recording will be available soon. I’ll post a link when it’s up!

Emerge Australia’s May awareness week webinar series: The Basics of ME/CFS Join Emerge Australia's Nurse Educator Kate Herbert as we dive into the basics of ME/CFS, including outdated and current understanding of ME/CFS, the importance of post-exertional malaise (PEM) in diagnosis, and...

ABC News article on NCNED research into ME/CFS and its application to Long COVID. https://www.abc.net.au/news/2022-03-18/long-covid-and-chronic-fatigue-links/100916990

Recent radio segment on ABC Life Matters, featuring ME/CFS patient Sara Gingold, Emerge Australia CEO Anne Wilson, and Associate Professor of Rehabilitation and Human Performance, Mount Sinai Health System, Dr David Putrino. The segment runs for about 20 mins...

Thats my concern as well. NCNED claim that TRPM3 dysfunction is the cause of ME/CFS, and that naltrexone repairs it, but we know that anecdotally LDN is very hit and miss. It helps some, doesn’t help others, makes yet others worse. I’ve not heard anyone report that naltrexone was curative for...

This should say Vicky Whittemore! :banghead::wtf: