Butterfly symbol for ME/CFS

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 like 15-20 years ago it was more commonly used, with some organisations using it in their logo, but has been less common in recent years.

Can anyone help with the meaning?

 

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).

Like these:
https://www.mecfsfmwollongong.org/
https://www.facebook.com/mecfsfm.qld/
https://peter200015.tripod.com/may12.html

These predate Emerge’s logo. Some have suggested that maybe it came from FM’s use of a butterfly, but that is used as a reference to allodynia. I’m struggling to find some reference to the meaning of it for ME/CFS.

 

Sloths, which have eminently stylisable little faces, would make much more sense.

 

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

 

I'm not a fan of the butterfly logo. It seems a little old-fashioned and a bit too 'cutesy' if that's the right word.

 

A web search produced the following links, mainly selling badges and key rings:

ME/CSF awareness button https://www.zazzle.co.uk/me_cfs_awareness_butterfly_button-145821841941928005

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Butterfly Mask https://www.redbubble.com/i/mask/My...ness-Butterfly-by-caitlinjcook/54196511.9G0D8

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Butterfly Pin https://www.redbubble.com/i/pin/Mya...ness-Butterfly-by-caitlinjcook/54196511.NP9QY

Wollongong ME/CFS/FM Awareness Group “The blue ribbon and butterfly are the symbols for ME/CFS, the purple ribbon and butterfly are the symbols for FM and the green ribbon and butterfly are the symbols for MCS.” see https://www.mecfsfmwollongong.org/

Donnee Spencer’s Medical Awareness Butterflies - “Over the last few years Donnee Spencer has produced these amazing awareness butterflies. As you can see so far she has covered psoriasis, multiple sclerosis, COPD, strokes, Crohns, cancer, autism, fibromyalgia, diabetes and cerebral palsy among others.” See https://patienttalk.org/donnee-spencers-medical-awareness-butterflies-which/ and for ME see https://patienttalk.org/myalgic-enc...donnee-spencer-brilliant-awareness-butterfly/

ME CFS Blue Awareness Large Butterfly Hope Spoon Bag Charm Keyring add Personalised Initial see https://www.desertcart.in/products/...on-bag-charm-keyring-add-personalised-initial

Chronic Butterfly - Fibromyalgia Awareness Facebook page see https://www.facebook.com/chronicbutterfly/

ME/CFS South Australia - “I owe my life to Butterfly: DAWN Poleon feels Blackpool-based charity The Butterfly Group saved her life. The mum-of-two, from Layton, has suffered from fybromylgia and chronic fatigue syndrome for around 15 years.” See https://sacfs.asn.au/news/2011/10

The Butterfly Group: “The Butterfly Group is a charity which cares for all those affected by immune, auto immune and chronic disorders. The charity’s head office is based in Blackpool and will be helping over 150 illnesses and over 100 symptoms and related disorders across the country. After extensive research The Butterfly Group is the only charity in the UK that supports and cares for these illnesses as a collective group of disorders under the umbrella of immune and auto immune disorders. The illnesses include Rheumatoid Arthritis, Sjögren’s Syndrome, Chronic Nephritis, Systemic Lupus Erythematosus (SLE), forms of Anaemia, Multiple Sclerosis (MS), Psoriasis, Crohns Disease, Primary Biliary Cirrhosis (PBC), Sjögren’s Disease, Fibromyalgia, ME, CFS, Coeliac Disease, HIV, DiGeorge Syndrome, Wiskott-Aldrich Syndrome, Anaphylaxis, Lymphopenia to name but a few.” see https://www.discoveradventure.com/charities/butterfly-group

It seems that the Butterfly symbol is not specific to ME/CFS but started life in relation to a number of chronic conditions, with different conditions being opted in with a different coloured butterfly. Presumably it started in Australia but I am not certain of that. Judging by some of the items on sale there is a link to members of the Spoonie community too.

If we are looking for a totem animal, can I tongue in cheek suggest the sea cucumber.

[corrected a couple of typos]

 

@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 definitely not used as much these days!

 

It is frustrating that I could not find an active link or web address for the Butterfly Group, so I don’t know if it was them that began the use of the Butterfly symbol or if they adopted it from somewhere else.

 

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 me because there are enough instances of a blue butterfly separately.

The only consistent theme that’s come up is the idea of patients being cocooned/cut off from the world by the illness and wanting to break free, though still not much documentation of the origins.

 

Doesn't the butterfly represent the thyroid gland? I think thyroid groups use this symbol.

 

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

 

The Butterfly Foundation that aims to give people with eating disorders wings was founded in Australia in 2002. See https://butterfly.org.au/

I don’t know when the butterfly was adopted for Fibro but here is another rationale for its use

 

I think the challenge might be to find a health condition not represent in some way or other by a butterfly. In a Bristol Hospital a purple butterfly is used to raise awareness of the terminally ill and among other things a purple butterfly sticker is put on the medical notes of those who are dying. See https://www.nbt.nhs.uk/sites/default/files/attachments/Purple Butterfly Volunteers_NBT003241.pdf

In American the monarch butterfly is used as symbol of the mentally ill:

 

We probably need a noise-cancelling-headphones-and-sleep-mask combo, don't we!

 

I don't know the connection between FM and butterflies. I hope it isn't just because most sufferers are female and cutesy logos are deemed suitable for women-related medical things.

Butterflies are used by many organisations that are thyroid-related because, as mentioned ad nauseam in writing about the thyroid, "the thyroid is a butterfly-shaped organ".

If that is true then the logo should have been a bird - a nightingale - rather than a butterfly.

 

I don’t know how seriously to take this but

Then there are people who say it is reflecting a hope for a cure to enable people with Fibro to emerge butterfly like from the cocoon of illness.

 

I don't think I'd like to meet people who think like that. I'd probably end up wanting to punch them in the nose because they were being airy-fairy while patients want to be taken seriously.

 

Butterfly was even considered for this forum's logo, see this thread:

https://www.s4me.info/threads/suggestion-create-a-logo.1691/

 

few years ago I tried and failed to find the origin and meaning of the butterfly. The conclusion I came to was that it was just a play on the coloured awareness ribbons we have today, one generic symbol to say 'awareness raising, please support this worthy cause', and then a different colour to identify the particular cause.

Maybe somebody thought that since there are many more causes than colours they should design a special shape for chronic illnesses to make them stand out more. And/or maybe it was just somebody who was into "deep meaning and symbolism" stuff (always risky, different cultures attach different meanings to symbols and colours). And/or that person/organisation thought butterflies would sell better than ribbons.

But that was me reading between the lines, I couldn't find any documentation.

Maybe some other illness communities have a record of how the butterfly came about but I wouldn't hold my breath. This is from an MS site

https://www.mymsteam.com/resources/ms-symbols-ribbons-butterflies-and-why-awareness-matters

Or the author of this book (haven't read) may have some information (though the book index doesn't mention butterfly)

Code:

https://www.amazon.com/Ribbon-Culture-Charity-Compassion-Awareness/dp/023024789X