Butterfly symbol for ME/CFS

[Shadrach Loom]

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

Alas, the Japanese navy got there just ahead of us.

 

[Simone]

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

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.

 

[Simone]

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.

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).

 

[Simone]

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

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

Interesting! I didn’t know that. Interesting that even in that discussion, it wasn’t being considered for an historical reason. I remember that child’s drawing of the butterfly tied to the stone too. So powerful.

 

[Simone]

few years ago I tried and failed to find the origin and meaning of the butterfly.

I started out on this quest sure this was going to be something so obvious that I had just failed to notice over the years. Glad I’m not the only one who has struggled to find the answer!

 

[Sly Saint]

how about this?

 

[Forbin]

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?

All I can think of is that, at that time, it might have had something to do with the butterfly logo that was (and apparently still is) used by The Whittemore Peterson Institute, which was founded in 2005.

In 2009, a study by WPI researchers was published in the journal Science which seemingly linked ME/CFS with a novel retrovirus called XMRV, but the results could not be replicated and the study was ultimately retracted by the journal Science itself.


In general, the butterfly is a well known symbol of transformation, rebirth, hope and new perspectives - symbolized by the caterpillar's metamorphosis into a butterfly. I thinks it shows up fairly often as a symbol in both medical research and practice.

 

[Simone]

All I can think of is that, at that time, it might have had something to do with the butterfly logo that was (and apparently still is) used by The Whittemore Peterson Institute, which was founded in 2005.

In 2009, a study by WPI researchers was published in the journal Science which seemingly linked ME/CFS with a novel retrovirus called XMRV, but the results could not be replicated and the study was ultimately retracted by the journal Science itself.


In general, the butterfly is a well known symbol of transformation, rebirth, hope and new perspectives - symbolized by the caterpillar's metamorphosis into a butterfly. I thinks it shows up fairly often as a symbol in both medical research and practice.

The use of the butterfly definitely predates the Whittemore Peterson Institute.

 

[Simone]

For anyone interested, someone sent me an article from an old Emerge journal. Emerge’s journal is also called Emerge (yes, confusing! The journal was named back when the org was called ME/CFS Victoria).

The 2013 journal included excerpts from a 1994 editorial from the journal that explains why the name Emerge was chosen for the journal/newsletter and why the butterfly was adopted by the journal (emphasis in the original).

Naturally they were looking for a name containing the letters ME denoting Myalgic Encephalomyelitis. In the early 1980s, this was the only name used to describe the syndrome we have all come to know. In those days little was known about the illness and it was recognised by only a handful of doctors throughout Australia. It was the beginning of a long and difficult journey. So it was appropriate that the name Emerge was chosen, since this word accurately reflected the way things were then - the illness was just beginning to emerge from obscurity and gain some recognition…

but the word emerge has a much more personal meaning for members of the Society - those who have endured the hardships of Chronic Fatigue Syndrome:

Like a butterfly emerging from its cocoon, we too hope one-day to emerge from the shadows of illness into the warmth and harmony of good health.

The editorial is from 1994, and the 1985 “flashback” on the same page is a poem called Butterflies. I haven’t been able to find any earlier reference to the butterfly in relation to ME/CFS. Is it possible this was the first use of it? If so, it would explain why it seems more common here in Australia.