It’s May. Sigh…
May 12th is awareness day for Myalgic Encephalomyelitis (ME) and other Complex Immunological & Neurological Diseases. Many work to raise awareness all month.
I have very mixed feelings about May. Over the years there have been various campaigns to make “ME” visible. While I am grateful there is an awareness day, I am painfully aware that too often the “awareness” has perpetuated misinformation about ME. The information often does not explain this is a distinct disabling disease understood to be caused by a virus (likely an enterovirus).
May awareness campaigns highlight the painful reality that myalgic encephalomyelitis is still mostly invisible to the general public.
Often if those around me have heard of the disease, they have been misled to believe it is mainly about fatigue and exercise induced malaise. It is not “chronic fatigue syndrome” as defined by any of the definitions using that label. And malaise is woefully inadequate to describe post-exertional neuroimmune exhaustion that occurs after minimal activity (not just “exercise”). I wrote about ME/CFS HERE and CFS HERE.
Too often, it feels like we are only talking to others within the ME community. While the camaraderie of the shared experiences helps all of us know we aren’t alone, the most important part of any awareness raising is to reach people who are not aware of the reality of ME.
Hashtags
Social media has offered us many more ways to raise awareness than we had in the 1990s. Here are some of the hashtags you can use to find posts to share.
#MyalgicEncephalomyelitis
#MEawareness
#MEawarenessmonth
#May12awareness
#bringMEoutoftheshadows
#pwME
#SevereME
#VerySevereME
I hesitate to recommend the CFS or ME/CFS hashtags as those may refer back to information that promotes behavior modification (exercise/therapy/pacing) based on a psychological view of the disease. Please help spread accurate information about ME as a distinct biological disease.
Myalgic Encephalomyelitis = inflammation of the brain and spinal cord, with muscle pain.
Profile pics
Profile pics on social media is a good way to raise awareness. ME Advocates Ireland (MEAI) created some nice awareness pics for social media profiles.
From their Facebook post: (shared with permission)
“Awareness Month ‘Twibbons’ are designed to visually express your support and to raise awareness of a particular issue or campaign.
Our campaign theme this year is "Bring ME Out of the Shadows".
The slogans on our Twibbons this year are:
'Myalgic Encephalomyelitis - Shadow of My Former Self' or
'Myalgic Encephalomyelitis - Shadows of Our Former Selves'
'Severe Myalgic Encephalomyelitis - Shadow of My Former Self' or
'Severe Myalgic Encephalomyelitis - Shadows of Our Former Selves'
'Very Severe Myalgic Encephalomyelitis - Shadow of My Former Self' or
'Very Severe Myalgic Encephalomyelitis - Shadows of Our Former Selves'
Please use a 'Twibbon' image of your choice as your profile picture on your social media pages throughout ME Awareness Month. There is a large choice of images to choose from.
All you have to do is download an image of your choice to your device from our Twibbon post and then upload the image as your profile picture to support our ME awareness campaign during the month of May.”
Find graphics to download on their website HERE and their Facebook page HERE.
I will be using this one
FACTS about ME
Raising awareness and providing information about ME are two very different things. If people “learn” about ME with the wrong information, the awareness campaign impedes progress.
My purpose of writing this Substack, View from the Trenches of Myalgic Encephalomyelitis, is to try to provide factual information to enhance awareness. Topics I have covered can be found on the View from the Trenches of ME Table of Contents. This Substack is free - please share articles to help raise awareness.
I also run the Facebook group ME-ICC Info that works to pull together useful information. We have created a Table of Contents for ME as defined by the International Consensus Criteria (ME-ICC). Find that HERE.
I hope this year’s awareness will have a large impact that brings more awareness about the challenges people with ME face.
My article from last year, May 12 Awareness Day for Myalgic Encephalomyelitis: Still trying to stop the harm, includes a list of results that would indicate a successful awareness campaign.
Aiming for a better future…
Colleen
Information provided here or in comments is not to be considered medical advice.
I sent a simple meme showing a well person after ADL and an ME person after ADL to my whole family and several friends. I got two replies. It's one thing when a doctor just doesn't get it, but to be invisible to family and friends is shattering. What do we have to do??
Thank-you Colleen, for all of this.
I agree that May Awareness is a frustrating time for those of us who've seen so much misinformation over the decades.
It is so widespread, and coming not just from the psych cabal and the CDC/NIH in U.S. and NHS in U.K., but from most of our so-called patient organizations. These orgs may have started with good intentions, but they keep switching course (for very questionable reasons) and supporting gov't CFS and ME/CFS "definitions".
Their duty should be to fight for accuracy (not the grouping of multiple illnesses under a big umbrella), proper testing for differential diagnosis. and treatment.
Supporting and sharing the good info in the ME-ICC is like swimming upstream.
I keep sharing and recommending your writings and Hillary Johnson's, and the work of luminaries like Dr. Byron Hyde, Dr. Maureen Hanson, and others. It's all I've been able to do in recent years (due to M.E.) and I fear that it will never be enough to turn the tide.
Please keep doing what you do. It is needed and appreciated ore than I can express.