May 12 Awareness Day for Myalgic Encephalomyelitis

Still trying to stop the harm

Since I contracted ME in 1989 and May Awareness began in 1992, I have been aware of or participated in this since the beginning.

I subscribed to the CFIDS Assoc of America Chronicle starting in the early 1990s.  I have not saved every copy, but I have the issue from Summer of 1995 that includes info about that year’s May 12 Awareness day for CFIDS/ME from around the world.  The following is a list of some of the events:

• Letter writing campaigns to members of Congress

• Meetings with the CDC, NIH, Social Security Administration, and Office of the Assistant Secretary for Health

• Television and radio interviews

• Proclamations in numerous states and foreign countries (If you are interested in doing a proclamation or resolution see info on the Proclamations and Resolutions for M.E. Myalgic Encephalomyelitis public FB page HERE.)

• Businesses displaying blue ribbons

• Booths handing out information materials

• Exhibit at the Connecticut chapter of the American Academy of Pediatrics’ Committees on School and Adolescent Health

• Displays at public libraries

• Walk-a-thon to raise funds for research

• Sandra Crashley, President of M.E. Info & Support in Otago, NZ spent May 12 in bed in a storefront window

• Concert in San Diego to raise funds to help patients with financial issues

That chronicle also includes an editorial from Thomas Hennessy, Jr., President of RESCIND Inc in which he says:

“RESCIND stands for Repeal Existing Stereotypes of Chronic Immunological and Neurological diseases. … 

We must realize that the shabby treatment we often receive is nothing new.  Multiple sclerosis was called “hysterical paralysis” for more than 150 years.  Diabetes was considered a mental illness until the 1920s.  Asthma was not considered a physical illness until the mid-1940s…  

For our sake and for generations yet to come we must all work together to someday eradicate CFIDS/M.E. from the face of the earth…”

He died in 2013.  I wonder what he would think about where we are considering that patients are still being abused by medical “professionals”.

This orange tabby, nicknamed Spaz, is a frequent visitor after becoming good friends with my husband (the cat whisperer).

I think the following signs would indicate success:

1. US Health and Human Services recognizes ME as per the International Consensus Criteria (ICC) so it is taught to doctors, giving us accurate cohorts for research. (Sign the PwME4ICC Petition)

2. The ME/CFS and CFS labels are used accurately.

3. Marginalizing terms like “fatigue”, “malaise” and “preference” are no longer used. 

4. No one with myalgic encephalomyelitis will be threatened by psychiatrists or hospital staff. 

5. A doctor visit will not require weeks of prep to say "the right thing" to avoid being harmed.

6. Doctors won't push gradually increasing activity aka graded exercise therapy (GET).

7. Therapists will help patients cope with the biological challenges and will not think that cognitive behavior therapy will cure mitochondria dysfunction.

8. Disability judges will recognize that what can be done by pushing outside our safe energy production one day does not reflect what can be done every day.  

9. No one will recommend the Lightning program.

10. Doctors will screen to confirm myalgic encephalomyelitis and not just send patients home with an "ME/CFS" diagnosis to fend for themselves.

11. Family and friends will know the reality of ME and stop saying harmful things based on a psychologization narrative. 

12. CDC's information will reflect what we know about the neurological, immunological, energy production and cardiac abnormalities described in the ME IC Primer.

13. NIH will study and fund research into myalgic encephalomyelitis as a distinct disease.  

14. The contagion aspect of ME is well known and prevention will be a part of all conversations.

Nothing about this is easy

While I am sure the decades of awareness raising was not a waste of time, I find myself having mixed feelings when May comes around. 

I relate strongly to Linda Crowhurst’s poem posted by her husband Greg on May 12th. I am definitely not a saint.  I am angry about the injustices I see that are harming people with ME.  See Greg’s public post on FB HERE. (Reprinted here with Linda’s permission.)

INTERNATIONAL ME AWARENESS DAY MAY 12 2024

With thanks to the great Tom Hennessy, much missed, who was the founder of this day.

What level of sainthood would you need

To not be angry at the medical neglect,

The tirade of psychiatric nonsense that continues to spout forth,

And cover up the truth of a real, physical disease,

That leaves people clinging to the edge of life

In indescribable agony, with profound yet ignored,

Incredibly serious system dysfunction?

Linda Crowhurst

I highly recommend the books from Greg and Linda Crowhurst on the Stonebird website.

I feel very frustrated that ME advocates have used precious energy for decades to raise awareness and yet too many are still held in psych wards (including young people), patients continue to be killed by medical neglect, patients are threatened for noncompliance when they refuse to exercise, etc.  I also know of people with ME whose family members refuse to bring them food because they don’t believe ME prevents them from getting out of bed.  

Despite the decades of raising awareness there continues to be an ongoing institutional systemic bias that causes disbelief about the truly devastating reality of living with ME.

What is holding us back?

• Maybe those who have been hearing the pleas of patients for decades have become numb to the suffering?  

• Maybe there is still so much disbelief that it doesn’t matter what we say?  

• Maybe because the medical community has spent decades undermining what we have been telling them?  

• Maybe the government health agencies have watered down the criteria to the point of negating everything we say?

For whatever reason, the need to raise awareness outside of the “ME bubble” still exists.  In those early years we did not have internet / social media.  The online tools we have now make it much easier to advocate all year long.  I am grateful for all those who use their precious energy to publish accurate information and powerful art to help raise awareness.  

2024 advocacy

Here are some of this year’s materials that I found published online that I think may be useful. 

ME Advocates Ireland (MEAI) 

MEAI have posted many graphics on Facebook and Twitter that can be shared.  I appreciate that their materials often reflect the ME International Consensus Criteria’s description of ME.

MEAI is also circulating a petition to be sent to Ireland’s Dr Colm Henry, Chief Clinical Officer of the HSE.  The petition begins with:

“We are writing to you as patients, carers, family members and advocates on behalf of individuals living with Severe M.E., urging the establishment of a dedicated HSE protocol to address the unique needs of this at-risk patient population.”

Sign HERE.  Be sure to confirm your email address by responding to the email they send after signing.  Anyone in the world can sign. 

Valerie Elliot Smith

Valerie Elliot Smith reshared an article from 2021 entitled A short post on long Covid media exposure.  Valerie is a long time advocate who offers deep insight into the challenges of advocacy.  I highly recommend her articles for anyone who wants to be more effective at advocating for ME.  I concur with her statement:

“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times”  ~  Valerie Eliot Smith 2019

Hope 4 ME & Fibro Northern Ireland

Hope 4 ME & Fibro NI Announcements Page on Facebook shared information about their education program that includes using virtual reality headsets with a short film.  The short award winning film can be viewed HERE.  

I am grateful they included a recommendation to use the International Consensus Primer for ME in the video.  I support their suggestion of sharing their Discover ME film with healthcare professionals and political representatives in your network.

MEadvocacy.org

MEadvocacy.org published a blog entitled: May 12, 2024 International Awareness Day - Still Battling US Health Agencies.  It covers some of what has happened in the last year with US government health agencies.  Unfortunately, it shows that far too little has changed which explains the picture choice for the article. 

The article also includes recommendations for people to follow.  Note: I am a volunteer committee member at MEadvocacy.  From the article:  

While MEadvocacy is mostly in a holding pattern, we still follow what is happening in the US and wanted to share how the work of the MEadvocacy volunteers continues to be useful.

Ren

The musician Ren dropped a new song.  From the description:

“There's a really good chance we could chart with this one!  This would be the first time in history a song about M.E and lyme disease would make the top 40 which would be huge for awareness.  Moments like this are pinch me moments and make me feel good about keeping the promise to my younger self.  That's because of all you guys so thank you so much!!”

If you are not able to listen, the lyrics are worth reading.  See HERE.

He does music in a variety of styles.  I recommend checking out some of his other titles including Hi Ren.

Mama Chill

Mama Chill put out a new track - The M​.​E Scandal (Explicit).  See HERE.  The lyrics include:

“The M.E Scandal

I’m about to tell a story, a true story

I was Living life, music in my bloodstream

Then I got flu & it vanished like steam

Who knew flu could evaporate a dream”

Anil

Anil, who describes himself as a former professional (ballet) dancer now a bed/sofa bound M.E. patient, produced a 12 minute video bringing us into his world of Severe ME. The video, Prison of M.E., can be found HERE.

The video starts out with the following:

“I've been ill with M.E. for about 17 years.

And for about eight years I've been living hidden away in a darkened home.

Some periods it has been mostly in almost complete darkness.

Where even the smallest sliver of light creeping through the door was too much to handle.”

This is an easy to watch video that shares some of the difficult aspects of living with Severe ME while showing the beauty that can be found when experiencing moments of escape from ME prison.

Looking forward

We now have decades of personal stories and a wide variety of awareness raising tools.  

I continue to believe that one of the most powerful tools we have to advocate is the International Consensus Criteria and the International Consensus Primer. See links HERE.

I hope we will have a worldwide paradigm shift in the way society understands the reality of Myalgic Encephalomyelitis before May 12, 2025.

Colleen

Information provided here or in comments is not to be considered medical advice