Don't Forget M.E.
I’ve been chipping away at drawing this comic for a while now. A bit of dark humour to help spread awareness for ME/CFS (Myalgic Encephalomyelitis, also known, and poorly titled, as Chronic Fatigue Syndrome).
* Trigger Warning *
The following content could potentially be emotionally challenging for some readers.
Mortality statistics in patients with ME/CFS, including self harm are mentioned.
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Mortality statistics in patients with ME/CFS, including self harm are mentioned.
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Sadly, my illustration was inspired by a true story (I changed the woman’s name out of respect for her family’s privacy). She had gone to bed early, and her husband found her hours later unconscious. She was taken to hospital, where she was pronounced dead. An inquest found nothing major was wrong with her. The coroner said she died of natural causes.
There’s nothing natural about dying at age 39! This women had previously been diagnosed with Chronic Fatigue Syndrome and had been given antidepressants as the only treatment option.
ME/CFS needs to be treated like the serious, complex, multi-system, neuroimmune illness that it is. Doctors say, we’re healthy and won’t die from it, unfortunately, they’re misinformed.
See the ‘Don’t forget M.E.’ tag hanging from the dead women’s toe in my comic above? Sadly again, inspired by another true story. The below paragraph were the last words in a letter,
Forget Me Not, written by Alison Hunter, in 1993 ~
“It’s not AIDS, although it’s similar, you can feel equally as ill only it doesn’t kill you. Not cancer either. I’m not dying or anything drastic like that. It’s M.E. Don’t forget M.E.”
Alison Hunter died in 1996, aged 19 ~ from complications arising from ME/CFS which included seizures, paralysis, gastrointestinal paresis and overwhelming infection.
Since Alison's death her family set up the Alison Hunter Memorial Fund to raise money for research. The AHMF website has now been closed, however you can still donate directly towards the cause via Griffith University's NCNED - Australian biomedical research for ME/CFS. Please make sure you select National Centre of Neuroimmunology & Emerging Diseases (AHMF donors) in the 'Please use my gift to support' dropdown menu from this secure website form. It's important you include the option with (AHMF donors) as that goes directly to ME/CFS biomedical research.
There have only been a small number of cases where people have had ME/CFS as the official cause of death written on their death certificate. In England and Wales, between 2001 and 2016, only 88 death certificates stated that the death was either partly or fully caused by ME/CFS.
I wonder, how many cases are there that have something like this written on them?
- Natural causes (due to failure to find anything wrong - as per comic above)
- Heart failure (people with ME/CFS die approx. 24 years younger of heart failure than the general population)1
- Cancer (people with ME/CFS die approx. 24 years younger of cancer than the general population)1
- Starvation (due to gastrointestinal failure. Gastrointestinal disturbance is common in very severe ME/CFS patients)2
- Suicide (six times more likely in ME/CFS than the general population, due to the poor quality of life and stigma)3
Please... Don’t forget M.E.
It’s currently international awareness week for ME/CFS & Fibromyalgia - May 5 to May 12.
What can you do to help?
1. Learn about this disease and the injustice of the neglect - What is ME?
2. Share awareness widely
3. Donate to research and to organisations that help people with ME/CFS.
GIVE DIRECTLY TO HELP AUSTRALIANS LIVING WITH ME/CFS
Emerge Australia - Supporting and advocating patients with ME/CFS and helping push for more biomedical research.
GIVE DIRECTLY TO AUSTRALIAN ME/CFS BIOMEDICAL RESEARCH
Griffith’s NCNED (AHMF donors)
Very important when filling out the online form to select “National Centre for Neuroimmune & Emerging Diseases (AHMF donors)” from this Griffith University secure donation form.
GIVE DIRECTLY TO INTERNATIONAL ME/CFS BIOMEDICAL RESEARCH
Open Medicine Foundation
OMF had a pilot study published recently with the PNAS (Proceedings of the National Academy of Sciences) of the United States, a renowned scientific journal. A nanoelectronics-blood-based diagnostic biomarker for ME/CFS. They need to do a larger study to implement this testing worldwide and to provide treatments. They desperately need more funding for stage two. OMF are the closest to solving ME/CFS and collaborate with world researchers, including Australia.
https://www.omf.ngo
RECOMMENDED TO WATCH - The following videos are free to watch online
What is ME? - a short overview
After Unrest - a short Australian documentary free on YouTube.
Voices from the Shadows - trailer: http://voicesfromtheshadowsfilm.co.uk
The full documentary is available for free. First, click URL below, join up with Vimeo if you haven’t already (it’s free) - then select ‘rent’ and enter promo code VOICES to watch full documentary for free: https://vimeo.com/ondemand/22513/108797012
* Australian National Support *
* Lifeline: 13 11 14 * Suicide Call Back Service 1300 659 467
* Headspace 1800 650 890 (supports young people between 12-25 yrs)
* Beyond Blue 1300 224 636 * Carers Australia 1800 242 636
* USA National Support *
*Suicide Prevention Lifeline 1-800-273-TALK (1-800-273-8255)
or 1-800-SUICIDE (1-800-784-2433)
Reference:
1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5218818/
2. https://www.meassociation.org.uk/2018/05/inquest-ruling-young-drama-student-merryn-crofts-killed-by-m-e-18-may-2018/
http://emerge.org.au/mecfs/severity/severe-mecfs/#.XNZLsy9L1TY
3. https://www.dailymail.co.uk/health/article-3439290/Chronic-fatigue-sufferers-6-times-likely-commit-suicide.html