awareness : ME awareness (2022) …
Awareness : ME Awareness 2022 …
The well recognised tradition of ME Awareness Month was started in May 2006 by the British charity Invest in ME Research. International ME Awareness Day, May 12th, was already well established by 2006, with ME Awareness Week being the week of May 12th each year. (ME-pedia.org, 2022)<ref>ME-pedia.org. 2022. MEpedia. [online] Available at: https://me-pedia.org/wiki/Welcome_to_MEpedia [Accessed 24 March 2022].</ref>
countdown to ME awareness month start 2022 …
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ME awareness month …
ME awareness month spans the complete month of May.
It is a time when those with ME, their carers, and significant others, use their valuable energy in order to make people aware that ME is a real and very physical disease. We use the time to highlight the tragedy that ME is and its impact on our lives.
I can guarantee that most of us, that is people with ME, leave the month of May totally wiped out and in a full on crash.
In my opinion, I am wondering if the full month idea was brought about to enable those that are much sicker to have an opportunity to join in. Hopefully at least once during the month, if their illness allows.
ME awareness week …
ME awareness week date span varies but is always the week that encompasses ME awareness day, 12th May.
Again, most people with ME will try to engage in this week of awareness in one way or another, especially if we haven’t managed any awareness up to this point in the month of May.
ME awareness day …
ME awareness day is internationally recognised on 12th May.
May 12th is Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. On this special day, most people with ME, even those in the severe category, try to raise awareness and highlight how others can support the millions of people who suffer from ME/CFS.
ME/CFS is a serious, long-term illness that affects many body systems. People with ME/CFS have severe fatigue and sleep problems. ME/CFS symptoms may get worse even after minor physical, mental, or emotional tasks or effort. This phenomenon is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness. Often, people with ME/CFS may not be able to do their usual activities. Many adults with ME/CFS are unable to work and long-term unemployment often brings further hardship. When children have this illness, their education is often affected.
Despite having these symptoms, many people with ME try to do something special on this day, even if it’s just an online event. (see below for ideas)
why May & 12th May …
May 12th honors the birthday of Florence Nightingale, an important social reformer, statistician, and the founder of modern nursing. Despite being virtually bedridden with a painful and fatiguing illness resembling ME/CFS or fibromyalgia, she established the Nightingale Training School in 1860.
This May 12th, 2022, marks her 202nd birthday and the 30th year of ME/CFS International Awareness Day.
a little ME history …
ME, which stands for Myalgic Encephalomyelitis, and often called CFS, Chronic Fatigue Syndrome, (ME/CFS), is a complex illness with an equally complex history. The best way to understand ME/CFS as we know it today is to understand the history of how it was first defined and how the diagnostic criteria has evolved over the past few decades.
The following section has been taken from The Open Medicine Foundation: (2022)<ref>Open Medicine Foundation. 2022. History of ME / CFS – Open Medicine Foundation. [online] Available at: https://www.omf.ngo/history-mecfs/ [Accessed 24 March 2022].</ref>
summary of the 5 major diagnostic criteria from 1988 onwards …
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early misunderstanding and ‘neurasthenia’ …
In the 19th century the concept of ‘neurasthenia’ was introduced by psychiatrist George Beard, which defined an illness largely found in women with symptoms very similar to ME/CFS.
It was generally triggered by an infection and it was described as a “…condition of nervous exhaustion, characterized by undue fatigue on [the] slightest exertion, both physical and mental… the chief symptoms are headache, gastrointestinal disturbances, and subjective sensations of all kinds.” The diagnosis of neurasthenia declined in the early 20th century as its usefulness and validity were called into question.
outbreaks of the 20th century and the first definition of ME …
Throughout the 20th century, there were about 70 possible documented outbreaks of ME/CFS. The condition went by many names but all were linked by their unknown cause and similar symptoms.
One of the most significant outbreaks in the history of ME/CFS was at the Royal Free Hospital in the United Kingdom. Over 200 staff were hospitalized, and the hospital closed for several months due to an unknown illness. During this time, Dr. Melvin Ramsay of the Royal Free Infectious Diseases department called the illness Myalgic Encephalomyelitis (ME).
Dr. Ramsay’s definition remains one of the most accurate clinical descriptions of the illness, and several years later the condition would be recognized by the World Health Organisation in 1969.
centers for disease control and prevention (CDC) and CFS …
Several significant US outbreaks led the CDC to put together a working group to reach a consensus on the definition and clinical description of these illnesses. This group recognized that the many outbreaks had to be known by many other names, including ME. They put together the first description of Chronic Fatigue Syndrome (CFS) in 1988 in order to classify the disease population to improve comparability and reproducibility for research purposes.
In 1994, the definition of CFS was loosened. This criteria has since been criticized for its broad definition that significantly increases the chances of misdiagnosis and impacts the effectiveness research. Furthermore, the name has been faulted for misrepresenting the severity of the illness.
the re-introduction of ME as ME/CFS …
In 2003, the development of Canadian Consensus Criteria further refined the definition of ME/CFS. The key change was requiring the presentation of the symptom post-exertional malaise, a symptom named for ME and distinct from symptoms experienced in most other chronic disorders. The International Consensus Criteria removed fatigue as a required symptom in 2011, putting more emphasis on the other symptoms of the disorder in an effort to refine the diagnosis to symptoms which are distinct from other chronic disorders.
the improvement of research …
With an improved diagnostic criteria, the quality and consistency of research into ME/CFS began to improve. The specificity of the diagnostic criteria has resulted in tighter cohorts for comparison to healthy subjects in research studies. The specific criteria, however, also reduced the prevalence of the disorder, including among previously diagnosed CFS patients who no longer fit this symptom set.
what will I do …
It has been a long time since I last left the house. So, whatever I do it will be virtual.
Last year I raised almost £100 for the ME Trust, now part of Action for ME, when I tried to read and review 10 books in 10 months. It was hard. I managed to read three, maybe four, and the rest I listened to on audio. I reviewed them as I went along but somehow some of my writings got deleted and I couldn’t do them again.
This year, I am thinking I might do something more simple. Like maybe, a more detailed journal blog, which I already write anyway, and also post more awareness posts on, @fragmented.me.uk …, my Instagram account.
I will play it by ear, because of late I have been extra poorly and so my abilities are very limited.
That said, I will add to this blog when I decide and if I should change my mind.
what could you do …
You could #GoBludFofME or take part in a #MillionsMissing protest or join in the #BlueSunday tea parties or even host your own.
Whatever you do, enjoy it and have fun if you can …
go blue for me …
There is a saying in relation to ME awareness, which is:
GO BLUE FOR ME … #GoBlueForME …
And so most of us wear blue for, at the very least, the official day but I wear my ‘Go Blue For ME’ t-shirts all month (I buy two new ones each year). You too could buy a Go Blue For ME tee and wear it on 12th May, or anytime come to think of it, and you will be supporting another wonderful ME organisation in the UK. When you do wear it, be prepared and know what ME is and some more specifics surrounding the day because people will ask you questions and you will be surprised about how many people haven’t even heard of ME.
Why BLUE? Because blue is the internationally accepted and recognised colour of M.E. Awareness. How you GO BLUE is entirely up to you… How far you go BLUE is also entirely up to you. Just do all you can to colour in this cruel invisible illness…. (ME Association, 2022)<ref>The ME Association. 2022. ME Awareness Week. [online] Available at: https://meassociation.org.uk/get-involved/me-awareness-week/ [Accessed 24 March 2022].</ref>
millions missing protest …
#MillionsMissing is a global campaign for myalgic encephalomyelitis (ME) health equality. We demonstrate around the world for equitable research funding, clinical trials, medical education and public awareness for ME.
The first global #MillionsMissing protest took place in May, 2016. An activist from North Carolina grew so frustrated by the lack of research funding and medical education for ME that she decided to organize a demonstration in Washington, DC. She approached #MEAction about helping to organize the protest, which led to people with ME organizing protests around the world.
You can take part this year by going to #MEAction website where they state the following: (2022)<ref>#MEAction, 2022. #MillionsMissing 2021. [online] #MillionsMissing. Available at: <https://millionsmissing.meaction.net/> [Accessed 24 March 2022].</ref>
This year, we are excited to announce that #MillionsMissing will be held in two parts: May and September!
#MillionsMissing is about demonstrating our community’s collective refusal to let the stories of people with ME be erased, or access to healthcare and medical research blocked. We protest against all barriers to justice for the growing community of people with ME, including those affected by Long COVID and other complex chronic conditions.
In May, we will focus on coming together virtually to celebrate our vibrant community through support, art, and empowerment.
In September, our goal will be to gather in person, in ways that are safe to do so, and use the power of our collective action to win widespread attention for the health justice we all need.
Both #MillionsMissing events will have virtually-accessible components because your participation is critical to this movement, no matter your health or ability level.
We invite you to participate in both events to focus on community gathering in May and outward action in September. There will be actions in both the UK and the US and options to get involved and take action across the globe.
blue Sunday …
Anna Redshaw, who runs the ME blog website M.E. myself and I (formerly The Slow Lane), launched her #BlueSunday tea parties back in 2013, and they have been going strong ever since.
Anna (Redshaw, 2022)<ref>Redshaw, A., 2022. About ‘Blue Sunday’. [online] M.E. myself and I. Available at: https://the-slow-lane.com/blue-sunday/ [Accessed 24 March 2022].</ref> says,
“I invited friends and family to join me for afternoon tea and asked for small donations of the price people would expect to pay for a pot of tea and a slice of cake in a coffee shop.
As many of my fellow sufferers are too poorly to travel, I held a virtual tea party too, where people could join in online.
I uploaded photos and videos of the event being held at home so that even those stuck in bed on the other side of the world could join in.”
You can find out how to join in by going to Blue Sunday 2022.
whatever you do …
Be it, #GoBlueForME #MillionsMissing #BlueSunday or something you choose yourself, just remember to …
STOP
REST
PACE
and enjoy it as much as you can …
Oh and if you want to share your ME awareness plans, and for us to share them too, please just contact fragmented.ME using the ‘let us know how we can do better’ area below (once you have voted you get an options to send a message), or you can just contact us … using the link.
countdown to ME awareness end 2022 …
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fragmented.ME xXx
fragmented_ME
My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰
