“Individually, we are one drop. Together, we are an ocean.” ~ Ryunosako Satoro
Awareness Month is underway!
May is the month that people around the world come together to raise awareness of the Chronic Immunological and Neurological Diseases (CIND) known as:
– Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS),
– Fibromyalgia (FM),
– Multiple Chemical Sensitivity (MCS)/Environmental Sensitivities (ES),
– Chronic Lyme Disease and Lyme-like illness
– and Gulf War Syndrome (GWS).
Some countries are including Long COVID in Awareness Month, though it has its Awareness Day on 15th March.
International ME/CFS, FM & MCS Awareness Day is Sunday 12th May 2024.
The 12th May date was chosen as it was Florence Nightingale’s birthday and she was bed bound for many years with what was believed to have been ME and FM. (Florence Nightingale’s birthday is also why 12th May is Nurses Day.)
This year is the 32nd anniversary of International Awareness Day.
Our Support Group members are represented by displays in the Thirroul, Corrimal, Wollongong and Kiama Libraries at various times during April, May and June 2024. (See below.)
An information stall will be at the Kiama Farmers’ Market Volunteer Expo on Wednesday 22nd May from 2.00pm – 4.00pm at Coronation Park, Manning St.
Coordinator De will be doing radio interviews on ABC Illawarra and Kiama Community Radio for Awareness Day/Month. The ABC Illawarra chat will be at 9.50am on Thursday 9th May. Tune in to 97.3FM or go to www.abc.net.au/listen/live/illawarra to listen. The Kiama Community Radio chat will be at 7.15am on Wednesday 15th May. Listen via the website at www.kcr.org.au/.
Our May Zoom gatherings and our May Cafe Clubs will be our Awareness Month get-togethers. Members are welcome to wear awareness colours and our butterfly symbol to these events! The butterfly was chosen as our worldwide symbol as it represents sufferers being cocooned and hoping to break free from chronic illness and disability and emerge like a butterfly.
Colours for awareness ribbons and butterflies are:
blue for ME/CFS,
purple for FM,
green for MCS,
lime green for Lyme Disease/Lyme-Like Illness
teal, grey and black for Long COVID
Throughout May, but especially Sunday 12th May, we encourage you to wear blue, purple, green or teal PJs, clothes, socks, scarves, gloves, jewellery, etc! Try to be as eye-catching as you can to start conversations and share about Awareness Day!
Share on social media using hashtags such as #may12th or #mecfs, #fm, #fibro, #mcs, #lyme, #longCOVID.
You might like to watch and share group member Jill’s videos from her Chronic Jillness YouTube channel at www.youtube.com/@chronicjillness332.
Library Display Details:
APRIL: Thirroul Library front glass cabinet in the foyer from 3rd April – 30th April (Already finished)
MAY: Kiama Library glass cabinet from 7th May – 22nd May
MAY/JUNE: Corrimal Library glass cabinet from 13th May – 8th June
JUNE: Wollongong Library glass cabinet from 3rd June – 29th June
Support and Advocacy Groups from around Australia and the world raise awareness of these severe and disabling physical conditions all year round, but especially in May.
Some members of our Support Group have ME/CFS, some have FM and some have both. Many also have Multiple Chemical Sensitivity (MCS) and other related conditions.
We now also include members with Long COVID.
People with ME/CFS, FM, MCS, Lyme-like illness or Long COVID can be young or older, male or female, still able to go to work/school full time or part time, or can be house bound or totally bed bound.
We all hope for a cure one day and know that there is a great amount of research progressing within Australia and around the world.
We look forward to the time when everyone in Australia and worldwide knows more about these largely invisible conditions that affect so many facets of our lives, and those of our loved ones.
Until this time comes, we continue to spread awareness and we appreciate the understanding of the community.
ME
#mecfs
My = muscle
algic = pain
Encephalo = brain
myel = spinal cord
itis = inflammation
More info from:-
Emerge Australia: www.emerge.org.au/me-cfs-awareness-week-2023
Emerge Australia’s Facebook page: www.facebook.com/EmergeAustraliaInc
May 12th International Awareness Day Facebook page: www.facebook.com/may12th.awareness/
FM
#fm #fibro
Fibro = fibrous tissue (ligaments and tendons)
myo = muscle
algia = pain
Fibromyalgia, also known as Fibromyalgia Syndrome (FMS) is a condition with symptoms that include widespread, pervasive and chronic pain and tenderness in the body, and muscle stiffness, often accompanied by fatigue (hence a relationship with ME/CFS), cognitive disturbance/difficulties, sleep and digestive problems. Like ME/CFS, symptoms of FM can vary from mild to severe.
The purple ribbon and butterfly are the symbols for FM awareness.
More info from:-
Fibromyalgia Australia: www.fibromyalgiaaustralia.org.au/patients/what-is-fibromyalgia/
Fibromyalgia Support and Advice Australia: www.facebook.com/groups/fibrowarriorsaustralia/
Fibromyalgia Support Australia: www.facebook.com/FIBROMYALGIA-SUPPORT-AUSTRALIA-364885047318/
Arthritis NSW: www.arthritisnsw.org.au//wp-content/uploads/2018/08/Fibromyalgia-Infosheet.pdf
Emerge Australia: www.emerge.org.au/what-is-fibromyalgia
MCS
#mcs
Multiple Chemical Sensitivity causes symptoms in sufferers from exposure to low levels of chemicals – levels that do not cause symptoms in most people. MCS ranges in severity from mild to extreme. Symptoms include fatigue, asthma, sore throat and eyes, nausea, headaches, confusion, anxiety, pain, rashes and palpitations.
The green ribbon and butterfly are the symbols for MCS awareness.
More info from:-
Allergy and Environmental Sensitivity Support and Research Association: www.aessra.org/faq.php
MCS – Australian Awareness: www.facebook.com/groups/multiplechemicalsensitivities/
ME-Pedia: www.me-pedia.org/wiki/Multiple_chemical_sensitivity
MCS-Aware: www.facebook.com/mcsaware/
Lyme Disease/Lyme-like illness
#lymedisease
Currently known in Australia as DSCATT (Debilitating Symptom Complexes Attributed To Ticks). The Lyme Disease Association of Australia defines ‘Australian Lyme’ as illness(s) and disease(s) caused by both known and yet to be identified pathogens in ticks that result in Lyme-like symptoms in Australian patients.
The lime green ribbon and butterfly are the symbols for Lyme Disease awareness.
More info from:-
Lyme Disease Association of Australia: www.lymedisease.org.au/
Lyme Disease Association of Australia Facebook page: www.facebook.com/LymeDiseaseAustralia/
Karl McManus Foundation: www.karlmcmanus.org.au/
Millions Missing
#MillionsMissing
#MillionsMissing is a global campaign started by MEAction to bring visibility and recognition to the millions of people with ME/CFS around the world who are too unwell to participate in life in the community.
More info from:-
Millions Missing Australia: www.facebook.com/MillionsMissingAustralia
Millions Missing: www.millionsmissing.meaction.net/
ME Action: www.meaction.net