“What I Wish People Knew About ME/CFS”
Written by OMF Ambassador, Jennie Jacques
In response to A Journey Through the Fog’s ME/CFS Wishes Campaign, Actress Jennie Jacques, OMF Ambassador, and person with ME/CFS, shares what she wishes people knew about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS):
What I wish people knew about ME/CFS? Well, it isn’t just “fatigue” & it certainly isn’t a “choice” to stay in bed one day for the week or month or year(s) – when you feel like it. If you’re a healthy person reading this, then try to stay in bed for a full 24 hours with zero pre-warning – you’ll likely respond with, “I can’t do that” or that you don’t have that “luxury.”
People have responsibilities, loved ones, children & most need to earn a living to survive. Well, ME/CFS doesn’t ask your permission to cripple you, and life doesn’t give the sufferer a free holiday for however long they need it. On bad days, some people with ME/CFS can’t even watch tv or read a book.
There are #millionsmissing with this illness who are quite literally left in the dark – some experiencing fluctuations, with good & bad days, others constantly in pain.
Many patients were healthy, active individuals with a great zest for life – now struggling with their general ability to function. Many are unable to return to work.
There are #millionsmissing with this horrific illness. The science needs funding today, not tomorrow, so we can find effective treatments.
The illness is often initiated by viral infection – & Long Covid is sadly not exempt – which means numbers will only increase. Please be empathetic & please help the unheard & unseen by using your voice.”
All I ask is for people to bake a little something for Bake 4 ME/CFS to support @openmedf or re-post donate links for OMF: https://bit.ly/Omf-donate
One day there will be recognition & a cure. Until then we will validate & educate as best we can.