Thank you Breakspear Medical, and Patients
Of great interest are the treatments coming out of Breakspear Medical Hospital in the UK. Yes, it’s private, and many cannot afford to go there. But for those who can, well, they are paving the way for people with any or all of the 6 overlapping medical conditions that fall into the category of Environmental Illness: MCS (Multiple Chemical Sensitivity)/EHS (Electro Hypersensitivity; ME (Myalgic Encephalopathy, sometimes also known as Myalgic Encephalomyelitis)/SEID (Systemic Exertion Intolerance Disease—formerly and still called CFS (Chronic Fatigue Syndrome in some countries); CIRS (Mould Illness); Fibromyalgia; Lyme-like Illness, and PTSD.
For the treatments applied and practiced, the research papers, and all the information just like the following to come, will filter down to the public, Big Business and small, and General Practitioners. Eventually.
But for now, we’ll share their steps to becoming scent free:
Steps to becoming scent-free
Do not use perfume/aftershave or any scented toiletries
Please avoid using scented soap, standard hair products, skin lotions or any other perfumed toiletries.
Be sure not to wear clothes, which may still have traces of fragrance on them.
Standard cosmetics, such as lip balm, should also be avoided. If you use makeup, please ensure it is scent-free.
Wash and dry your clothes with unscented laundry products
Most laundry detergents, fabric softeners and anti-static dryer sheets are scented, which can adversely affect you and other patients. Use a ‘for sensitive skin’ or scent-free non-biological laundry powder with low perfume levels or none. Note: sometimes it can take several washes to significantly reduce the fragrance from clothes that have been cared for with scented products.
Boric acid will effectively clean your clothes and scent-free anti-static balls in the dryer (which are unscented) will help reduce static and wrinkles.
Dry-cleaned clothes need to be thoroughly aired, by hanging them unwrapped in a well-ventilated area for an extended period before bringing them into the clinic, or if possible, leave them in your car.
Eliminate air fresheners from your environment
Do not use house or car air fresheners, particularly ones that spray into the air, as these can adhere to your clothing, a handbag, briefcase, rucksack or footwear, as well as on hair and skin and leave a detectable scent.
Do not use scented candles or potpourris or burn incense in your home, as these may also leave a scent on hair, skin, clothes and furniture, which could trigger a reaction in you or another patient.
Note: I find it heartbreakingly sad that it’s almost like a friendship test. It’s often the ones who you think who would never do this for you who actually do; and the ones who you think are your like your besties or close family or extended family members who won’t help or outright refuse to, or only half-heartedly try, and then say: “Nothing I do is good enough.”.
What, I, personally find precariously rocky is the resulting fact that friends and family think that if they don’t spray on fragrance or put on scented products that particular day of seeing me, they believe that they are fragrance-free and unscented… If I complain because I feel incredibly sick, or a rash appears on my face and my carer or friends’ mention that it’s fragrance residue that’s the cause, people commonly think that they just can’t please me. They’ve even said, “I did’t wear fragrance today; so what is the point?”. They take it personally. (I used to take it personally too. Ergo, if I want to get better, I can’t sit around or lay in my bed thinking about how much this person has hurt me by their inactions; or how I must be an inconsequential human being for that to have happened. I must accept those people for their behaviours, while moving on from this and the pain in my heart.)
What is the point of us seeing each other?
When the real culprits to blame here, besides their lack of desire to assimilate the information, or my own ability to express it, rather, it’s the layers of the various fragrance products (hair shampoo, conditioner, gel, hairspray (and even if they didn’t put it on they still brushed with the same hair brush, coated with the scented products that day); washing powder, fabric softener, dryer sheets (I’ve heard, not experience this one); car air-fresheners, Ambi-purs, Glade plug-ins (commonly known as FEDS (Fragrance Emitting Devices) that spray out all over them before they even walk in the door. And the fragrance left behind on my hair, clothes, and, in the past, my furnishings. I rarely take visitors or visit because it just doesn’t work out: you’ve not experienced this until you’ve kissed the face of someone you love and had scented face cream on your lips, which caused a reaction for 6 days afterwards; or the ache in my lower lungs that hurts for 6 days after breathing in actual aftershave:
It makes you thankful for the handful who go to the effort of keeping brand-new clothes (that we offer to pay for) not worn or washed with fragrance products, and kept safe, at our home. They shower with our products before they leave home to visit us. And usually shower again when they arrive, changing into the clean clothes kept at our house.
Often it makes me feel like I can’t win; and I know I’m not alone in that. But I won’t stop pushing on with my education agenda!
But then there are the few who have changed products permanently for their own health (as well as mine and others like me), who make me see that it’s not me at all… It’s something else, something I cannot yet articulate, yet.
These are illness we have no control over; apart from expensive medical testing and treatments. The least people can do is accommodate us. Engagements (even my own), weddings, parties, Christmas, New Years Eve, birthdays: these are all non-events for me and so many others.
Gratefulness takes on a new meaning. As does love, family and friendship.
More From Breakspear Medical
It is a current cultural phenomenon that so many things are scented and most people feel that a smell like a mountain meadow means that it is clean, fresh and desirable. Not many people give thought to what it is that is creating the enticing artificial smell; the smell is in fact volatile organic compounds (VOCs) being inhaled as vapours and absorbed through the skin.
As Breakspear Medical is a medical facility specialising in allergy and environmental medicine, new reports and studies that focus on these areas of concern are frequently reviewed by our doctors and collected for reference in our medical library.
More and more studies are being published that link more frequently occurring conditions, such as non-specific headaches, asthma, eczema, dermatitis, psoriasis, multiple chemical sensitivities, chronic fatigue and numerous other conditions, to fragrances.
From Breakspear Medical on Going Scent-Free for Inpatient Services; and for Visiting Others
Research on ME/CFS at Griffith University: Professor Sonya Marshall-Gradisnik
Emma Franklin’s HeartBreaking Post on her experience with the labels: MCS; ME/CFS (SIED); Fibromyalgia, written to celebrate ME Awareness Month