Written and Researched by Heather – with more added monthly!
Resources Table of Contents page. This is the section that will probably be used the most, so I suggest bookmarking this Resources Table of Contents page. I intended to check the links every six months because I hated all the dead links I found in my own MCS crisis. Unfortunately, I and everyone I know has become increasingly ill, so I don’t have any volunteers to just tell me what links are dead. I’m sorry! I do remove ones that I know are gone (I don’t know how to live without Heart of Vermont’s pillows and exercise futons!) and add the exciting new research about MCS, Mast Cell Activation Syndrome and Chronic Fatigue Syndrome/M.E., which all have given legitimacy to our suffering. From the table of contents, you can access these pages of online information and shopping links:
- General MCS Information
- Health Care Related Topics
- Medical Research
- Treatments Recommended by Canaries
- Electromagnetic Sensitivity
- Ink Intolerance & Toxic Dangers of Art Supplies
- Housing/Camping & Automotive
- House Care & Furnishings
- Cleaning, Food Related Topics
- Clothing, Shoes, Masks & Fabric/Yarn
- Emotional Coping, Free Online Fun & Sensory Defensiveness
- Socializing with MCS
- Romance & Sex
- Healthy Communication & Community Building
- Activism & Educating Others
- Legal Issues & Disability Rights & Employment with MCS
- Schools, Children & Parenting
- MCS Community & Helpful Blogs by Canaries
- General Environmental/Poison Information
What is MCS? From the amazing Chemical Injury Information Network, written by long-term activist Cynthia Wilson. Although I posted it here due to hackers destroying MCS websites, please visit CIIN for this essay of the history of MCS research.
Please note that MCS often is a symptom of Lyme disease and Chrome Fatigue Disorder/ME.
A very likely cause of MCS is Mast Cell Activation Syndrome, a hyper-reactive immune system disorder that starts from extreme and/or long term trauma such as Lyme disease, a viral or bacterial infection, surgery, exposure to chemicals, emotional trauma, etc. It’s all the same to the body; trauma is trauma. The amazing new research from the UK and Boston about CFS/ME seem to show the same cause and result as is suspected with MCAS.
Mast cells are a semi-mysterious part of the immune system. They release “mediators” if there is a threat. The mediators cross the blood brain barrier, causing neurological issues. This has been the missing link in MCS: how are chemicals crossing the blood brain barrier? They are not; the mediators released when we have an exposure to chemicals are. The “brain fog”, limbic system “emotional” response, dizziness, fainting, vision issues, communication issues, pain, fatigue, etc come from the disruption to the nervous system.
MCAS may be the cause of your MCS especially if you have several of these health problems: Lyme disease, auto-immune illnesses like RA, MS, etc., fibromyalgia, Chronic Fatigue Syndrome/ME, asthma, type 2 diabetes, hypoglycemia, generalized anxiety disorder, asthma, nonallergic/vasomotor rhinusitis, any allergies, extremely sensitive skin, medication intolerances, rashes, fertility issues, autism, migraines, Irritable Bowel Syndrome, Celiac disease, brain fog, GERD, or many other “odd” seemingly unconnected problems. With MCAS, anything inhaled, ingested, or touched (a trigger) can have any medical (including “psychological” ie neurological) reaction. Every person has different triggers and reactions, explaining why the symptoms are multi-system and so different for each patient.
Mast cells produce many “mediators” that tell the body how to respond. With MCAS, the mast cells become hyper-reactive to certain triggers. Mast cells especially line the skin, mouth, throat, stomach, intestines, anus, sinuses, lungs, and cross the brain-blood barrier. The mediators cause changes in the immune, neurological, digestive and endocrine systems. Reactions vary widely, but the most common (49%) is cognitive impairment. Fragrance is a well documented trigger and it is much easier to be taken seriously at the Emergency Department saying “mast cell activation syndrome” than “multiple chemical sensitivity” which should advance the quality of our lives.
Learn more about MCAS, mast cells, and under Resources at the end of the Medical Research section. There is a test for it, but unfortunately almost all doctors who work with MCAS patients are on the U.S. East coast. The top researcher is Dr. Lawrence Afrin and doctors who have MCAS patients are invited to join the online discussion group. Allergists especially need education about why their ill patients have negative test results.
The usual treatments include 40mg Pepcid for the stomach histamines (protein pump is a histamine pump) and some type of antihistamine or other medication, DAO supplements before meals, and Cromlyn especially for food intolerances and G-I issues, which can also be spread on strange skin issues that don’t respond to anything else. However, usually you will have to try many medications and supplements because MCAS is so different for each patient, we tend to be triggered by medications and supplements! Nothing has helped me yet, but the diagnosis makes my life easier and I understand my body much better. The usual treatments for MCS (B-12 Methylcobalamin, glutathione or NAC, milk thistle seed, dandelion root, clay or castor oil packs on the liver, lots of water, DenBarber masks, air purification, water purification and avoidance of triggers) does greatly help me. I don’t leave my apartment aside for the doctor visits over 2 hours away and I have no visitors, basically living in solitary confinement, but that lead to a rewarding volunteer self-created position helping the 1% of Americans in prison!
Also written by Heather:
- Helpful Hints
- Body Care & Clothing
- Healthcare Providers
- House Care
- Birth Control
- Arts & Crafts
- Personal Care Products
- Sample Legal Letters
- Voc Rehab
- Celebrity MCS Memes to Share!
- Psychological Skills
- Asking for Help
- Emotional Health
- Emotional Norms
- Social Skills
- Canary Etiquette
- Difficult People
- Real Friends
We finally have someone famous stating that MCS is real! While Sanders is a news-worthy figure, we need to use his fame to reach others! Please! Share the Bernie meme! Spread awareness! Awareness of the problem is the first step to getting the legally covered disability justice accommodations we expend so much precious energy to try to receive. Awareness means that people will treat us better. Awareness means that the 20% or so of the population with MCS will understand why they are so ill. Awareness means that fragrance-free products will be recognized as more lucrative for businesses. (Look at the huge increase of gluten free foods for an example!) Awareness means people will not use carpet or “air freshener” in their homes and rental properties, because they know it will affect resale value and rent prices. Awareness means that people will want proper medical care for their family and friends with MCS. Awareness means medical workers may look into the new MCAS research and stop treating us as mental health patients. Awareness means that the government will want no-VOC paint, no carpet, well ventilated, fragrance-free work places so those with milder MCS can work and pay taxes. (That’s the reason for the Republican created Americans with Disabilities Act, even though both the Reagan and Bush administrations were not supportive of the needs for people with disabilities until Bush realized the financial gain for the U.S.) Awareness changes public opinion, especially when they realize how many people (perhaps including them) are excluded, suffering and treated like garbage because of an illness not fully understood.
Don’t let our big opportunity to easily spread awareness on social media be wasted!