What help is there for Multiple Chemical Sensitivity?

[Camembert]

Hello everyone.

A dear family member has what's called "Multiple Chemical Sensitivity," which means he is very sensitive to things like smells and odours (eg, the smell of shampoo, perfume, tea, flowers, plastic, in fact most things.) These triggers produce symptoms like coughing and sore airways, etc. It means he can't do a lot of things because he has to avoid many things and places.

There is debate about whether MCS is a psychological problem or not. Some Drs think it could have a psychological element to it... so I want to try to get him some help from a psychologist or mental health professional. (He's already done all the things suggested by MCS support groups, like avoidance of triggers, natural supplements, air filters, etc.)

I tried looking up the psychologist directory, but have no idea where to get help for this, as I don't know what category it fits into. I can't find any mental health professionals online that have this as an area of specialty or know how to deal with it. I have no idea where to go or what we can do!

This problem is making his life so difficult. Any help would be appreciated!! Thank you!!

Camembert.

[romantic_thi3f]

Hi Camembert,

I'm so glad your post has had so many responses; I always thought MCS was so rare but it looks as thought the power of the internet has brought some people together 🙂

With your question about finding a psychologist, I wonder if it might be worth contacting them directly before organising the referral. You could simply ask something like "A family member has MCS. Is this something you'd be happy working with or could you recommend somebody?". I've done this before (with different illnesses) and they've been really helpful about it.

Personally, I think it's less about having them having clients with MCS (which will probably be quite rare) but rather being open to understanding more and working together to manage it as best as they can.

Best of luck in your search.

RT

[DrSarah]

Actually, in the most recent academic literature on Multiple Chemical Sensitivity (MCS), the debate about whether or not it is psychological seems to be long dead. Unfortunately, there is a lot of misinformation about MCS online, and this is not helping sufferers.

The most up-to-date and balanced information site I've seen about MCS is here https://me-pedia.org/wiki/Multiple_chemical_sensitivity

I think that the information and links provided there may be useful in helping sufferers and their families work out what supports may be useful in living better with the condition.

Good luck,

Sarah

[Medic8]

Hi Joofsen, hey could you please mention the product that helped with MCS?

[Sophie_M]

Hi Medic8,

Welcome to the forum, it's great to have you join us. 

As part of the community rules, stating the names of specific mediations is not permitted as this is a conversation to be had between a GP and patient privately. All people are different and have very specific needs. We reccomend that you have a deeper discussion with your GP if you have already had this discuss already.

Please continue to visit the forum and engage with the community. 

[Medic8]

Hi Sarah, thank you for your information as it does seem quite up to date. I see you refer to yourself as Dr Sarah. If you are a Dr, I was wondering if you would be able to help me find the correct way or place to go to get a diagnosis for MCS. I live in Brisbane, Australia. I have a lot of the symptoms that relate to this condition and have been off work for 5 of the last 7 months due to exposures to chemicals, dust and fumes. I have lost 2 jobs in this time due to what I believe is MCS. I have been referred to an Occupational Physician but question their ability to diagnose MCS? Any help from you or anyone else reading this post would be appreciated.

Ray

[celestialdancer]

Hi Ray,

I was diagnosed with MCS 40 years ago by a specialist/general physician and spent 5 weeks in hospital being tested.
It's a lonely road and very misunderstood. Recent research shows that the link between MCS and mental health continues to be hotly debated. There are numerous studies about this. One recent study (pub Oct 2021)that actually looked for causal links (not just observational) concluded:
Conclusion: Using MR, we were unable to replicate most of the phenotypic associations between allergic disease and mental health. Any causal effects we detected
were considerably attenuated compared with the phenotypic association. This suggests that most comorbidity observed clinically is unlikely to be causal.

(this research is under Creative Commons so can be copied)

See https://onlinelibrary.wiley.com/doi/10.1111/cea.14010

I really hope you've found folk to support you, Ray. I can highly recommend joining AESSRA but the impact of a professional sympathetic ear is also invaluable.

Helen

[Medic8]

Hi Helen, thanks for your reply. Firstly the mental health side or Anxiety comes after exposure as it is distressing. I just recently got diagnosed with “Tilt” syndrome and “MCAS”. Tis a relief to know you are actually finally bloody well understood. Sorry but the 15 month wait to finally find out is breathtaking. I have lost 4 jobs now due to chemical exposures. I have worked full time or equivalent since I wax 16, I’m now one month off 50. The last 15 years was on an open cab excavator exposed to diesel and dust. Average wage was $85000. Now under $20000 and destroyed. Nearly divorced. The only blessing is the bitter sweet diagnosis. At least I have evidence. I cry most days dealing with getting back up after job after job after job loss. Government won’t help me as I’m asset rich apparently. If I just got an understanding workplace and appropriate accommodations I’d be paying taxes. Instead I’m thrown on the scrap heap cause it took to long to get a diagnosis been to professor in respiratory, professor in immunology. Allergist, had biopsy of stomach, gps, general respiratory dr, sleep studies, massive amount of blood tests, psychotherapists, you name it I’ve done it all to my expense when it happened through a witnessed Work accident. Bloody rough ride. Now I’m seeing an environmental dr, at least he’s trying to help when Workcover and workplace writing you off. Sad world when your track record says your crashing and burning and everyone looks through you. I’m lucky I’m still here. Have been close to ……

[MCSSnowflake]

Hi All, I have MCS that was confirmed by blind testing by a allergy specialist.

The Australian Government did a study into MCS in 2010 and confirmed that the condition is real but to date there's yet to be a exact cause as more research was required. It's a accepted Disability in Japan, USA, Canada, UK and Australia.

While the exact cause of MCS isn't known modern medicine, toxicology and pharmacology is 100% based on the fact that chemicals cause physiological symptoms and we use chemicals all the time to treat all sorts of physical and mental ailments.

CT scans showed clear differences between MCS and NON-MCS suffers in response to triggers - even when they were unable to smell them so while MCS does have a neurological components the claim that it's 'all in your head' is misguided/harmful as it's well documented that chemical exposure to things we thought was safe like secondhand smoking, radiation and PFAS are now known to be able to harm multiple body systems.

If you have a friend, family member or other person in your life who tells you they have MCS/chemical allergies or similar conditions the #1 thing you can do to help them is BELIVE IT because MCS is a bit like having a peanut allergy before we knew peanuts were a allergen...

There's a lot you can do to support them - the biggest is to have a look at your own personal care products/habits and household to see what you personally can change to accommodate them.

Not only will this help your friend but odds are you may also find a health benefit from switching to safer products.

In terms of mental health - yes you totally need mental health support from people who understands MCS is real but at it's core MCS is a public health issue - not a mental health issue so the best thing is to help your friend get the basic accommodations they need to live a more full life.

One start is to talk to your Council about getting fragrance out of public places like toilets/hospitals as it's estimated 1 in 4 have adverse reactions. Try to make bookings telling the venue that they have MCS and what accommodations are required.

MCS is no different to food allergies in that there's a lot of pressure/stress on the individual and those little steps can go a long way. AESSRA is also great.

Hope this helps!

[Ro7]

Other than saying why I don't think it is a mental distortion or about substances to intake like healthful oils, I want to share excitement with others about products and places free of triggers. I don't need to convince people about what I choose to boycott because we have the freedom to make choices that make us happy. Instead of dwelling on misunderstanding, let's find what does work. 

[Christophh]

Necroing.  I believe I have MCS. You may have better luck than me with GPs but so far i've yet to find one that either isnt in a rush, prescribing something which didnt help, or just call it depression and be done with it.  Not to say that a good GP couldn't be helpful, but i've yet to find one that I believe truly cared, took the time to investigate or even acknlowedge MCS as an actual condition.  In the US it is diagnosable, not in Aus.

Air filters - in general they will be a waste of money for MCS sufferers.  Unless you have a science lab setup which is exchanging fresh air for stale air every 15mins, air filters dont do much.  I bought a 2000$ swiss IQ Air model, it worked fantastically well for 4 days, the air in the room smelt sweet, and then after that it didnt, and they said the filters are clogged and would need replacing for 800$.  800$ every 4 days to sleep well.

You can try creating your own ventilation with two fans (ideally strong ones) side-by-side near the window, one pulling air in and the other pushing it out.  This helped me mildly.  

Aessra is a forum you can join in Australia.  It can be helpful but the site isnt so easy to navigate.  There are other forums abroad as well.

Ive seen many specialists and even a dietitian.  She suggested some supplements to calm my nervous system.  Did a GP-advised CT scan of my head to check for any structural nasal issues.  It detected some minor nasal congestion but no abnormalities.

From the many things ive read and heard, the most common theme is that it could be a nervous system issue, adrenal issue (flight or fight response), or immune system issue.  Any one of these can mean the body is too "wired" or weak to adequately deal with toxins the way a healthy person would.

If you are also interested, one other health expert I saw suggested its a liver issue; the liver is involved in detoxifying the body. She suggested fresh juices and a colonic at a treatment centre followed by at-home enemas with green coffee beans, which directly hits the liver.  I've just ordered the coffee beans.

Of course these are just things i've tried and for your friend they may need to consult a health professional first before trying such things (obligatory disclaimer).

It can be tempting for your family member to look for answers outside, but ultiamtely they have to solve the problem internally.  Of course they can buy things like a chemical-free mattrress (only two retailers in Australia) and chemical-free pillow, that helped me sleep a little better.  

Another suggestion for their emotional health may be to join a social group or do some regular charity work.  It helps you to feel grounded and more positive when you interact and share and help others.  Having MCS as a man and having poor sleeps has also dented my confidence, and since we live in a mostly judgemental world; where I would get ghosted even by people I tried to make small talk with at the grocery store checkouts; joining a non-judgmental group and feeling worthy is really helpful for mental health.

Diet is also important.  You can take activated charcoal, zeolite, and bentonite; these are all used to filter chemicals from the body.  Vitamin C and other foods can boost your defense against free radicals.  Vitamin D is also important from what i've read.

Once again a disclaimer though - these are just what worked for me, the path might be different for your family member.

You are welcome to pm me for more info / questions. Good luck