Simon Wessely on Multiple Chemical Sensitivity (MCS): "related to expectations and beliefs"

[brenda]

Countrygirl, that was horrific.

I did not understand why the whole family became sick with severe flulike symptoms after the house was sprayed. They should have moved us out first. The men wore no protection so l thought it was safe. Wrong.

I was the worst and was having blackouts and vomiting and we were back and forwards to A&E with our nine year old, regularly late at night with supposed asthma attacks. He was not responding as he should to nebulisation so they said it was psychogenic. I was also having breathing problems but the GP did no investigations.

We did not know it was the spraying of Carbamate that had made us ill. We just thought it was the stress of a difficult move. We tried to join in with the sheep farmers action but legal aid was removed and none of us received compensation. My husband and sons after they grew up have never worked.

I think that they began to vacate during spraying after that.

 

[Countrygirl]

Hi @brenda

I had to google Carbamate and I read that it has a similar effect as an OP.

I am so sorry to hear that you too were a victim of this scandal.

The OP farmers were also appallingly treated. One of them sent me the form that was distributed to them all from Guy's poison unit. It was a complete disgrace and was designed to humiliate them. It was very clear that no one would take responsibility for their poisoning and those that tried to fight on their behalf for justice were threatened into silence (That is a story and a half!) A number I know committed suicide and others became bankrupt as they were too sick to run their farms. It is a shameful episode and it was maintained that they were mentally ill as poisons were not..............poisonous. Try telling that to Lady Mar who became ill through OP exposure!

 

[brenda]

Lawyers were involved in the scandal, postponing the class action just long enough for the government to take legal aid from us. Many commited suicide l know. Lady Marr has been able like me to improve her health.

The world's economy is run on the lie that these toxins are safe for us.

 

[Gingergrrl]

Mast cell activation syndrome (MCAS) is I think a well established condition.

It absolutely is a well established condition. It is usually a secondary condition (unlike mastocytosis which is primary). There are allergists/immunologists who specialize in this condition and most of them are very highly regarded by their medical colleagues.

A sham exposure is almost certainly the experimenter saying 'now the chemical is coming' and either releasing the chemical or just not releasing anything. It seems that a proportion of people diagnosed as 'MCS' react just as often when there is nothing there.

For me, the researcher would not have to say, "Now the chemical is coming". When I am at my IVIG (in private section with curtain closed so I see nothing outside of my little area) and the nurses start cleaning one of the other chairs w/their chemicals, or another patient walks in with strong perfume or lotion, I smell it and react immediately.

No one has to alert me and one time I was asleep and the smell was so strong that it woke me up! I am able to tolerate these smells now probably 90% of the time w/o a dangerous reaction, but I will always notice it and feel uncomfortable (i.e. it will burn my throat and eyes, sometimes give me a headache, sometimes tachycardia, etc). But no longer to the level that I cannot tolerate food or get stage 2 anaphylaxis.

It may well be releasing nothing into the air and saying they have released something, Fair enough. But who is releasing it and what shampoo did they use, what washing powder, is there new furniture in the room, what has the room been cleaned with? these will all interfere with the results.

Very good point @justy and I was thinking the same thing.

I would want to be sure that the sham chemicals do not provoke a reaction themselves.

Exactly! Someone with MCAS can react to anything. It doesn't need to be an IgE trigger like peanuts. There was no "sham" chemical when I was at the level I was in 2015. If someone had cleaned the room w/Febreze (or any air freshener) even the day before, I could get a dangerous reaction (at that time). I was staying in a hotel last summer and they promised the pillows did not have feathers (b/c I am allergic to feathers life-long) and I believed them and was baffled why I was so sick or what I was reacting to? We figured out the next day that the pillows and comforter did have feathers. The hotel profusely apologized, and switched them out for non-feather pillows & comforter, and my reaction almost immediately stopped.

If you gave a peanut to someone who suffers from anaphylactic shocks I'm pretty sure knowing it was the real thing and not a "sham substance" it would cause a "response".

Exactly, and are these so-called "experiments" worth killing someone over?! Am not asking you, but Sir Weasle. I am still allergic to food dyes (especially yellow and red) and if you blind-folded me and gave me a medication and told me it did not have a dye but it did, I would react. This is not a placebo game to see who lives or dies.

"Stand against this wall we are going to throw knives at you, the person throwing them may or may not be a trained knife thrower".

Exactly

I wonder if those of us who acquired ME through chemical exposure,,,,usually organophosphates in the UK and before that ....as in my case........organophosphates.......... (or in addition to a viral trigger...........a double whammy.....to use a highly technical term ) are the ones who experience such extreme reactions to toxins?

I absolutely believe that organophosphates were a trigger (not in my case) but for the people who were exposed to them. I worked in a bldg in my prior job for 10+ years that was condemned in an earlier earthquake. It had all types of chemicals, asbestos, etc, that were later deemed unsafe. I also had toxic mold exposure for 3 yrs in prior rental. I developed MCAS before I knew about the mold situation.

My immune system fought it until it could not fight any more and I eventually became allergic to all food but water. But when it started, I had no idea why. Moving away from the mold and giving up all of our belongings was the first step in tamping down the allergic reactions but it required other meds & treatments and finally IVIG to truly put it into remission (but I know it is still there and might come back when I stop IVIG in May).

 

[ljimbo423]

I have never been diagnosed with MCS but I have a strong aversion to odors like perfumes, chemicals etc. and usually feel the need to hold my breath or leave the area. I also have significant allergies, with almost constant congestion and runny nose, 24/7/365.

I have a hard time believing MCS is just psychological, especially since it and my allergies came on together with my CFS and CFS is no more psychological than a broken leg.

The fact that so many with CFS also have MCS, seems to suggest that it's a physical problem. It seems to me MCS, is an immune system problem very similar allergies.

 

[Large Donner]

Also did they toxify the test subjects with real chemicals samples and then expose them to the "sham chemicals" then record responses to the sham assuming that the previous reaction should have discontinued? Even doing this with random "sham and non shams", on the same day could render the results meaningless.

 

[Hip]

No one is sure. I know some people, myself included, believed MCS to be MCAS - MCAS is fairly new to the medical world and is hard to diagnose - most people with MCS would meet criteria for MCAS and I often wish they would look into it as it is possible to improve symptoms with MCAS treatment.

Certainly someone who has MCAS could misdiagnose themselves (or be misdiagnosed) with MCS, so I agree that anyone presenting with MCS-like symptoms would want to investigate the MCAS angle, especially because there are treatments available for MCAS (H1 antihistamines, H2 antihistamines and mast cell stabilizers).

But I can't find any evidence online of MCAS being viewed as a possible explanatory mechanism for MCS. The Wikipedia MCS page does not mention MCAS, and the Wikipedia MCAS page does not mention MCS.

And the very comprehensive list of proposed physical mechanisms (and the discounted psychological mechanisms) for MCS provided by James Madison University does not mention MCAS, even in passing.

And if you place the phrase multiple chemical sensitivity (and its new name idiopathic environmental intolerance) into a Google search, along with mast cell activation syndrome / disorder, I could not see any medical webpages that come up that view MCS in terms of MCAS, or vice versa.



My feeling is that MCS may essentially be an olfactory phenomenon: that is to say, one mediated by the sense of smell, the olfactory system in the nose. So if your olfactory system were temporarily anesthetized, if my view is correct, your MCS would temporarily disappear.

This might also explain the studies which found that trigger smells which are masked by other smells no longer seem to provoke a physical response.

An olfactory mechanism for MCS features in the limbic kindling hypothesis of MCS.

Such an olfactory mechanism for MCS would sharply contrast with the mechanism for MCAS, which is due to the effect of environmental chemicals on mast cells. MCAS has nothing to do with the nose or the olfactory system; it is the effect of environmental chemicals on the mast cells in the body that trigger MCAS symptoms. If you anesthetized the olfactory system of a person with MCAS, they would still have MCAS.



I do think there could be a viral explanation to MCS, in some cases: when I caught the virus that triggered by ME/CFS, this virus caused damage to my olfactory organs, such that I completely lost my sense of smell for many years. However, intriguingly, one person who caught my virus developed some strange olfactory-psychological symptoms: they developed a complete psychological aversion to the smells of certain foods, such that they hated to be in the kitchen (or even the same house) when these foods were prepared.

Although in this person no physical symptoms were triggered by the smells of these foods, the psychological aversion to the smells was strong. So this demonstrates how viral infection can change the way the olfactory organs and/or brain interprets smells, and previously pleasant smells can suddenly become horrible. Perhaps in cases when this aversion becomes even stronger, then physical symptoms may manifest from these odors.

 

[Gingergrrl]

If you anesthetized the olfactory system of a person with MCAS, they would still have MCAS.

I agree with this part 100% and my personal diagnosis re: this issue is MCAS and not MCS. For me the #1 trigger was food, or artificial food dyes, that were ingested in a food or medication. But an IV contrast dye would be the same and my MCAS doctor told me to avoid this even if all other symptoms were gone and I was "cured" b/c it could still be lethal.

The reactions to smells, chemicals, etc, (for me) were part of the MCAS and I reacted whether I actually consciously smelled them or not. In 2015, we were moments away from having a Med-Evac helicopter take me to the hospital but I reacted to the smell of the jet fuel and was unable to board the plan and had to go by car. I desperately wanted and needed to go but the smell of the jet fuel was starting to trigger anaphylaxis.

My MCAS doctor said the smells enter through the nose and get lodged in the brain via the limbic system (I am paraphrasing and not doing him justice in my explanation). But as my MCAS reactions to food have disappeared, I am also able to tolerate smells. I still smell them, and they may trigger a basic allergic reaction or they may not, but I am no longer in danger of anaphylaxis at present.

 

[ljimbo423]

My feeling is that MCS may essentially be an olfactory phenomenon: that is to say, one mediated by the sense of smell, the olfactory system in the nose. So if your olfactory system were temporarily anesthetized, if my view is correct, your MCS would temporarily disappear.

This might also explain the studies which found that trigger smells which are masked by other smells no longer seem to provoke a physical response.



An olfactory mechanism for MCS features in the limbic kindling hypothesis of MCS.

This explanation really rings true for me. I think I have covered chemical smells with some pure orange oil air freshener I have, I love the smell of citrus fruits. As long as I couldn't smell the chemicals, I was alright.

The limbic kindling process sounds really interesting and I'm going to do more reading about it. I wonder if ongoing microglial activation, from chronic immune system stimulation, is causing microglial sensitization.

Making it possible for even very small amounts of immune stimulation, to cause them to overreact, which could cause all sorts of symptoms.

 

[Hip]

This explanation really rings true for me. I think I have covered chemical smells with some pure orange oil air freshener I have, I love the smell of citrus fruits. As long as I couldn't smell the chemicals, I was alright.

When I lost my sense of smell from the viral infection, and was looking for ways to try to repair my olfactory system, and the only medical treatment I could find was theophylline, which in the UK you can by over the counter (nevertheless, you have to be careful not to take too high a dose of theophylline). Theophylline is found in cocoa.

See this paper: Re-establishment of olfactory and taste functions

After a week or two taking theophylline 200 mg orally twice daily, I saw noticeable improvements in my lost sense of smell (though when I stopped the theophylline, some of the gains I made in recovering my olfactory sense disappeared again). So theophylline drug does seem to have a normalizing / healing effect on the olfactory system.



Thus if MCS is indeed due to dysfunction or damage to the olfactory system (perhaps from a virus, or from toxic chemical damage), which then causes normally innocuous odors to be perceived abnormally, and thereby trigger MCS symptoms, then perhaps theophylline might be a useful treatment for MCS, because if theophylline can repair the olfactory dysfunction, perhaps MCS might then disappear.

Interestingly, this study found that intranasal theophylline treatment of loss of smell was more effective, and took effect much more rapidly, than oral theophylline. They used a dose of 20 mcg of theophylline methylpropyl paraben each day in each nostril.

 

[hixxy]

Certainly someone who has MCAS could misdiagnose themselves (or be misdiagnosed) with MCS, so I agree that anyone presenting with MCS-like symptoms would want to investigate the MCAS angle, especially because there are treatments available for MCAS (H1 antihistamines, H2 antihistamines and mast cell stabilizers).

My immunlogist doesn't consider MCS and MCAS as one and the same but many people with MCAS go on to develop MCS as an aspect of their disease in much the same way as people with ME/CFS go on to develop MCS over time. He also says that all people with MCS have mast cell dysfunction but it seems to be in a slightly different way to people with MCAS alone. He says this is related to malfunction of nociceptive TRP (calcium) channels. He also treats all MCS patients regardless of whether they also have more "typical" MCAS symptoms with mast cell stabilisers due to their action on calcium channels.

My feeling is that MCS may essentially be an olfactory phenomenon: that is to say, one mediated by the sense of smell, the olfactory system in the nose. So if your olfactory system were temporarily anesthetized, if my view is correct, your MCS would temporarily disappear.

Not at all. Olfactory malfunction is entirely non-essential for diagnosis of MCS. Many patients go for years in the early stages reacting to chemicals without realising it (myself included) before the olfactory dysfunction starts. Some people never develop the olfactory dysfunction although admittedly they are a minority.

Such an olfactory mechanism for MCS would sharply contrast with the mechanism for MCAS, which is due to the effect of environmental chemicals on mast cells. MCAS has nothing to do with the nose or the olfactory system;

The effect is of chemicals on TRP (calcium) channels located on mast cells. These channels active like a trigger for mast cell degranulation. How would MCAS not have anything to do with the nose? It's one of the primary affected organs. Find me one person with MCAS that has never had nose/sinus symptoms. Nasal sprays are very commonly prescribed and often the most effective ones happen to have calcium channel blocking activity such as olopatadine, azelastine and cromoglicic acid.



MCS has way bigger problems with lack of research than even ME/CFS so I find it really offensive that you of all people (a person with ME) would take this kind of stance. Pre-rituximab and a few recent studies a person could have dissected research into ME/CFS in much the same way you are doing here and that's despite there being a lot more biological research into ME/CFS than MCS (pathetic as that may seem). In much the same way as it was difficult to build a biological case for ME/CFS in the past it continues to be so for MCS without research.

Some articles:

https://www.ncbi.nlm.nih.gov/pubmed/26613326
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735846/
https://aacijournal.biomedcentral.com/articles/10.1186/s13223-015-0074-0

There's likely more but I don't keep a list and I can't be bothered searching.

 

[Hip]

My immunlogist doesn't consider MCS and MCAS as one and the same but many people with MCAS go on to develop MCS as an aspect of their disease in much the same way as people with ME/CFS go on to develop MCS over time.

Can I ask, how does your immunologist differentiate between symptoms caused by MCAS, and symptoms caused by MCS?

How would MCAS not have anything to do with the nose? It's one of the primary affected organs.

I was saying that the mechanism of MCAS has nothing to do with the olfactory system or nose. The mechanism of MCAS involves factors such as environmental chemicals, drugs, extreme temperatures, friction or pressure on the skin, etc, triggering mast cell degranulation.

Sure, the symptoms of MCAS can appear in the nose, since mast cells are found in the nasal mucous membranes. Any organ containing mast cells can manifest MCAS symptoms.

My MCAS doctor said the smells enter through the nose and get lodged in the brain via the limbic system (I am paraphrasing and not doing him justice in my explanation).

Could your doctor have been referring to MCS rather than MCAS? I could not find anything online about MCAS involving the olfactory system or limbic system.

I don't know much about MCAS, but I would guess that the environmental chemicals that trigger mast cell degranulation, and thus the MCAS symptoms, would mainly enter the bloodstream via the lungs. That is to say, as you breathe in these chemicals, they are absorbed into your bloodstream in your lungs, and then these chemicals circulate via the bloodstream to the mast cells located in various organs in the body, where they trigger mast cell degranulation and MCAS symptoms in those organs.

 

[ladycatlover]

Around 20 years ago I was involved in gathering information on MCS (work experience while doing part time BSc Applied Psychology degree that I got too ill to finish). Somewhere in the loft I still have a box full of scientific papers on MCS from back then.

The information I found most interesting though is contained in Ashford and Miller's book, Chemical Exposures: Low Levels and High Stakes. I was fortunate enough to hear Nicholas Ashford speak at a meeting in London (and he was kind enough to sign my copy of the book ). He spoke about a new paradigm for such illness as ME/CFS, MCS, Fibro, OP poisoning, GWS. He really gave me a sense of hope. 20 years on I wish more people had listened to him!

You might be interested to read the paper that followed. Not what I would really have hoped for, but better than it might have been. Maybe. Ah well.....

 

[Gingergrrl]

My immunlogist doesn't consider MCS and MCAS as one and the same

Mine does not consider them to be the same either and if my earlier explanation sounded that way, then I did not explain it well which is my fault.

mast cell stabilisers due to their action on calcium channels.

Can you explain that part? The mast cell stabilizer, Ketotefin, was the miracle medication for me (pre IVIG) and I have an autoantibody that attacks the calcium channel but I am unclear re: the connection and my MCAS doc has never mentioned one (but he knows that I have this autoantibody). I wish I was smarter so I could solve this (this is my dream but it will never occur).

Find me one person with MCAS that has never had nose/sinus symptoms.

I do not have any nose or sinus problems in my life but I had MCAS to the level it almost killed me in 2015. The worst reaction was to Yellow #5 dye (Tartrazine) in a candy but it had no smell. I have never had a sinus infection or issue in my whole life (but my lungs and breathing strength are very weak). I think I must be an anomaly even amongst MCAS patients if they all have sinus issues? I literally had no idea!

I was saying that the mechanism of MCAS has nothing to do with the olfactory system or nose.

I think we agree on that part (or at least in my case) the mechanism was ingesting food or dyes that triggered mast cell degranulation. But at my worst, smells could trigger it as well.

 

[HowToEscape?]

.........

Next experience was an encounter with a new duvet set. It was put on my bed and didn't it smell!, I assume of formaldehyde. I again,unexpectedly,, had a severe reaction. This time I realised that my bedding was making me ill. Some years later that duvet is still wrapped in plastic, hidden away, still smelling of chemicals.
..,,,,,

I completely disagree with Wessley. MCS is very real and one reacts without being able to detect an odor.

If you can hang that duvet cover out in the sun for a few days, moving it inside at night of course, that should cook out whatever noxious substances well enough so that you can use it. Of course you need a spot where you can hang it out in direct sun. If no, a couple hours in the dryer on low heat should do almost as well.
Might not want to go near it if you're feeling really sick tho.

 

[hixxy]

Mine does not consider them to be the same either and if my earlier explanation sounded that way, then I did not explain it well which is my fault.

MCAS certainly seems to be able to trigger MCS in susceptible individuals though.

Can you explain that part? The mast cell stabilizer, Ketotefin, was the miracle medication for me (pre IVIG) and I have an autoantibody that attacks the calcium channel but I am unclear re: the connection and my MCAS doc has never mentioned one (but he knows that I have this autoantibody). I wish I was smarter so I could solve this (this is my dream but it will never occur).

Unless the autoantibody is against one of the TRP channels (there seem to be many involved in mast cell regulation and drug mast cell stabilising activity (including TRPA1, TRPV1 and multiple of the TRPM types) it might not be relevant to to MCAS. It's also possible that non TRP calcium channels are involved but I haven't seen any research saying as much.

 

[Gingergrrl]

MCAS certainly seems to be able to trigger MCS in susceptible individuals though.

I totally agree and so would my MCAS doc.

Unless the autoantibody is against one of the TRP channels (there seem to be many involved in mast cell regulation and drug mast cell stabilising activity (including TRPA1, TRPV1 and multiple of the TRPM types) it might not be relevant to to MCAS.

Mine is a VGCC (voltage gated calcium channel) autoantibody so I assume it is not "TRP" and is something unrelated and just a weird coincidence?

 

[hixxy]

Mine is a VGCC (voltage gated calcium channel) autoantibody so I assume it is not "TRP" and is something unrelated and just a weird coincidence?

The transient receptor potential Ca2+ channel (TRP-CC) family (TC# 1.A.4) is a member of the voltage-gated ion channel (VIC) superfamily and consists of cation channels conserved from worms to humans.[1]

https://en.wikipedia.org/wiki/Transient_receptor_potential_calcium_channel_family

So TRP is one subtype of VGCC.

 

[Gingergrrl]

So TRP is one subtype of VGCC.

I read your link but don't understand it. Am going to post it in my calcium autoantibody group to see if anyone can explain it to me so I don't take this thread off track. There must be a connection since IVIG put my MCAS into remission and the mechanism of IVIG was to lower my autoantibodies. But that is all I know!

ETA: from your post above it sounds like Cromolyn/Gastrochrom is a calcium channel blocker and I did HORRIBLE with this medication. Is Ketotefin also a calcium channel blocker?

 

[HowToEscape?]

Countrygirl, that was horrific.

I did not understand why the whole family became sick with severe flulike symptoms after the house was sprayed. They should have moved us out first. The men wore no protection so l thought it was safe. Wrong.

I was the worst and was having blackouts and vomiting and we were back and forwards to A&E with our nine year old, regularly late at night with supposed asthma attacks. He was not responding as he should to nebulisation so they said it was psychogenic. I was also having breathing problems but the GP did no investigations.

We did not know it was the spraying of Carbamate that had made us ill. We just thought it was the stress of a difficult move. We tried to join in with the sheep farmers action but legal aid was removed and none of us received compensation. My husband and sons after they grew up have never worked.

I think that they began to vacate during spraying after that.

And spoiled Americans (here) are constantly pointing to Europe and to Britain's NHS, wailing that we need to do things the British and European way.