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

[justy]

The fact that sham exposures caused severe physical responses on the face of it seems like evidence for psychological factors playing a role in MCS.

I would really want to know what these 'sham' exposures involved. When testing for MCS symptoms in people you would need to have an extremely well controlled environment - a super clean room, anyone coming into the room would have to have no scented products on them or their clothes (near impossible in the general population). Masking smells can also cause issues so completely pointless. My main question remains - what is a 'sham exposure'? Finally IF MCS is really MCAS misdiagnosed, then we know that MCAS reactions or any reaction mediated by mast cells will not always be the same to the same substance - it can depend on so many other factors - such as stress, heat, other exposure that day etc.

But isn't mast cell activation syndrome (MCAS) different to multiple chemical sensitivity (MCS), even though there is a similarity of symptoms?

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.

 

[Jonathan Edwards]

I think Wessely may be mostly right here. The pity is that he may not see the irony of the sentence:

'Blinding was inadequate in most studies. '

Perhaps he should consider that patients only react positively to stimuli like CBT and GET if they have received a newsletter telling them they are the best treatments.

I would also suggest changing another sentence to: Considerable evidence shows that many (but not all) diagnoses of MCS are in reality misdiagnoses of other, often fairly straightforward, conditions such as chronic fatigue syndrome/ME.

Mast cell activation syndrome (MCAS) is I think a well established condition. But I agree with Wessely that multiple chemical sensitivity (MCS) is a term mostly used by private alternative practitioners. I have had experiences with patients who been to places like Brakespear Hospital who have been given this sort of diagnosis and lost tens of thousands of pounds while their real condition has deteriorated to the extent of being untreatable.

The study Wessely quotes actually gives pretty good evidence that responses to chemical stimuli are sometimes due to beliefs about them and sometimes not (as in the nose clip studies). Both situations apply and that is what we should expect because we know we are highly suggestible. The problem is that Wessely's presentation makes it sound as if it is all psychological. In which case he should have no difficulty in understanding that the results of the PACE trial are probably 'all psychological'.

 

[Jonathan Edwards]

My main question remains - what is a 'sham exposure'?

I don't think there is any reason to be sceptical about that Justy. 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. And that should be absolutely no surprise.

 

[justy]

I don't think there is any reason to be sceptical about that Justy. 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. And that should be absolutely no surprise.

I'm not being sceptical, I genuinely want to know what a sham exposure is. 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. Especially if we can see that MCS is actually MCAS just misdiagnosed as most physicians in the UK and elsewhere know nothing about MCAS.

Furthermore some people with MCAS will appear to have an adverse event after exposure to substance A on one day, but not on another, and this depends on how much exposure to other substances they have had around the same time. Kind of like a bucket of histamine, which will overflow on days where you are stressed, hot and tired and ate some cheese, but wont overflow on days you have stuck to your diet, not been running around doing things and the weather was cool. So if some patients with MCS actually have MCAS then this effect may have been happening to them on that particular day. Their approach is just simplistic.

I agree that a lot of people get given the junk diagnosis of MCS - especially at private allergy clinics. I was also told this at a reputable St Johns Wood private clinic when I was around 10 - before I developed ME and my mother was told to o all sorts of diets and that desensitisation' costing thousands of pounds would be necessary. Luckily for me we couldn't afford it.

Two years ago I was finally diagnosed with MCAS, after symptoms finally continued to stpe up and worse, as they often do without treatment.

 

[Jennifer J]

Simon Wessely may have got it wrong about ME/CFS being a psychogenic illness, but is it safe just on those grounds to discount the idea that multiple chemical sensitivity may involve psychological factors?

I really don't know much about MCS, and have not experienced it myself; however, in the MCS review paper referred to in the above article, they say this:

Well is there anyone here that might be competent enough to perform a review?

This is the paper that found 20% of MCS patients showed positive responses whether provoked with active or sham substances. The full version can be found on Sci-Hub.


Also of interest: the review says:

Olfactory masking is where you add a second odor to mask the odor/chemical you are testing, so that the person being tested cannot recognize the odor/chemical.

So for some reason, olfactory masking seems to obliterate the chemical sensitivity.

(Edit: Oh, gosh, it took me a long time to write this and now that I posted this I see that a lot of other people have posted that I haven't read their comments.)

It seems that research and many people who don't have MCS do to others who have it, what research and most people who do not have ME/CFS have done to people with ME/CFS since the beginning. There's so much I can say about what you wrote but I'm not up for it and I struggle to have the best words to try to get what I'm trying to say across as well as having the energy to get the examples and research.

I'm very tired and foggy right now so please excuse any of my redundancies.

We don't understand all of this well enough or has there been enough research and there is definitely stigma involved. There's many things I've read about this that parallels how ME/CFS has been viewed, treated, and researched, also women's health, and other discussions we have here on the forum. Even with the research that you state I think we don't know enough about how all these mechanisms work to draw accurate conclusions and science doesn't know all the mechanisms that exist anyways. 20% doesn't make it a psychological condition or psychological involvement for everyone else who has it, and science isn't as advance in understanding all that is involved in this at this point in time.

I think it's complex like ME/CFS is and perhaps too there's an underlying thing yet to be discovered about the body and how this works. I also think that science isn't to the point that it has enough knowledge regarding this so the conclusions from studies are with what knowledge we have. I really question these psychological conclusions being drawn and when they made to apply to the majority who have this. I've experienced, and others who have this, too much that points to something is going on medically not psychologically. I'm hoping for major discoveries for this in the future, too, as we do and are beginning to see happen with ME/CFS.

I can write a lot more examples and share research of what I know about this but can't get into this more. I really need and want to use my energy on other things. I just hate to see people with MCS being labelled that something is up with their psychology. This needs lots of good medical research, advancements in science, and cures or treatments like ME/CFS does.

 

[alex3619]

sham exposures

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

PS If by sham they mean fake exposure that is a different thing. I would have to read the full papers to be sure of what is going on, and I don't have the time right now.

 

[alex3619]

What's next, lupus being imaginary too?

That is what the same kinds of doctors used to claim. Lupus is one of a great many diseases and disorders which were claimed to be psychogenic. Then the science advances and those claims go away. Instead they have new claims to make.

 

[Jonathan Edwards]

I'm not being sceptical, I genuinely want to know what a sham exposure is. 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?

If someone is doing this experiment they will be doing it because they are sceptical and so presumably would do exactly the same when 'releasing' the sham (i.e. doing nothing) and releasing the substance balled for sensitivity. I don't think anyone is going to be walking in or out of a room. They will be sitting by a machine with boxes with either chemical in or not and open them in turn or something like that.

 

[keenly]

Simon is not a scientist. His opinion is worthless.

 

[Jonathan Edwards]

My girlfriend suffers from MCS since she got lupus, and it's worse when the disease is in a flare, so there's a causual link. Psychological huh? What's next, lupus being imaginary too? What an idiot.

I think Wessely's point here would be that your girlfriend very likely just has lupus. Lupus includes multiple sensitivity to drugs and other chemicals. And we know why. That is not MCS, it is lupus - one of the 'straightforward conditions' that may get misdiagnosed as MCS.

 

[Jennifer J]

Mast cell activation syndrome (MCAS) is I think a well established condition. But I agree with Wessely that multiple chemical sensitivity (MCS) is a term mostly used by private alternative practitioners. I have had experiences with patients who been to places like Brakespear Hospital who have been given this sort of diagnosis and lost tens of thousands of pounds while their real condition has deteriorated to the extent of being untreatable.

Hi, @Jonathan Edwards. Curious, if you are up for saying, what medical conditions can this be so I can check into them? Thank you.

(My MCS symptoms is swelling and burning in the mouth and lips, sometimes: eyes lids swelling, fullness in side of tongue, and coughing. I have continual 24/7 chronic angioedema for the past 16 years and the sensitivity and reactions to smells and many other things started 13 years ago.)

 

[user9876]

The masking agents for 2 of the studies are vanilla and peppermint, cinnamon, aniseed. The last 3 alone are loaded with salicylates but salicylates aside all mint is a common trigger for people with MCS. Vanilla certainly can be a trigger but less common. I wonder how pure the vanilla was because most vanilla also contains alcohol which most certainly is a trigger for most people with MCS. I bet these researchers are considering MCS to be multiple synthetic chemical sensitivities and think that anything non-synthetic should be okay as a mask, but that is certainly not the case. These chosen masking agents are a big fail, especially the latter 3.

I have no idea what the masking agent is in the third study as it only says FM.

Maybe an interesting study would be to record which chemicals cause a reaction and perhaps test for consistency.

But there will be issues with subjective reports that is quite natural you need to compare across groups. So the report that @Hip mentions:

One of these studies used a forced-choice method of provocation and demonstrated that 20% of chemically sensitive participants showed positive responses whether provoked with active or sham substances.

is meaningless. How does this compare against the non-sham substances. I suspect there are also issues of timescales with reports and follow ups. Are reactions always immediate. Basically they demonstrate people flinch when expecting pain.

 

[justy]

(My MCS symptoms is swelling and burning in the mouth and lips, sometimes: eyes lids swelling, fullness in side of tongue, and coughing. I have continual 24/7 chronic angioedema for the past 16 years and the sensitivity and reactions to smells and many other things started 13 years ago.)

Have you seen a mast cell specialist? someone who can diagnose MCAS and rule out Mastocytosis? Its the most obvious first place to look for answers. I highly recommend Dr Afrins book - Never Bet Against Occam

 

[Large Donner]

The conclusions were that "persons with MCS do react to chemical challenges: however, these responses occur when they can discern differences between active and sham substances, suggesting that the mechanism of action is not specific to the chemical itself, and might be related to expectations and beliefs"

This is quite confusing how else would someone react to a chemical that affects them unless it wasn't a sham substance? Is he saying people "reacted" to sham substances? ....and what exactly does that mean. If someone showed some amount of initial anxiety when told that a substance may or may not be harmful to them is that the same as them having false reaction beliefs in general.

Imagine someone who has anaphylactic shocks being told close your eyes we are going to put something in your mouth it may or may not be a peanut.

responses occur when they can discern differences between active and sham substances

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".


"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".

Judging by the PACE study standards none of the above possibilities would surprise me in how he draws these conclusions.

 

[Large Donner]

I think Wessely's point here would be that your girlfriend very likely just has lupus. Lupus includes multiple sensitivity to drugs and other chemicals. And we know why. That is not MCS, it is lupus - one of the 'straightforward conditions' that may get misdiagnosed as MCS.

Hmm. Im pretty sure Wessely doesnt advocate for Lupus.

I think Wesselys point would be that she has false illness beliefs, he can tell just by looking at people you know. No tests required, in fact tests are damaging to the recovery progress in false illness beliefs that's why they must not be done.

But the real point is does it really matter in essence if something is called MCS or Lupus if the symptoms have an objective mechanism rather just saying the symptoms are false illness beliefs "cos I say so".

Wessely does not publish papers proclaiming "all the flaws in spurious labels like MCS CFS BDD", pointing out that people are going undiagnosed with Lupus etc. His raison d'etre is to diminish all symptoms in all illnesses down to a BPS model as much as he can possibly get away with in each one.

That is not MCS, it is lupus - one of the 'straightforward conditions' that may get misdiagnosed as MCS

So the thing is does Wessely comment on or has he published studies on people with Lupus who have multiple sensitivity to drugs and other chemicals? Does he use them as controls in his studies or comments or does he even understand the notion that people could have multiple sensitivity to drugs and other chemicals but still not have a confirmed diagnostic label such as Lupus that explains the symptoms?

 

[brenda]

While l was staying in what was Eastern Germany, about 15 years ago, l found that MCS was commonly understood amongst a lot of people. I spoke to an ex nurse who had developed the condition due to a toxic exposure at work, and was thereafter unable to do her job anymore. She told me that a lot of eastern Germans had the condition because of being poisoned at the chemical war weapon factories. It is a recognised medical condition there.

I found that people were in general, not as ignorant as British over many things.
I certainly had no problems asking people to remove air fresheners in cars. They would nod knowingly and remove them.

Fortunately l am nowhere near as sensitive nowadays since cleaning up my home and diet, removing pesticides and chemicals so that l can cope with small exposures. One day when l was still suffering, l had to quickly leave Lidl and found out later that they were selling bottles of pesticide. It was pesticide that damaged my body's ability to deal with chemicals. Even an unopened bottle affected me badly without even being aware of it.

 

[Countrygirl]

While l was staying in what was Eastern Germany, about 15 years ago, l found that MCS was commonly understood amongst a lot of people. I spoke to an ex nurse who had developed the condition due to a toxic exposure at work, and was thereafter unable to do her job anymore. She told me that a lot of eastern Germans had the condition because of being poisoned at the chemical war weapon factories. It is a recognised medical condition there.

I found that people were in general, not as ignorant as British over many things.
I certainly had no problems asking people to remove air fresheners in cars. They would nod knowingly and remove them.

Fortunately l am nowhere near as sensitive nowadays since cleaning up my home and diet, removing pesticides and chemicals so that l can cope with small exposures. One day when l was still suffering, l had to quickly leave Lidl and found out later that they were selling bottles of pesticide. It was pesticide that damaged my body's ability to deal with chemicals. Even an unopened bottle affected me badly without even being aware of it.

Thanks for sharing that interesting information @brenda .

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? Do those with 'just' a viral trigger or persistent infection not have such a reaction?. It is certainly real and not a product of our imaginations. I know our sheep-dip flu farmers here who have a form of ME also react badly to toxins that they previously could tolerate. We are certainly very sensitive to our environments.

 

[brenda]

Thanks for sharing that interesting information @brenda .

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? Do those with 'just' a viral trigger or persistent infection not have such a reaction?. It is certainly real and not a product of our imaginations. I know our sheep-dip flu farmers here who have a form of ME also react badly to toxins that they previously could tolerate. We are certainly very sensitive to our environments.

Yes and many people are not aware they have had exposure. It is denied by the authorities as l guess the world would go bankrupt if the truth was known. I am in a group of sheep dip farmers who had their lives ruined by allegedly safe OP's. Mine was due to a local authority treating a house l had just moved into when it should have been classified as unhabitable. The whole family became very sick but l was the only one who went on to get MCS because l already had ME.

 

[Countrygirl]

Yes and many people are not aware they have had exposure. It is denied by the authorities as l guess the world would go bankrupt if the truth was known. I am in a group of sheep dip farmers who had their lives ruined by allegedly safe OP's. Mine was due to a local authority treating a house l had just moved into when it should have been classified as unhabitable. The whole family became very sick but l was the only one who went on to get MCS because l already had ME.

After having a severe infection in 1972 and developing post-viral syndrome and loss of the ability to understand speech after it ( to be highly technical again) fried my brain and left me struggling to function for years, I moved into a timber framed house that was newly built. I knew nothing about this at the time but it was soaked in pentochlorophenal, lindane, dieldrin, solvents and possibly an organophosphate to preserve it against pests. As soon as I moved in I became very ill. I seemed to be developing flu but the sicker I became the lower my temperature fell (it remained at about 95 degrees F). I also developed horrible symptoms which seemed bizarre to me, but I know know they were neurological. I became too sick to be able to get to my work but could obtain no diagnosis. I became increasingly ill, but I didn't know why. It was a very horrible time as, my doctor was most unpleasant about my illness and I Iost my job as I was too sick to climb the stairs to my classroom and had to rest in the ladies loo to get the strength to walk the corridors. I eventually ended up in a nursing home like my neighbour.

However, although I didn't know it at the time, my neighbours who lived in the same type of house and had also had their houses sprayed were also sick. My next door neighbour died at aged 30 with a 'mysterious- immune disease', my neighbour the other side of me also aged 30 developed an immune condition and had to retire from work, while the person who lived opposite me, a young woman, like me, ended up in a nursing home with a diagnosis of ME. A cousin who handled the sprayed timber on a regular basis (he had been the manager of the company who built the houses and sprayed the timber) became ill too and died and the company, who then closed down admitted liability for his death.

A few years ago I discovered that the treatment was quietly withdrawn from the market as it had caused so much sickness and a number of deaths throughout the UK. The London Hazard's Centre wrote a book on their investigations into the timber pesticide treatment and I was fascinated to read the case histories which described what we would consider to be cases of ME.

 

[Large Donner]

I eventually ended up in a nursing home like my neighbour.

However, although I didn't know it at the time, my neighbours who lived in the same type of house and had also had their houses sprayed were also sick. My next door neighbour died at aged 30 with a 'mysterious- immune disease', my neighbour the other side of me also aged 30 developed an immune condition and had to retire from work, while the person who lived opposite me, a young woman, like me, ended up in a nursing home with a diagnosis of ME. A cousin who handled the sprayed timber on a regular basis (he had been the manager of the company who built the houses and sprayed the timber) became ill too and died and the company, who then closed down admitted liability for his death.

A few years ago I discovered that the treatment was quietly withdrawn from the market as it had caused so much sickness and a number of deaths throughout the UK. The London Hazard's Centre wrote a book on their investigations into the timber pesticide treatment and I was fascinated to read the case histories which described what we would consider to be cases of ME.

Wow. Calling Wessely for an explanation...............!!!! How does this set of circumstances stand up to his beliefs around MCS or whatever he wants to call the set of symptoms?