National Institute of Public Health Québec (Institut national de santé publique du Québec – INSPQ) report on MCS and responses

https://www.eleanorsteinmd.ca/interviews

Interview with the Environmental Health Association of Québec / L'Association pour la santé environnementale du Québec
- March 12, 2022
The National Institute of Public Health Québec (Institut national de santé publique du Québec – INSPQ) recently published a report on MCS concluding that anxiety and not chemical exposure is the cause of multiple chemical sensitivity (MCS). This a conclusion reached without consultation with people with lived experience, or experts in MCS.






[Recording at link]









Dr. Stein was invited to discuss questions arising from the report at the ASEQ-EHAQ (L'Association pour la santé environnementale du Québec / Environmental Health Association of Québec) Annual General Meeting on March 12, 2022. This session was recorded and the discussion is in English and French. L’enregistrement est en français et en anglais.

The English version of the summary of the report can be found here : Multiple chemical sensitivity syndrome, an integrative approach to identifying the pathophysiological mechanisms. The ASEQ-EHAQ has started an action to remove this report at: https://aseq-ehaq.ca/en/action/

To learn more, visit the bilingual websiteswww.aseq-ehaq.ca / www.EcoLivingGuide.ca / www.EnvironmentalSensitivities.com / www.ecoasisquebec.ca

 

"cough"
'These alterations are not specific to MCS. They are also reported for chronic fatigue syndrome, posttraumatic stress disorder, electromagnetic hypersensitivity, fibromyalgia, depression, somatization disorder, phobias, and panic disorder.;. All of these disorders have in common is the presence of chronic anxiety.'

 

What an odd report. Is it a Science report, or a History report?

Isn't medical science constantly reinventing aspects of itself because its history is laden with errors? Flat-out whopper mistakes? What if the old studies were biased or based on flawed inferences, etc.? Look at some cancers. At MS. Stomach ulcers. Psoriasis. Ticks and tick-borne diseases. And the studies can be as recent as you wish sometimes - look at Covid. The list is long and ignoble.

I'm not a fan of retrospectives. I've seen too many of them used to bad ends.

 

I am not sure that 'Multiple Chemical Sensitivity' is a useful term, rather than simply sensitivity to odours.

Nevertheless, reading this report summary it is clearly pure BPS make-believe. It reads as written by A BPS-BOT (operating system Chalder 10.35) the does not have the optional 'creative' software attachment so is excruciatingly predictable.

• Over the past two decades advances in neuroscience and the availability of new techniques for measuring biological parameters and performing functional brain imaging have shed light on the pathophysiological mechanisms underlying MCS. These developments confirm that the psychological, biological, and social aspects of MCS are inextricably linked.

Er, no.

 

Sadly, the piece on this site is just as much make-believe.

The villains in all this are the medical professionals spinning tales on both sides of the story.

 

This is especially awful given how relevant MCAS is in Long Covid. Yet again another clearly immunological phenomenon dismissed as psychological, the one pattern that applies 100% in medicine. It's always the same formula, done without any actual effort:

1. Dunno = anxiety x millions
2. Researchers trawl medical records
3. "Wow, so much anxiety in those records"
4. QED

What it is exactly remains to be shown, but anxiety has pretty much become a clownish concept at this point, it's the medical equivalent of the boy who cried wolf, except the villagers never stopped falling for it and in fact a whole industry has been built around wolf sightings, with wolf expeditions where people can pay to have their photo taken next to a sighting of a wolf and people come from afar to see the people who "saw" wolves, just like the boy described.

 

The machine can see thoughts and other people. That's how powerful the machine is, it can read thoughts and see other people. It can see everything. Don't look, though, you won't see, only we do, just trust us: don't look.

 

Do you mean MCAS or MCS? The two are unrelated. I don't think there is good reason to think MCS is immunological. And I am not sure why either should be relevant to LC?

We want to get the detail right here.

 

I don't know if it is relevant or not but I remember that in its interim LC guidance the CDC listed MCAS as one of the syndromes long covid can be similar to:

Patients with post-COVID conditions may share some of the symptoms that occur in patients who experience myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, post-treatment Lyme disease syndrome, dysautonomia, and mast cell activation syndrome. Symptom management approaches that have been helpful for these disorders may also benefit some patients with post-COVID conditions (e.g., activity management (pacing) for post-exertional malaise).
​

I also noticed that some long haulers got a MCAS diagnosis and that is why a lot of them take antihistamines. So this is already out there in the LC community, similarly to ME/CFS, POTS and HEDS.

I also have to admit that I don't know enough about MCAS and my impression is that there is even less research behind it than behind ME/CFS.

 

I have spent some time on several occasions trying to get to grips with what MCAS might actually be. The literature is dominated by a single physician called Afrin who does not come across at all well in videos of presentations. The whole concept seems ill-defined and pretty unhelpful.

For sure there are clinical problems due to mast cell activation, including bee stings and asthma, but MCAS looks to me like a disease name made up for the sake of a disease name. I think it vanishingly unlikely that the sort of symptoms PWME suffer from have anything to do with mast cells.

The statement from the CDC to me just indicates how poorly thought out statements from organisations like CDC often are. It is cut and pasted from somewhere else produced by another group who have not thought things out, to my mind.

 

Same villains, I suspect.

 

I'm not sure about that. And the people behind that report don't care either, but for a different reason. To them it's all psychosocial blah-blah-blah, they lump us all together anyway.

Frankly it seems similar to the whole CFS and ME, one is observational, some people are very sensitive to smells, while another is pathological, it's the mast cells. And on a spectrum and fluctuating to boot. Whether right or wrong, it's still essentially observational, it's happening, the rest is a complex scientific problem that patients can't be expected to solve. Just as LC was supposed to be properly defined and separated, and it just never happened because it's too complex to deal with the current level of medical knowledge (and the damn BPS ideology).

It's clearly a common end-point from infections. The same way some people are experiencing severe GI symptoms after Covid, while others have strokes and some people have only loss of smell. If it wasn't for the patient community connecting the dots, no one would. Not that it's happening much outside the patient community, those dots aren't connecting themselves spontaneously.

They all seem to be symptom clusters, without defined borders. I didn't have the dreadful characteristic fatigue of ME until many years. Did I not have ME at first, then develop it? Probably not, and I'm not sure it matters much (other than making this a mind-fuckingly difficult problem to solve anyway).

For sure MCS is also common in ME, relatively anyway. I definitely have it to some degree, if it's defined as symptoms triggered or worsened by some smells, smells that feel like they're overwhelming, like being in a vat of their pure form. I'm still reading many comments every day in LC forums, going on 2 years now. MCAS is very common in LC, either as a separate thing, or a part of an underlying pathology is pretty much the whole challenge here.

But absolutely those problems are common in LC and it looks especially bad to faceplant this poorly. Again. And again. Immunology is just way more complex than it's already understood to be, far far more.

 

This kind of stuff contributes to mistrust of health care professionals. Since they are on it and planning on offering a MCS clinic, I worry about the kind of treatments that they will offer- Relaxation, meditation, psychiatric care, brain retraining and all that jazz.

The fact that I do not have to tell doctors about my own sensitivities, because it is not a major problem in my disease is a privilege and I know others do not have that luxury. The fact that this kind of "integrative care" is happening more and more here in Canada is deeply worrisome.

 

I don't understand this. As far as I know MCS and MCAS are in no way alternative names like ME and CFS. They are two quite different problems. MCAS has nothing to do with odour sensitivity as far as I am aware. The acronyms have just got confused by site a lot of patients I suspect.

 

Looking at the patient support group URLs I can see that confusion is widespread but this looks like the EDS situation where the support group literature often bears no relation to real medicine.

It seems a bit more like the CFIDS organisation that believes that ME is an immunodeficiency disease.

 

What seems to me particularly unfortunate is that the fringe physicians are generating all these pseudoscientific theories about things like MCS and that allows the BPS people to say that all the modern neurological research shows that we understand all this complicated biology and its real but is mixed in with psychology which is where we come in.

If the fringe physicians stopped pretending we understood anything about these conditions the BPS story would fall apart because there would be no B to add the PS to. They would have to say that it is all psychological - and of course that would be Cartesian dualism so they couldn't do that. The fringe physicians are selling patients down the river by allowing this to go on.

 

it's fantastic money for them. And their patients love them. And they love their patients because of the money.

Edit to add: they are constantly on the look out to offer new treatments, the kind that is not typical or mainstream. Great and unlimited source of income.