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TOPIC: Survey of MCS

Survey of MCS 4 years 6 months ago #7

  • Kiahjo
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Good discussion here. I'm a psychotherapist with Mayo Clinic. I have MCS and ES. I share Jodie's concerns and believe they are accurate. Like the history of tobacco, I think the truth will eventually be obvious but perhaps too late. And it will go kicking and screaming by big money companies. Re: the brain retraining programs - The recent research on central sensitization is actually going to dispel the "all in your head" myths, not perpetuate them. Eventually. Whether it's chronic fatigue, fibro, tmj, IBS, MCS, migraines, etc, they are getting closer to understanding that it is a brain related dysregulation of the central nervous system that sensitizes certain people. And as Maff said - there is no separation of mind and body. I would guess everyone with MCS has or has had an overactive limbic system because it is very much like living in a war zone, where danger can appear at any time, and our brain knows it and stays alert for it. I work with war vets and PTSD. is PTSD a psychiatric disorder? Yes. Is it a physical disorder of a dysregulated limbic system based on real danger? Yes. And MCS is based on real dangers that the brain picks up on much more quickly than most others. Therefore, working with the brain and limbic system becomes necessary but not always sufficient. And believe me, I know first hand how difficult it is to get even doctors to understand and validate MCS. I still have not found a doctor I feel comfortable with or that really understands my condition and it is a very frustrating and disheartening issue. And I work for a major system. The brain retraining programs have helped my MCS significantly (interestingly, though, not my electrical sensitivity). At the same time, the issue is for people to understand that if WE are triggered by a chemical, everyone should take note and thank us for being on the front lines. Thank you for being out there and knowing. When my MCS was at its worst, I said "If I could choose one year of life free of this vs. a long life with this, I'd take the one year. No question."
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Survey of MCS 4 years 6 months ago #8

  • Jodie
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Hi Kiahjo - would that mean that others with chronic debilitating illnesses which are somewhat unpredictable / affected by environment & can be devastating (- eg asthma, dangerous allergies, mast cell disorders, Porphyria, ..even maybe really disfiguring skin diseases like psoraisis & eczema) , will also suffer from limbic kindling , since those individuals are also living with the stress that the environment could kick off an attack? This is getting so interesting. But I guess once the research firms this up then drugs will be developed to block the CNS overdrive - that's how it will be dealt with. Not by cutting back on poisonous pollution.
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Survey of MCS 4 years 6 months ago #9

  • Maff
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Definitely agree that in the world of conventional medicine as a whole mind and body are still seen and treated as separate Jodie but I've seen this begin to change and it is gathering momentum. An example would be exercise recommended as a treatment for mild to moderate depression. It's well established now that regular moderate physical activity, among other effects, increases endorphins, regulates levels of immune cells and cytokines/chemokines, hormones and other signalling chemicals - all of which bind to receptors in the brain and nervous system and ultimately improve mood.

The research world however is way ahead in understanding how mind and body operate as a single system and there are countless medical researchers who understand the two-way communications between them. The researchers know diagnosis and treatment of disease needs to account for both body and mind/brain - but it always takes time for things like this to filter down to the doctor's office - it's quite a paradigm shift after all.

I have to say I'm surprised you haven't been offered CBT or referral to a psychologist who might use relaxation techniques, meditation or mindfulness-based cognitive behavioural therapy (MCBT). I've been through the lot and much of it has been helpful to some degree at least, particularly visits to a double PhD psychologist who used all of the above with me along with more traditional talk therapy. All practicing psychologists in the UK at least, must hold a PhD in the subject so they're far more familiar with current research than medical doctors re: mind-body connection and frankly are far more academically qualified.

I think Freud's theories were so radical that people at the time couldn't help but take notice! Theories often become established simply by the law of 'he who shouts loudest'!
If you are going through hell, keep going - Winston Churchill
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Survey of MCS 4 years 6 months ago #10

  • Maff
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Thank you for joining in the discussion Kiahjo, it's great to have someone so qualified contributing. You're doing fantastically well to live with MCS and ES while being employed at such a prestigious institution, keep fighting, we're all here to support each other. It makes me glad to know that war vets suffering from PTSD (a condition that must be truly horrific) have someone like you who truly understands them and their condition there to help them through.

I think the three of us here are all on the same page both re: chemical companies & environment, as well as the central sensitization / limbic kindling. My early explanation of central sensitization may not have been very clear but I was trying to make the point that you have done much more succinctly - that it actually disproves the 'all in your head' stance.

It is surely a 'canary down a coal mine' situation that is playing out with the chemical industry I believe and as you say Kiahjo, we are on the front lines. I am sorry to read that even someone in your position who is already working in a related area at the Mayo Clinic - which always seems quite forward-thinking to me - cannot find a doctor who works with MCS and ES patients. I hope this changes soon and that brain retraining and other interventions continue to help you. It pains me to read your last sentence about choosing one year free from MCS rather than a life living with it - as I am now fully recovered. For years I was housebound wearing a face mask even in the shower but this year I celebrated 10 years without a reaction. The chemical industry needs to change or be forced to change through tighter regulation of synthetic chemicals but...it is possible to recover and live normally again in spite of the world we currently live in. Stay positive!
If you are going through hell, keep going - Winston Churchill
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Survey of MCS 4 years 6 months ago #11

  • Jodie
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*have to say I'm surprised you haven't been offered CBT or referral to a psychologist who might use relaxation techniques, meditation or mindfulness-based cognitive behavioural therapy (MCBT).**<<<

Actually I'm rather grateful they didn't - it would have been the perfect excuse for certain individuals to tell me I'm crazy - which is about as sophisticated as most ppl get if anything is thought to affect your mind. As it happened, very early on a specialist told me I may have 'damaged mast cells' so I clung to that for 18yrs 'til MCAD was confirmed this year. Does this explan why Gupta did not help at all even tho I enjoyed the course? maybe.. But I am just one example of MCS being IMO a myriad different illnesses which are SO difficult to get to the bottom of. Lots of folks are now findng damaged genes to do with detoxing (23+Me has now come to the UK now btw). However I'm suspecting environmental poisoning is still at the bottom of a lot of these issues - what has damaged my mast cells? why are genes to do with detoxing getting corrupted? Many of us includng me can point to an overdose of toxic chems kicking off our symptoms.. and often chems ppl can't avoid from then on keep them symptomatic. Gupta etc might help some but I reckon it depends a lot on what kind of damage has been done in the first place.
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Survey of MCS 4 years 6 months ago #12

  • Maff
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A good point Jodie, being labelled as 'crazy' does tend to have a fair few negative consequences in life! I actually took the decision to allow myself to be diagnosed with depression / anxiety purely because it made obtaining the disability benefits I needed and deserved a whole lot less problematic. Having said that I was pushed to the top of the social housing list on the basis of MCS alone after an inspector from the council came to my home at the time and saw that I did indeed wear a carbon filter mask the entire time and there were no signs of any typical chemical products at all. I am guessing the outcome could easily have gone the other way if a less objective and open-minded council worker had made the visit!

It may well be that MCAD is the reason Gupta hasn't worked for you. Having trumpeted mind-body connection / medicine there are just some things that need more aggressive biomedical intervention. As for the link to the pathophysiology of MCS and MCAD it could be that one effect of central sensitisation, or limbic kindling, is to feed into the immune system and induce hypersensitivity and dysfunction of mast cells i.e. MCAD. The whole notion of central sensitisation is that it starts in the limbic system, which feeds into the hypothalamus and from there every system in the body is essentially disrupted and generally speaking, instructed to display hypersensitivity.

On the other hand of course, it may be entirely the other way around. Perhaps you developed MCAD for whatever reason first and then the signals went in the opposite direction and triggered limbic kindling and your symptoms of MCS. Nobody can really say for sure right now I din't think. The important thing in my opinion is the knowledge that communication goes both ways so dysfunction in the brain can cause dysfunction elsewhere in the body and vice versa.

Genetic polymorphisms are inherited, although genes can of course be switched on and off, up-regulated and down-regulated by environmental factors. I was tested myself in 2010 and I have problems with all the major genes involved with detox (methylation, various glutathione enzymes) as well as COMT - my variant of which has a positive influence on intelligence (feel free to question that!) but predisposes to an exaggerated stress response and mood disorders, according to numerous studies. In terms of MCS it is likely that we canaries are the ones with these polymorphisms that impair detoxification so the effects of chemicals on our bodies are enhanced. If the amount of chemicals the public are exposed to continues to increase however then we can infer that eventually the majority of people would end up in the MCS boat.

Gupta etc might help some but I reckon it depends a lot on what kind of damage has been done in the first place. - totally agree!
If you are going through hell, keep going - Winston Churchill
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