– MCS 101.7: Treatment

MCS 101 – Part 7

Treating MCS

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INTRODUCTION

Not long ago, a beloved relative expressed surprise that I was not yet well, and said she thought “time” would heal my condition. Sorry to say that time alone does not heal MCS. Like many diseases, including the liver disease she had and for which she underwent a liver transplant, if MCS is not treated effectively, time only makes it worse as the body ages and tires and becomes increasingly unable to deal with the toxic overload.

MCS is a crushingly difficult condition to deal with on a daily basis, especially without the social supports that are medically necessary. Finding and/or modifying one’s home to be safe, the sine qua non of achieving stability and improvement, are extremely difficult and/or incredibly expensive, and not infrequently just impossible – which is why people end up living in trailers and cars and balconies and tents. The most ordinary of tasks – laundry, cooking, cleaning, shopping – become dangerous, massively more time- consuming and much more expensive. Organic food, a must for almost all MCSers, is generally twice as expensive as food farmed with chemicals. Treatments are so expensive when shouldered individually that most MSCers cannot pay for enough of them to make significant progress. Moreover, treatments are appallingly hard to access if one’s very mobility is limited and no expert physicians are available within a driveable radius – which is the case in the vast majority of communities.

The health care system’s denial of MCS produces and reinforces popular ignorance. Though increasingly almost everyone knows of some friend or family member who has the condition, most people are also completely ignorant of the causes of the condition, of how it’s treated, and why MCSers need the accommodation of chemical and fragrance free services and venues. So most people with full-blown MCS suffer significant degrees of impoverishment, isolation and stigmatization. And those who are sick but still functional to some degree, pay a huge price in fatigue and ill-health which many bear privately, if not in the closet. Because even as the incidence of MCS grows inexorably with chemical pollution, it remains, due to this ignorance, both stigmatized and falsified.

So it may come as a surprise that though existing treatments and services for people with MCS are very sparse, hard to come by and, in most jurisdictions, uninsured, MCS has been recognized for many years by the United States government and many US states, as well as a variety of other national governments as an “official” disability. Canada has finally moved into the21st century by following suit – in 2007 — and this is true of the provinces of Nova Scotia and Ontario as well. Other disabilities have an array of medical, health support and residential services in our communities – never enough, granted, but these networks do exist and can be built upon. But not so – not at all – for MCS. This must change. As with other disabilities and illness, our societies and our governments must ensure that the understanding and recognition of MCS within human rights departments — including the medical understanding implied in their recognition – is reflected in appropriate and sufficient medical, public health, housing and social services, as well as in public policy ensuring chemically safe environments. Consider, for example, that any person with acute MCS risks his or her life in being admitted to most hospitals for a heart attack, for example, because the toxic chemicals, the laundry and grooming products of staff and patients and the cleaning products used could easily finish them off. So when we speak of “treatment”, we are speaking of an integrated system of care with social and medical levels, and of accommodation policies.

Let’s look at some of the key components:

THE SOCIAL PROGRAM - COMPETENT DOCTORS, TIMELY DIAGNOSES, SAFE & EFFECTIVE TREATMENT

Having competent physicians is first an issue of medical education. Individuals cannot obtain the care they need – from timely diagnosis to effective treatment unless there are physicians everywhere who know what they’re doing,

Societally speaking, untold health damage, immeasurable prolongation of suffering, countless unnecessary surgeries and premature deaths – without hyperbole, all these harms have resulted from the ignorance of MCS on the part of physicians. Well-meaning but clueless, so many of them have given the worst kind of advice to MCSers, including off-the-mark diagnoses, harmful medications, useless or harmful surgeries, exhausting referrals to equally-ignorant specialists who repeat the same cycle, refusal to support applications for disability and outright disbelief and prescription of often- dangerous psychiatric drugs. Actually, it’s impossible to tally the amount of wasted health care funds literally poured down the drain of medical incompetence vis a vis MCS. Equally, it’s mind-boggling to sum up the damage done to date by the fact that our medical schools have no adequate curriculum with respect to MCS specifically and toxic injury more generally.

So the first step to treatment is competent diagnosis, and the key step to that is health care professional education and re-education suitable for the 21^st century. This issue is important for every allied health profession, from chiropractors to physiotherapists. But its is essential for medical doctors, who are the most powerful members of the health care system, and the gatekeepers to both pharmaceuticals and most insured services. I am not yet aware of a major paradigm-shift taking place in the majority of medical schools now with respect to environmental medicine and MCS – I am not knowledgeable about medical schools in general. But I do know of a number of leading schools where issues related to environmental health and medicine form an important part of research and teaching agendas, and there is a list of very distinguished researchers, many of whom are cited in the footnotes to my articles, posted elsewhere on this site, working at less prominent but equally important academic and clinical sites. These folks are the vanguard of what must become a revolution in the practice of medicine and they are working hard within it to transform it. This is wonderful. But we cannot wait for the slow process of internal reformation within medical schools to transform the health care field – not least because of the institutional resistances I wrote about in Part 6 – System Failure. Instead, where government funds medical care, medical research and medical education, directly and indirectly, or where it simply regulates medical practice – and that’s everywhere — government must require that environmental medicine be made an integral part of the curriculum preparing health professionals for practice. (See my article, “A World Fit for Children”, in the solutions section for a longer discussion of such reform.) And government must also require all practicing physicians to undergo continuing education in this field, to stop the inadvertent harm they are doing and to teach them to recognize and treat, or at least appropriately refer, MCS and many other environmentally related illnesses.

A SAFE HOME – THE FIRST PRESCRIPTION AND KEY CONDITION FOR SUCCESSFUL TREATMENT OF MCS

A person with MCS has broken nervous and immune systems (as well as multiple other organ dysfunctions.) To heal, these systems must rest – just as a broken arm or leg must not be used until the bone has reset. If home is not chemically healthy, such rest cannot take place. Especially during the night, the time when our bodies repair themselves, these systems remain aroused (constantly in fight-or-flight mode), working, fighting, deteriorating. This is why every MCS expert in the world knows that a safe place to live is the most important and necessary condition, in effect the first prescription, for treating MCS.

The 2003 study in ENVIRONMENTAL HEALTH quoted by Christiane Tourtet in the article of hers that I have posted found that 1,000 U.S. MCS sufferers spent an average of $65,000 modifying their homes – this is not cosmetic but medical renovation and for many people it’s also the end of their savings, or the doubling of their mortgage. Yet, according to the opinions of a number of experts today, if the problem is a really serious mold infestation, many buildings cannot be remediated to a standard that is safe for MCSers, — a crucial piece of knowledge that is not known by the majority of MCSers, and is not known at all by physicians. So countless numbers of people have spent their life savings, gone bankrupt and further endangered their health in a futile effort to make a safe environment where one could not have been achieved. One Montreal doctor estimates that the average MCS person moves 7 times in an effort to find a safe place. I met many people in Dallas, including people in their twenties and thirties, who had moved many more times than that – 15, 20, 25 times. There are significant numbers of people with MCS who cannot live in any existing house, and take up residence in porcelain-lined trailers or, when too poor for this, in their cars or tents. The Canadian winter exacts a dreadful toll on such individuals. The rate of premature death and/or suicide among this group is very high. See “The New Homeless” and related pages on this site for documentation of this tragic reality.

Several policies on the importance of “safe home” follow as result of these realities – and these are similar to the kinds of specialized residential and treatment centres we have created for people with other illnesses and disabilities, but with very special attention paid to the special needs of MCSers. With an integrated system of specialized facilities, we can take care of our MCS population in a way that not only minimizes suffering, but, ultimately, radically improves health and saves society a great deal of money. Such a system ensures that instead of funds going into useless and harmful medical services, and instead of losing MSCers from the economy and gaining them as disabled dependents, funds go into helping them improve and become self-supporting again. Here are three pieces of the system that we need:

1.) MCS safe shelters to accommodate people who need to escape their homes because of acute illness or damage to their homes, and have no where else to turn. This happens to most people with full-blown MCS at various points in their lives. We need these in every sizeable community because when a person has a major MCS “crash”, they are unable to care for themselves, and need to be close to family, friends and trained caregivers for help. Such safe shelters would also refer to appropriate medical facilities, and early intervention would make a universe of difference to the whole course of an MCSer’s life afterwards. We provide shelters for battered women, we provide shelters for people in economic need, we provide shelters for people with many disabilities – we need to provide shelters to chemically sensitive people, who need them urgently.
2.) “Safe rooms” in every hospital, where chemical-free air, linens and beds are in place, where staff are fragrance-free at all times, and where MCSers can go during medical emergencies. As I noted, many MCSers cannot go to their hospital if they suspect a stroke or other medical emergency of that type, for fear of being finished off by the chemicals and fragrances in a hospital. This is a terrifying situation that can easily be fixed. In Dallas, at several hospitals near the Dallas clinic, such safe rooms exist, allowing for treatment of cardiac problems, chemotherapy, and other intensive therapies – and many lives have been saved in this way.
3.) Community housing, in every sizeable community, for people with MCS, to which people can move, or can return to from shelter or hospital. We create this type of housing as a matter of course for people with other disabilities, ranging from vision and hearing loss through developmental disabilities to physical disabilities of various kinds – not to deny the chronic need for more funds relative to need. We know that such housing increases their well-being and their ability to support themselves – we need to provide the same services to MCSers as we do to people with other disabilities, and urgently. AEHA in Ottawa has submitted a wonderful proposal for funding to Action Ottawa, an agency that distributes federal funds (in July, 2008). We are all waiting to see what it’s fate will be. Toronto resident Linda Sepp has developed a very accessible and comprehensive proposal for a template for such residences, which I hope to be able to post here soon. We know how – we just need the funds and the support.

RESIDENTIAL CLINICS FOR MCSERS – MOST EFFECTIVE, MOST ECONOMICAL

Finally, in addition the above three programs, demands for which are supported by all MCS advocacy groups, another level of care is both necessary and incredibly productive in achieving positive outcomes, both for MCSers and for society. We’ve done it before for tuberculosis and other diseases for which people needed for a time to be isolated from daily life; we do it in rehabilitation and chronic care hospitals; and we need to do it for MCS — We need to adopt a “residential clinic” model of MCS treatment to promote healing and avoid the catastrophic consequences of the current situation. Perhaps the worst advice MCSers get from ignorant practitioners – and they still get it every day, year in and year out – is just to “carry on” and “push on the through” and “don’t consider yourself sick” – advice that we all follow, many of us for decades, and then fall into ever more severe levels of illness, living in unsafe houses and trying to keep on with work and family responsibilities until we completely collapse. In fact, this is how the health care system increases our burden of illness, and, ultimately its own burden and society’s.

The model of the residential clinic is one which – while costly up-front – has the best potential for restoring MCSers to health and economic productivity and ultimately cutting overall costs to society.

First, the health professionals in such a facility would be trained to heal, not hurt their patients. It’s easier to achieve a trained cadre of specialized professionals in a short time than change the curricula of all medical schools, and, indeed, to retrain all health professionals in existing hospitals. But the existence of such facilities would in itself raise awareness, and provide an educational centre for other health professionals, including physicians, thus addressing many pressing system needs in one form.
Second, by plucking the patient out of her/his unhealthy environment as soon as possible, providing treatment in safe facilities (so the patient doesn’t get worse when doing treatment) and providing a safe residence, the downward spiral is stopped– a huge gain in itself. The sooner a correct diagnosis is given, the patient placed in a safe environment and treatment begins, after all, the less damage is done and the chances for recovery maximized.
Third, by providing the necessary array of effective treatments, consistently, in a safe place for six months to a year, the rate of recovery would be exponentially increased – and the rate of deterioration exponentially reduced. Indeed, (see below) effective treatment is so multifaceted that it’s a 24/7 endeavour in the acute phase, something most people simply can’t pull off at home, even if they have a good physician and pots of money. I’ve lived the negative experience for years, spent our life savings, and kept on getting worse. In Dallas I lived in a safe residence and did treatment at the clinic, and I made tremendous progress over only four months (till the money ran out – a year would have been optimum). I know this to be true.
Fourth, by assisting family members to find and prepare a safe home while the patient works on getting better assures that gains made in treatment will be built upon on return home, not lost.
Fifth, family members can find support and education with respect to many other issues, which makes them less likely to collapse from burn out (a very common problem) and to effectively support their family member in their post-san health regimen.
Sixth, MCSers who cannot return to their previous work because it involves toxic chemicals or unsafe environments, can other types of work, if necessary, in this age of advanced telecommunications, from home. There are many occupations they can pursue, and they at a clinic that brings in professionals to teach in a safe site they can learn how. So instead of drawing disability pensions for the rest of their lives, such people can move much more quickly to supporting themselves, regaining a sense of worth, and becoming, once again, economic contributors and income tax payers.
Seventh, such centers can become resources for treating other forms of environmentally linked illnesses. Health professionals who treat MCS be part of a still larger cohort of environmental health experts providing outpatient services to those who need not have residential facilities. Creating clinics with a broader environmental medicine mandate would make it possible for individuals and families to find specialized care quickly and competently; and not to get lost in the maze of a still inadequate larger health care system. Asthma and severe allergies, autism, behavioural and cognitive dysfunctions due to neurotoxins, reproductive problems due to endocrine disruting chemicals – all these could be treated in the outpatient components of these clinics.

For all these reasons, a system of MCS residential clinics – in effect treatment and rehab hospitals — need to be constructed. The building requirements for such facilities include chemically safe building materials and sparse, safe furnishings for residential quarters; safe materials for low tech treatment facilities (saunas, antigen testing rooms, oxygen, IV rooms and exercise rooms), rooms for consultation and education rooms and labs. In effect, we are speaking of low cost facilities by comparison with other specialized health facilities such as hospitals or nursing homes.

CLEAN UP THAT AIR – TACKLING AIR POLLUTION INSIDE AND OUT

With air pollution at an all-time high, with our community air laden with smog, barbecue and wood smoke, the chemicals from laundry products, as well as chemical emissions from industry and other large enterprises; and our indoor air saturated with chemicals in cleaners, solvents, perfumes and colognes, laundry products and air “fresheners” (there’s a scary little euphemism), it is extremely challenging to achieve a restorative respiratory environment. Many people with MCS can no longer live in cities with smog and still hope to get better. Toronto, for example, turned into an MCS hell in the last ten years. Living in neighbourhoods where people use pesticides for gardening is also deadly. So many people must live in rural areas or small towns (the reason we moved to Peterborough). But this still means facing pesticide use in many communities, or being unable to access health care (a near-universal problem). While MCSers are more sensitive to these pollutants, they are bad for everyone, and the most authoritative health authorities in the world have made this clear. So we need stringent guidelines with respect to air quality – see Links, see articles in The World is a Giant Petrie Dish and Dare to Struggle, Dare to Win – for general solutions to air pollution. But always keep in mind, for your own safety as well as ours, that the quality of your indoor air is responsible for as many or more illnesses as the quality of outdoor air.

STOP POISONING THE FOOD SUPPLY

Most chemically sensitive people need to eat organic food; for those whose primary toxic injury is pesticides, this becomes a medical requirement. You can’t detox and retox at the same time. But organic food is often inaccessible both geographically and financially. Now, if we want to avoid many other environmentally linked chronic illnesses, we should all eat organic food – that is to say, food as nature made it. Pesticides are poisoning all of us, and the soil and water and air around us. I’ve posted several articles – by me and others – in the THE WORLD IS A GIANT PETRIE DISH – to this subject and refer readers there. But the treatment program would not be complete without organic food.

ON THE MEDICAL LEVEL

If the illness is characterized by an intolerable body burden of toxicity, stuck in tissues and unable to move out, so to speak, due to enzyme and conjugation deficiencies; and if these inevitably deplete nutrient pools, damage the nervous system, overwhelm the immune system, breach the integrity of the blood-brain barrier, crash the endocrinological system and hence produce malfunctions in many other organs and systems, its stands to reason that the goals of medical treatment would be:

- to detoxify the whole body by other means;

- to restore the nutrient pools – especially the key nutrients;

- to help the nervous and immune systems (which can be thought of as “broken”) to heal;

- to help the blood-brain barrier to heal;

- to support an exhausted and depleted endocrine system;

- to help the recovering body to achieve less violent reactions to ‘incitants’;

- to restore health to the key overall systems and organs that have been damaged and address specific resultant problems, be they respiratory disease, hypertension, diabetes, arthritis or even dementia, with all necessary and appropriate modalities.

This is a multi-faceted program, and the more severe the illness, the more fronts its treatment most cover. As Dr. William Rea and other MCS specialists have emphasized time and again, to get positive change, one has to act on all affected fronts at once. The “sequential” approach – do some of these therapies but one after the other, which is what a lot of people end up doing—may or may not stave off deterioration – in my case, it did not. I got sicker. But it won’t get turn-around results. I can attest to this conclusion too.

In any case, this is an easy list to jot down. But in the absence of appropriate publicly-funded and accessible health care and safe housing, its a profoundly challenging one to fufill. For most people, especially the most sick and least affluent, it is, in effect, impossible. For people with private financial resources, it is easier to tackle all these dimensions, though if the toxic injury is sufficiently grave and the right medical care is not found in time, sometimes recovery is still impossible. Here are the elements of individual treatment:

1. Detoxification: people with MCS must rely on external help for detoxification. Over the years, a routine of exercise and intense far-infrared sauna treatments, combined with lymphatic drainage techniques, various types of chelation of heavy metals and nutrient support to prevent damage to the kidneys, liver and colon (the main organs of detoxification), have become the favoured components of a detoxification program which has taken center stage in treatment. Get the toxic garbage out! This is crucial.
2. Oxygen: when reactions occur, blood vessels constrict, the respiratory and nervous systems go into distress, and MCS sufferers become ‘hypoxic’. Hence daily oxygen therapy, both preventive and upon exposure, has been the key to basic survival for untold MCS sufferers. Obtaining prescriptions for this can be very hard if one doesn’t have an MCS-aware physician locally; and most provincial health systems won’t pay the cost.
3. Nutrient Support: High toxicity drains the body of essential nutrients and even creates inability to retain vitamins and minerals such as B12 and magnesium that are key to many essential functions. Many MCS doctors give intravenous treatments for such nutrients, allowing the body to absorb them directly and by-passing what is always a stressed intestinal system. The treatments include nutrients that support the organs of detoxification, and, increasingly, that seek to interrupt the nitric oxide cycle (see Martin Pall, above.) Glutathione is key to this, and is often nebulized. The cost of oral nutrients runs to hundreds of dollars a month. With IV, the thousand-dollar mark can easily be topped.
4. Therapeutic Diet: Organic food is very important; equally important is the elimination of foods to which the patient is very allergic, for these create more stresses from “endotoxins” that increase the total load, and finally, a rotation diet, in which foods may be eaten only once in four days. Anyone who thinks this is easy – just try it. A proper MCS diet is very expensive (organic food is twice as expensive as non-organic), very challenging to prepare, and very restrictive with respect to social eating.
5. Infection Control and Immune Repair: Viral, bacterial and fungal infections have a field day in people with MCS because our systems are so weak. So part of making people better is bringing these infections under control. One key to immune repair is testing to determine which components of the immune system are deficient, and pursuing strategies to assist in immune repair. This isn’t easy in many cases. But, for example, the administration of gammaglobulin injections if immunoglobulins are deficient, can have miraculous results, if physicians know about this and can obtain these materials. We are often told to take anti-infective drugs for the periods of time necessary to beat back chronic and well-established infections. But many of us are not able to tolerate these. Last fall, for example, I tried Valtrex, one of the few anti-viral drugs that has good results with herpes simplex, one of my most active and destructive “resident aliens”. After two days on the drug, I felt so weak and nauseous I had to stop. I have had similar experiences with anti-depressants and some antibiotics, and my experience is par for the course. I will try another drug soon – Valcyte, at the cost of a mere $25000 for a one month course. And I’ll pray that the Ontario drug plan will agree to fund my catastrophic drug needs. We’ll see. There are also other ways which are not in the mainstream of conventional practice – ultraviolet blood irradiation has yield incredible feelings of well being for me, for example. Some doctors work with different forms of autovaccination – again, a worthy modalitie, not sanctioned in Canada. Others use traditional anti-infective herbs where pharmaceuticals are not tolerated. But there is almost no space for practitioners to use these modalities without drawing the ire of their Colleges, which leaves a lot of us with some pretty huge challenges, and great deal of frustration – not to speak of chronic infections that won’t go away, and put us at heightened risk for cardiovascular and neurological diseases and certain kinds of cancer.
6. De-sensitization: along with these other modalities, many MCS doctors have desensitization protocols that involve testing for the substances that bring on the most acute reactions, then finding low titrations of them which can begin to lower reactions. These protocols don’t work with everybody; and in many, they don’t work at all unless the body is already detoxifying or at least in a stable situation. But for some – like me, after I had stabilized at Dallas – they work very well. Unlike regular allergy shots, they need to be part of a larger context of treatment. Again, access, access, access! Money, money, money!
7. Mind-body and energy work: For a long time now, there has been recognition even in mainstream medical circles that various forms of meditation, as well as treatments such as acupuncture, reflexology, reiki, polarity therapy are extraordinarily helpful in increasing immunity and rehabilitation. Indeed, OHIP will pay a $2,000 bill for course in mindfulness meditation because of this recognition. For people with damaged nervous and immune systems, this work is invaluable. It will not detoxify bodies on its own; but it will help to rest the nervous and immunes systems, and this in turn helps the detoxification and repair. As well, the effect of this work on the central nervous system is well known, and neuro-toxicity wreaks havoc with that system. Such treatment is therefore medically necessary for MCSers, and in Nova Scotia at least, forms one of the services that is provided by the Nova Scotia Environmental Health Center and paid for by government insurance. This needs to be institutionalized for all MSCers, wherever they are able to find good practitioners.
8. CNS Rehabilitation – increasingly a goal of MCS treatment is to help the inflamed and ‘broken’ central nervous system heal. Hence many kinds of treatments (e.g. acupuncture, crania-sacral, certain types of chiropractic and osteopathic approaches, certain types of massage, key nutrients) and activities (meditation, t’ai-chi/qi gong, yoga) are an important part of healing. The treatments are time consuming and expensive, and the activities must be done regularly if they are to have any real effect. Some activities are difficult to do because of damage to the CNS. If MCS is combined with ME/CFS, exercise-based activities may be impossible or even harmful. Every patient has to find her or his modality and intensity. For many, the neural biochemistry of reactions is interrupted by agents that down-regulate the nitric oxide cycle – see www.chemicalinjury.net — indeed, for quite a number of patients, this approach (which involves a regimen of nutrients to take and to avoid, and relies heavily on B12 and Glutathione) has been very, very productive. In seeking to obtain glutathione through IVs in my home city of Peterborough last week, however, I was told the nurses would not administer it because it was not FDA approved. I have other ways of getting it, but many, many others don’t. And it’s very expensive.
9. Hormone support: Many of us have some degree, often a very significant degree, of hormonal dysfunction: thyroid glands that can’t meet the body’s needs, adrenal glands that are exhausted, pituitary glands that won’t produce ACTH, no growth hormone, way too much or too little estrogen, progesterone, androgen and so forth. Few of us can handle the synthetic, patentable hormone rugs that have been made to supplement hormones; but a lot of us benefit greatly from carefully targeted doses of bio-identical hormones – made to be just like those our bodies produce, and thus not patentable. These are immensely helpful, prepared by compounding pharmacies, and are under perpetual siege but Big Pharma, who wants them banned and campaigns to have them taken out of the market place so they can sell their nasty, unnatural, patented hormones for huge profits instead.

To my current knowledge – I am always learning more, and new ways of working are constantly being developed — these are the basic components of most treatment programs. You can read more about them at the websites for the Dallas center , http://www.ehcd.com/, or at Dr. Grace Ziem’s site, http://www.chemicalinjury.net/, among other places.

So, do these treatments bring about a cure or only an abatement? As with other diseases, the prognosis differs for individuals according to severity of illness and toxic exposure, personal constitution, availability of treatment and emotional, practical and financial supports.

Worst case scenario : Significant numbers of people die as a result of this disease, unable to access safety and treatment in time, or at all. The poorer you are and the worse your toxicity, the more likely this will be your outcome.

Worse case scenario: You’re not dead, but you’re not really living, either. You ache in every muscle and joint, you can’t breathe half the time, you feel nausea, brain fog, terrible depression and anxiety, and you spend your whole life just trying to keep going and get food and laundry and house cleaning together. You are isolated in your home which is not safe, you have few friends, you have fibromyalgia, chronic fatigue, all kinds of infections, you’re poor, and even your family and your doctor insiste you’re hallucintating your illness. You think often about killing yourself, but you’re too exhausted to figure out how.

Common scenario: You can’t go to public places, you can’t travel or go to the movies, and you don’t have a truly safe place, but your place isn’t actually killing you, at least not right away, and on good days, when there’s no smog and something nice happens, you still think it’s worth trying to get better. You have a few friends who care and support you, and there’s love from your family too, so even though there are days when you’re not sure you want to go on, their love and help makes all the difference. Maybe you’re able to afford a few treatments – an IV every now and then, an acupuncture treatment – and these help to keep you going too. But real progress remains out of reach, you never know when you might fall back to an even worse place, and you struggle with depression, fatigue, infections and despair on a regular basis.

Better case scenario: You’ve been damaged by toxic injury and, even, by years, sometimes decades, of searching for the right diagnosis in an incompetent health care system. But you have enough financial, social and medical resources that you have been able to significantly improve the quality of your life through a radically circumscribing it, within a safe home environment, accompanied by at least some consistent effective treatment. And the earlier you were able to achieve this the better you got. You can travel by car or camper, maybe with oxygen by air, you can read with the use of a reading box, or welcome visitors to your home with minimal precautions. You can work regularly on a computer or in other ways at home, you may have a reasonably stable and rewarding family life (with supportive family members, of course) and may be able to enjoy nature and the out-of-doors in safe surroundings. With exposures at a minimum, and some ongoing treatments, (oxygen therapy daily, for example), things stabilize at a livable level, though set-backs from inevitable exposures occur, during which you once again feel very sick and depression and anxiety return, and you are still highly restricted in your life-activities.

Best case scenarios: You are among the luckiest of MSCers, possibly less damaged than others, or you have more resources to achieve safe environments, or find the most effective combination of treatments rapidly. You have been able to avoid chronic deterioration, especially because you were able to achieve a period of rigourous reduction in exposures with effective treatment, radically reducing physical suffering and depression and regaining energy and enjoyment in living. Over some years, you have brought about a restoration of a high functioning in many areas, with ongoing treatment (i.e., antigens and/or B12-Glutathion nebulizations, therapeutic diets and controlled exposure levels, regular detox, and so forth). Now you can have a moderate level of ordinary social life, which might include some travel, some cultural outings, and so If your work environments has been modified to be chemically safe, you may be able to work outside the home again, which is why workplace accommodation policies are so important. (See CHRC policy document.) However, even for your, set-backs do occur frequently, of greater or lesser duration and severity, and constant watchfulness is essential.

Our goal as a society should be, after prevention of MCS, that those who develop MCS should be able to achieve the Better or Best Case Scenarios – not end up zombies or corpses from the disease. And the rule of thumb –- again, identical to most diseases –- is that the earlier that we are able to correctly and effectively support people when they develop MCS, the better will be their prospects for recovery. The more that we can provide the supports (safe housing, emergency shelters and safe hospital facilities, pesticide-free food, non-toxic work environments) and treatments they need, the more we can ensure that people have a chance of recovery, at least to a “low-normal” degree of functioning, maybe to much better. And the more we can ensure that families of MCS sufferers are supported too, the more we can attenuate the devastating ripples of this disease as they spread ever outward.

I hope all this helps you to understand my situation better; makes you more aware of the many people with MCS who are usually invisible and often very isolated because of this toxic world and its dangers. I hope it encourages you to lend support, indeed to demand, medical and social services for people with this most contemporary of disabilities. I hope too that if you check out some of the links I have included, it can even help you to spot potential problems in your own family, if and when they occur, and head acute illness off before it sets in (see the MCS America site too).

Again may I suggest that you visit the websites of the EHAs – Environmental Health Associations – of Ontario, Quebec, British Columbia and Nova Scotia for a wealth of important references and information. I ask you to consider making these organizations some of those you support with your charitable contributions (and thank you to those of you who sent contributions at the time my mother passed away). Already, illnesses caused by environmental degradation have left few families untouched and this reality will only get worse in the coming years. And of course I urge you to use your political clout to elect people who make addressing environmental illness an integral part of their political platforms. Let’s get out ahead of this thing; not get dragged, wounded, behind it.

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