Treating MCS: What really works

(This article first appeared in Sensitivity Matters December 2003, so it doesn’t include treatments that have been developed since then, most notably Martin Pall’s protocol.)

The September 2003 Environmental Health Perspectives contained an study by Pamela Reed Gibson about the perceived effectiveness of various conventional and alternative therapies tried by 917 people with MCS contacted through the Chemical Injury Information Network and MCS support groups.* 82% of the people who completed the questionnaire were female, 95% were Caucasian. Their ages ranged from 20 to 82, with a mean age of 53 years.

They described the severity of their MCS as:
Mild ………………..7%
Moderate …………32%
Severe …………….45%
Totally disabling ..13%

They believed the cause of their chemical sensitivity to be:
One large chemical exposure ..20.2%
Series of low-level exposures ..58.5%
A physical illness …………………5.2%
A psychological stressor ………..0.8%
Did not know ………………………8.7%
Did not answer question ………..6.7%

Over the previous two years their condition had shown:
Considerable decline ………..20%
Slight decline ………………….17%
Mixed or no change ………….24%
Slight improvement …………25%
Considerable improvement ..15%

The participants had consulted a mean of 12 health care providers, but the mean number they described as helpful was only 3. They had spent a mean total of $51,000 on treatment, $7000 in the previous year. They had used a mean of 31.4 of the 101 treatments which are listed here: Treating MCS What really works Table.

In the article treatments were ranked according to the ratio of the number of people reporting help to the number reporting harm. However, I have ranked them according to the total number helped and this gives a slightly different picture. One problem with the help:harm ratio was that a treatment could have no noticeable effect on a large proportion of those who tried it and still score highly. Another problem is that it implies that your chance of being helped by a particular treatment is determined by this ratio. But whether you are helped or harmed by a particular treatment is not random, and considering whether any factors known to influence the outcome of a treatment apply to you is a better approach than just choosing by the help:harm ratio.

Nine of the top ten treatments are ones developed and recommended by Environmental Medicine doctors. (Number seven, “support group,” could also be claimed to come under the umbrella of Environmental Medicine, as the first MCS support groups in the US, UK and Australia were assisted by Environmental Medicine doctors.) The top two, “Chemical-free living space” and “Chemical avoidance,” were reported to be helpful by 94.8% and 94.5% of participants. If you had any doubts about reducing chemical exposure being worthwhile, doubt no longer.

In contrast, the treatments advocated by those who believe MCS is psychological came among the last in effectiveness. Worse, Zoloft, ranked 101 in effectiveness, harmed 68.2% of those who tried it and 45.5% said it was very harmful. Prozac and Elavil were ranked 100 and 99, and harmed 59.1% and 57.7% respectively. Valium helped 20.9% but harmed 44.7%. “Psychotherapy to cure MCS” was reported to be helpful by 20.2%, with 4.7 % finding it very helpful. It didn’t cause harm on the same scale as the medications, but 65.3% said it had no noticeable effect.

Exercise helped 61.6% of the 763 who tried it, which would surprise those Chronic Fatigue Syndrome sufferers who think CFS and MCS are the same thing.

Nutritional supplements performed quite well. Like alternative therapies, however, they do not seem to be a substitute for chemical avoidance. A wide variety of alternative therapies are listed. They include some practised in certain cancer clinics in Mexico, which probably says more about the level of desperation of some MCS sufferers than about the appropriateness of these treatments for MCS.

Although this study had significant limitations, it is the largest study so far of the effectiveness of treatments for MCS. It shows that people with MCS who cannot get treated by a doctor who uses Environmental Medicine techniques are being denied effective medical treatment.

The extremely high helpfulness ratings for “Chemical-free living space” and “Chemical avoidance” should be taken very seriously by people with MCS and those with the power to help them access safe housing or avoid chemicals such as pesticides and fragrance. The lack of effectiveness, or even harm, reported for so many other treatments makes avoiding chemicals all the more important.

* Gibson, P., Elms, A. and Ruding, L. (2003). Perceived Treatment Efficacy for Conventional and Alternative Therapies Reported by Persons with Multiple Chemical Sensitivity. Environ Health Perspect, 111(12), pp.1498-1504. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1241653/pdf/ehp0111-001498.pdf

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5 Comments

  1. karl

    This is a good artical, we need more of the like, too guide us away from costly and innefective treatments. Thankyou Catherine

  2. Illa Conradie

    I couldn’t agree more. Became very sick with MCS and CFS in 2002, after many years of unrelenting stress, and only reached a plateau of reasonable functionality after we moved to a free-standing house from a complex where a lot of pesticides were sprayed regularly. We live in a rather polluted city (Cape Town, South Africa) which is also surrounded by vineyards and green areas with copious pesticide spraying. I survive by keeping my windows closed at all times, doors when I can, air-conditioning and air-purifiers running and ABSOLUTELY NO pesticides or fragranced products of any kind used in my home. I provide fragrance-free soap and shampoo to my char and also take my own fragrance-free shampoo and conditioner to the hair salon as well as the doggie parlour. I can mostly handle other people’s scents for a few hours as long a I can return to my own fragrance-free home at night. Stayed in rented holiday accommodation where scented cleaning products had been used about four years ago and started projectile vomiting after 24 hours. Had to leave, obviously. Have used many alternative medications through the years, but in the end the only things that help me cope are my home free of pesticides and chemical smells, and trying to avoid stress as far as possible. Especially emotional stress always triggers the CFS, which makes the MCS worse. One remaining difficulty is allergy, which I had long before the CFS or MCS and for which I have to take for longish periods depending on the season. Eventually always suffer severe pain throughout my body because of the antihistamines. I’ve learnt not to take pain medication for the pain, as it invariably makes the pain worse, not better, plus bring on immense fatigue.

  3. It sounds like your fragrance-free, pesticide-free home is helping if you are ok with other people’s scents for a few hours.

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