A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors
How to avoid wasting money when self-treating environmental illnesses
Whether you suffer from chronic fatigue syndrome (CFS/ME), fibromyalgia, multiple chemical sensitivity, irritable bowel syndrome (IBS), or any other illness which we cover on The Environmental Illness Resource, the treatment options available from conventional medicine are extremely limited or totally non-existent.
When I was diagnosed with ME/CFS in 1990 at the age of 11 I was given two treatment options by my doctor and various hospital specialists.....psychiatric treatment and 'graded exercise'. To cut a long story short, the psychiatric 'treatment' involved a grumpy old man suggesting that the only things wrong with me were that I didn't want to go to school and I had problems at home. Neither of these suggestions was even close to the truth, I loved school and was deeply upset about having to miss days because I was too ill. I also had a very happy home life and have a fantastic family. This is besides the fact that if I had problems at home AND wanted to avoid school, surely I would not have spent the days I had off school....at home in bed!
I am deeply saddened that in the 17 years since my diagnosis the treatment offered for ME/CFS by the National Health Service (NHS) in the UK has hardly changed at all. They now recommend cognitive behavioural therapy (CBT) and still suggest graded exercise. I have had CBT myself in recent years and, although preferable to being accused of skipping school by a clueless 70 year old psychiatrist, it was no more than an interesting intellectual exercise. It presents some worthwhile ideas that may help some sufferers cope with daily life, but it is hardly going to return any ME/CFS patient to anywhere near normal health.
So, given the fact that ME/CFS and related illnesses are so woefully treated by conventional medicine it is no wonder that most of us patients look for alternatives. In the US the complementary and alternative medicine (CAM) sector is said to be worth up to $3 billion annually and is increasing every year. The question then for us patients is....'which treatment(s) or product(s) should I spend my money on?' The question is all the more important given that many of us are unable to maintain employment die to our illnesses.
So, after that rather long winded introduction I'd like to offer a few tips on how to avoid wasting money on treatments/products that or unlikely to help you or handing your precious savings over to individuals/companies who are just out to get rich.
Do Your Research - Learn as much as you can about your condition from reading articles written by researchers and doctors who specialize in the particular illness. Even when there is research evidence to support a treatment and doctors specializing in environmental illnesses are using them successfully it may takes many years until the treatment is provided by the mainstream medical establishment. Don't assume that something doesn't work just because your regular doctor knows nothing about it or tells you it doesn't work. Never take the word of a single person, no matter how qualified they appear, always get a second opinion, and a third..and so on. Carefully research all the evidence for a treatment yourself and come to your own conclusions before trying it. Trying every treatment out there randomly is only going to end in frustration and an unhealthy bank balance!
Work With a Professional to get to the Root of your Problems - Before throwing away all your money on supplements, remedies and treatments that may or may not be beneficial to you it is a very good idea to work with an environmental illness aware healthcare professional to determine your individual problems and needs. As the Affordable Care Act takes shape, seeing a professional has actually become far less of a burden. Not to mention there are a number of tax benefits associated with healthcare now; there are even free tax calculators available as well. The philosophy of integrative/functional medicine is that everyone is different, even when they present with the same diagnosis. Taking the example of ME/CFS, to get the most out of treatment you need to know exactly what is going on. ME/CFS can have a number of triggers and contributing factors including specific viral infections (HHV-6, Epstein Barr) gut infections (bacteria, Candida/yeast, parasites), nutritional deficiencies, food sensitivities, hormonal imbalances.....and the list goes on. A suitable healthcare professional can assess which of these factors may be a particular problem for you and tailor treatment to address them. You don't want to be wasting your money on a variety of vitamin and mineral pills if you don't actually have deficiencies or require extra amounts do you?
Never Take a Product Manufacturers Claims as Fact - This is just common sense but information that comes from the people who are trying to sell you something is mostly likely not the most reliable. There are many respectable companies out there who are totally sincere and truthful in their advertising and promotional material but there are others who certainly aren't so you need to be sure before you buy. Find out about the people behind the company. Are they qualified to make statements about the product(s)? Are the claims backed up by research (preferably independent)? Try to find information from reputable sources that backs up claims that a company is making for a product.
Check Practioner Qualifications - If you choose to see a complementary/alternative medicine practioner, whether an acupuncturist, herbalist, nutritionist/nutritional therapist or anything else, always check that they are registered with the appropriate governing body for that therapy. Membership of the therapies governing body usually demonstrates that the practitioner has undergone thorough training, is involved in continued professional development, and is fully insured. Of course your personal relationship with any healthcare provider is also important. If you don't click with them, feel they aren't listening to you or answering your questions adequately, go elsewhere!
Talk with other Patients - If you come across a treatment or product that claims to be beneficial for your illness try to talk to other patients who have tried it and get their opinion. You could do this by joining support groups both online and in the real world or visiting websites such as this one and many others that have forums and message boards. Of course, what works for one person may not work for another but if there are many people saying positive things about a particular treatment/product then it is safe to assume it might be worth a try.
So there we have a handful of tips to help you get the most effective treatment without going bankrupt. Just to emphasize, I feel it is vitally important to work with a healthcare professional you are comfortable with, always seek out the most authorative information, and always get a second opinion.
If you'd like to agree or disagree or add some tips of your own, please do so using the comments form below!