I’ve been ill for 30 years with a condition that has progressed to the point that I use a power wheelchair, and for over ten years I couldn’t eat or drink. During that time I’ve been through periods when I felt quite desperate. I’d have tried anything and paid any amount for a small improvement. That’s a vulnerable state to be in, which left me open to exploitation.
From the start of my illness I followed the process of trying to get a diagnosis and treatment through conventional medicine, but that proved to be slow and prone to big errors. I soon decided to see if complementary or alternative medicines (CAMs) could help me at all. As a logical kind of guy I was sceptical, but still open minded enough to try them. I ended up trying quite a few.
Cold bath therapy (yes really!) – This was the first treatment I tried. I had a diagnosis of Chronic Fatigue Syndrome (CFS) at the time. A hydrotherapy centre was researching the health benefits of cold baths, which seemed to help people with CFS. It was a well intentioned study and free to take part. I had a 20 minute bath at 5 degrees C every day for about a year. There were small changes to my blood over that time, a lot of shivering, but no noticeable improvement in my health.
Acupuncture – My diagnosis had changed from CFS to Postural Orthostatic Tachycardia Syndrome (POTS), the cause of which was unknown. I found a local practitioner who claimed to have cured POTS before, and was confident he could help me. He was a hippy type character who believed in numerology and the healing power of crystals. He diagnosed me with ‘a virus which has turned your blood like gravy’. I had a number of treatments for my ‘Bisto-blood’ at a cost of about £400, but there was no improvement in my health. A few years later I tried acupuncture again in the hope of improving joint pain. I paid another £300 or so, but there was no change in my pain levels.
Chiropractic – The practitioner claimed mis-aligned vertebrae were putting pressure on the nerves to my heart, and that was causing my low blood pressure and rapid heart beat (POTS). It sounded plausible, but a number of treatments later there had been no change in my symptoms and a physiotherapist had pointed out that the nerves to the heart don’t pass through the spine. Upon questioning, the chiropractor changed his explanation, commenting ‘The reason your blood pressure is so low is the colour of your clothes is too bland. If you wore more red and orange clothes your blood pressure would be higher’. During the same appointment he claimed AIDS was ‘a government conspiracy to reduce promiscuity’. I didn’t return. I’d paid him about £250.
Chinese Herbs – The herbalist diagnosed me with ‘Low energy levels in your kidneys’ and prescribed herbs which were made into a nasty tasting tea. I drank two cups a day for as long as I could tolerate it (about three weeks). There was no improvement in my health and I’ve since read articles warning some Chinese herbs have been found to be contaminated with toxic compounds, heavy metals and microorganisms, and could have serious side effects (ref). 
Supplements – Vitamins are a clinically proven medical treatment and can be highly beneficial. However, often found next to them on shop shelves are supplements which claim to help numerous health problems but have little or no evidence to support this. Some supplements can even be harmful, for example gingko can increase blood thinning (ref), St John’s wort can make drugs such as anti-depressants and birth control less effective (ref) (ref), and the herbal supplements comfrey and kava can damage your liver (ref) (ref). These supplements are widely available to buy without any advice. I tried many supplements over several years but felt no benefit.
I also tried reflexology, which made my feet smell nice a few times for £150. Aromatherapy was relaxing and made my whole body smell nice a few times for £180. Neither improved my health. Reiki massage felt nice but achieved nothing.
It was after I’d been ill about 8 years that I was diagnosed with hypermobile Ehlers-Danlos Syndrome, a genetic connective tissue disorder with a number of associated conditions, such as POTS and Gastroparesis (paralysis of the stomach). A few years later due to Gastroparesis I lost the ability to eat or drink. Left to nature I would have died, but thanks to conventional medicine since then I’ve been fed through tubes into my stomach and bloodstream. Tube feeding isn’t fun, but it has given me fourteen extra years of life which I’m extremely grateful for. In sharp contrast none of the complementary or alternative medicines I had tried made me feel the slightest bit better.
The experiences I had made me pretty cynical about the whole CAMs industry, and it clearly is an industry. I don’t think any of the therapists I saw was a complete charlatan. I think they all believed in the therapy they were offering, but they also needed to make a living from that therapy. The wasted money doesn’t really bother me (particularly as much of it was my parents’ 🙂 ). But each treatment took time and effort, and the false hope a couple of the therapists gave me due to their exaggerated sales pitch led to painful disappointment. Was I exploited at all? Probably. But looking back I’m still pleased I tried those treatments. If I hadn’t, I’d have always wondered ‘What if?’
When you assess the effectiveness of any treatment, conventional or alternative, two factors have to be considered: the placebo effect, which is a phenomenon where the recipient perceives an improvement in their condition due to personal expectations rather than the treatment itself, and the get-better-anyway effect ie. if you’re given a treatment for six weeks and you improve in that time, how do you know if the improvement was due to the treatment, or your body healing itself? Those two factors can give enough positive data for people to believe in the treatment (therapists or clients).
I didn’t think I’d ever try a complementary or alternative therapy again, but a few years ago I started having treatment on my back from my regular physiotherapist. I was surprised when he suggested treating me with acupuncture. He’d never used it on me before, but after seeing colleagues get positive results he’d done a training course in ‘Western Acupuncture’. I trust him implicitly so I agreed and …it worked! Staggering but true. The use of acupuncture on a muscle apparently triggers the local release of an enzyme called Acetylcholinesterase, which relaxes the muscle. I need regular treatments and I still get pain when I’m active, but my back doesn’t go into spasm after exercise anymore. I’m unsure if ‘Western Acupuncture’ performed by a physiotherapist is a conventional treatment or alternative. There’s limited clinical evidence to support any form of acupuncture and my first two experiments with it failed badly. But for muscle spasms alone acupuncture really seems to help me, unless of course it’s due to the placebo effect?
If you have a chronic illness that conventional medicine can’t help, then like me you may feel you need to try complementary and alternative medicines, even if it’s just for peace of mind. If you do find something that helps you’ll never know if your progress is due to the treatment, the placebo effect, or the get-better-anyway effect, so perhaps just be grateful you’ve improved? I honestly wish you luck, but based on my experiences maybe you should be careful with your time, money and your emotions.
Thanks for reading, Ceri