This should probably be a blog, but we don't have them here, so I hope no-one minds if I indulge myself with a few reminiscences and musings. 50 years ago in Australia, I wanted to study Medicine. I had the grades and would have got a place, but my father wouldn't let me. So did a science/Maths degree and became a Maths teacher. 40 years ago, I applied to study medicine in the UK, but was foreign and too old at 28, so didn't get a place. My social circle was mainly 'alternative' folk - hippies, dropouts, feminists, political lefties etc and people into the personal growth movement, Encounter groups, and alternative therapies. So I guess it's not surprising that I ended up doing a 4 year full time training as a Naturopath/Osteopath in London. ................................. I loved the medical half of the course, taught by doctors. The naturopathy was basically nutrition and healthy eating with a few hydrotherapy treatments. Osteopathy I had no real aptitude for, though I was good at massage and more gentle joint mobilisation. We moved to a small town, and my practice never really took off, so after a couple of years I went back to teaching maths. Even while in the midst of my alternative medicine immersion, I always kept my scientific brain switched on and was sceptical about unproven claims. That's probably why my small practice tended to be based mainly around sensible diets and massage/joint mobilisation, and attracted mainly lonely old ladies who wanted a bit of company and human physical contact and someone to chat to about their health. My most memorable success story was a young woman with awful eczema, mainly on her hands, which made her life very difficult. I put her on an elimination diet and found she was allergic to wheat. The eczema vanished within a week. A miracle as far as she was concerned! ............................... While doing that course, and while trying to set up in practice, I met practitioners of other alternative therapies, and learned a bit about them - homeopathy, acupuncture, herbalism, hypnotherapy and some of the more esoteric things including various forms of healing. I tried using all of these for various minor ailments, and sometimes sort of convinced myself that they had helped, but with hindsight realised it had been a mix of wishful thinking, placebo effect and my body's natural healing processes. I found no evidence that any of them actually had any objectively provable effect on my health. ......................... Over the first few years of my ME, while I was relatively mildly effected and still working, though with increasing difficulty, desperation drove me to trying a long list of different alternative therapies: homeopathy, acupuncture, Chinese herbs, healing, cranial osteopathy, Reverse Therapy, cold baths, ... Most of them had no effect at all. In a few cases I convinced myself I was a bit better, and started to do a bit more, and crashed badly. My worst experience was with an aromatherapist who gave me a nice smelling massage, and told me terribly sincerely that the reason I wasn't getting better was that I really didn't want to get better. .......................... My current position on alternative medicine is that some of the therapies may be helpful for some mild conditions, but that I have seen no scientific evidence that any of them have any effect on the root of ME, so none can or should claim to be cures for ME. I am happy to accept that some may be useful for symptom relief, such as herbs for sleep, and that if people want to try them, that's fine, so long as they are not the more dangerously wacky ones, and they are only used for minor symptoms, not as a substitute for proven treatments for serious illnesses.
I think this is what likely happens in things like the PACE trial etc. Everyone involved in such a trial desperately wants (with varying motivations) for the trial subjects to feel better. The boom and bust (and downright idiosyncratic) nature of ME, seems to give lulls where people can convince themselves, driven by optimism more than anything, all is going well, when in actual fact the lulls are the very times PwME probably need to back off and give their bodies a vital chance to recoup.
A perfectly reasonable question. The ones that I have seen some positive evidence for are ones with recognised pharmacological or physical effects. So herbal medicine has some remedies that can reduce symptoms, for example ginger, peppermint and slippery elm for mild digestive symptoms, valerian for sleep, willow bark for pain. After all, some drugs, such as aspirin and morphine are developed from traditional herbal remedies. And physical therapies like osteopathy, chiropractic and massage can be helpful in speeding recovery from temporary aches and pains like acute back pain. Some of the same methods are used in physiotherapy. (Edit to add: I've seen people walk into an osteopath's room bent and wincing and walk out straight and smiling. Not magic just release of muscles in spasm.). As I mentioned in my first post, some dietary treatments such as elimination diets to discover allergies in conditions like eczema are helpful. These are used by some orthodox medics too, but, as in the case I treated, orthodox doctors can be unaware of this, and focus on drug treatments. One hydrotherapy treatment I learnt was alternate hot and cold compresses for sinusitis. I tried it a couple of times and felt my sinuses unblocking and draining. I think this can be explained by expansion/contraction leading to physical unblocking. It didn't cure the infection, but reduced the pain. Heat and cold can help with other localised pain too. I'm not sure whether these are classed as alternative medicine, or just 'things your granny taught you'. I have not seen any logical explanation for, or clinical trial evidence for homeopathy, reflexology, and the various healing practices. Nor have I witnessed any convincing cases where significant alteration of symptoms occurred that can't be explained by placebo effect or the body's natural healing that would have happened anyway. I have no idea whether acupuncture or hypnotherapy have any logical scientific explanation or evidence. They didn't work for me and claims seem often to be unfounded. I haven't seen or heard of any evidence that any of these therapies have any effect on more serious conditions like cancer, autoimmune conditions or ME. In these cases I get just as angry as you do about claims of cures and people being persuaded to waste money and put their health at risk and raising false hopes. I guess your question and my answer demonstrate why I fairly quickly gave up practising alternative medicine. I had a few skills and bits of knowledge that could provide some symptomatic relief in some cases - a listening ear for the lonely or sad, a nice massage to ease aches and pains, and some sensible dietary advice, and telling people to go to their doctor if I spotted something that could be more serious. Edit to add. I am not recommending anyone pay to see any alternative therapist, nor can I provide clinical trial evidence for any herbs or osteopathic treatments. But these areas at least have some plausible explanation of how they might work in some cases, unlike most alternative therapies. The few treatments I listed as helpful could also just be placebo effect! I haven't either paid to see an alternative therapist or recommended anyone else do so for over a decade.
@Trish - Thank you for sharing. I live in a mecca for alternative therapy and everyone knows just what therapy one should be doing to heal. When I first learned of many basic supportive therapies ME/CFS, it was hard for me to decide what was legitimate and what was based on "belief." Some people end up online swearing by this or that, it was through discourse on forums that helped me feel safe pursuing certain paths. It wouldn't be such an issue, except that those of us with ME/CFS exist in a sort of medical Twilight Zone; reality and fiction can be difficult to decipher in this realm. Your post gives me solace in my decisions.
That's is the dark side of it all, right there, isn't it? Too much belief in mind over matter, then we start to see illness as the person's own fault. I've also had people ask me why I'm not still looking for cures. Like, why have I given up? You end up justifying yourself and trying to explain that at some point, you have to stop the frantic search and accept the reality. Then you send up sounding really negative.
I've never understood why osteopaths have such a poor reputation. What drew me to an osteopath was the Perrin Technique but I went with the attitude "well if it all turns out to be nonsense, perhaps she'll be able to do something for my back and save me a wasted trip". For years the muscles down one side of my spine had been in spasm and it was frequently very uncomfortable. I'd seen physiotherapists previously and although they were somewhat helpful, the condition would always worsen again and I'd have to go for regular massage. The osteopath's treatment has been much more successful and although I'm left with stiffness, there's no pain and I don't need massage. She also sorted out a fault I had with the angle of my pelvis. No one else had ever commented on that although I was aware of it. I do remember lying on her table and thinking "she's barely touching me, this can't possibly help". The following morning, I felt like I'd been hit by a truck. My posture was completely changed and it felt odd for a while, a bit like getting your teeth polished, but, unlike the polish, the realignment has been permanent. There's something very arcane about osteopathy. With a physiotherapist, you're aware of the manipulation because it invariably hurts, sometimes a lot. Osteopathy is so gentle that it can actually be relaxing. Except when they crack your spine. That's horrible.
Thank you all for your realistic approach to alternative therapies. Through my own research, I have found a few things that help, but of course not cure. Out of desperation, I have seen a number of naturopathic doctors. All were confident they could help. In that honeymoon phase with a new practitioner I was always very hopeful. But, as the months, or even years dragged on with no improvement, except where their bank account was concerned I would of course realize they didn't know how to fix ME. I think alternative health practitioners know very little about ME; it's just the same with mainstream practitioners. Fifty percent of the NDs I saw told me I had adrenal fatigue, and sold me herbs for this. All the NDs I saw offered me an ongoing string of alternative medications - most of them never worked. One that has somewhat helped is heavy metal chelations, but it's not a cure. Overall, my experience with alternative health care practitioners has not been as published in their glossy brochures.
