ME/CFS and Getting the Most from Complementary and Alternative Medicine

Disappointed by the conventional medical profession many people with ME/CFS turn to complementary and alternative medicine (CAM), often with the hope of finding a complete cure. People who have the money often spend thousands chasing the elusive cure jumping from one promise to another, perhaps just about receiving enough benefit to keep hope alive. Others become disillusioned early on in their CAM journey, perhaps at the hands of an unskilled practitioner.
No matter what the discipline there are many CAM practitioners who can become great allies in your healing journey. They may not be able to offer a complete cure but they may well be able to contribute to the small improvements to your health that can gradually accumulate until your body is finally healthy enough to heal itself! I have had a lot of support from various CAM practitioners over the years and have learned the following lessons which I think would be helpful considerations for anyone planning to go down that route:
1. Expectations
Be clear and realistic about what to expect from you practitioner. They can be your ally; they will work with you to help you achieve improvements in your health. They will not be able to take all your cares and worries away in one foul swoop! But they can support you on your healing journey and it can be great not to have to do it alone! Be wary about those that offer a complete cure, if they do you will need to ask them how they hope to achieve it, how many others with ME/CFS have they successfully treated and how long it took and is likely to take for you. Make sure you get a clear idea of how much this ‘cure’ is going to cost you.  Then ask yourself if they really made sense, if you really felt that you could trust them or if you just want to believe. A practitioner who is realistic about offering small increments towards full health is likely to be more trustworthy. At the same time your practitioner does need to show some confidence in their abilities!
2. Money
How much can you afford to spend? How often and for how long? Can you afford weekly treatment that could take 2 or 3 years to bring about any substantial improvement? Will a little bit of help once a month, be enough to keep you on an upward track? Is the treatment expected to become less frequent? After how many sessions? Some practitioners might have a sliding scale of charges so if finance is the only thing standing in your way, and you have a low income, don’t be afraid to ask.
3. Skills and experience
I believe that the great difference in opinion as to whether any particular CAM practise is valuable stems from the large range of skills and experience within that practise. I was lucky enough to be treated by a very skilled acupuncturist the first time I had this illness. I’m sure her treatment contributed greatly to my early progress with the condition. I later moved cities and found another competent acupuncturist, but one who probably didn’t have quite the finesse of the earlier one. During my second illness I lived in a remote area and the only acupuncturist I could find within traveling distance had nowhere near the same kind of skills as the previous two. If you can, try to find an experienced practitioner, especially one who has had experience treating other people with ME/CFS and understands the difficulties of treating such a complicated multifactorial condition. However if logistics and cost mean that your only option is a practitioner with less experience, their personality and commitment could make a big difference and it could still be worth enlisting them as your healing ally.
4. Personality and commitment
You need to find someone you can trust and relate to. Someone who will listen and empathise and really pay attention to the small changes to what you are going through. Because all of our malfunctioning systems are connected, sometimes a positive change to one can produce a negative change in another and your practitioner should be willing to accept the unexpected and work with it. Be wary if they just insist that what they are doing should work, and you just have to be patient. I always think in terms of the fact that I am paying for an ally, not a cure-all. I need to be fully understood because I don’t believe in magic wands. You might not want to share the full detail of your changing symptoms, worries and concerns with your loved ones, it might seem tedious or a burden.  But you can pay a CAM practitioner to listen! Make sure you find someone who is as committed to your healing journey as you are.
5. Logistics
How difficult is it to get to the appointments? Can the practitioner come to you? Does someone have to drive you? Can you take a bus? How much will getting to the appointment take it out of you? When I lived in the remote part of Spain I had to get up even earlier than if I was going to work, on my day off, to take a 45 minute bus journey. Then after the appointment I had to sit in a café for half an hour to wait for the bus back. I probably would have persisted with him a little longer if the whole experience hadn’t been such an effort and taken up half of my day off! To balance that kind of investment he would have needed to produce amazing results!
6. When to stop or change
Do the sessions take too much out of you? Do you spend half the time between sessions trying to get over the last one before you notice any benefit? Are you not really noticing any benefit at all, are you just wishfully thinking that you will? Are you actually feeling worse?
Some treatments can produce a short term worsening of symptoms before the benefits should be perceived but if this is the case you practitioner should warn you. My acupuncturist warned me that I would feel worse in the first 48 hours and then should start to gradually feel better. It happened exactly as she predicted.  Other treatments might involve a longer term worsening of some symptoms. Some practitioners suggest that as the immune systems starts to function properly again there is often a worsening of flu like symptoms. Or as a yeast infection is tackled ‘die off’ symptoms can make you feel worse. Make sure that the practitioner is clear about what sort of symptoms you are likely to experience as a result of improvement and how long they should go on for. Also trust your intuition. Do you feel like your symptoms are a new development as a result of an effective treatment? Do you feel different to how you feel when you normally take a turn for the worse? Don’t accept anything that gives you the typical ‘bust’ of overdoing things especially if it lasts for more than 48 hours without significant improvement afterwards. Don’t put up with feeling worse in any way indefinitely, if you aren’t noticing some benefit, e.g. an increase in energy or a better sleeping pattern.
Choosing when to stop or change is a bit like doing a cost /benefit analysis. How much does is cost?-Financially to continue the treatment? -Physically to get to the appointments? –Emotionally: are you investing without seeing a return? The benefits might not only be improvements to your health, but also the sense of having a health ally, someone you can talk to about all your health concerns. Try to keep your hopes for the future out of the equation and focus on the here and now balance. Allow hope to enter into the equation only if the practitioner has consistently delivered on their promises.
7. Belief in the theory
Finally it is important that you have some kind of faith in the theory behind the treatment. Many CAM practices are based on the idea that matter is also energy; that good health relies on a balanced flow of energy around our bodies. Can you buy into the theory behind your chosen practise? If you don’t feel convinced after a few sessions it might be worth trying something else. Your belief and commitment is really important.
I have to admit that when I turned to CAM I was pretty much clutching at straws. I was a scientist in my thinking and was pretty sceptical.  However modern medicine had let me down so I hoped that a different way of viewing health could offer me answers that science couldn’t. I chose acupuncture over homeopathy only because it seemed as though it would allow me to continue to drink coffee! (which after a few sessions I gave up anyway). What really convinced me that there was something in it, was that in those first 48 hours after my first treatment, I experienced an intensity of all the vague and nagging symptoms I’d ever had with this illness (just as my practitioner had predicted). I had never experienced them all at once before, nor any of them so intensely. Early on in this illness I often found myself doubting myself because it seemed so hard to really pinpoint what was wrong. My first 48 hours after acupuncture confirmed what was wrong and confirmed that this mysterious health system had ways of tapping into the illness. I was so relieved!


2 thoughts on “ME/CFS and Getting the Most from Complementary and Alternative Medicine”

  1. Thanks for sharing this. Number 2 is definitely the barrier thats stopped me seeking new therapies, I feel that it’s the worst thing to be ill but not being able to afford the care we need. This is when the government should step up and take note!

    I had one awful practitioner (if you can call her that)that made judgements about me and tried to guilt me into paying for her services….my advice to anyone, tred carefully and trust yourself and your body, if it doesn’t feel right don’t feel pressured just stop.

  2. Thanks for commenting Jemma. I totally agree with both points!

    It would be great if the heath service would provide us with a wider variety of treatment options. This illness makes it difficult for us to have a good enough income to be able to pay for the things that could help us!

    And we definately need to trust how we feel and not continue with anything that doesn’t seem right!


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