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Living with M.E.

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Complementary and alternative approaches

Complementary and alternative approaches

We use the term “complementary approaches” to mean anything that falls outside of mainstream healthcare, and for which there is a registered body. Traditionally, this includes approaches such as acupuncture, homeopathy, aromatherapy, mindfulness, reflexology and reiki.

A number of M.E.-specific “alternative approaches” that claim to improve symptoms have been independently developed, often bringing together elements from a number of fields of study, and frequently based on anecdotal rather than published, peer-reviewed evidence. Examples include the Lightning Process, the Chrysalis Effect, Mickel therapy and reverse therapy.

We urge you to view with extreme caution any approach which claims to offer a cure and/or significant improvement, has not been adequately researched and published with peer-review, and requires the payment of large sums of money.

Other people with M.E. may recommend a particular approach that has helped them. While this can be helpful in considering the options available to you, please remember that you should only take medical advice from an appropriately qualified healthcare professional.

To decide what treatment is right for you, you should look at the evidence, and make sure you fully understand what the treatment involves. Writing in our membership magazine InterAction science journalist and M.E. advocate Julie Rehmeyer says:

"Above all: listen, but nurture your inner sceptic […] a kind of radical open-mindedness is essential. But because compelling personal stories can be dangerously seductive, especially when pain and emotion are part of the mix, scepticism is equally crucial."

See below for key questions to ask practitioners of alternative approaches. If you are considering seeing a private practitioner, set a budget before starting treatment and stick with it.

It’s your decision, and yours alone, which approaches you try, and which you don’t. You should never be pressured into trying an approach you feel strongly against, or be dismissed for wanting to try an approach that you believe might be of value to you.

Please remember that no-one, including you and the practitioner offering it, can be certain how you might benefit (or not) from a particular approach. They can vary substantially from practitioner to practitioner, and people with M.E. differ, sometimes greatly, in their response.

Our 2014 M.E. time to deliver survey of more than 2,000 people with M.E. found that 35% used an alternative approach to help them manage their symptoms. Of these:

  • 84% said they found meditation/mindfulness helpful or very helpful; 15% said it made no difference, and 2% said it made them a bit or much worse
  • 71% said they found massage, including lymphatic drainage helpful or very helpful; 17% said it made them a bit or much worse, and 11% said it made no difference
  • 69% said they found yoga helpful or very helpful; 18% said it made them a bit or much worse, and 14% said it made no difference. Please note that we did not ask respondents to detail the type or intensity of the yoga they used.
  • 64% said they found reflexology helpful or very helpful; 27% said it made no difference, and 9% said it made them a bit or much worse
  • 60% said they found reiki helpful or very helpful; 33% said it made no difference, and 7% said it made them a bit or much worse.

Questions to ask alternative practitioners

You should talk to your GP or specialist and ask for their advice first, especially if your treatment involves taking pills or medicines. Some treatments may interact so should not be taken together. Check with your doctor if you're not sure. The practitioner should also inform your regular GP or specialist of any tests or treatment.

If you are thinking of seeing an alternative practitioner, we recommend you ask them the following questions.

1. What are your qualifications? Always use a qualified therapist who belongs to a professional body. Most professional bodies will have a code of conduct which their members must follow. Ask what qualifications they have and which registered body they are affiliated to. Check that they have professional indemnity insurance. You could also contact the professional body to help you find a practitioner in your area.

2. What experience do you have with people with M.E.? How many people with M.E. have you treated recently? What have their outcomes been? Do you keep a record/audit of treatment responses?

3. How much will it cost? What are the usual minimum, maximum and average costs of treatment over time? Ask specifically about the cost of tests, drugs or supplements. Explain that you would like to know about all possible costs before starting any treatment. Do they offer any concessions to patients on low incomes?

4. Can you meet my health needs? When you are making your choice of practitioner you might want to think about your particular health needs. For example, if you use a wheelchair, is there good access? If you are sensitive to strong perfumes, do they use air fresheners or other products which may cause you discomfort?