Thursday, 27 February 2014

Clinic Speak: why do you use complementary or alternative medicines?

Do you use complementary or alternative medicines? Why? #ClinicSpeak #MSBlog #MSResearch

"What is complementary or alternative medicine (CAM)? CAM is any practice that is put forward as having the healing effects of medicine but is not based on evidence gathered using the scientific method. CAM consists of a wide range of health care practices, products and therapies, using alternative medical diagnoses and treatments which typically have not been included in the degree courses of established medical schools or used in conventional medicine. Examples of alternative medicine include homeopathy, naturopathy, chiropractic,energy medicine and acupuncture."

"In the study below 62% of MSers used CAMs in 2002, which dropped to 23% in 2009. Poor economic state and progression of MS was associated with less CAM use. I assume because of MSers being unable to afford CAMs and their perceived lack of efficacy, respectively. What is interesting is that CAM usage was particularly prevalent at EDSS stages of 3.5-4.0. Why? This is the stage of the EDSS scale when MSers mover from minimal to moderate impairment and when secondary progression sets in for MSers with relapse-onset disease. This is also when MSers realise that their disease is progressing and traditional medicine is letting them down or failing them."


"I always tell recently diagnosed MSers that they will go through an emotional roller-coaster ride similar to Kübler-Ross's five stages of grief. These can be memorised by the acronym DABDAA."

D - Denial (I don't have MS, you must have made a mistake)
A - Anger (Why me? What have I done to deserve getting MS?)
B - Bargaining (Are you sure I have MS? Can you please re-investigate me to make sure you have the right diagnosis? If I stop smoking and go onto this diet will my MS go away? What can I do to get rid of this disease?)
D - Depression (I fell terrible, my life is ruined, I am going to end-up in a wheelchair.)
A - Acceptance (I have MS, what can I do about it? How am going to get on with my life despite having MS?)
A - Anxiety (I can't sleep at night. I keep waking up and worrying about losing my job. How am going to look after my children? What if my partner leaves me? What is going to happen to me? Will my children get MS? Should I start a family? How am I going to meet anyone?)

"What I have noticed is that when MSers transition from the minimal to the moderate impairment phase they tend to go through these emotional phases again. I think this is when you realise that your MS is not so benign and it is likely to lead to progressive and irreversible disability. It is at this stage that you realise that traditional medicine has failed and you start looking around for alternatives. I personally don't have problem with my patients seeking CAMs, provided they can afford it and the CAMs they use don't come with too many risks. I an convinced that the process of being proactive, and self-disciplined, about a therapy is in itself helpful; it is my impression that it improves your mood and gives you hope. On the other hand being passive and accepting of the status quo is associated with low mood and poor motivation. This is why I personally subscribe to the holistic approach  to managing MS; this involves traditional medicine, lifestyle measures (diet, exercise, sleep hygiene, stopping smoking, mental activity, etc.) and CAMs if you so choose. What I don't do is prescribe or recommend CAMs; as a Western-trained neurologist I am card-carrying evidence-based practitioner and try an avoid adopting practices that are not evidence-based or have a compelling scientific rationale."


BACKGROUND: Complementary and alternative medicine (CAM) in chronic progressive diseases, like multiple sclerosis (MS), is highly prevalent. Up to now there are no satisfying longitudinal analysis about changes in using of CAM accompanied by influencing parameters like disease duration, stage of impairment or socioeconomic factors. This study captured the using of CAM of MSers in combination with disease progression.

METHODS: 119 MSers were asked about CAM utilization, sociodemographic and disease factors within the context of a semistructured interview at an interval of seven years. The depressive status was ascertained with the Beck's Depression Inventory (BDI). Differences of users and non-users were checked with diverse statistical tests.

RESULTS: Comparing both isolated measurements at second point, less MSers used CAM accompanied by worse socioeconomic situation and progression of the disease. MSers use CAM in a stage of illness, characterized by the Established Disability Status Scale (EDSS) between 3.5 and 4.0 points, signifying a transition from moderate to severe impairment, and a shorter duration of illness in comparison to non-users. Types of used CAM have been changed over seven years. Relaxation techniques and traditional Chinese medicine (TCM) are the favorite therapies at second measurement

DISCUSSION: As the key result of the study MSers use CAM in an early stage of the disease. Their EDSS lies between 3.5 and 4.0 points and they suffer medial two years shorter from MS than non-users. CAM could be an important appliance to cope with the disease.

CoI: multiple

5 comments:

  1. Prof. G, last year you posted another study on CAM, this one done in Denmark, with a much higher rate of MSers using CAM (http://multiple-sclerosis-research.blogspot.com.es/2013/04/research-complementaryalternative.html). This was more recent (2013) and with a bigger number of patients as this one (>3000)
    Out of this study, 50% of MSers using CAM did perceive an improvement in their symptoms or progression. This is better than what you get on most of your "western trained neurologists" treatments. I agree it is not class I evidence, but your posts don't help either to convince the administration or charity societies to start trials in this sense. Also when some small trials are published by "non western" neurologists you throw the baby away with the water in your blog.
    I wonder why you are pushing so hard to lobby for aggressive treatment and at the same time criticizing CAM. Fortunately outside of the UK (Germany, Italy) other prestigious MSologists are conducting clinical trials with CAM on MS.
    Oh, and you forgot to include your signature ("CoI: Multiple")

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    1. Anon 5:45:00 pm, the post you are referring to was done by the MouseDoctor (http://multiple-sclerosis-research.blogspot.com.es/2013/04/research-complementaryalternative.html); I also don't agree with your interpretation of Prof G's comments. My take on this is that he is supportive of CAMs, but can't recommend them as they are not back by evidence. Am I wrong?

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    2. No that's right. Prof G does support things with no evidence. Hence raltegravir.

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    3. If you don't try then you'll never get any evidence.

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    4. Anonymous 10:23:00 am

      You are getting confused between clinical research and clinical practice. Raltegravir is being tested in a clinical trial it is not being prescribed as part of routine clinical care. Clinical trials are how you generate evidence to inform clinical practice. The raltegravir trial is based on a body of scientific evidence that suggests HERVs may play a role in MS.

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