Complementary therapy posts

[Victoria-NRAS]

Hi all

I have recently been asked what NRAS’s opinion is on complementary therapy posts on this forum, and I thought it might be helpful if I answer that on the site, so that everyone can see my response.

Firstly, you will notice that I use the word ‘complementary’ rather than ‘alternative’. This is because I don’t see non-drug therapies and drug therapies as being ‘either/or’, but rather working together, for those who choose to try both. This forum is here for people with RA/affected by RA to share experiences, ask questions and get personal opinions. NRAS’s however will always share evidence based information that has solid research behind it and we always try to ‘follow the evidence’. This may at times seem very ‘pro medication’ and that is because, as an evidence-based health patient organisation we don't advocate substituting one for the other. We do know from a huge amount of evidence that eating a healthy, balanced diet, not smoking, being physically active and exercising are all really important aspects of effective self-management and the more you do to adopt these practices combined with taking your meds as prescribed, the better your outcomes are likely to be.

There are some people who, perhaps due to their particular sub-type of disease appear to respond more positively to dietary changes or, perhaps sometimes due to having low disease activity or mild disease are able to control their condition without serious progression on complementary therapies or through lifestyle changes (such as diet and exercise). However, proven cases of this are small numbers, and we know from looking back to times when there were less or no medications available that severe joint damage was more common when people were not able to treat their condition with disease modifying anti-rheumatic drug therapies. The situation currently is therefore that evidence shows that the medications help to slow the progression of the disease and prevent erosions, while complementary therapies are more proven for symptom control (for example in having a natural anti-inflammatory effect). This is not to say that ‘symptom control’ is not also vitally important, as it can make a tremendous difference to quality of life. It’s important to also add that if people using the forum started to ‘advise’ using a particular drug therapy either in place of someone’s existing drug treatment or in addition to, we would have exactly the same view. The forum is about discussing your own experiences, asking others for their thoughts on this, rather than ‘promoting’ things widely and regularly that might have worked for you. RA is a complex syndrome with a number of different sub-types as I’ve detailed earlier and what works for one individual is unlikely to work for the whole RA population and that is demonstrated in drug therapy too.

We want this forum to be a place where people can discuss subjects related to RA safely, and ‘following the evidence’ is not as simple as not allowing discussion about some of the complementary therapies for which there is currently less evidence of effectiveness. More likely reasons for posts to get reported to us, or for us to take action (such as editing or deleting posts) is:

•The person is not posting as an individual and is promoting their website or selling a product.

•The person is posting on a particular topic on such a regular basis that it feels like this is taking over the forum.

•The person is not simply discussing a therapy, but suggesting that other forum users use this therapy, especially if suggesting this be used in place of their current prescribed treatment.

If you are concerned about any post on this forum, including posts which may go against the above, please can I remind you to use the ‘report’ button on the post or comment. The person who posted the comment that concerns you will not know that you have reported them and will only know they have been reported at all if we take action and make them aware that this is due to us looking into some concerns that have been raised.

Unfortunately, we have had a number of occasions over the years where well-meaning forum users have ‘called people out’ for posting spam or selling products, when actually they were just trying a product and wanted to share their experiences. As you can imagine, this can be quite upsetting and can put people off using the forum or make them feel that this is not a safe place for discussion. We would therefore rather you reported a post to us, so that we can look into it and make a decision on whether or not the post belongs on the forum.

Victoria

(Information & Support Manager)