RESULTS OF THE AMBER STUDY – For all participants

AMBER study Newsletter – Summary of results for all participants - July 2017

Why did we do the AMBER study?

Neurogenic bowel dysfunction (NBD) – constipation and/or bowel incontinence - is a common problem in People with MS (PwMS) and this can have a significant impact on their quality of life. Despite this, there is a lack of research into the most effective treatment. The AMBER study aimed to find out whether abdominal massage can help improve bowel problems in PwMS.

What did we do in the AMBER study?

With your help, we managed to recruit 191 participants with bothersome constipation into the AMBER study from 12 centres in the UK (10 in England and 2 in Scotland). We recruited all of the participants from January 2015 to July 2016 and the follow up of all participants was completed by January 2017.

Half of those in the study received advice on the management of bowel dysfunction (control group); the rest of the participants received the same advice and were taught how to perform abdominal massage (massage group).

We collected some information about each participant’s MS and bowel symptoms at the start of the study and we asked all to complete bowel diaries and various questionnaires at different stages of the study.Some of you who took part in the massage group also had a couple of telephone interviews at the start and towards the end of the study. The information in the questionnaires, the bowel diaries and the interviews were used to determine if the massage had a positive effect on your bowel symptoms.The main questionnaire used to determine if the massage was a success was the NBD score.

What did we do with all the information you provided?

From January 2017 until early summer 2017, we were making sure all the information you provided us was entered into the study database and everything was checked for accuracy.The study statistician then analysed these results to determine answers to the different questions and we are delighted to share the results with you.

What did we find out?

Twenty of you in the massage group were interviewed at the beginning and end of the trial as part of a qualitative sub-study. Of the twenty interviewed, fifteen perceived a positive impact from the massage:

“It’s back to what it used to be years ago before the MS.”

“It’s made a terrific difference.”

“I know when I go to the toilet I’m going to have a bowel movement.”

The improvements reported were greater ease, less pain and more frequency in passing stools. A couple of participants reported additional benefits: improved appetite, feeling less bloated, decreased sluggishness and improved energy levels. Some were also able to stop taking laxatives. In other cases, participants felt the massage was not enough on its own and needed to be used in conjunction with laxatives or other forms of treatment.

Five of those interviewed felt there was no improvement from doing the massage. They remained in the trial until the end, however, and three of them plan to continue with the massage post-trial.

Results from the NBD questionnaire and the other questionnairesshowed a slightimprovement in quality of life in the massage group but any observed improvement was not statistically significant.

The information from the bowel diariesshowed us that people who perform the massagegroup passed more stools on a weekly basis and felt that they had emptied their bowels more often.

We also discovered thatat the end of the 6 weeks of massage, nearly everyone (90%) were continuing with the massage and the majority of people were undertaking the massage themselves (only 11 people at the start of the trial had a carer or family member performing the massage for them).

There are no safety concerns with delivering the massage!

What the results mean for you?

If you were in the massage group in the study, and are still feeling the benefit then we are glad that this is working for you. You should continue to do the massage and spread the word about the AMBER study and the technique!

If you were in the control group, you should have received all the training materials and may have been offered the chance to have a demonstration of the massage technique by someone in your local research team. We would love to hear from you if you have incorporatedthe massage in to your daily life, so why not get in touch? Email us at .

What happens next?

The results of this study will be shared with doctors and other medical practitioners through national and international conferences in a detailed scientific report.If you would like to read more about these findings, a full detailed report will be available on the funder’s website, National Institute of Health Research the end of the year.

Access to the massage videos and other training materials for the abdominal massage are available at

Training and update sessions are planned throughout 2017:

  • One will be held at Revive MS Support Centre in Glasgow in September/October (updates available at
  • Please keep an eye on the AMBER website for details of other meetings.

Once again thank you for your participation in the AMBER study, without you we would not have completed the study. We enclose with this letter an invitation for your continued involvement in our patient and public group (PPI) and do hope that you may be interested in working with us in the future to promote public awareness and engagement with research, particularly in the area of MS and Constipation. Feel free to spread the word about us!

THANK YOU