What is this survey about?
The aim of this survey is to gather information on how CFS/ME* and FM affect women's experience of pregnancy, birth and childcare. It aims to give answers to some of the most common questions that women with CFS/ME and FM have, such as:
Will I feel better or worse during the pregnancy?
What is the best way to give birth to avoid a relapse?
Will breastfeeding make me feel better?
How much childcare support will I need?To date, very little research has been done on the effects of CFS/ME and FM on pregnancy and childcare and much of the information currently available is based on the experiences of only a few doctors and women who have written their stories.
This survey aims to be the first major survey of women with CFS/ME who have, or want to have children. It is being publicized amongst groups who support women with CFS/ME or FM, with the aim of gathering, for the first time anywhere, a large-scale statistical analysis of answers to the most common questions that women ask.
All replies will be treated as confidential and any quotes used in the final report will be credited anonymously.
Why should I take part in this survey?
Because you can make a difference. To date, very little research has been done on the effects of CFS/ME and FM on pregnancy, childbirth and childcare. Women with CFS/ME or FM who want to have children, or who are already pregnant, find that there is little information to help them answer the questions they have about their pregnancy, their birth options and how they will cope after the birth. This survey aims to provide answers to their questions so by taking part, you will be directly helping other women like you who have CFS/ME or FM but who still want to have a happy and healthy family.
Hasn't this been done before?
There has been one similar survey done already, although it was only about women with CFS/ME, not FM. It was done by 2 midwives in Australia and is known as the "Emerge report". You can find a copy of the report at http://www.afme.org.uk/~pregnet/html/emerge%20report.htm. But the Emerge survey was smaller in scope of questions asked that the current survey and only got responses from 27 women, which is a small group. This means that the conclusions of the report, although very interesting, are limited by the number of respondents. The current survey, although still limited in being mostly internet based **, aims to establish a more representative picture of mothers with CFS/ME and FM by collecting significantly more responses than the Emerge survey did. Some of the questions in the current survey were however also asked in the Emerge survey so it may also be possible to compare the 2 surveys and gain extra information in that way.
How long will it take me to complete the questionnaire?
It should take you about 20-30 minutes, although it could take more, depending on how much you say.
Why is it so long?
It looks long because it is designed to be as quick and easy as possible to complete. It will be largely a matter of ticking boxes and then adding comments on certain questions only.
How will I find out the results of the survey?
The results will be made available via this website and publicized via the same online support groups where the survey was promoted.
* Throughout this survey, the term CFS/ME has been used because this was the term used in the recent report by the UK Chief Medical Officer's Independent Working Party into the illness.
** There is also an option to complete the survey offline and /or in paper form but most of the publicity for the survey has been amongst online discussion and research groups.