From the ME Association website –
We are excited to announce a new international research study looking at the impact of ME/CFS on the quality of life of both patients and their family members.
This is a short and simple online survey designed to be accessible to all adults 18+, including severely affected patients.
• There are two questionnaires in the survey, one for the patient and one for a life partner or family member.
• If you cannot be together to complete it, you can save and return.
• People with ME/CFS piloting the survey found each questionnaire only took about 5 minutes to complete.
Please share widely to encourage others to participate. The greater the reach of this survey the more we can improve international understanding of how ME/CFS impacts patients and their family members.
“Having ME/CFS can have a huge impact on people’s wellbeing.
“We want to find out how ME/CFS affects the quality of life of the person with ME/CFS and their life partner or other close family member.
“This is important because this will help healthcare workers to better understand and meet the needs of families.
“Please help us by completing this short questionnaire.
“The first part is to be completed by the person with ME/CFS.
“Please note the term ‘usual activities’ in the questionnaire refers to the activities you were able to do before having ME/CFS.
“The next part is to be completed by that person’s life partner or a close family member.
“Please choose just one person to complete the ‘family’ section. It is important that both sections are completed.”
Thank you and best wishes,
Dr Nina Muirhead and the Study Team at Cardiff University, United Kingdom.