Enrolling: International ME/CFS Family Impact Study

What: Researchers at Cardiff Univeristy are looking at the impact of ME/CFS on quality of life of the patient and family members. The opportunity to take part in this international research study is still open.

Who: 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 person with ME/CFS and one for a life partner or family member. If you cannot be together to complete it, you can save and return.

The deadline for participation is 31st March 2021.

Where: You will need internet access to take part.

Take part at: https://redcap.link/MECFSFamilyImpactStudy

Additional Info:

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.

If you have already participated thank you for your participation, please do not complete the survey more than once.

If you are accessing the survey for the first time please use the link: https://redcap.link/MECFSFamilyImpactStudy

If you have started the study but lost the link to return please email [email protected] to be given your unique access code (please note this may take a few days).

Please share widely to encourage others to participate.

We have reached our initial goal of 500 fully completed surveys. With your help we hope to reach a new target of 1000 complete sets of data. The greater the reach of this survey the more we can improve international understanding of how ME/CFS impacts patients and their family members. Thank you and best wishes,

Dr Nina Muirhead and the Study Team at Cardiff University, United Kingdom.
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1 thought on “Enrolling: International ME/CFS Family Impact Study”

  1. Thank you for this survey. The impact of my very severe ME son’s condition on my life has been total. Since I’ve started caring for my son I’ve lost my personal life and my own health, and can no longer work … But I’m one of the lucky ones because my employer’s long-term disability is supporting us, along with GoFundMe and help from my other children. Otherwise, this situation would be impossible – as it is for far too many.

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