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,

Facebook
Twitter
WhatsApp
Email

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.

Comments are closed.

Latest News

white rectangle with red splashes of tiny red dots in all four corners. #MEAction logo at the top. #MEAction Minnesota Helps Save Long Covid Program in red font.

Minnesota’s Long COVID Funding Saved from Elimination

We have good news! The first-in-the-nation Long COVID program run by the Minnesota Department of Health (MDH) has been saved from elimination! This means #MEAction will be able to continue its work helping Minnesotans with ME/CFS, Long COVID and related conditions access vital home and community-based support services, as part of our multi-year grant.   Last

Read More »

Millions Missing Scotland 2025 raises a red alert

On Wednesday 14th May 2025, #MEAction Scotland held Millions Missing Scotland outside the Scottish Parliament in Edinburgh. The rally sent a clear and urgent message to the Scottish Government to act on the £4.5 million pledged in the 2025-26 budget for specialist support for ME, Long Covid, and other similar conditions. This year’s theme, ‘Red

Read More »

Research Roadmap Petition

We reached 7,000 signatures on our last letter. This time, our goal is 10,000. Please sign the letter today and share it with your friends and family.

Read More »
Scroll to Top