Closed Recruiting: Measuring the Impact of (ME/CFS) on the Patient and Family using the EQ5D and FROM-16 questionnaire

[Trish]

There is also the very real concern for parents of children with ME. What happens to them should/ when parents die.

Yes, keeps me awake at night sometimes.

 

[dratalanta]

Does anyone know why this questionnaire requires the respondent's name? I couldn't find an explanation in the info sheet of why it was necessary.

 

[It's M.E. Linda]

Does anyone know why this questionnaire requires the respondent's name? I couldn't find an explanation in the info sheet of why it was necessary.

I am trying to find out whether there is an email address for you to send your question to.

 

[Andy]

I am trying to find out whether there is an email address for you to send your question to.

The study participation leaflet, and the first post in this thread, has contact email addresses for the researchers involved.

 

[It's M.E. Linda]

The study participation leaflet, and the first post in this thread, has contact email addresses for the researchers involved.

Absoutely. Thank you @Andy

Perhaps I should have said:

I have emailed Dr Nina to find out who would be the best person to answer this question/ which of the email addresses supplied would be the best to use.

(I had another question from a FB group to deal with at the same time)

@EducateME may not be able to appear on the forum regularly.

 

[cfsandmore]

I'm very foggy today, but my elderly mother helped and we filled out the survey. There is a little fear of my mother dying before I do. The social help here isn't good. I fear getting the coronavirus and the infection causing me to decline. I have great fear for my nephew and my cousin's children developing ME.

 

[EducateME]

Does anyone know why this questionnaire requires the respondent's name? I couldn't find an explanation in the info sheet of why it was necessary.

This is for communication only, it helps us ensure there is no duplication of respondents and we can issue a thank-you e-mail, the data is anonymous, stored safely and individuals would not be identified in published results. Some have forgotten their code and so it helps us get them back onto their original survey, so energy spent getting to the stage they had, isn't lost. Very best wishes, Nina

 

[Invisible Woman]

I hate questionnaires but.....this seemed like a worthwhile one & if I'm going to trust someone then Nina Muirhead seems a good bet.

So, done and IM has completed his part too.

 

[Andy]

@EducateME has been in touch off forum and has I asked that I highlight that this study is still open, until 31st March, and they would very much like more people to complete it. Note that if you started it and lost the link to return to the questionnaire then they offer a way to recover your progress.


The opportunity to take part in this international research study, looking at the impact of ME/CFS on the quality of life of both patients and their family members, is still open. The deadline for participation is 31st March 2021.

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.

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

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

If you have a family member who is still due to participate please could you let them know that the closing date is the 31st March 2021.

If you have started the study but lost the link to return please e-mail MEFROM16study@cardiff.ac.uk 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.

 

[MEMarge]

Last day to complete this research by Dr Nina Muirhead

Impact on patient and family of having ME.

 

[Andy]

Now published, BMJ: Impact of ME/CFS on the quality of life of people with ME/CFS and their partners and family members.... Vyas, Muirhead et al, 2022