New survey on the quality of life of ME/CFS patients and their families

[Hip]

Dr Nina Muirhead has organized a simple international online survey looking at the quality of life of both ME/CFS patients and their family members. This survey is open to all ME/CFS patients and family members who are both 18 or older.

Dr Nina Muirhead is a British dermatologist who was hit with ME/CFS a few years ago after glandular fever (mononucleosis).

Having experienced ME/CFS for herself, Dr Muirhead now tries to educate the medical profession about the realities of this illness.

She has produced an ME/CFS training course to educate doctors about ME/CFS symptoms, about the latest ME/CFS biomedical research, and to make doctors aware that graded exercise therapy can be harmful for ME/CFS patients.



There are two questionnaires in Dr Muirhead's survey, one for the ME/CFS patient, and another for a life partner or family member. Each of these two surveys takes about 5 minutes to complete.


➤ The survey is HERE


An article about Dr Muirhead's survey here.

 

[Sledgehammer]

Thanks for this,

Perhaps it's just me but I couldn't find the family / partner survey only the first part.
I did email the Uni but haven't heard back. Has anyone else had this issue?

 

[ruben]

A lady on Twitter summed it up perfectly when she said, "It needs to be recognized that people with ME/CFS lose their lives even if they don't die".

 

[Hip]

Perhaps it's just me but I couldn't find the family / partner survey only the first part.

Says at the info at the top of the survey page that:

The first part is to be completed by the person with ME/CFS.
...
The next part is to be completed by that person's life partner or a close family member.

So I am guessing that later on in the survey it will get to the family member part.

 

[Sledgehammer]

Says at the info at the top of the survey page that:


So I am guessing that later on in the survey it will get to the family member part.

You're on the ball. I thought the survey rotated back to square one and closed the page thinking it was a glitch.
All done now. Will look more carefully nex time

 

[Sledgehammer]

A lady on Twitter summed it up perfectly when she said, "It needs to be recognized that people with ME/CFS lose their lives even if they don't die".

Brilliantly put.

 

[gbells]

Letter to the UK Royal College of Physicians on their propaganda campaign to discredit ME as a mental illness.

 

[Sledgehammer]

Letter to the UK Royal College of Physicians on their propaganda campaign to discredit ME as a mental illness.

My GP's refusal to even engage in the possibilites that this disease really does exist is what led me here.
I even dumped a large amount of paperwork on their desk ranging from studies to media coverage.
They couldn't even look me in the face. At least I tried.

 

[BrightCandle]

I have given up with the NHS, it may as well not exist for all the actual medical care it offers me covid or not. I can't get medical care from it so its functionally not there. The only involvement they have now is I have to request drugs from my GP and bash them around the head when they mess up, its just a drug dispensary nothing more.

 

[Nic]

Something my Mum is struggling with is the frank conversations I’ve had in the past year regarding my advance directive. I’ve had an advance directive for several years now, but with the whole COVID situation I wanted to make sure she fully understands my choice not to receive life-saving care if such a situation should arise.
I’ve had ME now for over 11 years, and following treatment for Non Hodgkin’s Lymphoma in 2015-16, the ME has gone from bad to worse. I was assessed by a specialist in early 2012 as having moderate-severe ME, and am in no doubt that a similar assessment today would assess my ME as severe. I have been mostly bedridden for the last 14 months, with increased pain and sensitivities (including new food intolerances).
I am 46 and the thought of living another 40 years like this is far more terrifying to me than me not reaching 50. Without quality of life, I just don’t see the point in a seemingly endless existence filled with pain and suffering. If I’d have known that the chemotherapy that ultimately saved my life in 2015-16 would result in such a significant deterioration in my ME, and with it the low quality of life I now have, I would have refused treatment. I am now at a point where the only medical treatment I will accept is that which will alleviate symptoms, such as pain relief/ antibiotics. It’s hard to get doctors to understand this as they are hard wired to save and prolong life.
Much more honest discussions need to be had on the fine balance between quality of life and longevity- this needs to be centred on individual patients, as what is acceptable to one person may well be intolerable to someone else.