Open Quality of life study

[Daisybell]

Moderator note - please be mindful and stick to posting on the thread topic - the quality of life study.

 

[Snowdrop]

Yes, thank you. I apologise to Jemel for my comment on snow in response to a for example comment regarding the questionnaire. Clearly Canadians have opinions on snow.

I hope this has not put JA off of any further interactions. Though I expect not.

It is almost inevitable here that when someone comes on who is not previously known to us we are a bit wary. There have been a number of others who have come here and elsewhere where many of us previously posted with a mind to asking for our input.

@Daisybell perhaps on the no doubt long to-do list for S4ME there could be a brief statement to welcome those who have this in mind along with some guidance as to what they might expect and what we are hoping for from such requests.

I'd like to ask @aguilarj2 if you have been looking for input elsewhere than S4ME as well. We are not yet a large group. Is there a minimum number you're hoping to get in response?

 

[Snow Leopard]

As a person of color, I have had instruments that interpreted my behavior based on the behavior of white people. I am well aware of the limitations of research instruments.

You are aware of the problems yet you use poor quality instruments anyway? A poor foundation means poor results. Just because developing an instrument properly can be time consuming doesn't mean it should be avoided.

You said you are not attempting to generalise, but that is the primary purpose of conducting research. Even in pilot studies, the goal is to demonstrate the plausibility of the method, which would of course mean demonstrating the quality of the instruments used, rather than simply choosing instruments simply because they are commonly used in the field.

The Modified Fatigue Impact Scale, the SF-36, the Narcolepsy and Sickness Impact Profile, the Functional Limitations Profile and the Quality of Life Scale are often used as PROMs and suffer from the limitations described in the aforementioned review, especially in survey based research like this that does not use additional methods to verify the quality/relevance, like qualitative interviews. The SF-36 and the Sickness Impact profile are specifically mentioned in the review and much up a substantial proportion of your survey.

Refining the appropriateness (beyond superficial measures like internal consistency) of the instruments to form a more tailored set will also allow much shorter surveys, which can also help in other ways such as reducing participation biases...

 

[WillowJ]

I would love to do a more qualitative study and added that so that the voices of people with ME/CFS can be added to the biomedical research. But I have to build a respondent pool for that to happen. I chose a survey methodology.

I think this is a valuable approach, if done right. We do need qualitative studies.

It's just that a lot of widely used surveys are not appropriate, and won't accomplish your goal.

My advice, fwiw:

Keep working on this, but refine your project.

Make it shorter so more people can participate (you're in the 1/4 "mild" group, as strange as it is to call any amount of ME "mild"; 3/4 of others are sicker than you, so be careful when generalizing from your experience to what others can do).

And try to find something that better captures the data you're looking for. Use a narrative approach, get different surveys, make and validate your own, a mix of these....

It won't be possible to please everyone, but you should be able to satisfy a supermajority.

Keep working. Have patience with the other patients. Be a good listener, and keep up the explaining work (also write shorter paragraphs ). You'll get it right.

 

[rvallee]

Clearly Canadians have opinions on snow.

Oh, yes, yes we do

 

[Alvin]

I just want to clarify a few things and I thought the best way was an open post. When I decided to conduct this study, I did not think it would be something that everyone would agree with because I am not doing biomedical research, which I think a lot of the ME/CFS community - including myself - hopes will lead to a treatment or cure. I decided to go the psychosocial route because colleagues, who are also mental health providers, and medical providers that I attempted to seek support from made negative comments such as "everyone is tired, I just had 2nd child I am fatigued. Just sleep it off" or my favorite, "You just need to lose weight, get on an anti-depressant, and workout more."

The problem is your solution here asks the wrong questions and its results will be unrepresentative of reality due to answering misunderstandings
Before i was diagnosed with ME i was getting tests done by a cognitive neurologist who specializes in dementia, which i don't have and even the testing proved it but when i was being questioned by the resident i was explaining that he was asking the wrong questions, by his questionnaire i had almost no symptoms because they were looking at the wrong thing. I have major cognitive issues which they picked up on in the testing but nothing about the physical symptoms. If you test someone's blood pressure when they have low blood iron your doing the wrong test even if the target is the right one.

Your not going to accomplish your goal if you ask about motivation when the issue is avoiding PEM. People will answer differently because some may think motivation means ability and others will think motivation means will. Much like using Oxford criteria will diagnose depression as ME if your tests are flawed the results will be flawed.