Open Quality of life study

Hello,

I am Jemel Aguilar and I have been living with ME/CFS for a couple of years. As a researcher and academic, I typically study HIV but recently turned my research attention to ME/CFS. I wanted to understand how our lives are changed by this disease. Thus, I am inviting adults (ages 18+) with ME/CFS to participate in my research study. The study involves completion of an online survey (link below) that asks about your symptoms, quality of life, fatigue, and basic demographics. To participate, a person must be age 18 or older and must speak/read English.

Participating in the study entails completing an online survey that takes roughly 30 minutes and can be completed at one's own pace.

The final results will be aggregated and then analyzed for publication on a blog that I am developing, my profile on academia.edu, and in academic journal articles.

For more information, please feel free to contact Dr. Jemel Aguilar (Email: aguilarj2@southernct.edu or Aguilarj2 in this forum) with any questions or concerns.

By clicking on this link, you consent to participate in this research study and all information will remain confidential. Click here to participate: http://surveys.southernct.edu/TakeSurvey.aspx?SurveyID=9l5I8m3

 

Hello @aguilarj2

I started to complete your survey but have a question about how you are defining or interpreting 'motivation' as it has appeared quite often so far.

For example, your statement:

I have been less motivated to do anything that requires physical effort.

I am very motivated to shovel my sidewalk when it snows. But I have learned that that effort will make me very sick. So in that sense, I am not motivated to shovel my walk.

Can you please clarify.

(And #16 and #18 are the same question)


Fwiw, I have been HIV+ since 1998. I have worked in the HIV sector since 2002. I have worked with hundreds of people living with HIV.

I have had ME since 2012. I have talked to scores of people living with ME.

I can safely say 99% of the people I've met with HIV, are healthier than 99% of people living with ME.

 

Hi @aguilarj2

Do you mind a few questions?

- Do you have a fuller description of the goals of your research?
- Can you explain the source of these questions? I recognize SF-36/Rand-36 but not sure about the rest.
- This has 216 questions. It would be good to tell patients that as it might exceed their capacity

If you have not seen it, this site might be helpful
The NIH has published a website that recommends instruments to profile the disease across the range of domains of illness of ME. The link is here https://www.commondataelements.ninds.nih.gov/MECFS.aspx#tab=Data_Standards

 

https://www.researchgate.net/profile/Jemel_Aguilar

 

ScottTriGuy,

That is a good question. That question is part of a standardized instrument so the questions about motivation is about whether you want to do not. Not whether the outcome would be bad a result of doing the activity. Going back to you example, I never want to shovel snow even if it didn't have a negative impact on me, so I would answer no the

Hello,

Great question. The question is from a standardized measure and is asking whether you are motivated to do things given your fatigue. So going back to you example, I am less motivated to shovel snow (at all) because of the negative impact it will have on me. So I would mark almost always. I would encourage you to answer the questions based on what you have learned about living with ME/CFS versus what your general preferences are. Does that make sense?

 

Hi. Motivation is definitely a concern, but I would answer it based on your motivation given living with ME/CFS. I am less motivated to do things I know will lead to a crash. So I don't do somethings, pace myself for others, and complete tasks that I can get done with no problem. If you would like to send me a direct message with your email, then I can send you a link where you can save you answers and return to it at a later day and time.

 

This slightly concerns me. ME is often wrongly diagnosed as depression, and one of the ways it can be distinguished from depression is that if you ask a depressed person what they would do if they weren't depressed, they'd struggle to come up with much or find any motivation, whereas an ME sufferer will give you a list of things they'd like to be doing.

I am highly motivated to shovel snow. Everyone in Germany has a constitutional duty to shovel the snow in front of their house, if they don't the public shame is simply too great to bear. I used to shovel the snow in front of my house like a madman, regarded it as free exercise, and then I'd go and shovel the old lady's snow next door. I even shovelled snow that didn't need to be shovelled once I was in the swing of things.

Now I wouldn't dream of shovelling snow. Although I am still highly motivated to do it (I looked at the snow outside my house this morning and wished I could shovel it), I am also highly motivated to avoid doing anything which would make me feel like complete crap for the next few days. My motivation to avoid making my illness worse is stronger than my motivation to shovel snow. I am now very motivated to pace myself in a disciplined fashion, and approach that with the same dedication as I used to approach shovelling snow.

Suggesting that ME sufferers should regard themselves as not motivated to do things when in fact they are just motivated to avoid pain and suffering like everyone else doesn't sit well with me, and I'm concerned that collecting a bunch of questionnaires in which ME sufferers describe themselves as demotivated to carry out certain tasks when in fact they are nothing of the sort, they are just demotivated to cause themselves pain in the same way that everyone else is, might not be very helpful to us. For example if the results of the survey become known to those who like to regard ME as a psychosocial phenomenon they could be presented in a way to support that ideology.

 

My cognitive issues are significant so will not be filling out any survey although I see others have pointed out some issues that I find relevant.

Also, just a bit weird to pick snow shovelling. And kind of funny. I loved to shovel snow. No-one else I know does. They do it because it needs doing. I did it for the fresh feeling it gave me (I'm Canadian and love the cold).

 

Regarding the question about motivation I share the concerns that already have been worded.

I don't know how the answer could be interpreted in respect of the quality of life of a person with ME.

To me it seems that less motivation to carry out physical (or any other) activities could be both interpreted as decreasing and increasing quality of life.

First, which activities I consider as "anything that requires physical effort" has changed since I got ill with ME.

I surely didn't consider showering as "physical effort" before I was ill. Even sitting in the bed, typing on the laptop or speaking now require "physical effort".

Then, it depends on the impact physical activity will have on a person. When any activity I am able to do is unusually restricted by my health, and in addition any activity I perform will strongly and disproportionately restrict my ability to do other activities, I have to prioritize some few activities over others. I might be more motivated to have a short walk than to take a shower, but after three days without showering will decide to have a shower instead of a walk.

So, if I weren't motivated to have a walk I might be less sad to have to quit enjoying a walk in the park in favor of being able to take a shower.

Is my quality of life better or worse when I am less motivated to do so much things I was able to do when I was healthy or less affected by ME but am now not able to do any more? Would less motivation indicate that I am actually better in coping with the losses due to being ill than when I am still motivated to perform activities I can't actually perform or have to give up shortly after having tried to perform them?

 

Also occurs to me that if your are not yet familiar with this site it does come with a very useful science library:

https://www.s4me.info/forums/science-library-read-only.67/

Which also includes articles and critiques on some of the papers.

 

Hello sister from a different mister.

I picked snow shovelling because I love(d) it too. Especially crack of dawn before any one has walked on it. Sigh.

 

Yalls are crazy, eh?

@OP, perhaps we could rejig the study to make it ME accurate, if thats allowed (and the forum or posters get credit)?

 

I completed the questionnaire (although I agree that it was hard to read with the tiny typeface and dense blue background). I, too, found some of the questions worded such that it was hard to answer them in a relevant way for someone with ME, for example the 'motivation' stuff - I simply answered yes to all of those, because yes, I do feel entirely 'motivated' to do all those things - I just can't physically do them.

Also there seemed too many questions about psychiatric issues, such as the 'are you irritable'/'do you shout at your family' type of stuff, which felt very out of place in a study aimed at a biomedical disease. Would people with, for instance, cancer or heart disease be asked such questions? Neither should people with ME.

In any case, I hope your research goes well.

 

Yes. But not because of the ME. Because of the fucking circus that goes with it.

 

LOL, amen to that!

 

Canadian ME patients are very motivated to shovel snow, but are very irritated that they can't.

 

Some ME patients secretly shovel snow but pay the price.

https://www.youtube.com/watch?v=h7ni9inP3gU