Open Quality of life study

Just because something is a "standardised" instrument doesn't mean it is reasonable or appropriate.

Zero PROMs for example have been properly tested for acceptability, understandability, relevance/appropriateness to patients and so on. The fact is the construct validity of such measures have not actually been tested in a reasonable manner in this group of patients.
https://www.ncbi.nlm.nih.gov/pubmed/21590511

Reliability coeficients and Cronbach's Alpha are insufficient to determine validity because the correlations can be biased by a wide variety of factors - particularly common biases in questionnaire answering behaviour (participation bias, social desirability bias etc), but also methodological and design biases.

Likewise, most if not all of these items have not been tested for whether the scoring methods are reasonable in this patient group (many questionnaires have questions that are poorly designed which would technically require non-linear or even disordered scoring in subsets of patients if these scores were to reflect reality). Or likewise, whether each set of items actually scale.

This is why many patients do not like participating in such surveys and why you will necessarily get biased / low quality results that are difficult to generalise. This is a widespread problem across the field of health psychology and related fields and will continue until new/younger/innovative researchers realise the methodologies commonly used in the field are crap and choose to fix the mess.

 

There's something about working out in cold weather that is deeply satisfying.

But you do have to experience for it to make sense

You also adapt to cold weather. After a few weeks of very cold weather, -5C seems almost mild.

 

I had -20C last week, even down to -25C for a bit.
It sucked.

 

We've had 3 days of snow cover here in my area of the UK, only about 2 inches or so, today it is mild and more or less all gone. I too love shovelling snow, I'm on a corner so have a fair bit of pavement to clear (not that I'm expected to here in the UK) I also clear the path in front of both my neighbours.

Sadly here in the UK the majority of people have a very selfish attitude, if they clear their drive they just pile the snow up on the pavement and block it hardly anyone clears the pavement.

Regarding the survey I've not bothered given the feedback about it so far.

 

I ordered a snow shovel (for my husband to use). Does that make me motivated?

 

Hello Everyone,

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." As a mental health provider and researcher for 20+ years, I know the difference between depression and the widespread exhaustion and pain that I live with daily. I don't sleep it off and I assume that many of you do not as well. But since falling prey to ME/CFS (mine is assumed to be a combination of genetic risk in that my mother has it and post-viral), I have changed my job from a top research university to a teaching university - essentially the land of plenty to the land of scraping by. I am very unhappy with my forced employment relocation. I am also in the process of selling my house because I cannot manage the house given the limitations in my life associated with this disease. I would love to garden (not shovel snow - sorry) and turn my house into a smart house, but some days I can't make it through an 1-hour television program. I don't see friends and I am not in a relationship and I realize that my health limitations make that impossible.

So I decided to challenge these notions that we are malingering or truly depressed by showing that our quality of life has changed or changes by severity of symptoms. In fact the preliminary results shows this hypothesis to be supported. As for the instruments, they aren't perfect. Some were developed for other chronic diseases such as MS and then tested with samples of people living with ME or in the case of the Quality of Life measure people living with chronic debilitating diseases. The interpretation of the instruments, in all studies including biomedical, is up to the researcher. I do not think that people living with ME/CFS are malingering or depressed. I think that we can get sad because of our circumstances and the constant battles we face. I certainly have days when I give up and lay in bed, not because I am too fatigued or in too much pain, but because in that moment I look back at my life and wonder what happened and how am I going to continue to have a life. What I do think is that when mental health and medical providers react negatively and in stigmatizing ways to people with ME/CFS, it is because the narcissistic injury that our disease inflicts on them when they can't figure out the cause or how to "fix it." So rather than sit with that helplessness, they lash out. I saw similar things in the 1980s with HIV (then known as GRID).

Challenging the ideas that we are malingering or depressed can combat the stigma inflicted upon ME/CFS, this will also challenge the funding structures for biomedical research as it did in the early days of AIDS because, I believe, it stems from the stigmatizing attitudes. Thus, I believe we need psychosocial and biomedical research about us. 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.

Again, I know my survey isn't for everyone. I would rather people ignore it than become upset and have that impact their health.

Looking forward to your responses.

Jemel

 

Yes. Can he do my driveway?

 

Can we have some kind of competition for 'Most Astute Comment re The Experience Of Having ME/ CFS'...and can @TiredSam win for the above comment?!

We could have the abbreviation 'F.C' for those of a nervous disposition.

 

That never happened to me. -5C happened and I complained until the summer....

 

@aguilarj2

Are you aware of the pyschosocial research that has been done previously in ME? I read your post but it didn't indicate how long you've been ill.

Leonard Jason has been doing research on ME for some years now and I think he might have a study on QofL. Hopefully someone else may know better for certain and where to find the research.

I'm sorry if mentioning this is all old news and appreciate you participating here on the forum. Its always good to have more scientific input to what's going on.

As for the attitudes of your colleagues, many of us are certainly aware of the public's and med establishments prejudice toward PwME and understand how frustrating that is for you. There is so much happening at the moment that the tide of this attitude seems to be turning (although we will continue the good fight). It does take a while for attitudes to catch up with how things are trending and currently they are trending in a direction that better reflects reality.

Hopefully adding your voice to this long work toward a realistic view of ME will help hasten the day.

 

I've not had a chance to look at the survey yet but just wanted to say 'welcome' and send best wishes to @aguilarj2

As others have said, we tend to be quite critical of everything here, in a way that's probably a bit unusual and could seem inhospitable. If you stick around then I expect you'll see that it's (generally) criticism coming from a good place, often aimed at friends and people the critics respect (along with some we don't), and part of an attempt to cross every t and dot every i.

 

I just want to say I want to be in the Canadian « I love shovelling » gang also !

Shovelling was one of my favorite « sports »! I Loved the warm body feeling despite the cold, and enjoyed finishing with my parka unzipped and sweating.

This Superman is definitely an amateur and he will end up hurting his back, lol !

 

I have been ill since 1999 diagnosed in 2017. I will respond to other posts but I am having a bit of an episode right now.

 

Just clarify, I am not attempting to generalize and many publish studies talk about generalization when they shouldn't because their research designs do not support the task of generalization and I am not using PROMs because they are limited in many ways for many populations. The review you cite is one of many about the problem with PROMs, which is why a lot of researchers don't use them, but creating instruments for each populations

Just clarify, I am not attempting to generalize any of my results as that is inappropriate given my research design. Many publish studies talk about generalization when they shouldn't because their research designs do not support the task of generalization. I am not using PROMs because they are limited in many ways for many populations. The review you cite is one of many that discusses the problems with PROMs, which is why a lot of psychosocial researchers don't use them. Creating instruments for each population under study includes problems for researchers; even adapting an instrument is cumbersome and time consuming. 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.

 

Me too

 

I love shoveling snow, also! Unfortunately we aren't getting any this winter here in Vancouver.

 

I can send you some from Connecticut...

 

@TigerLilea we got sooo much snow here that it has piled as high as the street signs from all the plowing. I can barely recognize what street I'm on.