Leonard Jason wants ME/CFS patients to do a PEM survey

[Webdog]

For those interested in participating in ME/CFS research.

https://redcap.is.depaul.edu/surveys/?s=YJNCDPHXTH

We are conducting a research study because we are trying to learn more about the experience of abnormal responses to physical and/or cognitive exertion, which has been referred to as post-exertional malaise (PEM) in past research, in patients with Myalgic Encephalomyelitis (ME) and/or Chronic Fatigue Syndrome (CFS).

Due to an ongoing debate about how to define and measure abnormal responses to physical and/or cognitive exertion, the patient community aided in the development of this questionnaire to try to understand how this symptom effects these patients health.

 

[Mattie]

Done.
Good survey I think.
Took me about 15-20 minutes to complete.

 

[Marco]

Done.

That wasn't too bad.

 

[Keela Too]

Took me forever! Maybe I over think things!

But it's done - with one or two added comments.

 

[EzzieD]

Just finished it, thanks for the link! It's good to be able to take part in ME/CFS research that doesn't require one to be living in America and/or to have to travel - hope they get a lot of international response and that the survey results will be helpful for their research.

 

[adambeyoncelowe]

Done. Only took me 20 mins. It said it would take two hours--maybe we've rushed it? But I couldn't have spent two hours on it. It would have ruined me.

 

[Sly Saint]

says it should take 1-2 hours to complete. Maybe, if you can read the print which I found very hard to read (too condensed)......might give it another go another time.

 

[Keela Too]

says it should take 1-2 hours to complete. Maybe, if you can read the print which I found very hard to read (too condensed)......might give it another go another time.

If you use the "control" button and the rolly thing on the mouse, you can make the whole page bigger & the writing is then easier to read. I agree it was tough going.

 

[unicorn7]

Done

 

[Sunshine3]

Done, it wasn't too bad and covered alot. I noticed no mention of crashes brought on from social interaction such as visitors or chatting too long on the phone. A real debilitating and horrible part of my illness. I did add it in on my notes.

 

[ukxmrv]

I had to save what I could do and hope to come back to it later.

Cognitively it was a challenge and that is going to cause difficulties for some people

 

[Skycloud]

I've not completed it yet. I did find it difficult to include 'weird' symptoms which I find hard to explain and haven't got the energy to try. I'm also finding that although I can see the questions seem to be worded carefully they don't always fit with how I would put it. I'll give it another go tomorrow

I'm grateful for the chance to take part in research.

 

[mango]

Done It took me several hours (not including the many long breaks). Very hard work, and I wrote several long comments too.

I think it's really great that they are interested in trying to improve the definition and understanding of PEM (super important for so many different reasons!), and that they are asking for our input/experience like this.

I'm grateful for the chance to take part in research.

Me too!

 

[arewenearlythereyet]

Done

Pretty comprehensive if bit repetitive ..managed it by taking a break in the middle ...to be honest I can’t think straight now so I’m not going to bother critiquing the design ...just glad someone is asking questions to focus on this.

 

[andypants]

Done I finished it earlier today, but it was very nearly too much for one day. Glad to do it though, good questions.

I also included pem from social interactions, as well as any form of transport, in the notes. I found it hard to rate the symptoms, as they all seem equally horrible to me

 

[Binkie4]

Completed half and saved to finish later. Too much for one go.

 

[Dancer]

Done. Lenny Jason is a treasure. The very wording of his questions made me feel HEARD. Over the years he has really paid attention to patient's descriptions of their experience. How refreshing!

 

[Chris]

Done. A bit strenuous, but at least this made me smile:

feeling as if a guitar string is breaking inside your head

 

[Sunshine3]

Done I finished it earlier today, but it was very nearly too much for one day. Glad to do it though, good questions.

I also included pem from social interactions, as well as any form of transport, in the notes. I found it hard to rate the symptoms, as they all seem equally horrible to me

Someone who suffers from social interaction!! Isn't it an awful aspect of this illness..

 

[Andy]

It might just be me but there seemed to be a couple of oddly worded questions.

Can you be sensitized to particular triggers so they cause an even more abnormal response over time?

Is this asking if I COULD be sensitized? Or if I HAVE been sensitized? My guess is he's asking if I believe I have become sensitized. Maybe.

Has your ME or CFS illness been present for more than 50% of the time since you became ill?

So this seems to be asking if I have had ME for all the time I've been ill with ME.