Open NIH Focus Group on PEM

[Andy]

Overview
The NIH is currently looking for volunteers with ME/CFS to participate in a focus group that will be used to learn more about PEM in daily life as well as to hear about your experiences with Cardio Pulmonary Exercise Testing (CPET) if you have experienced it.

Who:
The study is run out of the National Institute of Neurological Disorders and Stroke (NINDS). The qualitative expert is Barbara Stussman, a Survey Statistician at the National Center for Complementary and Integrative Health.

When:
Ongoing

https://www.meaction.net/2019/01/07/nih-pem-focus-group/

 

[ME/CFS Skeptic]

I would like to participate but I suspect this is for US residents only. The announcement reads:

We will also be collecting medical records about your diagnosis.

I suppose that will be difficult, from outside the US.

 

[NelliePledge]

I would like to participate but I suspect this is for US residents only. The announcement reads:

I suppose that will be difficult, from outside the US.

I think it is progress that they’ve using telephone meetings for the focus group though. Organisations engaging with people with ME should be looking at using technological solutions as the default approach.

 

[Invisible Woman]

I would like to participate but I suspect this is for US residents only. The announcement reads:

I suppose that will be difficult, from outside the US.

It might still be possible. If you were prepared /able to get a copy of your own records and pass on the information they required.

 

[Ravn]

Hmm... looks like this study would exclude all of us who experience PEM as a result of talking on the phone.

 

[MSEsperanza]

Hmm... looks like this study would exclude all of us who experience PEM as a result of talking on the phone.

Indeed, I wonder how many of us are able to talk one to two hours on the phone? On my (rare) best days, my limit is 30 to 45 minutes.

I really like the idea of an NIH focus group on PEM and CPET (see the recent discussions on diverse S4ME threads). Could anyone please ask the NIH to make other communication paths available?

 

[Barry]

Hmm... looks like this study would exclude all of us who experience PEM as a result of talking on the phone.

Indeed, I wonder how many of us are able to talk one to two hours on the phone? On my (rare) best days, my limit is 30 to 45 minutes.

If the researchers are serious they should be able to factor this into their trial design, and have mitigation strategies.

 

[Webdog]

They say there's no compensation for participation, but they forgot about the payback.

Hopefully, the NIH learns PEM can last for days, weeks, or months. It doesn't resolve as quickly as many doctors think (or the CDC indicates).

 

[Denise]

If the researchers are serious they should be able to factor this into their trial design, and have mitigation strategies.

Crucial word "IF"

That said - I emailed to ask if caregivers can participate on behalf of patients who are too severely ill to take part by phone.
The response was that the focus group is limited to patients. However the contractor asked to speak with me separately about the situation of the patients I take care of.

 

[TiredSam]

The qualitative expert is Barbara Stussman, a Survey Statistician at the National Center for Complementary and Integrative Health.

Sounds like an easy job. I wonder what interested her about the National Center for Complementary and Integrative Health and their surveys.

 

[Webdog]

Got a call from the NIH this morning. They are doing phone interviews of people who signed up for the PEM focus group.

The NIH did not say what their selection criteria will be or how long the selection process will take.

 

[Andy]

Overview
The NIH is currently looking for volunteers with ME/CFS to participate in a focus group that will be used to learn more about PEM in daily life as well as to hear about your experiences with Cardio Pulmonary Exercise Testing (CPET) if you have experienced it.

They are particularly looking for people in the following demographics:

• Under age 30
• Asian
• African American
• Hispanic
• Male

https://www.meaction.net/2019/01/07/nih-pem-focus-group/