Recently, the US National Institutes of Health (NIH) put out an RFI – a ‘request for information’ – asking patients and patient advocates to tell the Trans-NIH Working Group on ME/CFS what kind of opportunities there are for studying the illness, what technologies and tests might be utilized in studying it, and what challenges ME/CFS research faces today.
#MEAction has put together a survey that asks what you would like the NIH to study. While the NIH is a United States-based entity, we are a global community with a global problem, and welcome input from everyone who has a stake in this illness: patients, caregivers, physicians, and those involved in advocacy. There are many preselected options for you to rate, and there are also open-ended questions at the end of each section where you can propose ideas of particular interest to you.
While the NIH is a United States-based entity, we are a global community with a global problem, and welcome input from everyone who has a stake in this illness
Each item has what is intended to be a neutral description of the research issue. if you don’t understand an item, please feel free to look it up online for more information, or skip that item altogether.
#MEAction must submit its response by the deadline of Friday, June 24, and we will need some time to analyze the data we have gathered; so if you are interested in helping out, please fill out the form within the next few days.
Remember, too, that you can submit your ideas as an individual, whether or not you also take part in our survey. But by putting our voices together, we will be heard all the louder, so the more voices, the better.
The survey will take anywhere from 10 to 30 minutes to complete. If you suffer from brain fog, you can leave the tab open on your computer and just answer a few questions at a time over the next several days.
The survey form is here and if you wish, you can also contact the NIH directly with your suggestions via [email protected]. More detail about the RFI can be found here.
Some people have asked if they can have a pdf version of the survey to share with physicians or use in advocacy. We have created a pdf of the survey in a readable format that you can access here. Note: this is only a pdf / image of the survey’s questions. To complete the survey, you would still have to click on the link above, or the button below.
Thank you for your participation – your voice and your opinion matter.