#MEAction's questions for NIH’s intramural study team

[Sasha]

Some excellent questions.

The US National Institutes of Health (NIH) is hosting a telebriefing on Tuesday to “share information about [their] upcoming activities and to gather feedback” from the ME/CFS advocacy community. They have limited phone lines and said they want to make sure to address questions from representatives from community organizations and leaders, so the call is not open to the entire public, but the NIH asked that everything discussed be shared publicly. We have recommended that all future calls be open to the entire community – YouTube Live is one of several technologies that would not limit participation – and that the call be recorded.

#MEAction sent a list of questions to the NIH based on the comments gathered from the community on our site. Thank you to everyone who participated. We have asked that these questions be addressed during the call and on their website. We will be sending additional community questions soon but felt that these urgently needed to be answered.

Here are the submitted questions, summarized and collated (we have also sent a link to the original questions and comments in full):

Read the rest: http://www.meaction.net/2016/03/04/meactions-questions-for-nihs-intramural-study-team/

 

[duncan]

I think I can sense the care that went into the wording of these questions.

I likely would have been a bit more strident, and I'm not sure that would have been helpful on my part.

I am curious as to how the NIH will respond to the Lyme questions. In particular, the question concerning chronic Lyme ought to be interesting as I'm thinking the people in Bethesda in charge of Lyme research put forth the opinion that chronic Lyme does not exist. Also, there seems to be some confusion about what asymptomatic can mean, but that may be due to the odd way the NIH used it in the initial protocol..

 

[Mary]

Thanks so much @Sasha - the questions look very good to me. No, they're not strident at all - just neutrally asking for information which I think is the best way to go --

 

[BurnA]

Thanks so much @Sasha - the questions look very good to me. No, they're not strident at all - just neutrally asking for information which I think is the best way to go --

But i think the questions could have been more pointed, without being strident.

Lets see the responses.

I hope we see engagement and change, not just lip service.

If we can get one thing changed, for me it would be patient numbers.
I don't see the point in asking for an MS control group and then asking them to consider dropping a control group.
In simplest terms we need a well defined (and plenty of) ME/CFS patient group and a healthy patient group.
We don't need any other control groups.

 

[Liz_999]

I strongly feel that the call needs to be recorded by one of the patient organisations that can listen in, if the NIH won't provide a recording.

If the patient community cannot ask question individually (which I don't particularly mind, as long as questions are passed on), it should at least get the opportunity to listen to the responses and hence know what exactly has been said. I'm not questioning the honesty or integrity of the patient organisations but often different people remember things differently and sometimes their accounts of the same event differs dramatically.

A recording would go a long way to prevent miscommunication, leading to wrong interpretations and perhaps overreactions.