HHS, NIH, AHRQ and CDC respond to Aug 2015CFSAC recommendations

[searcher]

I am going to take the risk of jumping in here because I know Jen is out today.

Jen's announcement was from May 2014, which was only a few weeks after we started discussing ideas for the platform. The vision for the platform evolved a lot over the year while we were developing it (and continues to evolve every day.) But since day one we have always had a vision of the site as being a big tent that can help support and amplify all advocacy efforts for ME patients.

#MEAction has never advocated for the IOM criteria. I don't think it has any place in research. I share Jen's view stated earlier in the thread that all research should be doing using at least the CCC or ICC, and have consistently stated that position online and in private conversations.

 

[Nielk]

I am going to take the risk of jumping in here because I know Jen is out today.

Jen's announcement was from May 2014, which was only a few weeks after we started discussing ideas for the platform. The vision for the platform evolved a lot over the year while we were developing it (and continues to evolve every day.) But since day one we have always had a vision of the site as being a big tent that can help support and amplify all advocacy efforts for ME patients.

#MEAction has never advocated for the IOM criteria. I don't think it has any place in research. I share Jen's view stated earlier in the thread that all research should be doing using at least the CCC or ICC, and have consistently stated that position online and in private conversations.

Saying you don't promote the IOM as research criteria doesn't mean anything, since the IOM criteria are clinical criteria - not research criteria.

 

[searcher]

I don't support it clinically either. You had asked about whether our advocacy supports the IOM criteria, and it doesn't. We have used portions of the IOM report strategically for advocacy purposes, but have never supported the criteria. I also do not support the proposed name. At this point I don't see much of anyone supporting the criteria, either clinically or in research.

 

[Roy S]

https://twitter.com/i/web/status/672930543181410304

Folks, is this the best place to do this? Don't make me force a group hug. I'm 6'5", 190#. Nobody wants to see that happen.


Seriously, though, our community really needs a coalition to work out a unified set of goals and work together on the Washington stuff. The AIDS community did.

 

[JenB]

I am going to take the risk of jumping in here because I know Jen is out today.

Jen's announcement was from May 2014, which was only a few weeks after we started discussing ideas for the platform. The vision for the platform evolved a lot over the year while we were developing it (and continues to evolve every day.) But since day one we have always had a vision of the site as being a big tent that can help support and amplify all advocacy efforts for ME patients.

#MEAction has never advocated for the IOM criteria. I don't think it has any place in research. I share Jen's view stated earlier in the thread that all research should be doing using at least the CCC or ICC, and have consistently stated that position online and in private conversations.

Just to put a finer point on it. It is true that #MEAction has never advocated for the IOM criteria. But #MEAction does not have any formal or enduring position on that or any other criteria. You keep asking "what does #MEAction believe or advocate for?" and I keep trying to explain (I don't know how to make it more clear) that we don't have any formal positions. All Beth and I can do is tell you what our personal opinions are. How "MEAction" comes to have formal policy positions or if it should requires a process that has yet to be defined. In the past, we've done some of that by voting/polling, but even that has been ad-hoc. Our long-run goal is to be able to follow where the community leads but again, we haven't yet had the capacity to devise the right model for doing that.

Part of why Beth founded #MEAction is that we wanted to get past this constant boundary-drawing and litmus testing and take action and have impact on a bigger scale than we, the collective patient community, ever have before. Our position is that the challenges we face are much bigger and more important than what pulls us apart.

 

[JenB]

https://twitter.com/i/web/status/672930543181410304

Folks, is this the best place to do this? Don't make me force a group hug. I'm 6'5", 190#. Nobody wants to see that happen.


Seriously, though, our community really needs a coalition to work out a unified set of goals and work together on the Washington stuff. The AIDS community did.

The AIDS community could fight like cats and dogs, too.

We have something we are not quite willing to call a coalition that's developed here: http://www.meaction.net/2015/12/22/us-orgs-and-advocates-announce-new-working-group/ I don't know what will come of it but the Congress group is already doing some great work. It's incredibly hard working with people you don't agree with either on policy or tactics but I think we are starting to see some positive dividends.