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Welcome to our new forum -- Institute of Medicine Government Contract

Ember

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Thank you! :)

Some threads in this new forum were previously listed under “General ME/CFS News,” some were under “Action, Alerts and Advocacy,” and one remains under “Petitions.” Situated now under “Advocacy and Fundraising,” this grouping doesn't gain much prominence. If I'm not mistaken, the XMRV forum once had equal status to such major groupings as “Upcoming ME/CFS Events,” “News and Research,” and “Advocacy and Fundraising.” Would it be possible for this new forum to be given equivalent status?

Does all news and any petition related to the IOM contract now belong in the new forum?
 
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Ember

We have put the IOM forum in 'Advocacy and Fundraising' which includes petitions because all the threads are related to advocacy issues and or petitions.

We are trying to keep all the IOM threads together, so yes new threads should be posted in this forum.
 

Ember

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Would it be possible for the IOM forum to be given a status equivalent to the major groupings under “News, Research and Campaigns,” i.e., “Upcoming ME/CFS Events,” “News and Research” and “Advocacy and Fundraising?” Wasn't the XMRV forum given such prominence? The new forum could then be given its own subheadings, such as “News,” “Action Alerts” and “Petitions.”
 

Mark

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Would it be possible for the IOM forum to be given a status equivalent to the major groupings under “News, Research and Campaigns,” i.e., “Upcoming ME/CFS Events,” “News and Research” and “Advocacy and Fundraising?” Wasn't the XMRV forum given such prominence? The new forum could then be given its own subheadings, such as “News,” “Action Alerts” and “Petitions.”
That wouldn't be consistent with the new structure of the forum sections (implemented earlier this year) which groups things in a more logical way and keeps the size of the forum index to a manageable level. The XMRV forum had over 2000 threads; if and when the IOM forum starts approaching that size I guess we'd have to consider restructuring to give it its own section, but for now it's one of the smallest forums we have so I don't think subheadings are justified.
 

Delia

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That wouldn't be consistent with the new structure of the forum sections (implemented earlier this year) which groups things in a more logical way and keeps the size of the forum index to a manageable level. The XMRV forum had over 2000 threads; if and when the IOM forum starts approaching that size I guess we'd have to consider restructuring to give it its own section, but for now it's one of the smallest forums we have so I don't think subheadings are justified.

With all due respect, This is a very time sensitive issue, and if and when the number of posts ever became that large, the time will be lost.


I first learned of this issue from the action alert on the home page on or about Sept 22 when I first came back to PR.

I scrambled. I got everyone I knew to write letters. I even specially wrote appropriate sample letters, from the template linked here, for my friends and family to use.

Next thing the contract was signed.

The announcement here said: check back for further instructions for what to do next. I told my friends to wait, and once that was up I'd tell them what to do next.

I depended on Phoenix Rising.


Well, it's nearly a month and PR never followed up. Leaving PR members to scramble and have threads all over the place and no where to get concise information.


We have lost incredibly valuable time.

I don't think it needs to be said we are all sick people, some of us very, very sick. As are you all in Admin, I realize.


Please, please help us.

Please don't put an administrative rule above the needs of your subscribers.

Thank you for your work and consideration in this. I realize you are likely a volunteer.
 

Andrew

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I'm all for consistent organization, but urgency is also an issue. I think this could be put at the very top, even in it's own forum. And then later when this becomes old news, it can be moved down into the logical place.

And with that said, I also want to thank all of you for all the work you put in, day in and day out, despite being sick.
 

Delia

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That wouldn't be consistent with the new structure of the forum sections (implemented earlier this year) which groups things in a more logical way and keeps the size of the forum index to a manageable level. The XMRV forum had over 2000 threads; if and when the IOM forum starts approaching that size I guess we'd have to consider restructuring to give it its own section, but for now it's one of the smallest forums we have so I don't think subheadings are justified.


Is it possible to put a brief note on the blog/home page with a link here? Maybe that would be a more feasible solution?

I definitely want to make it easy for Admins and easy for those who are struggling to communicate with each other to find each other.

Thanks again!
 

Mark

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Is it possible to put a brief note on the blog/home page with a link here? Maybe that would be a more feasible solution?

I definitely want to make it easy for Admins and easy for those who are struggling to communicate with each other to find each other.
I've been discussing the options for publicizing the IOM issue with some of the other PR volunteers today. We've come up with a plan that will put prominent links to the IOM forum, and to a forthcoming PR article on the IOM, on both the forums and website/blog. It's going to take a few days to organize all this, but I expect that to be done by early next week.

I also posted the following on another thread in answer to a question about what PR is doing about the IOM, and I'd ask for your patience while we set all this up:

We're working on getting a couple of articles out about the IOM next week, with the aim of them appearing at the top of our monthly newsletter which is due to go out next Thursday. I'll probably add a commentary/introduction on the IOM to the newsletter.

The situation around the IOM contract has evolved rapidly, which has confounded our attempts to get an article ready - we had at least one article that had to be pulled because it was out of date by the time it was ready. This contract has (apparently deliberately) been announced and managed in such a way that there has been no notice and little time for the advocacy community to respond - so it's been hard for everyone to get organised in time. Unfortunately this has all happened while I've been on holiday, and we're short-staffed as it is.

However, we've had a couple of articles on it, and we have a couple more lined up. We're also working on getting some permanent, prominent links about the issue on the forums and homepage. I'm sorry if our response has not been as quick as some people would have liked, but at the end of the day the reason for that is short-staffing, not lack of will, so anybody who's willing and able to help relieve the pressure on our small team of writers, editors, moderators and sys admins is more than welcome to contact me. Meanwhile, we'll get something up as soon as we can - thanks for your patience.
 

Delia

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I've been discussing the options for publicizing the IOM issue with some of the other PR volunteers today. We've come up with a plan that will put prominent links to the IOM forum, and to a forthcoming PR article on the IOM, on both the forums and website/blog. It's going to take a few days to organize all this, but I expect that to be done by early next week.

I also posted the following on another thread in answer to a question about what PR is doing about the IOM, and I'd ask for your patience while we set all this up:

The last thing I want to do is to bash fellow people with this illness and ones who are working as volunteers for my benefit and the benefit of other PWCs.

But, I hope you can understand why patience with this situation sadly isn't possible. A situation that was not caused by you or PR, but has put us all scrambling and under intense deadline.
 

taniaaust1

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Thanks Mark and whoever did it for clearing announcing this new forum. I like how you've made the fact that we have this new forum prominent by doing that. Thanks :) . I hope you will leave that there like that so help draw attention to the OMI issue.
 
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Hi Kina,

I found two more threads that belong to IOM. They are the blogs of articles but, they should probably be part of this IOM location?

http://forums.phoenixrising.me/index.php?threads/patients-to-dhhs-cancel-the-iom-contract.25366/


http://forums.phoenixrising.me/inde...determine-clinical-diagnostic-criteria.25448/

Thanks again for all the work you do. I really appreciate it.:thumbsup:

We like to keep the articles all in one place but I could post a thread with links to the articles so they aren't missed.
 

Nielk

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We like to keep the articles all in one place but I could post a thread with links to the articles so they aren't missed.

Thank you. I guess we could do this for any future IOM articles as well?