#MEAction: NIH Update: Collins Will Meet With #MEAction Representatives!

#MEAction: NIH Update: Collins Will Meet With #MEAction Representatives!

The persistent dedication of our community to fight for our lives continues to yield results. We are pleased to announce #MEAction has secured a meeting with Dr. Francis Collins, Director of the National Institutes of Health (NIH), to discuss the demands our community sent to him in a letter this past May. We are working to schedule the meeting, and will keep you posted on the date.

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This meeting is a direct product of your efforts in May to advocate for our needs! We could not have reached this important step forward without your advocacy. As always, we are grateful to this community and honored to work with you! Together, our voices are a powerful force for change.

 

This is excellent news.
@JenB I hope your ready for anything during the meeting, i would expect him to claim they are already doing a great deal, they don't have funding, they are not getting applications and they have big plans and so on.
I would suggest brainstorming everything he is likely to say (good and bad) and have answers and documents and refutations ready for them.
Also i would expect empty promises, it may be worth asking for concrete numbers and dates. Also is this meeting recorded or otherwise on the record?

 

Excellent, I too hope Jen or whoever goes can cut through the inevitable self justifying film flam that will be expressed. I begin emails listing what is being done and showing how it isn’t enough, unfortunately in email situation its still the case they just reply with what they’re doing which i have already said was insufficient.

 

Happens to me all the time when I write to my MP here in the UK and they forward my point to the relevant minister. The minister (or rather, their work-experience assistant) sends me a form response listing what they're already doing, which was the very thing I was complaining about.

I agree that it would be good to come up with a strategy in advance to deal with this when it happens, which it surely will.

 

Amazing news! Thank you to everybody involved.

Will write about it in German. BTW I submitted German subtitles to the video back in May, but they weren't added yet. @JaimeS, could you (or somebody else at #MEAction) add them, it's just one click afaik. Would be great to have the subtitles before I post about it. Thanks!

 

I didn't know she is not doing well right now, my sympathies.

 

The #MEAction statement is dated Sept 6th and gives a list of attendees headed by Jen Brea. I hope she is doing well currently and does not have to overstretch herself to attend this meeting.

It is a hugely important meeting that I hope she can attend but we don’t want our advocates to become more ill: it’s always a problem with this illness. We don’t know how much energy we have, how much juice is in the battery and how far we can extend ourselves. Jen has other health issues too- sending her good wishes.

 

“The meeting will include #MEAction Executive Director, Jennifer Brea, #MEAction’s Director of Global Community & Campaigns, Ben HsuBorger, activists Terri Wilder and Mary Dimmock, patient and scientist, Dr. Becky Taurog, PhD, and patient and immunologist, Dr. Rochelle Joslyn, PhD” ( quote from #MEAction letter)

Very sorry to read Jen Brea’s tweets. I hope she received some good news at Stanford.Obviously she is struggling with many diagnoses.

As far as I understand, they have not yet set a date for the meeting but the 6 people above were named as attendees for #MEAction. Very much looking forward to seeing the outcome. Can’t help feeling it is a big step.

Edit: quote marks around MEAction statement which wouldn’t copy and paste as usual

 

Yes, I remember mentioning it. I'll go poke 'em again.

 

Also, we changed the title on this, because I feared people would think "addresses" meant that he was ready to, say, address everything on our #MillionsMissing demands.

We hope @Jen will be able to attend in person, but as she has publicly stated, her health is not great right now.

 

Have edited the title to this thread and the link.

 

We can only hope that is what happens
Perhaps its worth asking him what happened to the money that was supposed to be used but was usurped since 1989(?)

@Everyone
Should we as a forum put together a get well card or something?

 

I'd delete that swiftly if you want it to be a surprise.

....it may not be possible to make that a surprise!

 

Alvin and swift rarely belong in the same sentence
But it can be arranged, though how does one create a surprise on an open forum?

 

Exxxactly.

 

https://twitter.com/user/status/1071479339747815424

 

God Almighty the replies to his tweet...the infighting is so apparent, doesn't look good.