MillionsMissing 2018 Graphics

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Thank you so much for sharing these...I especially love the flag graphic.

I am a little troubled, though, by the graphics vilifying Dr. Collins. I understand that the NIH hasn't given ME/CFS anywhere near the funding it deserves, but has his behavior towards our population been so bad as to merit this treatment? This isn't a rhetorical question, by the way--I honestly don't know his history, whether he's been an ally, an enemy, or simply indifferent.
 

SB_1108

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It is very easy for someone like Francis Collins to reallocate funds. The increase that Collins gave ME last year was peanuts, he is trying to do the minimum possible. Unfortunately, ME continues to be a low priority for NIH. The first MillionsMissing protest began because of a desire to replicate the ACT UP movement and to call out the inaction of public officials, specifically at HHS, CDC and NIH. This year the focus is getting the attention of the Director of the NIH.

On April 20th, Dr. Collins said “research takes time…”
https://www.reddit.com/r/science/comments/8dn0jo/im_francis_collins_director_of_the_national/dxozest
But people with ME have been waiting for 30 years. We don’t have time, people are dying. See this blog post: http://occupyme.net/2018/04/25/all-the-time-and-none-at-all/

MEAction released an article with more information on why we are targeting Collins:
https://www.meaction.net/2018/04/30/why-were-targeting-the-nih-for-millionsmissing/

If sharing these graphics make you uncomfortable, its ok not to share. They were created for those that can relate to this viewpoint.
 
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SB_1108

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Here are some quotes from articles in the past several years where Collins has promised to help the ME community:

Collins says NINDS Director Walter Koroshetz is “determined to move pretty fast on this,” including soon issuing a new request for proposals to extramural researchers. “Give us a chance to prove we’re serious, because we are” Collins says.
(http://www.sciencemag.org/news/2015/10/nih-refocuses-research-chronic-fatigue-syndrome)

Patients have long criticized the NIH for what they see as extreme underfunding of research into the illness, with the annual amount hovering around $5 Million or $6 Million for the past several years. That’s about to change, according to Dr. Francis Collins, Director of the NIH. “It will be substantially greater than the current five or six million a year,” he said in an interview with Shots. “We are going to ramp this up.” Collins said he’s ambitiously aiming for money to be dispersed in 2016.
(https://www.npr.org/sections/health...yndromeresearch-gains-funding-and-controversy)

“Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging,” said NIH Director Francis S. Collins, MD, Ph.D. “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.
https://www.nih.gov/news-events/new...ic-encephalomyelitis/chronic-fatigue-syndrome

Given the seriousness of the condition, I don’t think we have focused enough of our attention on this."
(https://www.theatlantic.com/health/...-for-chronic-fatigue-syndromeresearch/413008/)
 
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The article you referenced spelled out the reasoning for getting political, but it didn't spell out the reasoning for why one person, the Director, may be or is responsible for the monetary decisions which affect ME/CFS. Does he make the budget unilaterally all by himself? What is the process for how the budget actually gets decided?

The reason that I am uncomfortable with any sort of political campaign which vilifies any particular person is because if/when anyone assumes an adversarial and attacking stance against anyone then they are much less likely to allow themselves to be bullied into submission. Currently, we only have our own community aware of our plight and taking notice, NOT the general public. The actions we are taking are only going to serve to draw negative attention on ourselves, NOT promote empathy and not cause anybody to want to work with us if we are grumpy, angry and difficult to get along with.