NIH's Francis Collins will be taking part in an Ask Me Anything event on Reddit, Fri 20th April

https://www.genome.gov/20519689/celebrate-dna-day-with-nhgri/

 

Is it worth signing up and asking things? Any idea what? I don't see an easy way of getting the NIH to comment on the problems with PACE, and that's all I really know about. Any suggestions?

 

#MEAction suggest some ways of framing questions to Collins here

https://www.meaction.net/2018/04/18...ncis-collins-anything-this-friday-at-2pm-est/

 

Bump - this is happening in just over 6 hours - countdown available here, https://countle.com/Eo180504J4

 

I'd forget all about PACE, the goal is more research money.


Just ask him why he doesn't fund ME research commensurate with the burden of the disease.

 

I am inclined to agree that it is not the best opportunity for PACE critiques, and he is not the best person to be pursuing about them.

Ask about the money, and where it is going.

 

His answer will probably be that they don't have the resources and his hands are tied and he is doing everything he can in the current climate (and then will explain what we already know or throw in a tidbit)
So whats a good reply to such an answer?

 

Don't care. Don't want to hear any more excuses. Find more money for us.

Tell every other NIH centre and department and unit that they are going to have to shave a quarter of a percent off their budget to fund our waaaaaaaaaaay overdue needs.

Sorry, but I really don't care about other diseases any more. Not until we get our fair share. Nothing more, but nothing less. When that is achieved, then I will get all generous and caring again for other diseases.

It is beyond outrageous and cruel that we have to keep begging for even token research funds. 6 million a year? You are going to have to add some zeros to that figure, and real soon.

ME/CFS is a special case. It has been so ignored and so underfunded for so long that it needs special attention to even start catching up.

I am in my mid 50s, and have been sick since I was 20. I am running out of time, and have run out of tolerance for any more excuses from the medical establishment.

If the director of the NIH can't change the funding situation for us, then who can?

 

Processes can be changed. Fact. Lost lives can't be returned.

 

Your not going to get any argument from me since i completely agree with you but you don't go crazy on someone who holds the purse strings and expect him to help you.
The reason i mentioned it was so we could have an answer for this likely response, and you get more flies with honey then vinegar. (usually).
That doesn't mean be doormat but it does mean asking strategically and making a case that gets us the money.
Can he unilaterally cut money from other diseases (if not then asking him to is a waste of this opportunity), does he have discretionary money available, can he make deals with commercial enterprises to get money on our behalf, are there other options that i have not mentioned?

 

My point is be ready for this answer and have a thought out answer ready. What options does he have that we can press for use to our benefit? If you want to win a battle it helps to understand how your adversary works and what his options are.
When you anticipate what unhelpful answers your going to get you can have responses ready to move beyond them

 

Sorry, @Alvin. Wasn't mad at you.

Just getting very frustrated that nearly 3 years after the IOM report we are still being fobbed off with peanuts, and some of even that small change is still being spent of fucking psychobabble 'research'.

Not interested in excuses any more. Where is the hard cash?

 

I understand, tell him off if you wish, will that get us money?

Are the dollar amounts to each disease decided by congress and unchangeable, can he get back the money that was allocated but not spent for two(?) decades for ME/CFS, does he have a discretionary account to draw on, can he lobby and successfully get more money?

 

Alvin, I hope you will be on reddit so you can ask those questions..

 

I will not unfortunately, and i don't have the knowledge of the NIH money constraints or procedures, though i hope someone reading this does and can ask excellent questions

Are you able to attend and ask the questions i have posted?

 

I am trying to get in at.present

 

Please everyone go upvote the questions about ME/CFS so they stay visible!
Also, many thanks to whomever has been giving them gold!