Poll and discussion: How much funding will the NIH provide for ME/CFS research

[Sean]

When do we actually find out?

 

[snowathlete]

maybe I'll start a poll at some point asking what we deserve? If anyone wants to beat me to it, please feel free, or it may never happen.

 

[Sidereal]

I see nearly half of us are pessimists.

How's this for pessimism: I think the lowest option (5-10 million) on the poll likely overestimates how much we'll get.

 

[Sidereal]

Hey, the person who had voted 1 billion changed their vote! Sneaky.

 

[BurnA]

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

It says it was published 10 Feb 2016.
It doesn't make for good reading.
Has this been discussed ?

 

[shannah]

Estimate for 2016 - 7 Million - hmmm!

Same estimate for 2017!

 

[NL93]

I may hope that's a mistake..
I was expecting about 20 million, although it deserves wayyyy more. ME is one of the worst chronic illnesses you can have...

 

[BurnA]

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

It says it was published 10 Feb 2016.
It doesn't make for good reading.
Has this been discussed ?

Anyone want to discuss this ? @Simon @A.B. @Bob @Sean @TiredSam @snowathlete @Sidereal @Valentijn @SOC @Snow Leopard @Scarecrow

 

[Snow Leopard]

Anyone want to discuss this ? @Simon @A.B. @Bob @Sean @TiredSam @snowathlete @Sidereal @Valentijn @SOC @Snow Leopard @Scarecrow

Still a magnitude of order lower than would be expected based on the (societal) burden of disease, we've still got a long way to go.

If they increase the budget by ~30-40% each year for 10 years, we'd get there.

 

[A.B.]

Without knowing how they make this estimate, one should not read too much into it. It may be a simple extrapolation from previous years. Wait and see.

 

[Scarecrow]

Anyone want to discuss this ? @Simon @A.B. @Bob @Sean @TiredSam @snowathlete @Sidereal @Valentijn @SOC @Snow Leopard @Scarecrow

I predicted a hopeful $20-30 million in the poll but am honestly not surprised to see an estimate of $7 million at this stage. The infrastructure needs to be developed for the money to be spent productively.

 

[Simon]

Just repeating this

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

It says it was published 10 Feb 2016.

Chronic Fatigue Syndrome (ME/CFS)
actuals:
FY 2012 $5m
FY 2013 $5m
FY 2014 $5m
FY 2015 $6m

estimates:
FY 2016 $7m
FY 2017 $7m

Didn't they get the memo about ramping up spend? That's not remotely an appropriate level of funding to tackle this illness. I hope this is an administrative mix up, rather than a true reflection of how much the NIH intends to invest in mecfs in the next two years.

 

[BurnA]

Without knowing how they make this estimate, one should not read too much into it. It may be a simple extrapolation from previous years. Wait and see.

Wait and see what ?

This is the estimate.

This sends out the wrong message completely.
If they want to send out a message and develop infrastructure they need to show that there is money there to be spent.
There are researchers being declined funding at these low levels as it is, increasing spending by 1m won't probably won't even cover the rejected applications never mind allow for an increase to attract new researchers.

They should at least estimate 20m to get attention. If they don't spend it all in the first year or two no big deal, but at least the message gets out.

 

[duncan]

It would appear that someone missed the memo about the NIH's new commitment to unraveling the ME/CFS conundrum.

 

[Sean]

There seems to be a zero missing from that number.

 

[NL93]

Or maybe they mean 7b instead of 7m

 

[shannah]

It seems to me back in the fall this number read $0.00 and there was a campaign to reinstate it - which it was after a few weeks.

Perhaps they prefer to leave the official budget as is and draw the actual funds from other sources for now.

 

[TiredSam]

Anyone want to discuss this ? @Simon @A.B. @Bob @Sean @TiredSam @snowathlete @Sidereal @Valentijn @SOC @Snow Leopard @Scarecrow

It's obviously a disgrace, but at the moment it's only an estimate, who knows who plucked it out of the air and what it's based on. I optimistically hope that if there's any encouraging progress in the research over the next couple of years, or attitudes to ME/CFS (which, again optimistically, are showing some signs of improving), then the amount invested in research may increase dramatically and these estimates confined to the dustbin of history where they belong. I'd say it's a case of wait and see at the moment, and if nothing has changed by 2017 then it'll be time to man the barricades again.

 

[BurnA]

It's obviously a disgrace, but at the moment it's only an estimate, who knows who plucked it out of the air and what it's based on. I optimistically hope that if there's any encouraging progress in the research over the next couple of years, or attitudes to ME/CFS (which, again optimistically, are showing some signs of improving), then the amount invested in research may increase dramatically and these estimates confined to the dustbin of history where they belong. I'd say it's a case of wait and see at the moment, and if nothing has changed by 2017 then it'll be time to man the barricades again.

Yes but it's an estimate which shows an intention. If they intended to spend more it would be built into the estimate. In any case an estimate is generally a +/- figure of a certain value for example 10% not 100%.

Cant remember who said it but if you dont look for something you can't find it. Why do we have to wait for encoraging results to get funding when we need funding to get any results never mind encouraging results.

If they were serious about this disease they would have addressed this issue long before now. This is worse than Walitt and FMD control groups. This is neglect. I don't understand why more people aren't up in arms about this.

 

[Bob]

My guess is that this is a case of departments at the NIH not communicating with each other, and the new systems and structures for ME/CFS not having been finalised yet. The new structures are currently in the process of being set up. We've been told that there will be progress and announcements.