NIH to double funding for chronic fatigue syndrome

[taniaaust1]

That sounds awfully familiar only normally it's the NIH saying it.
Remember Ron Davis was turned down in the past, was that not a quality application?.

Ive always wondered what was the reason why Ron Davis had his application knocked back, does anyone know?

 

[Snow Leopard]

I'm really disappointed. I don't expect the NIH to hit $250m in year one, but after years of neglect we needed an order of magnitured increase, $50 million would have showed serious intent, $17m shows collectively the NIH is not committed, even if some individuals there are (and I have no doubt Vicky Whittemore is). Patients need and deserve more.

They can't ramp things up that quickly... But we need to insist that this is not enough, eg aim to increase by another $10-15 million each year over the next few years.

 

[Nielk]

They can't ramp things up that quickly... But we need to insist that this is not enough, eg aim to increase by another $10-15 million each year over the next few years.

They can if they ask congress. They did this with Zika virus.

They just see no urgency with us. They have strung us along for 39 years and are throwing us crumbs thinking that they will keep us quiet for a while.

 

[taniaaust1]

They can if they ask congress. They did this with Zika virus.

They just see no urgency with us. They have strung us along for 39 years and are throwing us crumbs thinking that they will keep us quiet for a while.

I bet they'd ramp up if they had a ME outbreak at their parliament house.

 

[Tuha]

i think if this money includes RAFs then it´s really disappointing. If it´s without RAFs then we will see yet how much it will be together.

Well, 100 % increase would be certainly very positive if there wouldnt be all ME history. We cannot forget that NIH and other health agencies and authorities completly failed and there were at least 30 years of neglect, ignorance and no funding. That´s why NIH should take responsability for this and the responsibility in this case is to increase significantly the ME budget. We deserve to get priority and significanter increase in funding what could help us to move ME research faster and to catch a bit all those lost years. I think our advocates should repeat this when they speak to NIH.

And I dont buy that there are not high quality researchers who could spend more money. Only Lipkin and Davis say that they would need 5 mil. a year. Then there are Montoya, Klimas, Batemen, Young, ....... Also there is a lot of promising research just we need to replicate it with bigger cohort and to compare to other diseases what is extremely expensive. We need to attract new researchers and so on. This money will not move us significantly

 

[Cinders66]

In a year I didn't expect it to shoot up to target but I did expect much more than this. The Lipkin project needs £5m so why isn't it getting it?
2 crumbs don't equal a slice of bread and I'm a bit concerned the double rhetoric is being used to sound impressive. They might think double triple etc rhetoric will do after years of no change on so little but it wont. We need USA advocates to keep up the presssure. Nothing less than big cash injection is enough.

 

[HowToEscape?]

They can't ramp things up that quickly... But we need to insist that this is not enough, eg aim to increase by another $10-15 million each year over the next few years.

I disagree. There may not be enough worthwhile projects to fund, but (effectivelynothing)*2=effectivelynothing. $15M/year is about $12 twelve dollars per person per year. Lost productivity of one working age person is on the order of $100,000 per year, and since ME/CF, unlike many other diseases, affects people of working age more than the retired the economic costs per person affected are greater than cancer, heart disease and others are headline NIH items. Compare the $$ spent on HIV/AIDS.

Asking for too little is self-defeating.

 

[Forbin]

Ive always wondered what was the reason why Ron Davis had his application knocked back, does anyone know?

I think it was explained here:

Historically, the NIH had been conducting a series of “trial and error” studies, and has now stipulated that there must be a clear hypothesis, which seemed reasonable enough, but as a result, Davis’ own grant submissions to collect the crucial data were rejected for lack of a hypothesis.

http://phoenixrising.me/archives/28153

 

[Simon]

They can't ramp things up that quickly... But we need to insist that this is not enough, eg aim to increase by another $10-15 million each year over the next few years.

I think they can go faster than increasing to $15m - thought I'm not sure what would be feasible. Certainly I think $250m in one year is unrealistic, and even if the NIH set that as a budget I don't think there would be anything like enough quality applications to spend the money. But given the years of neglect, I don't think this is good enough as a start.

Maybe $25m, a fivefold increase on historic levels, would have been a decent downpayment. But given we suddenly have a whole load of NIH institutes suddenly 'taking this seriously' - implying a lot more groups to pay into the pot - I can't see the $15m as anything but disappointing, although I do recognise it is the first serious increase in (forever?). Maybe it will go continue to ramp up at a decent rate in the next few years. If it's $93m for MS (I'd thought it was higher) that would do as a medium-term goal, and would transform the field.

I'm a little sceptical about settig a target so high that the NIH won't take it seriously, even if it goes down well with patients generally. Though of course I'd love to see the NIH spend $250m a year.

There will never be an ideal, exact figure, I'm thinking aloud here on what would be reasonable and achievable.

 

[Marky90]

Trump:

"Chronic what syndrome? Listen folks. China. Chiiiiiiiiiiiina!
They invent these syndromes; for us. For uuus. They INVENT it. Everyday! They`re so smart, Chiina.
And Mexico. They`re waiting. Theyre gonna take your job. They`ll take it!
Still wanna be disabled? U still wanna?
Thought so.
Chronic what syndrome..
Pfft.
Can u belieive these people.."

 

[mfairma]

How much money could be spent effectively is a question to debate, though they could clearly spend more than they've just committed, but the bigger issue is why they aren't announcing graded increases in funding over the next x years if their intention is to get us to the proper level and to spur interest in the field. They could come out with a full plan, but instead we always get piece meal. That's the problem.

 

[BurnA]

Do we even know that this information is verified?
Would it not be typical that NIH releases a statement or at the least a quote from Vicky or Director Colins?

 

[dreampop]

How much money could be spent effectively is a question to debate, though they could clearly spend more than they've just committed, but the bigger issue is why they aren't announcing graded increases in funding over the next x years if their intention is to get us to the proper level and to spur interest in the field. They could come out with a full plan, but instead we always get piece meal. That's the problem.

AFAI diseases don't have "set levels" or sometimes people think the NIH has a pool for each disease. Within institutes diseases broad ranges and I think grants are approved with respect to this broad criteria. Correct me if I'm wrong, I've been researching this and its quite confusing. This is why Cort has gone on for years about CFS not being in an institute (well, part of the reason).

Its really, really important that researchers keep submitting grants even if they get rejected. Its a legal basis you can point towards discrimination. And, yes, there are more interesting research projects they could be pursuing. The problem is if they aren't getting grants they have to come up within themselves (via rfas or inhouse projects). So part of the reason I see this as good is that they have recognized the need to be active in pursuing research - it will be $8.5 in a single year. There simply aren't enough grant proposals for $90M increase if isn't done through RFAs.

Which brings us to the problem of the NIH working group, its members and their ability to find the interesting research projects and reach out to them (Lipkin and Davis are the two best imo). This is why we need people at the NIH whose sole focus is ME/CFS. My suggestion was a CFS division under the director, similar to what aids has. Hire 2 or 3 CFS researchers to guide that program that would consist of RFAs and inhouse studies. Under a program like that huge sums wouldn't be wasted. It could be a coordinated effort to track down all the loose ends that pop up in individual studies but are never followed up one.

To force this change requires a massive public campaign or possibly through the courts.

 

[NL93]

https://twitter.com/i/web/status/797223480710270976

 

[Kati]

https://twitter.com/i/web/status/797223480710270976

Oh dear. Do not add gasoline in the fire...(not you, @NL93 )

 

[Denise]

Oh dear. Do not add gasoline in the fire...(not you, @NL93 )

Perhaps he is indicating that NIH needs to do more to partner with the patient community.
Or perhaps I am confused.

 

[Jo Best]

Just passing this on - that the spending on the other diseases in this short video has decreased. In comparison with 2011, spending on HIV/Aids will be down by $59 million. The ME spending goes up by $10 million, but altogether the rest on the diagram go down by $143 million - https://youtu.be/Z6Yu-iNqmak (NIHspending2017 by ME Analysis)

 

[Denise]

Just passing this on - that the spending on the other diseases in this short video has decreased. In comparison with 2011, spending on HIV/Aids will be down by $59 million. The ME spending goes up by $10 million, but altogether the rest on the diagram go down by $143 million - https://youtu.be/Z6Yu-iNqmak (NIHspending2017 by ME Analysis)

This is an interesting point about the decreases for HIV, etc.
Given that NIH received a $2 billion increase, I wonder how that increase is being distributed.