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

How much funding WILL the NIH provide for ME/CFS research?

  • $5-10 million

    Votes: 17 43.6%
  • $20-30 million

    Votes: 13 33.3%
  • $50 million

    Votes: 2 5.1%
  • $100 million

    Votes: 7 17.9%
  • $250 million

    Votes: 0 0.0%
  • $500 million

    Votes: 0 0.0%
  • $1 billion or more

    Votes: 0 0.0%

  • Total voters
    39

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
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.
Like I said it's obviously a disgrace. By encouraging results I was referring to the present NIH study, which has had and still has some issues, but if it throws up something encouraging may change attitudes towards funding. By attitudes to ME/CFS I had in mind the "CDC study reveals CFS patients are severely physically impaired, but have normal mental health" thread.

I agree with what you say about if they were serious about this disease and neglect, it's shocking. But things seem to be moving slowly in the right direction, and we may be approaching a tipping point where everything changes, including funding for research. The current estimate could be no more than someone having to put a number in there to complete the table, so just extrapolating from the past. It may bear no relation to what really happens in 2017, when the landscape will hopefully look very different.

To be honest I don't know much about it, but was asked to comment so am just writing what occurs to me. I'm normally as cynical and critical as anyone on PR, but I can't help being a little optimistic at present that there is a chance that things are slowly improving.
 
Messages
2,087
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.

I hear you Bob,

I hope you are right but if I was choosing my battles this would be my priority. The more extramural funding there is for the likes of Lipkin, OMF etc, the better it is for all of us. We won't need to worry about dodgy control groups and lead clinical investigators.

Shouldnt we even ask the NIH for an explanation ? That's all i want. If they say its a mistake i'll believe them but i don't want to assume anything.

Like I said it's obviously a disgrace.

To be honest I don't know much about it, but was asked to comment so am just writing what occurs to me. I'm normally as cynical and critical as anyone on PR, but I can't help being a little optimistic at present that there is a chance that things are slowly improving.

@TiredSam I do share your optimism too, its just that i find this very disappointing, a lot more disappointing than any current flaws in the NIH study. When you see the figures for other diseases and then realise how little is known about or how few treatments there are for those diseases, its hard to imagine us getting anywhere in the next decade or two without serious funding.


ETA: just read the notes from the NIH phone call and it seems like the NIH are serious about increasing funding.
 
Last edited:

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Anyone got good figures on what the NIH spends relative to the disease burden? It would be useful for a blog I'm writing about yesterday's telebriefing. Thanks
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Anyone got good figures on what the NIH spends relative to the disease burden? It would be useful for a blog I'm writing about yesterday's telebriefing. Thanks
I don't have data on what you asked but I do have this image in case it helps at all. It shows $ per patient for three different diseases (you may have already seen this but thought I'd post it anyway).

NIH-spending.png


I don't remember where I got the image. I think it was from something document published by the OMF regarding their End ME/CFS research.
 

Comet

I'm Not Imaginary
Messages
693
I don't have data on what you asked but I do have this image in case it helps at all. It shows $ per patient for three different diseases (you may have already seen this but thought I'd post it anyway).

View attachment 15012

I don't remember where I got the image. I think it was from something document published by the OMF regarding their End ME/CFS research.

I can't bring myself to actually 'Like' this post, but thanks for posting this lovely graph. :vomit: I've been sick for 16 years. Given NIH research so far and that I am a taxpaying person with ME/CFS, I think I'd like to have my $32 back. :whistle:

And btw, the line in your signature, @ahimsa, always makes me giggle. :lol:
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
I can't bring myself to actually 'Like' this post, but thanks for posting this lovely graph. :vomit: I've been sick for 16 years. Given NIH research so far and that I am a taxpaying person with ME/CFS, I think I'd like to have my $32 back. :whistle:

I could be wrong but I think your $32 estimate is probably too high because there were some years when NIH spent even less than what they spent in 2014. Sad, but true.

And btw, the line in your signature, @ahimsa, always makes me giggle. :lol:

Always happy to make someone smile! :)

Have you checked out the joke of the day thread in Community Lounge forum? It's very long but there are some real gems in there.
 

Comet

I'm Not Imaginary
Messages
693
I could be wrong but I think your $32 estimate is probably too high because there were some years when NIH spent even less than what they spent in 2014. Sad, but true.

So much for my retirement. Rats.

Always happy to make someone smile! :)

Have you checked out the joke of the day thread in Community Lounge forum? It's very long but there are some real gems in there.
Thanks, I do check it from time to time. Nothing like a giggle to brighten a dreary moment. :lol:
 

Justin30

Senior Member
Messages
1,065
Just repeating this


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.

WE should be screaming at the top of OUR lungs to have this removed to reflect some of what was said by thr dirwctor of the NINDS on the NIH Phone Q and A by

2016
2017

Should read "Pending Review" or something along those lines.