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Trump specifically targetting "chronic fatigue syndrome" funding for cuts

Sorry, this article has already been put into a couple of other threads already but I thought it deserves it's own thread due to what it tells us.

In its budget proposal for FY2017, The Trump administration additionally proposed cuts totaling $314 million for five spending categories at the CDC. The five include public health programs, which would see $65 million less in FY2017 under the Trump administration proposal.

“This would eliminate or reduce less effective or duplicative research and disease-specific programs such as the Prevention Research Centers, Chronic Fatigue Syndrome, Cancer Registries, Prion Disease, Injury Control Research Centers, Climate Change, and Tobacco Prevention Research,” the budget proposal stated.
My bolding and font size change for dramatic effect. :)

http://www.genengnews.com/gen-news-highlights/trump-proposes-immediate-12b-cut-for-nih/81254107

I know that this is far from a done deal, it has to go through Congress and, recently, all sides there seem well disposed towards maintaining and increasing research funding. But when our condition is being specifically targeted, can we take the chance? So I'd plead with our American members to contact their representatives, especially if they are Republicans, to push them not to support these proposed cuts.

ETA: Solve ME/CFS have put together details of how to find your representatives details and what to say and do - http://solvecfs.org/action-alert-call-or-e-mail-your-member-of-congress/

They are also, in coordination with MEAction, setting up advocacy efforts in DC, more details here from Solve, click here, or from MEAction, click here
 
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Mary

Moderator Resource
Messages
17,335
Location
Southern California
Thanks for the update @AndyPR - this is horrific. FWIW, a majority of Americans do NOT support Donald Trump. Most people I know are just as horrified by him as the rest of the world. How did he get elected? It gets a little complicated and I won't go into it here. This may be too political to post here. and if it's removed, okay.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
"Be very careful what you wish for...you may just get it!"
Yeah all those morons sure got what they wished for...alas rest of the world has to live with putting an evil, ignorant, stupid, useless SOB in the Whitehouse, too, blerg!

Trump & Co are servants of Beelzebub, Dark Lord of the Fly Away Hair and Shit For Brains
(and old fashioned as it is beyond my humorous take, I mean that in the darker sense as well)
 

ash0787

Senior Member
Messages
308
Sounds bad on the surface but without going into specific details I cant condemn it yet ...

When it says 'this would help eliminate less effective research' are we sure its not referring to the psychological subset of the CFS research ? or is that the minority of what is done in the US, in contrast to the UK ? or do most NIH grants go to biomedical research ?

Also I'm a little confused because the thing I always hear is that the NIH barely gives researchers any money for CFS related proposals and notably declined Dr Davis on multiple occasions.
 

Murph

:)
Messages
1,799
Luckily All my favourite researchers are looking into Systemic Exertion Intolerance Disease!

(I honestly wonder if you can hide from a bureaucratic axe by labelling your disease differently. Probably)
 
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Forbin

Senior Member
Messages
966
This seems to be the document where the quote can be found:
This would eliminate or reduce less effective or duplicative research and disease specific programs such as the Prevention Research Centers, Chronic Fatigue Syndrome, Cancer Registries, Prion Disease , Injury Control Research Centers, Climate Change, and Tobacco Prevention Research.
http://www.eenews.net/assets/2017/03/28/document_gw_06.pdf

It's actually a sort of spreadsheet:
CDC Cuts.jpg

It may be hard to see at this resolution (and impossible if you are not logged in), but this cut is aimed specifically at the CDC's Public Health Program.

I'm not trying to be Pollyanna about this, but cutting "duplicative research" at the CDC into CFS does not seem to be the elimination of all funding for ME/CFS at HHS. I'm not even sure what the CDC is doing in regard to CFS these days, other than maintaining a website. Given the CDC's past efforts to "help" us, such as their studies linking CFS to childhood sexual abuse, etc., I'm not so sure that I should mourn this cut, so long as ME/CFS research continues to be funded at the NIH.
 
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While I can understand the argument that the CDC has been crap in the past, therefore them losing the funding they use on ME would be no bad thing, I take the broader view. If an area of governmental funding is ever lost completely, reinstating it will not be an easy thing to achieve, and given that overall funding for the NIH is under threat as well, I think we should fight to retain any funding that we get for our condition as much as possible.
 

Forbin

Senior Member
Messages
966
It looks like eliminating the CDC's budget for CFS was the CDC's idea. Basically, it looks like they want to keep the money but use it for other things instead of their current CFS program. Perhaps they think those other things might have more impact on CFS than what they are doing right now, but it's not very clear to me what their intent is.

This is from the CDC's "Overview of the Budget Request" 2017:
Chronic Fatigue Syndrome (-$5.4 million)

The FY 2017 budget request reflects the elimination for Chronic Fatigue Syndrome (CFS). The goal of CDC’s current CFS program is to develop tools to gather and analyze surveillance data and to educate clinicians and the population based on the results of evidence-based studies. Over the past five years, NIH has been funded at a similar level to conduct biomedical research on CFS. CFS affects between one and four million people in the US, and this funding could be used to have a greater programmatic impact across CDC.
https://www.cdc.gov/budget/documents/fy2017/fy-2017-cdc-budget-overview.pdf
 
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RogerBlack

Senior Member
Messages
902
Is there a list of studies the CDC have funded in the past few financial years out of this?

...
https://www.cdc.gov/cfs/publications/index.html#pubs-2013
Falkenberg VR, Whistler T, Murray JR, Unger ER, Rajeevan MS. Acute psychosocial stress-mediated changes in the expression and methylation of perforin in chronic fatigue syndrome. Genetics & Epigenetics 5: 1-9, 2013.
Subjecting CFS/control patients to social stress test and then checking gene expression over time, with unclear interesting results.

Dostalek M, Gardner I, Gurbaxani BM, Rose RH, Chetty, M. Pharmacokinetics, pharmacodynamics and physiologically based pharmacokinetic modeling of monoclonal antibodies. Clin Pharmacokinet 52: 83-124, 2013.
Not CFS related.

Reeves WC, Lin JM, Nater UM. Mental illness in metropolitan, urban and rural Georgia populations. BMC Public Health. 13:414, 2013.
Call georgia numbers, as people 'are you OK' and for those that answer no, investigate what's up. I could find no clear prevalance figures for CFS in this, which is odd.

Brimmer DJ, Maloney E, Devlin R, Jones JF, Boneva R, Nagler C, LeRoy L, Royal S, Tian H, Lin JM, Kasten J, Unger ER. A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome. BMC Res Notes 6:309, 2013.

Gao J, Gurbaxani BM, Hu J, Heilman K., Lewis G, Emanuele II VE, Davila M, Unger ER, Lin JM: Multiscale analyses of heart rate variability in non-stationary environments. Front Physiol 4:119, 2013.

Gurbaxani BM, Dostalek M, Gardner IB. Are endosomal trafficking parameters better targets for improving mAb pharmacokinetics than FcRn binding affinity? Mol Immunol 56: 660-674, 2013

Murray JR, Rajeevan MS. Evaluation of DNA extraction from granulocytes discarded in the separation medium after isolation of peripheral blood mononuclear cells and plasma from whole blood. BMC Res. Notes 6:440, 2013.

Halsey NA, Griffioen M, Dreskin SC, Dekker CL, Wood R, Sharma D, Jones JF, LaRussa PS, Garner J, Berger M, Proveaux T, Vellozzi C; Hypersensitivity Working Group of the Clinical Immunization Safety Assessment Network, Broder K, Setse R, Pahud B, Hrncir D, Choi H, Sparks R, Williams SE, Engler RJ, Gidudu J, Baxter R, Klein N, Edwards K, Cano M, Kelso JM. Immediate hypersensitivity reactions following monovalent 2009 pandemic influenza A (H1N1) vaccines: reports to VAERS. Vaccine 31:6107-12, 2013.

Brimmer DJ, Campbell C, Bonner K, and Lin JM. News from the CDC: Chronic fatigue syndrome (CFS) and standardized patient videos – a novel approach to educating medical students about CFS. Transl Behav Med 3:338-9, 2013.

Gurbaxani BM, Querec TD, Unger ER. Controlling for population variances in health and exposure risk using randomized matrix based mathematical modeling. Lecture Notes in Computer Science 7812: 184-192, 2013.

Some of these do not seem particularly targetted at CFS, and if they come out of the CFS budget, are of questionable value.
Can anyone find more recent information and study funding levels?
A number of the prevalence studies don't seem to be being done elsewhere and are moderately valuable.

I would be interested to know how useful their education campaigns have been.
This could in principle be one of the more
 
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Messages
10,157
Please note, we have removed a number of posts on this thread as they are rule breaches. We have a rule that states that any posts/threads of a political nature that are unrelated to ME/CFS will not be permitted. The rule is as follows:

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Do not post about general politics or religion in threads, Conversations, blogs or in the chat rooms.

Views on religion and politics are personal and important to each of us. This forum is not the place to discuss general politics or religious beliefs. This type of discussion can be divisive and can easily lead to misunderstandings, animosity and unintended offense.

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Please keep the conversation related to ME/CFS.

Thank you.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
It looks like eliminating the CDC's budget for CFS was the CDC's idea. Basically, it looks like they want to keep the money but use it for other things instead of their current CFS program. Perhaps they think those other things might have more impact on CFS than what they are doing right now, but it's not very clear to me what their intent is.

This is from the CDC's "Overview of the Budget Request" 2017:

I would rather freak out now, deplete my energy etc..The sky is falling!

GG
 

caledonia

Senior Member
This would eliminate or reduce less effective or duplicative research and disease specific programs such as the Prevention Research Centers, Chronic Fatigue Syndrome, Cancer Registries, Prion Disease , Injury Control Research Centers, Climate Change, and Tobacco Prevention Research.

Depending on how you read this, it sounds like they're eliminating the entire CFS program.

The main thing the CDC has been working on is the CFS Multisite study. It started in 2012 and was to be a 5 year study, which means it will wrap up in 2017 (this year).

This isn't the first time CFS funding at the CDC has been a target. The funding was destined to be cut last year during the House or Senate Budget Appropriations, but restored when patients noticed the cut and complained.
 
It looks like eliminating the CDC's budget for CFS was the CDC's idea. Basically, it looks like they want to keep the money but use it for other things instead of their current CFS program. Perhaps they think those other things might have more impact on CFS than what they are doing right now, but it's not very clear to me what their intent is.

This is from the CDC's "Overview of the Budget Request" 2017:
Nice find. That document, as I understand it, is the CDC's response to the President's budget. So they have been told how much money they are potentially getting, and within that limit, they are saying what they would fund and what they wouldn't, and why.

As an example, this is an increase
Hearing Loss (+$10.0 million)
The FY 2017 request includes an increase of $10.0 million for a new hearing loss program to address the increasing rate of hearing loss in the United States as the population ages. These funds will support a prevention, awareness, and education program that targets children to older adults, low to moderate hearing loss, and various effects associated with hearing loss (social isolation, stigma, depression, inability to work). CDC will also conduct epidemiologic study of hearing loss, evaluate the effectiveness of the outreach programs, and identify prevention strategies.

as is this
Gun Violence Prevention Research (+$10.0 million)
The FY 2017 budget request includes $10.0 million for gun violence prevention research on the causes and prevention of gun violence, focusing on those questions with the greatest potential public health impact. This activity is in alignment with Now is the Time, which calls for research on gun violence prevention to equip Americans with needed information about this public health issue. These activities will be informed by the research agenda Consensus Report developed by the Institute of Medicine and the National Research Council in 2013 (Priorities for Research to Reduce the Threat of
Firearm-Related Violence).
 

Dolphin

Senior Member
Messages
17,567
Is there a list of studies the CDC have funded in the past few financial years out of this?

...
https://www.cdc.gov/cfs/publications/index.html#pubs-2013
Falkenberg VR, Whistler T, Murray JR, Unger ER, Rajeevan MS. Acute psychosocial stress-mediated changes in the expression and methylation of perforin in chronic fatigue syndrome. Genetics & Epigenetics 5: 1-9, 2013.
Subjecting CFS/control patients to social stress test and then checking gene expression over time, with unclear interesting results.

Dostalek M, Gardner I, Gurbaxani BM, Rose RH, Chetty, M. Pharmacokinetics, pharmacodynamics and physiologically based pharmacokinetic modeling of monoclonal antibodies. Clin Pharmacokinet 52: 83-124, 2013.
Not CFS related.

Reeves WC, Lin JM, Nater UM. Mental illness in metropolitan, urban and rural Georgia populations. BMC Public Health. 13:414, 2013.
Call georgia numbers, as people 'are you OK' and for those that answer no, investigate what's up. I could find no clear prevalance figures for CFS in this, which is odd.

Brimmer DJ, Maloney E, Devlin R, Jones JF, Boneva R, Nagler C, LeRoy L, Royal S, Tian H, Lin JM, Kasten J, Unger ER. A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome. BMC Res Notes 6:309, 2013.

Gao J, Gurbaxani BM, Hu J, Heilman K., Lewis G, Emanuele II VE, Davila M, Unger ER, Lin JM: Multiscale analyses of heart rate variability in non-stationary environments. Front Physiol 4:119, 2013.

Gurbaxani BM, Dostalek M, Gardner IB. Are endosomal trafficking parameters better targets for improving mAb pharmacokinetics than FcRn binding affinity? Mol Immunol 56: 660-674, 2013

Murray JR, Rajeevan MS. Evaluation of DNA extraction from granulocytes discarded in the separation medium after isolation of peripheral blood mononuclear cells and plasma from whole blood. BMC Res. Notes 6:440, 2013.

Halsey NA, Griffioen M, Dreskin SC, Dekker CL, Wood R, Sharma D, Jones JF, LaRussa PS, Garner J, Berger M, Proveaux T, Vellozzi C; Hypersensitivity Working Group of the Clinical Immunization Safety Assessment Network, Broder K, Setse R, Pahud B, Hrncir D, Choi H, Sparks R, Williams SE, Engler RJ, Gidudu J, Baxter R, Klein N, Edwards K, Cano M, Kelso JM. Immediate hypersensitivity reactions following monovalent 2009 pandemic influenza A (H1N1) vaccines: reports to VAERS. Vaccine 31:6107-12, 2013.

Brimmer DJ, Campbell C, Bonner K, and Lin JM. News from the CDC: Chronic fatigue syndrome (CFS) and standardized patient videos – a novel approach to educating medical students about CFS. Transl Behav Med 3:338-9, 2013.

Gurbaxani BM, Querec TD, Unger ER. Controlling for population variances in health and exposure risk using randomized matrix based mathematical modeling. Lecture Notes in Computer Science 7812: 184-192, 2013.
I think you are right that most of the multisite studies so far published are not that interesting. However they have collected a lot of data so I expect future papers to be more interesting.
 

Dolphin

Senior Member
Messages
17,567
It looks like eliminating the CDC's budget for CFS was the CDC's idea. Basically, it looks like they want to keep the money but use it for other things instead of their current CFS program. Perhaps they think those other things might have more impact on CFS than what they are doing right now, but it's not very clear to me what their intent is.

This is from the CDC's "Overview of the Budget Request" 2017:
Chronic Fatigue Syndrome (-$5.4 million)

The FY 2017 budget request reflects the elimination for Chronic Fatigue Syndrome (CFS). The goal of CDC’s current CFS program is to develop tools to gather and analyze surveillance data and to educate clinicians and the population based on the results of evidence-based studies. Over the past five years, NIH has been funded at a similar level to conduct biomedical research on CFS. CFS affects between one and four million people in the US, and this funding could be used to have a greater programmatic impact across CDC.
https://www.cdc.gov/budget/documents/fy2017/fy-2017-cdc-budget-overview.pdf
Here is a post with the same wording from June 2016.

http://forums.phoenixrising.me/index.php?threads/cdc-2017-budget.45415/

So I'm not sure if that is an up-to-date link. Alternatively they are using the same wording.