ALERT: Senate Cuts CDC’s funding for CFS to Zero, gutting 50% of federal research funding for ME/CFS
NO Funding Cuts: One Clear, Consistent Demand for Equal Funding
By Robert and Courtney Miller and Cort Johnson
While patients advocate for Equal Funding for ME/CFS research, the Senate Appropriations Subcommittee quietly zeroed out CDC’s budget request for ME/CFS research.
One of the studies to be cut would be the CDC’s Clinical Assessment or Multi-site study. Dr. Peterson had this to say about that study:
“The CDC’s clinical assessment study is pivotal to patients with CFS/ME. It allows CFS clinicians to analyze our ‘classic’ patients for commonalities, subset distinctions and biological markers in a collaborative manner. The last few years of this work with Dr. Unger and the CDC staff has increased our understanding and evolved the spectrum of collaboration. Many more resources are required to expand on recent scientific findings.” Dr. Dan Peterson
Patients with ME or CFS only have two choices right now: either we go forward with one clear demand for Equal Funding for federal scientific research – which means no cuts! – or we go backwards. We need your action to restore precious funds!
We should be going forward now. The Institute of Medicine recently highlighted the “urgent need for more research” in February. In June, National Institutes of Health’s Pathways to Prevention Panel said “innovative biomedical research is urgently needed….”
Five hundred patients and caregivers wrote the Secretary of Health and Director of NIH in May highlighting these independent reports and demanding that research into our illness be funded equally with Multiple Sclerosis or Systemic Lupus, at more than $100 million per year.
Meanwhile, the Senate Appropriations Subcommittee quietly zeroed out to the only ea
rmarked funding for CFS in any health agency budget: they crossed $5.4 million out of CDC’s proposed budget and put “0” next to CFS.
Let there be no doubt, the NIH is watching this closely. NIH only spent $5 million last year on CFS research. Why should the NIH fund ME/CFS at $100+ million when Senate appropriators can get away with removing funding for the only line item ME/CFS patients have in the federal budget.
This cut isn’t about CDC’s bad history with CFS. It’s about whether or not CFS/ME patients will protest in one voice that it is time to fund us equally.
Huge ME/CFS Study Put in Jeopardy
At the heart of the CDC’s ME/CFS program lies probably the large ME/CFS study ever undertaken – the Multi-site (Clinical Assessment) study created by Dr. Andy Kogelnik.
We believe this project provides a distinct and welcome turning point for CDC’s CFS program. For the past three years, seven expert doctors including Dr. Dan Peterson, Dr. Nancy Klimas and Dr. Kogelnik have been collaborating with CDC’s Dr. Unger to study hundreds of ME/CFS patients. Throughout the process Dr. Unger has worked with the doctors to determine what to assess, what diagnostic markers to test for and how the study will be run.
Among others the study will help inform efforts to create a new definition, uncover subsets, produce new diagnostic guidelines, understand the course of the disease, and introduce to the public for the first time, treatments ME/CFS experts use to enhance the health of their patients.
Phase II of the study, underway now, will, also for the first time, ever assess large numbers of severely ill patients. The study will also include a large exercise study that will assess the effects of exercise on lactate levels, gene expression, cognition and symptoms.
This study will end if the Senate’s budget stays at 0 for the CFS program. That would be tragic.
Take Action
Please make it clear to the Senate Appropriations Subcommittee that ME/CFS patients deserve equal funding, not funding cuts. Cutting $5.3 million from CDC’s budget would cut federal research funding in half. That is going backwards for patients.
The question is for us as a community is whether we are going to allow anyone, on the heels of the IOM and P2P reports, to cut any part of the budget for ME/CFS. In order to be successful later we must take a stand now and say no to this bizarre attempt to cut the ME/CFS research budget in half.
ME/CFS support organizations (including Solve ME/CFS, the IACFS/ME, the Open Medicine Foundatoon, Mass CFIDS/ME, New Jersey ME/CFS and Conn. CFIDS/FM) have created their own letter and other efforts are underway to get doctors and researchers to protest this untimely cut to ME/CFS research.
Take Action with this Email Template:
Please email these senate committee staff and YOUR Senators. You can copy and paste the text below or change it as you see fit:
laura_friedel@appro.senate.gov
lisa_bernhardt@appro.senate.gov
AND your senators – find them here: http://www.senate.gov/
cc: courtneymiller999@gmail.com
Re: Restore Cuts to Chronic Fatigue Syndrome Funding in CDC Budget
I am very ill with Chronic Fatigue Syndrome (known as Myalgic Encephalomyelitis). We have suffered with the smallest budget at CDC and NIH for decades. I am distressed to learn that the Senate Appropriations Subcommittee has cut CDC’s budget on Chronic Fatigue Syndrome research to zero, and I need you to restore it to the same level as the House bill in the Conference Committee. (see: https://www.congress.gov/114/crpt/srpt74/CRPT-114srpt74.pdf pg 59)
This year, two independent panels of scientists – the prestigious Institute of Medicine and National Institutes of Health’s Pathways to Prevention Panel – both reported the same urgent need: “There is an urgent need for more research to discover what causes ME/CFS, understand the mechanisms associated with the development and progression of the disease, and develop effective diagnostic markers and treatments.”
I am disabled by CFS and I deserve equal funding, not zero funding. More than 1 million Americans have CFS, costing the US economy more than $20 billion annually. CFS is as disabling as late-stage renal failure and Multiple Sclerosis. There are no FDA-approved treatments or diagnostic tests. I want my life and health back, and I need medical research to solve my disease. Cutting CDC’s $5.3 million request reduces federal research funding for CFS by 50% at a time when we desperately need more scientific research. Please restore the CFS budget request and urge NIH to fund CFS research equally with Multiple Sclerosis.
Sincerely,
Name:
Years Ill:
City and State:
I’m not even shocked. Not even.
Hi, Just wanted to let you know that when I cut and paste the email, it copies with the background color, so it looks a little strange. If anyone knows how to correct this, please post a comment. I have tried highlighting the text then clicking on the no highlight for background color in Yahoo’s email program, but it doesn’t change anything.
Thank you, Cort, for posting this and making it easier for us to contact our representatives in DC!
Ok, I tried highlighting the entire body of email again, then going to text & background color icon at bottom of email. I clicked on black for text, then no color for background & it got rid of the beige highlighting. Nice to have one problem solved (:
It is easier to go to the PDF and Copy&Paste the template into your emails…Thank you to all who get the Fact we must Send One Message: More FUNDING for ME/CFS Now!
Copy the email text, paste it into Notepad (which strips out all the formatting) and then cut it from there and paste it into your email.
Hi Karen PT,
Have you tried cutting and pasting your message into a Notepad document and then cutting and pasting that back into your email? If that doesn’t work I’m sure you won’t be the only one sending a colourful email.
Jocelyn
I can help–here’s how to convert any formatted text (such as text with background color, bold, embedded links, etc.) to plain text only:
1) do a “copy” on whatever you want copied (Ctl C) 2) open Notepad and do a “paste” (or Ctl V) into Notepad which leaves you with plain text stripped of all formatting. 3) Now, copy and paste THAT Notepad text into wherever you need it.
Thanks LV 🙂
I believe Notepad comes in every version of Windows.
I am very ill with Chronic Fatigue Syndrome (known as Myalgic Encephalomyelitis). We have suffered with the smallest budget at CDC and NIH for decades. I am distressed to learn that the Senate Appropriations Subcommittee has cut CDC’s budget on Chronic Fatigue Syndrome research to zero, and I need you to restore it to the same level as the House bill in the Conference Committee
I am now 70 year old and I my life has been miserable for the past 40 years and I beleive something shoul really be done for people suffering from this horrible disease
Thank you
This is just… heartbreaking. With severity if this illness all we have left out of life is hope, and it seems everything is working to even take that away from us.
What justification could they possibly have for cutting after what IOM and P2P have reported???
What can international patients do to help?
I sent emails to the senate staffers and auto-responses. It seems they are all on vacation until Aug. 31 and by then they’ll have a boat load of email. So I am putting this in my calendar to resend, maybe more than once after the 31st. I also added in :”In contrast, Prion Disease which remains funded, effects only 1 person in 1,000,000, approximately 300 Americans a year.”. Also, someone on FB commented that one of the emails was returned as invalid. I got responses from all 4 so here are the ones I used.
‘Laura_friedel@appro.senate.gov’; ‘Chol_pak@appro.senate.gov’; ‘Alex_Keenan@appro.senate.gov’; ‘Lisa_bernhardt@appro.senate.gov’;. The letter on FB was different.
I am a 55 year old woman and can no longer work because of the disabling effects of ME/CFS. I have been working since I was 12 and never imagined I would have to file for disability assistance. It hasn’t always been like this. I put myself through college with two preschool age children in our home. I then continued my education after 8 years of seminary courses to be a Professional Church Educator. In 2003, after serving churches for years, Ijoined the staff of a 1200 member church. In 2011, I was struck with a severe case of Mono and influenza b. My pain was so severe, I had CT scans, thousands of dollars of labs done. All labs were normal but the excruciating pain never left and my fatigue was unbearable. In 2012, I fell and broke my ankle/leg. The pain increased again. I went from working 60-70 hour work weeks to barely 50. November of 2014 I finally had to resign the job I worked all my adult life to achieve. I am now mostly homebound, can only drive short distances, can’t grocery shop, housework, yard work, prepare a meal requiring more that 20 minutes. I require assistance for basic self care. I only leave the house for doctor’s appt. My life has been shattered by this disease because so few doctor’s treat patients like me, no reliable drugs are available, and very few research dollars are available for a disease that affects thousands of patients. Can you imagine what it would feel like to have the flu all the time? That is similar to what we feel 24 hours a day. We are too sick to testify to lawmakers and to advocate more than a few words in an email or letter. Please give the ME/CFS community hope by not only restoring research funding but increasing the dollars that can help us find a cure. Please help us move ME/CFS funding from DEAD last and get serious about research for this disease.
Give us hope again!
Sarah C.
I have submitted request to Last Week Tonight with John Oliver to make a report on ME/CFS
http://talk.hbo.com/t5/Last-Week-Tonight-with-John/Topic-idea-Senate-cuts-funding-for-CFS-down-to-zero/m-p/496181#U496181
Last Week Tonight is a weekly news comedy show but it is very respected and influental. I think it would immensily help us if they reported that the Senate has cut the funding for such a disabling illness down in half.
I left the link above. Please comment to show many people are interested in this topic. Feel free to correct me there in the comments if I wrote something you disagree with.
It’s HBO’s site and it’s really easy to sign up, you just need an e-mail address.
Surely it would make more financial sense to increase funding rather than reducing it!!! So that the millions of people who suffer from this totally debilitating illness can be restored to health and become financially productive members of the community once more. The savings in sickness and disability benefits alone would be enormous!!!! Please think ahead and deeper rather than this band-aid solution to economic juggling.
Yes indeed!
The swindle of the peoples health continues. I really really wonder, whats their motive behind all this? It really propel my assertion that there is crime and camaraderie going on.
To be honest I think it’s just ignorance. For sure it indicates they are not worried about an ME.CFS lobby. Well, hopefully now they will be more educated and a little more worried.
What if we’re not in the US? I can hardly write to “my” Congressman or Senator. Any ideas?
Chris, I’m in Europe and writing to the four named senators. I’m presuming we can write to them anyway even if we don’t have our own senator.
Yes, just write to the reps – register your discontent – and leave off your address. I think that will work.
Have you checked to make sure it’s not under SEID or somatization disorders. I’ve never seen a complete cut in funding for an illness before? It’s bizarre.
I agree; It is really weird. I don’t think anyone knows what happened. I think we just know that it has happened.
There’s only one CDC program for ME/CFS and it’s always been in this category. It would be nice if it had been moved but we would probably know about that. I think we would anyway. 🙂
Even though I’m not in the US, I’ve just sent an email to the 4 Senate Committee staff. After all, cutting research funding in the US seriously dampens all our hopes of effective treatment ever being developed!
Thanks Michelle!
I sent the following:
I am very distressed to learn that the Senate Appropriations Subcommittee has cut CDC’s budget on Chronic Fatigue Syndrome research to zero, and I need you to restore it to the same level as the House bill in the Conference Committee. (see: https://www.congress.gov/114/crpt/srpt74/CRPT-114srpt74.pdf pg 59)
If anything, funding for research on ME/CFS needs to be dramatically increased after decades of neglect by the CDC and NIH.
This year, two independent panels of scientists – the prestigious Institute of Medicine and National Institutes of Health’s Pathways to Prevention Panel – both reported that “There is an urgent need for more research to discover what causes ME/CFS, understand the mechanisms associated with the development and progression of the disease, and develop effective diagnostic markers and treatments.”
Researchers and clinicians at our top medical schools including Columbia and Stanford are stymied by lack of funding just as promising new research needs to be followed up with larger studies. Famed virus hunter Dr. Ian Lipkin, MD at Columbia has been reduced to crowd funding online to try to raise research dollars. The decades-long neglect of this illness by our health establishment is shameful and must stop now!
The IOM report estimated that this illness is under diagnosed and that as many as 2.4 million people are suffering from this devastating illness in the US alone at a cost of billions of dollars to our economy. The NIH spent $1 million of taxpayers money on the IOM report, and to ignore their findings and recommendations now is unconscionable.
I have been terribly disabled by CFS for almost 30 years. CFS is as disabling as late-stage renal failure and Multiple Sclerosis. There are no FDA-approved treatments or diagnostic tests. It is too late for me but I refuse to see the children and young adults coming down with ME/CFS loose their entire futures to this disabling illness without a fight. Cutting CDC’s $5.3 million request reduces federal research funding for CFS by 50% at a time when we desperately need more scientific research.
Have a heart and take the time to view the story of one young man with ME/CFS and show it to the subcommittee before a decision is made.
https://www.youtube.com/watch?v=9_HwOUiImvw
And here is the pdf version of the print story.
http://www.paloaltoonline.com/morguepdf/2015/2015_07_10.paw.section1.pdf
Please restore the CFS budget request and urge NIH to fund CFS research equally with Multiple Sclerosis. Thank you for your consideration.
Thank you so much for sharing your letter. I’ll be using the following links
https://www.youtube.com/watch?v=9_HwOUiImvw
http://www.paloaltoonline.com/morguepdf/2015/2015_07_10.paw.section1.pdf
in my letter too.
What a great letter Esther. I’m a little jealous…:)
I received the following automatic response which included a phone number for the subcommittee. I suggest we pick a day after they return, perhaps the first weekday after they return, to deluge them with calls. And get other ME/CFS groups to promote making calls that day.
Keenan, Alex (Appropriations)
9:03 AM (2 minutes ago)
to me
I am out of the office until Monday, August 31, with limited access to email until August 16. If you need assistance, please call the subcommittee’s main line at 202-224-9145.
Thanks
What about September 1?
I may have missed it but do we have a list of the members of the subcommittee in question? Then we could ask our senators to contact their colleagues on our behalf?
I am so over having this disease….. i’m absolutley tired of this nonsense. EVERYONE SEND EMAILS AND HAVE EVERYONE…. I MEAN EVERYONE… IN YOUR FAMILY SEND ONE TOO. If your mom and dad and siblings do too it will have much more impact.
I am devastated, depressed, frustrated and hopeless. I will send emails now and later and have my husband send some.
I love the idea of choosing a date to call that number and bombarding them with calls. I’m in. September 1, or whenever. Maybe we should call daily for a week. God, I wish we could stage a protest in front of the capitol. I wish we had a lobbyist. And thanks to all of you outside the US for sending emails. The more emails, the more likely someone will take notice.
Lisa
That’s a good idea. This is indeed when we could use a lobbyist to tromp on over there and ask what the heck is going on. As someone said – it’s is really weird.
Thanks for the links, etc. I sent the message to everyone. I think it’s called a Hail Mary.
Are those of us in the UK and other countries ‘allowed’ to email your senators over what is technically a U.S. funding issue? This news does, of course affect us all across the world. My life has been devastated since childhood with ME and I’m nearly 40, and the multi-site study and others mean the world to me too because we still look to the U.S. to lead the way for us all when our own government’s efforts are so pitiful.
You can just sign your name and country. What weight they will put on it I don’t know.
hey cort, some of us aren’t well enough to copy, paste or do much of anything but click onto a button. suggestions please? don’t even have a copier. we want to help and be heard BUT not strong enough. HELP please?
Petition on MEAction – http://my.meaction.net/petitions/reinstate-federal-research-funding-for-me-cfs
Letter on MEAction – http://www.meaction.net/2015/08/08/reinstate-cdc-funding-for-mecfs/
The letter had given me an error message when I hit sign but there was a link in my mailbox anyway and then you just hit the link. I think it is just a bug.
I wish I had one. I was trying to think of ways to make this easier. I don’t think Jen’s site has the capacity yet to just click on a button and push send but it will .
I wish I had one. I was trying to think of ways to make this easier. There is a suggestion in the comment below..Jen’s site to the rescue I think!
Hi Dee,
Can you forward the link to a friend and ask them to sign it for you and send? Sorry you are so weak.
This is what I sent:
These cuts are unconscionable! Over a million people in the US have chronic fatigue syndrome. Perhaps you were mislead by the name. Studies show that people with have lowest quality of lives and ability to function of any disease! This is not a minor disease. It can be an extremely debilitating disorder. Two federal reports recently called for urgent “increases” to funding for ME/CFS research – yet you have just cut that program in half!
This is incredible….Please restore the cuts and add $10 million more to the CDC’s program. A million Americans with a disease a disease that the FDA reports that is as disabling as multiple sclerosis and kidney disease deserve better.
Thanks very much,
Yours truly,
Cort Johnson
Hey Cort- You may already know this, but a few people have heard back from a staffer and they have set up phone calls for next week to discuss this issue. So hopefully we will know within a few days what is going on– obviously we should continue to email the staffers but it’s good to know there have been some responses.
Thanks for passing that one. Didn’t know it and glad to hear it.
I skimmed and searched the 2016 CDC budget justification and there seems to be almost nothing in it about CFS. Maybe I missed it. If not, I am less surprised by the appropriations committee’s action. Did the CDC goof? If so, maybe the CDC needs to respond to the Senate Appropriations committee.
Interesting Margaret….What the heck is going on?
I sent the e-mail and added the following for a more personal touch.
To you we are faceless individuals that you find so easy to just toss aside and dismiss. We are real people! We are wives, husbands, mothers, fathers, daughters, sons, sisters, brothers, grandmothers, grandfathers, friends. Your decision to cut funding is not just affecting us, it’s affecting all the people in our lives who are so desperate to see us get better, because we have meaning to them! We are important to them! They have watched what this disease has done to us. They have watched it rip our lives away from us. They have watched us suffer day in and day out. They and us want nothing more than to get our lives back! The only way to do that is to increase funding so that we can eradicate this terrible life robbing disease!
I did what I could and wrote to the senators.
Dear Senator,
I am from [my country] and have the neuroimmune disease Myalgic Encephalomyelitis (ME), also somewhat incorrectly called Chronic Fatigue Syndrome (CFS).
It has come to my knowledge that the committee recommendation recommends the senate to remove the funding for CFS next year for CDC. I can not understand this decision at all. Actually, CFS has suffered from underfunding for decades.
CFS is a prevalent disease. One of 300 people have it (0.4%). It causes severe disability and suffering, and the persons with it lose the contents of their life. Not only the patients themselves suffer, but also the family suffer.
I have no clue from where the idea would come to remove the funding for biomedical research into CFS. It seems very strange that this happens in a time where it is clear that this is a severe physiologic disease that have been underfunded for decades. For example the Institute of Medicine (IOM), released a report this year that came to that conclusion.
The burden on society (direct and indirect cost) is in the order of $20 billion (USD) yearly.
If the funding of biomedical research was proper, then we would probably have a cure soon. It does not make sense to remove the funding. Any economist would realize that the correct thing to do is to increase the funding radically in order to reduce the burden on society. Very few investments are likely to be so profitable. Investing for example $100 million yearly during ten years for finding a cure, would represent an investment of $1 billion which would then result in a profit (lowering of burden on society) of $20 billion yearly!
Not to search for a cure for a disease that has been proven to cause severe invalidity and very poor quality of life is inhumane and unethical.
I supplicate that you reconsider the level of funding for biomedical research into CFS. I would suggest you to progressively increase the funding over the five next years to something in the order of $100 million yearly.
Actually, I would prefer that the money for research into CFS is diverted into research into Myalgic Encephalomyelitis (ME) which in my opinion is a more strict and correct description of the disease.
I would prefer that CDC use the international concensus criteria for myalgic encephalomyelitis (ME) from 2011, and view ME as an exclusionary diagnosis to CFS.
Yours Sincerely, [my name]
Thanks Karl 🙂