ACT NOW: Just Say NO to Funding Cuts for ME/CFS Research
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 earmarked 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.
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:
AND your senators – find them here: http://www.senate.gov/
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.
City and State:
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