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1/ How neglected is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome research?
@NIH funding for ME/CFS in 2017 was ~$25mill
Fair funding relative to disease burden should be ~$350mill
That means #MECFS research was short-changed by $325,000,000 (14-fold!) in just ONE YEAR
@NIH funding for ME/CFS in 2017 was ~$25mill
Fair funding relative to disease burden should be ~$350mill
That means #MECFS research was short-changed by $325,000,000 (14-fold!) in just ONE YEAR
2/ Buckle up!
@CenterRes analysis found that even though the disease burden of #MECFS was double that of HIV/AIDS, #AIDS research received ~$5billion in 2017
Thats a 20-fold shortfall, amounting to ~$4,975,000,000 lost #MECFS funding in just ONE YEAR! https://pubmed.ncbi.nlm.nih.gov/32568148/
@CenterRes analysis found that even though the disease burden of #MECFS was double that of HIV/AIDS, #AIDS research received ~$5billion in 2017
Thats a 20-fold shortfall, amounting to ~$4,975,000,000 lost #MECFS funding in just ONE YEAR! https://pubmed.ncbi.nlm.nih.gov/32568148/
3/ And, the graph below shows that #MECFS research is woefully underfunded compared to similarly burdensome diseases
Note: the vertical Y-axis scale on the graph is logarithmic
So #IBS and #pneumonia actually receive 10x MORE funding than #MECFS
https://pubmed.ncbi.nlm.nih.gov/32568148/
Note: the vertical Y-axis scale on the graph is logarithmic
So #IBS and #pneumonia actually receive 10x MORE funding than #MECFS
https://pubmed.ncbi.nlm.nih.gov/32568148/
4/ And...
#MECFS is the lowest funded of all diseases for which the @NIH holds burden and funding information
Worst. funded. OF. ALL. DISEASES!! https://pubmed.ncbi.nlm.nih.gov/32568148/
#MECFS is the lowest funded of all diseases for which the @NIH holds burden and funding information
Worst. funded. OF. ALL. DISEASES!! https://pubmed.ncbi.nlm.nih.gov/32568148/
5/ The high health burden caused by #MECFS is largely due to the very low quality-of-life experienced by #pwME
#MECFS is a highly disabling illness with many patients becoming unemployed, housebound and socially isolated.....
.....not just for a year or two, but for decades
#MECFS is a highly disabling illness with many patients becoming unemployed, housebound and socially isolated.....
.....not just for a year or two, but for decades
6/ "While @NIH has increased its funding... for 3 Cooperative Research Centres, as documented by @jspotila, the establishment of the CRCs corresponded with a <decrease> in the number of investigator-initiated grants.." https://pubmed.ncbi.nlm.nih.gov/32568148/
7/ "This is a worrisome trend that is unlikely to be quickly addressed without disease-specific funding opportunities for #MECFS, including those with set-aside funding to overcome stigma and encourage researchers to enter the field" https://pubmed.ncbi.nlm.nih.gov/32568148/
8/ The lack of research funding over the last 40 years means that #MECFS has:
No diagnostic test
No known causes
No known molecular mechanisms
No preclinical models
No effective treatments
and even worse........
No diagnostic test
No known causes
No known molecular mechanisms
No preclinical models
No effective treatments
and even worse........
9/ ......patients remain stigmatized, dismissed and told that they are malingerers or lazy
"It is time that @NIH treat #MECFS with the urgency that it deserves" https://pubmed.ncbi.nlm.nih.gov/32568148/
"It is time that @NIH treat #MECFS with the urgency that it deserves" https://pubmed.ncbi.nlm.nih.gov/32568148/
