Thread by @Dr_M_Guthridge

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

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!

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

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!!

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

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.."

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"
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........

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"
pubmed.ncbi.nlm.nih.gov/32568148/