The Most Underfunded Disease at the NIH

If you compare funding and disease burden data across all diseases at the NIH for which this data is available, one disease stands out. It's ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a condition that afflicted 1-2.5 million Americans before the pandemic. Those numbers are rising drastically as a result of long COVID. Research has shown around half of those with long COVID meet diagnostic criteria for ME/CFS after 6 months.
Arthur Mirin, Mary Dimmock, and Leonard Jason conducted the research into ME/CFS funding vs. disease burden that is referred to throughout this video: pubmed.ncbi.nlm.nih.gov/32568148
Their latest research update (published in April 2022 after the above video was released) incorporates ME/CFS triggered by SARS-CoV-2 into their existing models. It predicts ME/CFS prevalence will rise to between 5 and 9 million Americans, with an annual economic impact of $149B-$362B, far exceeding the pre-pandemic figures cited in this video. (Source: t.co/zPwStvy2FY)
In December 2023 the CDC announced new survey results that put the latest estimate of Americans diagnosed with ME/CFS at 3.3 million adults (apnews.com/article/chronic-fatigue-syndrome-long-covid-cdc-c7f3dddbe88ec40d70448743fd479b30) This is over twice the estimated prevalence used to calculate the figures in the video above, even while not accounting for pediatric ME/CFS or those who never received a formal doctor's diagnosis.
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For more resources, doctors and patients can refer to the U.S. ME/CFS Clinician Coalition: mecfscliniciancoalition.org
If you suspect you have ME/CFS, avoid exertion that triggers post-exertional malaise. For more information, refer to the following CDC guidelines: www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/treating-most-disruptive-symptoms.html
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For more informative content, follow ME/CFS Quotes on Twitter, Instagram, and Facebook.
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Special thanks to Andrew Vickers, who composed the soundtrack for this video.

[@madeleinethriftvip]

It really is quite UNBELEIVABLE we've been left behind dealing with such a cruel illness alone. Thanks for uploading this x0x

[@khavita2309]

Fantastic video! Thank you Merely Existing for the eloquently delivered insight. I'm only 10.5 years into ME/CFS. The stigma is horrendous. Greetings from Malaysia. Looking forward to more vidz.

[@hellowp1345]

I don’t know how “fatigue” was ever in that name. It’s PAIN.

[@mihakavcic7237]

It's more like POISON.

[@snowleopard9749]

I brought this up (disease burden vs funding plots) well over 10 years ago on PR and tried to get the attention of health officials in various countries (CDC, NIH, NHMRC) to pay attention, sadly nothing at all has changed in that time. Even with LongCOVID, there is still a lack of high quality research, with LongCOVID researchers repeating all of the mistakes of ME/CFS researchers of 20-30 years ago because they think that LongCOVID is somehow going to be different.

[@melindalandon4954]

Have had this in my life since 1987. I was in the best physical condition of my life having taken aerobic excercise for 7 years. It's been the UFO of disease or disorder, with the ridicule, suspicious, unbelieving, etc. from doctors and family and friends. Majority of patients are female, so, of course, more research money has been spent on male-pattern baldness. My life is coming to an end, all I see are the circles the research has gone in. The NIH and other government health agencies seem to want only one 'winner' for Big Pharma. Similar to the Covid treatment scandal. It's really not for the patients, just the money prospects.

[@roberthotlzclaw9012]

Also love the matter of fact chill delivery (rather than outrage antagonism that you see in many social justice content these days)... Def keep that up

[@roberthotlzclaw9012]

Great video, keep rocking on 👉💯❤️‍🔥

[@MECFSDiagnosticBiomarkers]

The video that most needed to be made so that those in deal in information can find it. Thank you so much for the effort you made to make this video. The writing and the visuals are well done.

[@sharonleighzahl729]

cfs, that umbrella term for illnesses that scared them in the 80's, confusing and diluting the urgency and severity of chronic disease... Do they regret what they did to millions in a short term rush to save money? ME/Mylagic Encephalomyelitis was and still it a recognised disease. This is really a story of how millions were denied the right to have their illnesses recognised by its correct name. While millions more are still without a clear understanding of their disease while the misnomer persists.

[@rr22rr44]

So much good information in this video. Thank you for all the research that was put into it, and all the work involved in creating the video itself.

[@riceman78]

Shame more people haven't seen this. Great video.

[@kmkvladne]

This video was so great! I hoped that you would upload more :(

[@merelyexisting9587]

Ah thank you. I did plan on creating more videos but my health hasn’t allowed it.

[@kmkvladne]

@@merelyexisting9587 that's what I thought :( Don't worry this video is enough already :)

[@rohanbotica9920]

Best video on this topic I've ever seen

[@TomasioTV]

Even my former psychologist didn't know what it is. Even so, he assumed that I have it. Nowadays I seek be properly diagnosed. I myself need the help of my neighbour to get things done, while it wasn't always that way. Almost every activity can exhaust me, but for some reason I don't understand, writing gives me the least exhaustion, if at all. It can also largely paralyze me if it gets too intense, I don't know why.

[@FightingMECFS]

No one understands because i can actually still walk to the bathroom and get out of bed twice a day for a total of about 4 hours a day. Even then i cant hold myself upright the entire time, its too much of a drain on the little bit of energy my body is producing.

[@faraboverubies2526]

Me too. But i am one of the fortunate few. After 2 years i began to recover. Only rarely do i feel that familiar bone weariness. And then it is with a significant event like starting a job. But i remember not being able to make a sandwich. I went from being the "hotdog" on my hospital unit, to not being able to spike an IV bag. My Dr. Said some people never recover. Would i be one of those? Migraines, migrating joint pain, low grade fever, and debilitating fatigue. I was treated like a psych case by some. I realized i was on my own. Praise G-d, i recovered.

[@myrafried3538]

Mazel tov on your recovery. I have had me/cfs and fibromyalgia for about ten years now. I had to retire early (at around 50 years old), and can't do much of anything now. Me/cfs has really done a number on my brain. I am even afraid to drive. I am so glad that you have recovered. It gives me hope.

[@faraboverubies2526]

Messiah Yeshua helped me through it. Praise G-d!

[@OscarPerez-ig2vw]

Thank you for the effort of making this video

[@caitlinacacia7070]

Thanks for spreading awareness!

[@nordicway4036]

Horrible illness.

[@Cepar.]

Thank you for this beautiful presentation!

[@FionaC1]

Excellent video!

[@olmo4767]

thanks for creating this excellent and very helpful video!

[@nikkismith8750]

Excellent work, thanks. I hope lots of people see it

[@janedoe6704]

Wonderful content thank you!

[@s.k.2017]

Informative and well done! Thank you. Your efforts are greatly appreciated.

[@IlGreven]

The main reason why? American work culture and perception of disability (in other words, if you don't LOOK disabled, you AREN'T disabled...you're just lazy and don't want to work).

[@Gina-dn6xm]

We need funding We need biomarkers We need disability We need respect

[@brobinson8614]

34 years for me. The last 8 years I’ve been very unwell. Mostly bedridden. I can only walk 50 metres. Any more triggers a powerful immune reaction that worsens all symptoms

[@ruthherring5684]

I’m at 34 years too. I’m severely affected. Sorry to hear you are so badly affected. It’s not easy, is it?!

[@gwilkins4617]

Great video