When we get sick, we expect compassion. Treatments. Help. Imagine a world where none of that exists.

Enter ME/CFS in 2024. A complex neuroimmune disease affecting the immune system, autonomic nervous system, central nervous system, metabolic system, virtually every system.

The CDC estimates that 3.3 million Americans are living with ME/CFS, but independent research suggests that figure is much larger, like 9 million Americans.

Due to a lack of investment by the NIH spanning decades, there are zero FDA approved treatments for ME/CFS. That’s right. None. Which is particularly problematic given 25% of people with ME/CFS report being homebound or bedbound, and 75% of people with ME/CFS are unable to work full time.

Compare this to say MS, which received $121 Million in funding from the NIH in 2022 and has over 20 FDA approved disease modifying drugs. ME/CFS received only $13 Million in funding, despite affecting more people and having a worse quality of life.

Enter #NotJustFatigue in 2024. We’re sounding the alarm on ME/CFS through digestible, creative content.

We launched www.notjustfatigue.org to educate the general public on the disease. It’s composed of an animated historical timeline, a photodocumentary series with quotes, an informative Q and A, social media shares, a ten part educational video series, and a 15 minute short film about a person living with severe ME/CFS and their family.

Since its launch, over 100,000 unique viewers have visited www.notjustfatigue.org, meaning we’ve educated over 100,000 people on ME/CFS. We want to educate millions.

We also partnered with a top DC lobbying firm in search of more funding for ME/CFS research. We met with many Congressional staffers, which resulted in a Senate L-HHS Appropriations Committee directive to include ME/CFS in the RECOVER Long COVID Initiative, which not only opens up a lot of funding for ME/CFS, but also makes sense given as many as 45% of people with Long COVID fit the case definition for ME/CFS.

We’ve done a lot, but we want to do more. If you like the work we’re doing, please consider making a donation to #NotJustFatigue, a tax deductible 501(c)(3). We want to create more educational videos on ME/CFS, continue our successful lobbying efforts, launch a PR campaign, etc.

And if you’re not in a position to give, we completely understand, but please consider sharing this campaign with your community.

Let’s tell the world that this is #NotJustFatigue and move the needle on ME/CFS!

Help #NotJustFatigue Continue Their Education + Advocacy Efforts

By Notjustfatigue Inc

Help #NotJustFatigue Continue Their Education + Advocacy Efforts

We’re sounding the alarm on ME/CFS