After 30 years of neglect, the federal government promised late last month to bolster research on myalgic encephalomyelitis/chronic fatigue syndrome — the equivalent of promising to help multiple sclerosis or Parkinson’s, two other important neurological diseases with no known cause or cure. Thanks to years of prodding by patient advocates, the National Institutes of Health now understands myalgic encephalomyelitis is a serious disease that brings significant functional impairment. Though this is a welcome breakthrough, we need help to create real change for these often ignored patients.

For me and my mother, this government recognition is both personal and political. After a bout of mononucleosis decades ago, I never returned to a normal life. The mono morphed into myalgic encephalomyelitis, as it has with many other patients. Ultimately, I struggled with exhaustion and cognitive confusion so crippling I had to abandon both my career and social life. My mom watched helplessly as I spent much of my 30s and 40s in or near bed, grieving over lost dreams.

With no generally accepted diagnosis and no treatments sanctioned by the Food and Drug Administration, we hoped our government’s huge $30 billion National Institutes of Health budget would come to our aid.

No such luck.

Year after year, the government dedicated a meager $5 million to chronic fatigue syndrome research. That’s less than what hay fever research gets — and hay fever doesn’t make you too weak to work for years on end.

Even worse, much of this research psychologized, delegitimized and marginalized the disease. That, coupled with the government-imposed stigmatizing name of “chronic fatigue syndrome” (who isn’t tired? Take a nap, go to the gym, snap out of it!) has permitted doctors, the media, the public and even families with sick loved ones to brush off patients as malingerers who refuse to pull it together. This has resulted in harmful (or no) medical care and ill patients being abandoned by families.

Fed up, we organized a demonstration in 2011 at the San Francisco Federal Building’s Department of Health and Human Services. Many patients are too sick to take to the streets to demand change, so others, including my mother and some tenacious patients, unfurled a 25-foot-long homemade banner demanding Health and Human Services stop neglecting myalgic encephalomyelitis.

The news that the government finally would help us swept through the patient community, resulting in shock and tears of joy as well as deep sadness over the years lost. There was also skepticism because the announcement did not come with a dollar figure. The director of the National Institutes of Health said the funding will be substantially greater than it is currently.

We say research for this disease must be funded at a level commensurate to its burden. Multiple sclerosis, another neuro-immune disease, with its 400,000 U.S. patients, gets $102 million each year. Myalgic encephalomyelitis, with its more than 1 million U.S. patients, should get funding equity.

To achieve this, we need to see democracy in action: We urge everyone to contact their congressional representatives; ask them to insist that the National Institutes of Health dedicate $250 million per year to this disease. One million previously ignored, disabled Americans will be grateful.

Rivka Solomon is working on a book about her 25 years with myalgic encephalomyelitis/chronic fatigue syndrome. She created a women’s empowerment program, That Takes Ovaries . S he and her mother, Bobbi Ausubel, co-wrote a play of the same name. @RivkaTweets