Believing women patients – National Consumers League

SG-headshot.jpgLast year, the FDA approved a drug for female low libido–known as Hypoactive Sexual Desire Disorder or HSDD–for the first time in history. It didn’t happen without a great deal of naysaying by the media, pharmaceutical company critics and most disappointing, some feminists. The skeptics questioned whether the millions of women who complained of having lost their sex drive were imagining the condition.

NCL took the opposite position. We believed these women’s testimonials, validated their experience, and supported approval of a treatment because, first, the science is there. HSDD has been a recognized condition in medical literature since the 1970s. Second, we listened to women patients; we heard them describe the terrible effects this condition had on their self esteem and relationships.

And so, it was with great interest I read about new research into another condition that has many naysayers (and affects mostly women), Chronic Fatigue Syndrome, or more officially, myalgic encephalomyelitis (ME). The existence of ME has also been met with great skepticism over the years and there are no blood tests or biomarkers to diagnose the illness.

I’ve had friends and colleagues who suffered from this condition and it saps their energy, diminishes their ability to work and their zest for life, and takes a huge toll on their families. What that proves to me is that the medical science hasn’t caught up with the illness.

In this new groundbreaking study, researchers looked at stool and blood samples of 48 people diagnosed with ME. They found that those with the illness had less diversity in their gut bacteria and fewer bacteria that were anti-inflammatory. They found evidence of a leaky gut from intestinal problems that allow bacteria to enter the blood.

Cornell University professor Maureen Hanson conducted the study. She noted, “Our work demonstrates that the gut bacterial microbiome in ME/CFS patients isn’t normal, perhaps leading to gastrointestinal and inflammatory symptoms in victims of the disease. Furthermore, our detection of a biological abnormality provides  further evidence against the ridiculous concept that the disease is psychological in origin.” Thank you, Dr. Hanson, for validating the experience of those who suffer from ME. And thank you to NIH for funding the study.

ME advocates believe that several hundred thousand people have this illness in the U.S. They decry the pittance spent by NIH on ME research, leading to a lack of understanding of its cause and sadly, the absence of a viable treatment. Advocates also cite the damage done by failing to recognize this illness: the lost productivity, billions in medical expenses, and lost tax dollars from those unable to work. 

Like HSDD, ME provides yet another example of patient suffering, while critics call into question whether the very condition or illness they are living with day-to-day even exists. Then science discovers a cause and well, maybe yes there is a medical basis to ME.

The lesson is, believe the patients, especially when there are hundreds of thousands–or millions in the case of HSDD–describing the same symptoms. We should hail medical science for finding cures for so many debilitating and deadly diseases. ME shouldn’t be an exception and let’s stop doubting that patients who suffer from debilitating illnesses are having real symptoms.