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By Crystal Lindell

This week, a doctor on X (formerly Twitter) decided it was a good time to infuriate a bunch of patients with chronic illnesses.

Adam Gaffney, MD, a pulmonary and critical care doctor at Cambridge Health Alliance and Assistant Professor at Harvard Medical School, wrote this:

“Over-diagnosis / misdiagnosis / self-diagnosis of EDS, MCAS, POTS & Lyme is a real problem, and it would appear that there is little appetite by medical professionals to discuss this issue publicly.”

For those of you unfamiliar with the acronyms, EDS stands for Ehlers-Danlos syndrome,  MACS is Mast Cell Activation Syndrome, POTS is Postural Orthostatic Tachycardia Syndrome, and Lyme refers to Lyme disease. All four are serious chronic illnesses that are difficult to treat, painful, and can last a lifetime. 

I would link to Gaffney’s post itself, but amidst the backlash, he made his entire X account private. 

As of April 8 though, Gaffney had more than 20,000 followers, which is to say that this wasn’t some random provocateur on X/Twitter trying to stir up controversy by sharing his flawed viewpoint. Rather, it was a highly accomplished doctor with real influence. He teaches at Harvard!

Gaffney is not alone in his thinking. Indeed, any chronic illness patient will tell you that a lot of doctors feel this way. But those doctors are wrong, and I think it’s worth taking some time to discuss it, especially since I have EDS myself.

Gaffney’s post almost instantly went viral in the chronic illness community, and not in a good way. My X feed, which admittedly tends to include an outsized number of chronic illness patients, was filled with people pushing back.

Lorelei Lee (@MissLoreleiLee) wrote: 

“This is disgusting to say at a time when so many sick people are suffering because of the constant dismissal by doctors undertrained in these types of illness, overworked by a dysfunctional healthcare system, & seeing increased numbers in the wake of a debilitating pandemic.” 

While Barry Hunt (@BarryHunt008) wrote:

“Dear Adam,

When medicine takes a decade to name what’s destroying your life 

And calls you hysterical in the interim

“Self-diagnosis” isn’t the problem

It’s the solution.”

Of course, most patients with chronic illness already know the truth: the four ailments that Gaffney thinks are overdiagnosed actually tend to be under-diagnosed.  

Here is a 2025 study showing that of 429 patients who were eventually clinically diagnosed with hypermobile EDS, 405 of them experienced misdiagnosis in at least one of the five evaluated categories. They were told their symptoms were all in their head; that they were making it up; seeking attention; or labeled with Munchausen syndrome by proxy or some other factitious, made-up disorder.

Meanwhile, Dysautonomia International reports that – on average – it takes nearly six years for a patient to be correctly diagnosed with POTS.  And since COVID causes POTS, that means cases are rising and doctors need to adjust their thinking on how common it is. 

As for MCAS, the Mayo Clinic says that because MCAS has so many symptoms similar to other diseases, patients “can experience lengthy diagnostic delays while seeing various specialists to try to find answers.”

And when it comes to Lyme disease, John Hopkins says many patients with Lyme are initially misdiagnosed because “early symptoms of fever, severe fatigue, and achiness are also common in many other illnesses.”

Personally, it took me five years to get an EDS diagnosis after I first started suffering from chronic pain. And that 5-year span included two long trips to the Mayo Clinic, where it was missed both times.

All this despite the fact that one look at my over-extending elbows should have immediately put EDS on the radar of any doctor who saw me.

In the end, it was not a doctor, but PNN readers who led me down the right path, after multiple people emailed to encourage me to look into EDS.

EDS is also a dominant genetic gene, which means it runs rampant in my family. I’m sure that at least seven relatives on my mom’s side have it, but only one other has been officially diagnosed besides me.

The ailments that Gaffney mentions also tend to be more likely to affect women, so it’s impossible to ignore the underlying misogyny in his assertions. Afterall, women are never sick, only hysterical and anxious.   

I also think part of this current hysteria about overdiagnosing illnesses is related to the fact that opioids and other controlled substances have been severely restricted in the last decade. The medications help people with EDS and chronic illnesses in general, and in the past patients may have just treated their symptoms and gone about their lives.  

Now though, people are forced to get an official diagnosis if they want any hope of using a controlled substance to help them get through the day.

In the end, I feel deep sorrow for Gaffney’s patients. 

My hope is that this whole ordeal will inspire him to reflect on where his thinking may be wrong. But I fear that instead, all the push-back will just make him double down. And he will just go on dismissing his patients and encouraging other doctors to do the same.