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The Biden Administration announced the foundation of the Office of Long Covid Research and Practice and also the launch of long Covid clinical trials through the RECOVER Initiative recently, signaling a new effort to address the problem.

“As our nation continues to make strides in combating Covid-19, it is crucial that we address the impact of long Covid and provide resources to those in need,” said Javier Becerra, Secretary of Health and Human Services. “Last year President Biden called on H.H.S. to coordinate the response to long Covid. The official establishment of the Long Covid Coordinating office and the launch of the RECOVER clinical trials solidifies this issue as an ongoing priority.”

“This is a year or two late and smaller in scope than one would hope, but nevertheless it’s a step in the right direction,” said Dr. Ziyad Al-Aly of Washington University, a long Covid researcher, according to The Associated Press.

Around 5% of Americans say they have long Covid, according to a Census Bureau and National Center for Health Statistics report. Other estimates say as many as 23 million Americans may have it.

Patient groups say as many as 10% to 30% of those who contract Covid still have some symptoms after a month, with varying degrees of severity. Some people recover at least partially, while some are still ill more than three years later.

One issue that complicates diagnosis and treatment is that there are as many as 200 different symptoms — among them brain fog, depression, anxiety, tinnitus, extreme fatigue, muscle and joint aches and pains, gastrointestinal malfunctions, sexual dysfunction, and post-Covid acquisition of a number of other conditions like lupus, diabetes and various autoimmune disorders.

People with long Covid have a hard time finding doctors who understand the condition, and they complain that they are often dismissed by clinicians. Further complicating the situation is the fact that there is not any one universally accepted treatment; quite often, patients are treated on a symptom-by-symptom basis — medication for depression, for example, or steroids for hearing loss.

Patients not ‘a full and respected partner’

For people with long Covid, the announcements seem too little and too late.

In a statement, Meagan Roderique of the Long COVID Alliance said:

“The Long COVID Alliance is both encouraged and concerned by the announcement today from NIH about their upcoming launch of clinical trials under the RECOVER initiative. We welcome the NIH’s efforts to finally fund much needed and long overdue trials on Long COVID, which has left tens of millions of Americans severely disabled. Today’s announcement unfortunately leaves many important questions unanswered and seems fraught with the same lack of transparency that has become all-to-familiar with RECOVER and its $1.15 billion budget.

“We continue to voice serious concern about the trial design and process transparency, given the historic and ongoing omission and invalidation of the patient voice and experience, some of which we have seen through released or proposed manuscripts. If the patient community had been made a full and respected partner in this process, we would have seen a very different set of priorities and clinical trials.

“Additionally, the Alliance is concerned that the NIH has not presented a timeline for results: They have highlighted that enrollment will begin over the next several months, likely meaning that results to benefit many millions with Long COVID are still at least a year away. By then, Long COVID will have been with us for over four years, an unacceptable wait for patients to see meaningful results from this billion dollar investment.”

Jeanne Pinder  is the founder and CEO of ClearHealthCosts. She worked at The New York Times for almost 25 years as a reporter, editor and human resources executive, then volunteered for a buyout and founded...