When Bill Burns became CIA director in March 2021, he vowed to investigate a mysterious illness afflicting a growing number of soldiers, spies and diplomats who reported a sudden onset of debilitating symptoms, including severe headaches, loss of balance and reduced cognitive function.

Many of them felt ignored, gaslighted and unprotected by the Trump administration’s handling of the phenomenon, known colloquially as Havana syndrome. Burns, victims felt, was going to treat it like a real disease and, they hoped, get to the bottom of what some strongly believe is the result of a new weapon being wielded by Russian agents around the world.

But three years later, some of those same victims and their advocates say they are once again deeply frustrated by the CIA, which continues to assess that the strange illnesses are unlikely to be the work of a foreign actor. For some victims — some of whom are gravely injured — that is tantamount to a betrayal.

“There is so much anger among the victims right now,” said Marc Polymeropoulos, himself a victim and an outspoken advocate for those struck by what the government terms “anomalous health incidents,” or AHI.

The intelligence community’s insistence that they don’t have enough evidence to attribute the episodes to Russia “just translated to in public, ‘It doesn’t exist’ — and then we turn into UFO chasers,” Polymeropoulos said. “That’s psychologically damaging.”

Congressional sources familiar with the CIA’s internal efforts to investigate say the agency is telling the truth: the evidence simply isn’t there. And while victims do say the CIA has made strides in caring for injured officers, even as dozens of cases remain unexplained, many of them remain infuriated over controversial studies of the illness by the National Institutes of Health that found few clinical differences between AHI patients and healthy comparison groups.

The study work has recently been suspended pending an internal investigation into allegations from some of the victims that the CIA required them to participate as a prerequisite for obtaining care at Walter Reed.

In interviews with CNN, more than 10 people intimately involved with this issue, including current and former officials, victims and congressional overseers, all described how a fundamental disagreement over the evidence of Russia’s involvement has led, once again, to deep disillusionment, distrust and increasingly pitched friction between the victims of Havana syndrome and the government agencies charged with investigating it.

Because most of the evidence for either side of the ledger is classified, the debate has become a frustrating case of he said, she said.

Victims felt deeply vindicated by a recent “60 Minutes” investigation relying on open-source materials that strongly suggested Russia was launching attacks on American officials overseas and on US soil. Some former US officials, including one senior defense official who ran the Defense Department’s investigation into the matter, have said that based on the intelligence they have seen, they have little question Russia is behind the injuries.

But the CIA in an internal memo sent to its workforce shortly after the episode aired claimed that all of the incidents in the piece had been investigated and that the agency had not changed its conclusion that Russia was unlikely to be involved, according to two sources familiar with the memo.

“I had my own assumptions when I became Director about the possibility that a foreign adversary was responsible,” Burns wrote in the memo, portions of which were shared with CNN, which frustrated some victims. “My job is not to validate my assumptions, however, but to ensure an intensive and professional effort to get as close to ground truth as we can.”

The CIA looked into the “60 Minutes” allegations as part of a broader review by the entire intelligence community, a spokesman from the Office of the Director of National Intelligence told CNN, which “did not cause IC elements to alter their analytic judgments.”

The NIH study into the mysterious illness has only stoked animosity among victims, some of whom claim the CIA made them participate as a prerequisite for obtaining care at Walter Reed.

“They wanted us to be a lab rat for a week before we actually got treatment at Walter Reed — and at bare minimum that is unethical and immoral,” said Polymeropoulos, who believes that this was “ordered” by senior leadership at the agency.

The NIH in a statement to CNN confirmed that its Institutional Review Board, which is responsible for the ethical oversight of studies, is investigating the allegations. The NIH takes the claims “very seriously,” it said, and is trying to determine whether they are valid.

The CIA in a statement denied that victims were required to participate.

“What I can tell you is that NIH studies were research-focused and participation in them was voluntary by design,” a spokesperson said. “It bears repeating that these findings do not call into question the experiences and real health issues that US Government personnel and their family members have reported while serving our country.”

The tensions go both ways. Multiple US officials who spoke to CNN on the condition of anonymity to describe the dynamic expressed sympathy for victims, but also frustration that some of them are unwilling to accept the intelligence community’s judgment that there simply isn’t enough evidence to definitively tie different episodes to Russia.

“We’ve kept officers [at the CIA] who are still very focused on this issue,” said one source familiar with the government’s investigation. “We have officers who are exclusively focused on any incidents that come up and are working with the FBI and DOD to pursue any new information.”

Across Washington, the issue has spawned congressional investigations, lawsuits and intense advocacy efforts. Reports of strange episodes impacting US officials in China, Russia, Austria and even near the White House in Washington, DC, have been filed with investigators.

One of Burns’ own staff was struck during an official trip to India in 2021. Some of the officials who have reported symptoms consistent with the phenomenon have been so severely impacted that they have been forced to retire.

Under pressure from victims, Congress in 2021 passed legislation mandating that agencies provide compensated care for those afflicted. Some lawmakers, like Sen. Jeanne Shaheen, a New Hampshire Democrat, have made the issue a priority.

CIA doctor investigating mysterious injuries suddenly injured himself

Greg Edgreen, the former defense official who went public on “60 Minutes” with his conviction that Russia is behind the phenomenon, has started his own company specifically to acquire government contracts to provide additional care for victims. Edgreen, who says he invested his retirement savings to start the company, told CNN that he has yet to win a contract. He continues to argue publicly that Russia is behind the injuries.

“I can tell you at an early stage I started looking at Moscow,” he said. “I believe that we’ve lost our way in the [intelligence community] in terms of how we put out assessments.”

Both the Senate and the House Intelligence Committees continue to investigate, evaluating the intelligence community’s work on the issue, and hearing testimony from victims and following their own potential leads.

But the issue remains a frustrating mystery. Some experts believe that the injuries could be the result of some kind of directed energy attack. According to two sources familiar with the effort, multiple government agencies, including the National Labs and DARPA, over the years have tried to recreate a weapon that could, theoretically, cause the same kind of damage. But the power needs of such a device are so huge, those sources said, that government researchers couldn’t figure out how to get the power source small enough to make the hypothetical weapon portable.

“I think we have confidence that [the intelligence community] are doing the best they can,” said one person familiar with the Senate Intelligence Committee’s work. The panel is “empathetic” to victims, the person said, but “I wouldn’t necessarily say we share their frustration. The victim community is going to be frustrated at any finding that isn’t the one they’re expecting to see.”

The CIA insists it remains focused on the issue and that it’s following the evidence where it leads. But the official line remains the same: The available evidence “consistently points against the involvement of US adversaries in causing the reported incidents.”

A lawyer representing some of the victims, Mark Zaid, as well as Polymeropoulos, are now claiming that CIA officers were required to participate in the NIH studies as a prerequisite for receiving care at Walter Reed. According to Zaid, any “order” to participate in the study was conveyed to officers verbally.

Other sources familiar with the allegations say the truth is more nuanced.

“I think it’s true that victims perceived it to be true — i.e., [that] participation in the NIH study [was] a prerequisite to receive care. And CIA did send victims to the study,” said one source familiar with the matter. “But I don’t know that we have evidence, e.g. some written rule, that participation in the study was actually a prerequisite.”

But, this person added, “I fully recognize that the pressure of the Agency itself could have very well implied it was required. And so just because there’s nothing in writing doesn’t mean it wasn’t.”

According to the NIH, serious allegations like those made in this case are extremely uncommon.

New York University medical ethicist Dr. Art Caplan, who was not involved in the studies, said participants should never be told that they can get treatment only if they participate in a study.

“That should never happen,” Caplan said. “It’s a huge ethical – almost legal – no-no. … You can’t pressure people with rewards or saying you’d be cut off from a benefit if you don’t do it.”

He pointed out another potential ethical problem if people are pressured to give consent to a study to get treatment, because there is no specific treatment for Havana syndrome.

Making such a promise could give false hope, Caplan said.

CNN’s Natasha Bertrand contributed to this report.

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