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People with post-infectious diseases sometimes struggle to communicate the debilitating impact of their conditions. But a new technique can help them explain visually

Post-infectious diseases such as long Covid and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) pose a puzzle to the medical establishment. Patients report debilitating symptoms such as extreme fatigue, shortness of breath or muscle pain, but often show normal results on routine medical checkups. And many sufferers do not look ill, leading some to question the severity of their disease. In the absence of diagnostic tools or an understanding of the pathophysiological processes, many sufferers find it difficult to share their experiences. They lack a verbal language that expresses the true impact of the illness.

Now, researchers from Oxford University are using the technique of “body mapping” to help patients better communicate the physical, cognitive and emotional dimensions of their illness to family, friends and health professionals.

Oxford’s Maaret Jokela-Pansini is interested in how illness feels. “People experience illness in many different ways depending on economic, social and cultural factors such as age, gender or possibilities to access healthcare,” she says. “When we talk about health and disease, we must always take space and time into account.”

Jokela-Pansini first became acquainted with body mapping when she was working in a women’s organisation in Honduras that ran workshops in prisons. The technique, which involves creating a lifesize outline of a body, aims to capture patients’ experiences and has been used in trauma therapy and with chronic pain patients. “We call it ‘alternative cartography’,” she says. “We think of the body as a map: pain, emotions, experiences, they are all located somewhere in your body, which in turn is seen in relation to a specific environment.”

Last year, she teamed up with the Oxford professor Beth Greenhough and they adapted the method for their project Visualising Long Covid. So far, eight workshops have been organised in London and Oxford with the help of the charity Long Covid Support. The participants begin with tracing their bodies on paper. They are then given a list of questions and asked to draw, write or collage their responses on to the map of their body. How did you experience your health before getting long Covid? What impact has it had on everyday life? What kind of support do you get? How has the illness changed the way you view yourself?

“Body mapping is really about storytelling,” says Jokela-Pansini. Most participants begin with their head or their heart. “Family members are often in the heart,” she says. And despite each body map being unique, there are recurring motifs, such as shadows. “Participants use them in the sense that they are now only a shadow of what they were before and that they feel left behind. The world has moved on, but they are still living in the pandemic – an experience that can be profoundly isolating.”

Oonagh Cousins at Long Covid Support says body mapping allowed her to reflect on how illness is experienced in different parts of the body. Cousins participated in one of the first workshops and later joined the project as a research fellow. “You might ask: where is the pain located? Is it in the gut, in the heart, in the arms? What does it feel like? Is it red, is it orange, is it lots of scribbles, is it soft? And what about going to a clinician and being told: ‘It’s all in your head’? Where would you draw the emotion of that experience on your body?” Body mapping invites lots of different ideas and allows you to share them with other participants, she says.

Cousins finds the vocabulary used in connection with long Covid unhelpful. “Fatigue, ‘brain fog’ – these words don’t do justice to what people are actually experiencing. Fatigue sounds like tiredness, but it is in fact deep sickness. It feels like the worst hangover of your life combined with the worst flu of your life. Your brain and your whole body, everything, feels very, very weak and fragile. You’re not you any more.” The same goes for the term ‘brain fog’, which has an almost cosy connotation. It doesn’t come close to describing how paralysing the cognitive symptoms can actually be.

Cousins is now 29. She had just qualified for the British Olympic rowing team when she contracted Covid in March 2020 and subsequently developed long Covid and ME/CFS. The illness forced her to give up her rowing career. That hurt. But it wasn’t the hardest part. “I was in my mid-20s; I should have been in the prime of my health. But I spent them waiting for my body to recover. It wasn’t just weeks or months – it was years, time I can never get back. It’s the grief for a life that wasn’t lived – the things I could have done, the people I could have met, the experiences I could have had.”

The researchers have now developed an online toolkit that makes body mapping accessible to more people, including those who are unable to leave their homes due to their illness. “In the coming year, we hope to hold regular online body mapping workshops,” says Cousins.

But can this tool actually improve the wellbeing of people with long Covid? Not in the sense that it will heal them, says Jokela-Pansini. But creative research methods such as body mapping allow patients to express themselves differently so that their families, friends and possibly even clinicians can better understand how they feel.

“I think such body maps have utility,” says Carolyn Chew-Graham, a GP in Manchester who was not involved in the research. “Asking patients to record their symptoms can be helpful not only for the individual, but it could also be useful to show the body map to a GP and say: ‘This is where all my symptoms are.’ That then allows them to discuss each body area and symptom and come up with a management plan.”

In addition, body maps may give patients more credibility. “Many people with long Covid struggle with family members not believing them,” says Chew-Graham. “It isn’t just healthcare professionals who can gaslight patients, it’s also partners and family members.” This can be especially true in some ethnic minority groups where fatigue is often stigmatised, as Chew-Graham recently found in a study. The sense of not feeling worthy of care, as well as low awareness of available support, presents barriers in sufferers of long Covid seeking help.

Jokela-Pansini considers it crucial to include patients from ethnic minorities in future studies. “We have a lot of data for white middle-class women, but we don’t have much information about women with migrant backgrounds.” When an illness so thoroughly disrupts everyday life, it is all the more important to take a holistic view of it. Social scientists, biomedical researchers, clinicians, patients and carers all have a part to play: “It’s important to look at all these different layers, because each one of them contributes to a better understanding of post-infectious disease.”

The US attorney general has ordered charges to be dropped against a doctor accused of destroying Covid-19 vaccines worth $28,000 (£20,742), distributing fake vaccination record cards, and giving children saline shots instead of the vaccine at their parents' request.

Pam Bondi said Dr Michael Kirk Moore Jr. "gave his patients a choice when the federal government refused to do so". He had been indicted by the Justice Department under the Biden administration in 2023.

The plastic surgeon was already on trial in Utah, where he had pleaded not guilty to all charges including conspiracy to defraud the US.

The acting US Attorney for the district of Utah, Felice John Viti, filed to dismiss the charges on Saturday, saying this was "in the interests of justice".

Dr Moore was accused of providing fraudulently completed vaccination certificates for more than 1,900 vaccine doses, the US Attorney's office in Utah said in 2023.

These were allegedly provided, without administering the vaccine, for a charge of $50 (£37), in exchange for direct cash payments or donations to a specific charity.

The government also accused him of giving children saline shots at their parents' request so that the "children would think they were receiving a COVID-19 vaccine," according to the US attorney's office.

He was accused alongside his company - Plastic Surgery Institute of Utah, Inc. - and three others of seeking to defraud the US and the Centers for Disease Control and Prevention (CDC).

Bondi wrote on X on Saturday that she had ordered the Justice Department to drop the charges because Dr Moore "did not deserve the years in prison he was facing".

She said US Representative Marjorie Taylor Greene and Senator Mike Lee, both Republicans, had brought the case to her attention, calling them champions for "ending the weaponization of government".

Lee thanked the attorney general for "standing with the countless Americans who endured too many official lies, mandates, and lockdowns during COVID".

Dr Moore and other defendants faced up to 35 years in prison on multiple charges, according to the Associated Press news agency.

The current US Health Secretary, Robert F. Kennedy Jr., ran a group for eight years, Children's Health Defense, that repeatedly questioned the safety and efficacy of vaccination.

Kennedy has in the last year repeatedly said he is not "anti-vax" and will not be "taking away anybody's vaccines".

The Trump administration will move to pull the COVID vaccine off the U.S. market “within months,” one of Robert F. Kennedy Jr.’s closest associates has told the Daily Beast.

Dr. Aseem Malhotra, a British cardiologist who has repeatedly claimed in the face of scientific consensus that the vaccines are more dangerous than the virus, told the Daily Beast that Kennedy’s stance is shared by “influential” members of President Donald Trump’s family. Like Kennedy himself, no Trumps hold any scientific qualifications.

Malhotra is a leading adviser to the controversial lobby group Make America Healthy Again (MAHA) Action, which is seen as an external arm of Kennedy’s agenda as Health and Human Services (HHS) Secretary.

He told the Beast that many of those closest to RFK Jr. have told him they “cannot understand” why the vaccine continues to be prescribed, and that a decision to remove the vaccine from the U.S. market pending further research will come “within months,” even if it is likely to cause “fear of chaos” and bring with it major legal ramifications.

“It could [happen] in a number of stages, including learning more about the data,” said Malhotra, who said there was an ongoing review into so-called “vaccine injuries” by the Advisory Committee on Immunization Practices (ACIP). “But given the increased talk of vaccine injuries in the past few weeks among the administration, it could also come with one clean decision.”

Malhotra said skepticism among Kennedy’s circle of the COVID-19 jab is driven by a 2022 paper by a group of physicians and university professors and researchers, which appeared in the journal Vaccine.

The peer-reviewed paper examined secondary analysis of “serious adverse events reported in… clinical trials of Pfizer and Moderna mRNA COVID-19 vaccines in adults,” and said that those given the mRNA vaccines had a 16 percent higher risk of “excess serious adverse events” than those in the placebo group.

However, the study has been dismissed by large parts of the medical community, who say it underestimates the benefits of COVID-19 vaccines and overstates risks due to methodological flaws, biased data selection, and ignoring broader public health impacts.

Malhotra was not among the authors of the study, but said that he presented its findings during a MAHA Action team video meeting on July 9 which was attended by senior aides to Kennedy. He claimed it caused a “holy s--t” moment among many of those present.

Malhotra is known to have the ear of RFK Jr., having first drawn his attention in September 2022, when he published a paper in the Journal of Insulin Resistance on what he described as “misinformation about the COVID mRNA vaccine,” which led to a television interview.

After he walked out of the studio, Malhotra said the first person to call was RFK Jr. “He said, ‘I want to thank you for your courage,’” Malhotra said. The pair have since become close.

Malhotra helped fundraise for Kennedy’s doomed presidential campaign, and the two hiked together in the Los Angeles hills close to Kennedy’s home that he shares with his actress wife, Cheryl Hines, in October 2023.

Malhotra is now expected to meet Trump himself in September to push his anti-COVID-19 mRNA vax views, during a trip to meet Kennedy and other HHS aides.

“I think [Trump will] get it, because it’s in his interest to,” Malhotra said. “This information is only going in one direction, and there’s something really terribly wrong with the system. I think once [he] understands the situation… that will encourage him to act to change the system. He’s in a position to fix it. He can create a lasting legacy by doing so.”

The prediction of a drastic move against the COVID vaccine comes after Kennedy canceled $500 million in funding for the development of mRNA vaccines. Such vaccines use a copy of a molecule called messenger RNA (mRNA) to provoke an immune response against certain diseases. They have received much attention since the COVID-19 pandemic, where they served as the basis of the most widely used SARS-CoV-2 vaccines.

Days after canceling the funding, the HHS secretary—criticized for describing the COVID shot as “the deadliest vaccine ever made”—stated during a press conference his belief that the mRNA COVID-19 vaccine was dangerous and can cause “injuries” including myocarditis, an inflammation of the heart that can lead to health issues ranging from fatigue to cardiac arrest.

At the same time the scientifically unqualified Kennedy scion wrongly claimed there is no evidence football leads to brain damage.

Vaccine skepticism took a sinister turn earlier this month when an anti-vaxxer opened fire on the Centers for Disease Control (CDC), killing a police officer. Investigators believe the man targeted the CDC over his hatred of the COVID-19 vaccine, apparently convinced he was sick—or would become sick—because of it.

On Wednesday, more than 750 current and former staff members from the CDC, HHS and National Institutes of Health (NIH) accused Kennedy of spreading dangerous misinformation that fueled mistrust and contributed to the CDC HQ shooting, demanding by Sept. 2 that he stop, affirm CDC scientific integrity, and guarantee workforce safety.

They also argued Kennedy had jeopardized Americans’ health and undermined the nation’s readiness for public-health crises.

In a letter to Congress and Kennedy, which was posted on the Save HHS site, they wrote: “Health and Human Services Secretary Robert F. Kennedy, Jr., is complicit in dismantling America’s public health infrastructure and endangering the nation’s health by repeatedly spreading inaccurate health information.”

HHS, in response, said Kennedy was “standing firmly with CDC employees” to ensure their safety and well-being, adding: “In the wake of this heartbreaking shooting, he traveled to Atlanta to offer his support and reaffirm his deep respect. Any attempt to conflate widely supported public health reforms with the violence of a suicidal mass shooter is an attempt to politicize a tragedy.”

The Daily Beast contacted the White House, the HHS, Pfizer, and Moderna for comment.

Only the White House responded. Its spokesman, Kush Desai, said: “The Administration is relying on Gold Standard Science and is committed to radical transparency to make decisions that affect all Americans. Unless announced by the Administration, however, any discussion about HHS policy should be dismissed as baseless speculation.”