Harbinder reflects on a time when her children were “on a path toward a promising future.”

Currently, all three of her children have been diagnosed with myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS).

Her son Talvin has also been diagnosed with Long Covid after experiencing three infections of Covid-19 by the age of eight.

They all endure “overwhelming fatigue,” sleep disturbances, and cognitive difficulties, with two of them reliant on wheelchairs for mobility.

Nonetheless, Harbinder holds out hope for a new £1.1 million study aimed at investigating the connections between Long Covid and ME, conditions believed to impact around 1.3 million individuals, both children and adults, in the UK.

Supported by the ME Association based in Buckinghamshire and conducted at Imperial College London, the Rosetta Stone study aims to identify biomarkers and “unravel the immunological profile” that characterizes both disorders.

Harbinder, who resides in Redbridge, north-east London, shares, “My oldest daughter, now 15, was academically gifted and athletic – she even played cricket at the county level for Essex.”

“My twins, Tara and Talvin, who are now 12, were equally talented, and all three were in good health. We loved outdoor activities as a family, including camping and skiing.”

Their current reality is markedly different.

“They are effectively facing learning challenges now,” Harbinder explains, having resigned from her role as managing director of an international consultancy to care for her children.

“They struggle to recall names, finish sentences, and comprehend written material.”

Each child presents unique symptoms.

“My eldest, Simrun, has also been diagnosed with PoTS, which causes her to faint when she stands up,” Harbinder notes.

At times, Simrun has been confined to her bed.

“She is under the care of Great Ormond Street Hospital and has regained some mobility, but we haven’t managed to fully control her condition. There remain many unanswered questions,” Harbinder states.

“She deals with blurry vision, persistent ringing in her ears, joint and back pain, constant nausea, and an inability to eat.”

Meanwhile, Talvin suffers from “debilitating headaches” every day, an issue he has faced for the past four years.

“We have had difficulty finding appropriate education for them. No one truly understands how to help these children; we are navigating this situation in isolation.”

“Their lives have essentially come to a halt.”

Harbinder welcomes the new study in hopes it might provide some clarity.

Despite facing “some very difficult times,” she mentions that the family has “come to terms with their situation.”

She adds, “We share laughter every day. We can still enjoy watching movies together and occasionally go out for coffee or maybe a trip to the park.”

Tim Goodwyn, 37, longs for the ability to “explore the world” with his wife and young son, but finds himself mostly confined at home.

“I spend most of my days resting in bed. I can’t stand for long or walk more than a few steps,” he shares.

“My hygiene routine is limited; I can manage a bath once a week, and my wife helps with washing my hair. She has to push me in a wheelchair to my medical appointments.”

Tim, who lives in Bury St Edmunds, Suffolk, was working as a software developer when he contracted a virus in November 2023.

“It felt like a bad cold, and my Covid test came back negative.

“Even after the virus cleared, I remained achy, fatigued, and my energy never returned.”

Despite his attempts to reduce strenuous exercise while working and taking walks, he had to take long-term sick leave in August 2024.

“My body has lost its ability to recuperate after exertion,” he admits.

“If I engage in any activity, I face even more severe fatigue a day or two later, accompanied by headaches, nausea, heart palpitations, and alternating between feeling hot and cold.”

“The closest thing to a remedy is rest, but we still lack understanding of what is causing this illness.”

“It’s a complex illness that affects many systems, including the brain, nervous system, muscles, and heart.”

Tim expresses frustration over the historical underfunding of ME research, though he acknowledges a rise in recent efforts, partially due to the impact of Covid.

“This research might not lead to an immediate cure, but it could bring us closer,” he remarks.

The three-year study aims to involve 250 individuals with ME and 250 with Long Covid, paired with matched healthy groups.

The analysis will include stool, blood, and saliva samples from volunteer participants to create “an immunological profile” for both ailments.

“Researchers still do not fully comprehend the immune system’s role in causing lasting symptoms in some while sparing others,” according to Imperial officials.

The study will also collaborate with the DecodeME team in Edinburgh and the ME/CFS Biobank at the London School of Hygiene and Tropical Medicine.

Dr. Charles Shepherd, the honorary medical adviser for The ME Association, states, “We are now aware that a significant number of Long Covid patients meet the diagnostic criteria for ME.

“It took far too long for the medical community to recognize the overlap between these two conditions.

“It is logical to investigate the shared characteristics they possess.”

Prof. Danny Altmann from the Department of Immunology and Inflammation at Imperial notes there has been “limited research” into the connection between these “post-infectious, persistent conditions.”

“Millions have seen their lives devastated by the disabilities associated with Long Covid and ME/CFS,” he adds.

“We hope our research will clarify the underlying mechanisms and help guide future clinical trials and treatments.”

Dr. Rae Duncan, a consultant cardiologist at Newcastle Hospitals NHS Foundation Trust and an advisor on Long Covid at the World Health Network, remarks on the distressing cases she encounters.

“I treat patients starting from age 16, and it is heartbreaking to see schoolchildren whose lives have been completely disrupted by this virus,” she says.

“I also care for young parents who are too unwell to look after their children.”

“A crucial need is the provision of research funding that matches the demand due to the level of need and disability.”

She regards the new study as “a fantastic initiative.”

“There is an urgent need for more biomedical research into the similarities and disparities between Long Covid and ME/CFS, focusing on the effects on various bodily systems to identify new and improved treatment options.

“While they are not the same medical condition, both can be extremely debilitating.”

A representative from the Department of Health and Social Care indicated that its ME/CFS delivery plan aims to “transform care” and “enhance training for NHS staff.”

“Everyone suffering from ME/CFS and Long Covid deserves access to the care and support they require.

“That is why we have allocated £3.2 million to the DecodeME study to unveil the genetic components of ME/CFS, in addition to funding essential research into diagnosing and treating Long Covid,” they stated.

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