Can a New Study Revive My Children's Stalled Lives?

Harbinder's family has faced significant challenges due to myalgic encephalomyelitis (ME) and Long Covid, conditions affecting about 1.3 million people in the UK. A new £1.1 million study at Imperial College London aims to explore the links between these two debilitating conditions, which could potentially lead to better understanding and treatment options.

Last updated: 08 October 2023 (BST)

What’s happening now

As the impact of Long Covid and ME continues to resonate throughout the UK, a new study funded by the ME Association aims to investigate the immunological connections between the two conditions. This research comes as many families, like Harbinder's, navigate the day-to-day challenges posed by these illnesses, which can severely limit quality of life and academic performance. The study seeks to identify biomarkers that could help clarify the mechanisms behind these conditions, ultimately leading to improved care and treatment.

Key takeaways

The new study, known as the Rosetta Stone study, is funded with £1.1 million from the ME Association.
It aims to analyse the immunological profiles of 250 participants with ME and 250 with Long Covid.
Over 1.3 million people in the UK are affected by ME and Long Covid.
Researchers hope to identify biomarkers that could lead to better diagnoses and treatments.
Dr. Charles Shepherd emphasises the overlap between Long Covid and ME, calling for greater understanding.

Timeline: how we got here

The journey towards understanding ME and Long Covid has evolved significantly in recent years. Here’s a brief timeline of key events:

2000s: ME/CFS officially recognised as a chronic illness, but research funding remains limited.
2020: The COVID-19 pandemic begins; many survivors report lasting symptoms resembling ME.
2021: Increased awareness and research funding for Long Covid and its connections to ME.
August 2023: The ME Association announces funding for the Rosetta Stone study at Imperial College London.
October 2023: The study commences, aiming to recruit participants and begin analysis.

What’s new vs what’s known

New today/this week

The Rosetta Stone study has been officially launched, with hopes to unravel the complicated relationship between Long Covid and ME. This research appears particularly timely as the incidence of both conditions continues to rise, especially among children and young adults.

What was already established

Historically, ME and Long Covid have been under-researched. However, recent developments have highlighted the significant overlap between the two, leading to increased funding and interest in understanding their shared characteristics.

Impact for the UK

Consumers and households

For families like Harbinder's, the daily realities of ME and Long Covid can be devastating. Children and adults alike face overwhelming fatigue, cognitive difficulties, and social isolation that can hinder educational achievement and personal development. With schools often unprepared to support these children, many families are left searching for answers and appropriate care.

Businesses and jobs

The impact of these conditions extends beyond individuals to the workforce. Many affected individuals find their ability to work significantly hampered, leading to loss of income and increased reliance on social services. Employers may need to adapt their workplaces to support employees managing these chronic conditions.

Policy and regulation

The Department of Health and Social Care has made commitments to improve care for those suffering from ME and Long Covid, including funding research initiatives like the DecodeME study. However, many advocate for more comprehensive funding and policy changes to address the needs of those affected.

Numbers that matter

1.3 million: Estimated number of people in the UK living with ME and Long Covid combined.
£1.1 million: Total funding for the Rosetta Stone study aimed at exploring immunological links between ME and Long Covid.
250: The number of participants with ME and Long Covid to be studied, alongside matched healthy controls.
5: Years of increased research funding and attention towards ME and Long Covid following the pandemic.
16: Age at which some of the most severely affected patients, such as schoolchildren, begin to experience debilitating symptoms.

Definitions and jargon buster

Myalgic Encephalomyelitis (ME): A chronic illness characterised by severe fatigue, cognitive difficulties, and sleep problems.
Chronic Fatigue Syndrome (CFS): Another term for ME, often used interchangeably.
Long Covid: A term describing long-lasting symptoms following COVID-19 infection.
Postural Orthostatic Tachycardia Syndrome (PoTS): A condition that affects blood flow, causing dizziness and fainting upon standing.

How to think about the next steps

Near term (0–4 weeks)

Families coping with ME and Long Covid should monitor their symptoms and seek appropriate medical advice. It is crucial to stay informed about local support services and potentially engage with research studies if eligible.

Medium term (1–6 months)

As the Rosetta Stone study progresses, families may begin to see the implications of its findings. Continued advocacy for additional research funding and resources will be essential as awareness of these conditions grows.

Signals to watch

Updates from the Rosetta Stone study regarding participant recruitment and initial findings.
Increased funding announcements for related ME and Long Covid research initiatives.
Changes in government policy related to healthcare provision for those with chronic fatigue disorders.

Practical guidance

Do

Stay informed about ongoing research and potential treatment options.
Seek support from local and national ME and Long Covid organisations.
Engage with healthcare professionals for personalised management strategies.

Don’t

Ignore symptoms; early intervention can be vital for management.
Assume that all healthcare providers understand ME and Long Covid; advocate for your needs.
Neglect mental health; consider support for emotional well-being as part of your care plan.

Checklist

Monitor daily symptoms to track changes over time.
Explore local support groups for connection and shared experiences.
Maintain communication with educators about your child’s needs.
Research available treatments and therapies.
Engage with ongoing studies to contribute to the wider understanding of these conditions.

Risks, caveats, and uncertainties

Despite the promising nature of the new study, there remain uncertainties surrounding both ME and Long Covid. Individual responses to these conditions can vary widely, and the scientific community still lacks a comprehensive understanding of the underlying causes. As a result, researchers caution against expecting immediate solutions, highlighting that while progress is being made, more research is needed to uncover definitive answers.

Bottom line

The Rosetta Stone study represents a significant step forward in understanding the links between Long Covid and ME. As families like Harbinder's continue to navigate the challenges posed by these conditions, there is hope that ongoing research will lead to better diagnostic tools and effective treatments, ultimately improving the quality of life for millions across the UK.

FAQs

What is the Rosetta Stone study?

The Rosetta Stone study is a new research initiative aimed at exploring the links between Long Covid and myalgic encephalomyelitis (ME), examining immunological profiles to enhance understanding and treatment options.

How many people are affected by ME and Long Covid in the UK?

Approximately 1.3 million people in the UK are believed to be affected by ME and Long Covid combined, highlighting the need for increased research and support.

What symptoms are associated with ME and Long Covid?

Common symptoms include overwhelming fatigue, cognitive difficulties, sleep disturbances, and, in some cases, additional conditions like Postural Orthostatic Tachycardia Syndrome (PoTS).