In the News

19 May, 2024

New Insights Into ME/CFS Help Guide Intervention

Researchers at the NIH have found brain, metabolic, and immune abnormalities in people with post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), for which no disease-modifying treatments exist. Results from this small study were published in Nature Communications.

19 May, 2024

Lord Mayor Launches Groundbreaking Discover ME Campaign With Virtual Reality Experience

Belfast Lord Mayor Councillor Ryan Murphy has launched the powerful Discover ME campaign which begins on World ME Day.

19 May, 2024

‘I Was On The Brink Of Death - But Doctors Didn’t Even Understand My Condition’

Isabelle Handley-Allen first saw her life upended by ME/ CFS aged 13 - yet it was in her 30s, on the brink of death, that she realised the desperate place the still-misunderstood condition could take her.

18 May, 2024

Globetrotting Colchester DJ Bedbound By Long Covid Says Condition Cost Him His Career, Friends And Mobility

A young globetrotting Essex DJ “living the dream” before he suddenly became bedridden for a year with long Covid, has “lost his career”, most of his friends and predominantly spends his days lying down.

18 May, 2024

Multiple Chemical Sensitivity Recognized By State Of Massachusetts

Massachusetts Governor Maura Healey (D) proclaimed May 12 -18, 2024 as Multiple Chemical Sensitivity Awareness Week, first established in 1998 in numerous states across the U.S. Multiple Chemical Sensitivity (MCS)—also called chemical intolerance or Toxicant-Induced Loss of Tolerance (TILT), is characterized by disorders in one or more body systems, including respiratory, gastrointestinal, musculoskeletal, and neurological processes. It is thought to be caused by adverse reactions to environmental chemicals and/or biological substances such as mold. Affected individuals suffer fatigue, rashes, muscle and joint pains, memory loss, and other symptoms.

18 May, 2024

Complementary And Alternative Medicine To Treat Fibromyalgia Symptoms. A Systematic Review

This study aims to investigate the current evidence for the use of complementary and alternative medicine (CAM) in fibromyalgia (FM). A systematic review was conducted searching for PubMed, Scopus, CINAHL, PsycInfo, and Web of Science databases. Randomized controlled trials published up to December 2023 in peer-reviewed journals were included. Methodological quality was assessed by the Quality Assessment of Controlled Intervention Studies tool. A total of 216 articles were identified and 15 constituted the final sample. The type of CAM most used was traditional Chinese medicine (60%), and the most common instrument used was the Fibromyalgia Impact Questionnaire (60%). Our review was grouped into four themes based on the origin of the therapies: 1) Traditional Chinese Medicine; 2) Japanese natural harmonization (eg, Reiki); 3) Ayurvedic Medicine; and 4) Other non-drug therapies. Our systematic review showed that there is a wide range of CAMs used to treat FM. Most of the clinical trials have shown significant results for the effectiveness of these interventions in both physical and mental health outcomes of FM as compared to control groups. However, the heterogeneity of the interventions and outcomes warrants further studies on this topic.

17 May, 2024

Survey: How People Experience Chronic Illness At Work

Harvard Business Review wanted to learn more about how people experience long Covid and other complex chronic medical conditions at work. In a survey that garnered more than 200 responses, we learned that while most non-ill respondents felt their employers were understanding of health issues, most chronically ill respondents disagreed. Chronically ill respondents also told us about the types of accommodations they’ve been able to access, barriers to those accommodations, and their knowledge that they can still achieve — even if the way they work looks different. We also heard from non-ill respondents who shared their strategies for creating more-inclusive organizational cultures.

17 May, 2024

A Controversial Medical Conference Is Taking Place Behind Closed Doors, So The ME Community Calls It Out

The 11 to 17 May 2024 is myalgic encephalomyelitis (ME) Awareness Week. This year, two major conferences are taking place throughout the week. One is the inaugural ‘Unite To Fight’ conference – a first of its kind community-driven, free long Covid and ME event. The other is the British Association of Clinicians in ME/CFS’s (BACME) annual gathering. And unlike ‘Unite To Fight’, BACME’s conference affairs are taking place behind closed doors. Given this, alongside a raft of other concerns, members of the ME community, coordinated by campaign group the Chronic Collaboration, have written to the group’s chair. Notably, the letter sets out a damning litany of BACME’s historic and current harms towards people living with the devastating disease.

17 May, 2024

Louth Man’s Battle With Painful Fibromyalgia He Calls The ‘Phantom Illness’

Always an active man, involved in rugby most of his adult life, in recent years Irish man Seamie Briscoe found he was wracked with inexplicable pain and exhaustion, which doctors initially found difficult to identify. With fibromyalgia now the most likely diagnosis for his crippling pain and tiredness, Seamie describes how he copes with this silent but severe ailment.

16 May, 2024

Can A Person Have Both Lupus And Fibromyalgia?

Lupus and fibromyalgia are both chronic, rheumatic conditions that can share similar symptoms. In some cases, it is possible for a person to have both conditions at the same time.