In the News

10 April, 2024

EXCLUSIVE: 'I Can't Walk, Talk Or Eat - Doctors Don't Believe What's Wrong With Me And I Think I'm Going To Die'

Millie McAinsh says she's 'constantly hurting' and claims doctors 'won't listen' to her wishes. The distressed teen is believed to be suffering with ME, a debilitating illness that is often misunderstood.

10 April, 2024

Longitudinal Cytokine And Multi-Modal Health Data Of An Extremely Severe ME/CFS Patient With HSD Reveals Insights Into Immunopathology, And Disease Severity

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents substantial challenges in patient care due to its intricate multisystem nature, comorbidities, and global prevalence. The heterogeneity among patient populations, coupled with the absence of FDA-approved diagnostics and therapeutics, further complicates research into disease etiology and patient management. Integrating longitudinal multi-omics data with clinical, health, textual, pharmaceutical, and nutraceutical data offers a promising avenue to address these complexities, aiding in the identification of underlying causes and providing insights into effective therapeutics and diagnostic strategies.

09 April, 2024

Chronic Fatigue Syndrome Isn't Just Misunderstood, It's Actively Neglected

Artist and musician Becca Thomas knew something was wrong when they went from working two jobs, making art, and exercising consistently to feeling winded from a single flight of stairs. It all started with a case of mononucleosis in 2017. "I never fully recovered after that and knew something was deeply wrong with my body," Thomas tells POPSUGAR, adding that it took four years to get any real answers. "In those four years I faced a lot of medical gaslighting and dismissal from negligent doctors."

09 April, 2024

Watch: Fermanagh Woman Bedridden For 12 Years Climbs Stairway To Heaven In ‘Emotional’ Challenge

An Irish woman left bedbound with ME/CFS for 12 years has said “there are no words” to describe how proud she is of everyone who helped her to climb the Stairway to Heaven in her home county.

09 April, 2024

Not In Your Head

Doctors sometimes dismiss physically sick patients with psychiatric diagnoses, entering errors into medical records that impede real treatment for years. Here’s how to protect yourself.

08 April, 2024

Marina Announces New Book Of Poems, ‘Eat The World’

Welsh singer Marina Diamandis, who was diagnosed last with ME/CFS, has written a book of poetry, Eat The World.

08 April, 2024

Are Insurers Wrongly Declining ME/CFS Claims?

Some people with Chronic Fatigue Syndrome say they are being denied personal insurance because insurers deem it to be a mental health issue, not a biomedical issue.

08 April, 2024

Conditioned Pain Modulation (CPM) Paradigm Type Affects Its Sensitivity As A Biomarker Of Fibromyalgia

Fibromyalgia (FM) is a widespread chronic pain syndrome, possibly associated with the presence of central dysfunction in descending pain inhibition pathways. Conditioned Pain Modulation (CPM) has been proposed as a biomarker of FM. Nonetheless, the wide variety of methods used to measure CPM has hampered robust conclusions being reached. To clarify the validity of CPM as a biomarker of FM, we tested two CPM paradigms (parallel and sequential) in a sample of 23 female patients and 23 healthy women by applying test (mechanical) stimuli and conditioning (pressure cuff) stimuli. We evaluated whether CPM indices could correctly classify patients and controls, and we also determined the correlations between the indices and clinical variables such as symptomatology, disease impact, depression, quality of life, pain intensity, pain interference, fatigue and numbness. In addition, we compared the clinical status of CPM responders (efficient pain inhibitory mechanism) and non-responders. We observed that only parallel CPM testing correctly classified about 70% of patients with FM. In addition, more than 80% of healthy participants were found to be responders, while the rate was about 50% in the FM patients. The sequential CPM test was not as sensitive, with a decrease of up to 40% in the response rate for both groups. On the other hand, we did not observe any correlation between CPM measures and clinical symptoms. In summary, our findings demonstrate the influence of the CPM paradigm used and confirm that CPM may be a useful marker to complement FM diagnosis. However, the findings also cast doubts on the sensitivity of CPM as a marker of pain severity in FM.

08 April, 2024

Lyme Disease Is Quietly Debilitating Millions Of Americans And Future Generations

An article by US Lyme Disease advocate Lindsay Keys, co-director of The Quiet Epidemic.

07 April, 2024

Opening Doors: Westfield High School Senior Overcomes Odds Despite Illness

On any given weekday, more than 2,600 students walk through the front doors of Westfield High School. But for 18-year-old Isaiah Hurd, passing through those doors last fall at the start of his senior year was the culmination of a journey he was determined to finish, against all odds. Hurd spent much of his high school career using a wheelchair or walker. But he didn’t always have mobility issues. In middle school, he was a tennis player at Indy Racket Club playing up to five days a week. But during summer break between eighth grade and freshman year, he was afflicted with ME/CFS.