The children left bed-bound by fatigue

Felicity Monk uncovers the plight of numerous New Zealand children and teenagers grappling with a debilitating illness, prompting a challenging question: How do you handle a child who becomes unwell and never fully recovers to resume school?

Back in time, Teresa* faced an alarming situation as her three children, aged 9, 12, and 13, battled glandular fever. Rather than recuperating, their health deteriorated rapidly. Energy levels declined, sensitivity to light, sound, and motion emerged, and they grappled with persistent muscle and joint pain. Everyday tasks like sitting or standing became insurmountable.

Following extensive examinations, Teresa’s children received a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This ailment, devoid of a known remedy, stole their vitality and confined them to home, away from school, for a challenging trio of years.

ME/CFS, impacting around 20,000 to 25,000 New Zealanders, including youngsters, is a multifaceted condition manifesting in an array of debilitating symptoms exacerbated by physical exertion. Sufferers in severe cases are bedridden, necessitating constant care.

Despite its prevalence, ME/CFS often goes unnoticed, overshadowed by ailments like multiple sclerosis and Parkinson’s. Its subtle essence camouflages the struggles of severely afflicted patients who endure their suffering in seclusion.

Teresa’s household bore the brunt of ME/CFS, triggering a significant upheaval in their lives. Her children’s education took a hit as they couldn’t attend school, prompting Teresa to quit her job and homeschool them. The societal repercussions were equally weighty, with social interactions dwindling due to misconceptions and fear of contagion.

ME/CFS, known by various names over time, has incited debates and misconceptions. Recent research has unveiled its physiological underpinnings, challenging antiquated notions linking it to psychological triggers.

Despite evolving comprehension, ME/CFS patients grapple with scrutiny and doubt, fueling persistent endeavors to raise awareness and advocate for precise medical interventions.

The film Unrest, narrating Jennifer Brea’s ME/CFS journey, has played a pivotal role in debunking stigmatization and misinformation surrounding the illness. Brea’s personal account underscores the severe impact of ME/CFS and the urgent need for broader acknowledgment and assistance.

Brea’s narrative stands as a poignant reminder of the challenges faced by ME/CFS patients and the necessity for a more empathetic and knowledgeable stance toward this incapacitating condition.

Witnessed in her hallway, Brea can be observed crawling on her hands and knees before collapsing face-first in exhaustion. At night, she often dons ear plugs and an eye mask due to her light and noise sensitivities, struggling to communicate with her spouse, frequently stuttering and groaning before giving up.

Brea indicates that prompt diagnosis of ME/CFS and understanding from a physician could have potentially averted her severe deterioration. Despite significant progress, she still grapples with weariness and relies on a wheelchair.

SKEPTICISM HAMPERING THERAPY

Brea’s story sheds light on the skepticism prevalent among many healthcare providers regarding the gravity of ME/CFS, particularly in pediatric cases. A survey in the UK on families with kids battling ME/CFS revealed that 90% were concerned about professionals not believing them, with some accused of fabricating the illness.

In New Zealand, the name Ros Vallings commands respect for her prowess in diagnosing and managing ME/CFS. Revered as a leading authority in the field, Dr. Vallings has devoted over four decades to researching ME/CFS, treating numerous individuals, and spearheading significant studies.

Dr. Vallings estimates that 20% of ME/CFS patients achieve full recovery, 20% regain enough health to lead relatively normal lives, while the rest may continue to struggle. Her focus lies on stress management, exercising caution with physical activity, ensuring proper nutrition, managing sleep, and alleviating pain for each patient.

A project named “Towards Wellness” in Tauranga, endorsed by Vallings, strives to support those with ME/CFS. Co-founded by Kira Follas, a former ME/CFS patient, the initiative underscores the significance of holistic approaches in effectively managing the condition.

Considering the success of endeavors like “Towards Wellness,” online versions of supportive programs are in the pipeline, potentially yielding significant benefits for individuals coping with chronic illnesses.

Coping with ME/CFS in children poses distinct obstacles, as discovered by Teresa. Teaching youngsters to balance activity within their energy limitations is vital, although demanding. Teresa’s younger offspring have rebounded, excelling academically, while her eldest daughter continues to contend with constraints in her daily life.

Ella, a young ME/CFS sufferer, juggles school with the aid of a teacher, navigating stress and ensuring effective rest. Despite having supportive peers, Ella grapples with frustration due to her restricted physical and mental reserves, barring her from engaging in cherished activities.