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ME/CFS in the Media
It has been four years since 35-year-old former builder Dan Harris has been able to get out of bed.
He lies for 24 hours a day in the dark, in silence, wearing an eye mask and earplugs.
Any variation to this is a strain on his body, incredibly fatiguing and painful.
Dan has the neurological disorder myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The disease affects many parts of the body — from the brain and muscles to the cardiac, nervous and digestive systems.
Long segment about #MECFS on BBC Breakfast (15 mins) includes interviews with Dr Binita Kane,Dr William Weir, Karen Hargrave and Oonagh Cousins Mentions symptoms, severity, history, Melvin Ramsay, psychological framing, NICE guidelines, problems receiving care for severe patients, debunked Graded Exercise and pacing.
From harmful ‘therapies’ to social services referrals, the notion that this illness is psychosomatic is having devastating effects" - George Monblot (The Guardian)
For seven years, Alem Matthees from Western Australia has remained confined to his dark, soundproof bedroom, too ill to read, watch TV, or socialise online. His body lacks energy to the extent that even short interaction with family members can deteriorate his health. Bedridden, he can only manage brief periods of sitting to consume a liquid meal or use a commode.
One of the psychiatrists involved in removing Ean from his parents - Mr Simon Wessely - later denied his involvement and to this day is on the NHS Board of Directors and has been frequently awarded and promoted regardless of the unethical treatment towards ME/CFS patients that he's instructed and participated in for decades
It is still unsafe and even dangerous for severe ME/CFS patients attending NHS hospitals. Patients continue to suffer, be kept against their will in overstimulating and stressful environments, disbelieved by staff and pressured into psychiatric or exercise based 'treatments' due to poor understanding of the condition and staff refusing to comply with 2021 NICE guidelines.
In 1993 a TV segment 'ME is still not taken seriously' aired featuring an interview with an ME patient who, was a teenager, was taken from his parents and tortured by psychiatrists who were convinced his condition was psychosomatic and that he had 'school phobia'. Ean Proctor (who physically could not lift his arms to swim) was dropped in a swimming pool, banned from seeing his family and kept against his will.
"The mother of a woman who died after being discharged from hospital with Myalgic Encephalomyelitis (ME) says the NHS has no way to treat the condition. Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021. A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients."
"His brother Josh passed away in August 2023 having battled with severe Myalgic Encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, for six years."
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"How renowned scientist Ron Davis is fighting to cure his son’s chronic fatigue syndrome, and why COVID patients may benefit."
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"Edina Slayter-Engelsman lived in Scotland for more than 30 years, but last month the Dutch national returned to the country of her birth to end what she describes as the “unbearable suffering” she had experienced living with severe ME."
As the inquest into ME suffer Maeve Boothby-O'Neill concludes, the Mirror looks at other cases of those whose lives have been ripped apart by this cruel and widely misunderstood disease
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