'ME affects more than 400,000 people in the UK. Symptoms include profound fatigue that does not improve with sleep, as well as headaches, brain fog and muscle pain.
Severe cases can be fatal, with patients unable to eat or drink.
There are no approved treatments for ME and no specialist NHS services for severely ill patients. ME has long been neglected by medical research, and for decades was dismissed as a psychological condition that is “in the mind”. The Times has campaigned to improve inadequate NHS care for patients with the condition.'
'Throughout her illness, Dobbin has been shocked by almost non-existent NHS services. She was referred to an NHS clinic for
long Covid, where there were “loads of lovely people”, including physios and therapists, who offered tips such as meditation and sleep hygiene. “But there were no doctors,” she said.
“In what other illness would you be sent to a clinic with no doctors? This is a life-debilitating, life-decimating illness. I know people with ME who are tube-fed, who have to be turned. It’s disgraceful
not to have anywhere to go on the NHS.”
'The number of people with ME has spiralled since the pandemic, because Covid-19 can trigger the illness, which has similarities with long Covid. Dobbin said Burnham’s government must fund medical research to help ME patients “get our lives back”.'
'Campaigners are calling on ministers to commit £15 million to allow a
major new genome sequencing study called Sequence ME & Long Covid, led by the University of Edinburgh, to get off the ground. ME received only £6.6m in government funding in the past five years, compared with £79.1m for Parkinson’s and £496m for dementia.'
'Karen Hargrave, co-founder of charity ThereForME, said: “Beth has shown great courage in speaking out about severe ME. We urge the prime minister to meet her and commit to fair funding for ME research, starting with making up the £15 million shortfall facing the Sequence ME and Long Covid project.
“This groundbreaking genetic study offers real hope to hundreds of thousands of people with ME, who have been left without effective treatments for far too long, at huge cost to them, their families and the economy.”