The i: ‘Doctors need to start believing us’: This is what ME patients say Sajid Javid needs to change

The i covers the stories of 3 people with severe ME/CFS and the struggles they have faced which has not been helped by poor treatment from the medical profession. Yet they are hopeful that the recent statement from Sajid Javid, the All-Party Parliamentary Group on ME Report, and the 2021 NICE Guideline will bring much needed improvements for anyone affected by the condition.

Comment from Tony Britton, PR Manager, ME Association:

“This started out a few days ago as ‘shout-out' for a broadcaster for a Severe ME ‘case study' when Channel 5 News were looking to tell a similar story – but they pulled out the day before Sue Gray published her report on Partygate because they then had no crews available. At the time, some people here doubted whether anybody with Severe M.E. would, or indeed could, come forward and be willing to reveal the awful way they had been stigmatised, gaslit and disbelieved by the very healthcare professionals and social care staff who should have been taking care of them. Well, actually the shout-out worked! As you can read in this piece in ‘The i' , because of the response to the Channel 5 request, we already had some poignant stories in hand from people living less than a shadow of their old lives because of their M.E. Thank you everyone who offered to tell their stories. We couldn't have done this without you!”

Comment from Dr Charles Shepherd, Hon. Medical Adviser, ME Association:

“Following on from what Tony has just said…. Thanks again to everyone who spoke about their lack of proper care and made this such a powerful piece of journalism about the problems still facing people with severe and very severe ME/CFS.”

ME patients are campaigning for their voices to be heard after the health secretary said treatment of the illness would be changing

Extracts

When Gigi Joseph-Garrison was 16 years old, she found herself in hospital. She could barely move and was given a feeding tube because she couldn’t eat. The doctor assigned to her case told her she had an eating disorder. But she believed that the diagnosis was wrong.

Joseph-Garrison, now 20, had developed myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome or ME/CFS. When she first went to her GP about it, she actually suggested the ME diagnosis, having done some research online.

From that point, she quickly deteriorated. “It went from quite mild ME to extremely severe ME, I couldn’t eat any food, it was just too much energy”, she says. That’s when the now-20-year-old was admitted to hospital.

Having already been misdiagnosed with the eating disorder, the doctor insisted that ME was a mental illness, rather than a physical one, and tried to have Joseph-Garrison sectioned. “It was the worst thing I’ve ever experienced,” she says.

She experienced photophobia (sensitivity to light), which is common among ME patients. “It was searing, horrific pain for hours on end,” she says. “[The doctor] would force me to sit up and my body was very weak and couldn’t do that easily.”

He also instructed physios to see her twice a day. “It was an insane amount of exercise for someone who just needs rest,” she says. “It could have killed me.”

Her mum had been raising awareness of her daughter’s situation on Facebook and eventually, the ME community stepped in to help. Her local MP got involved and she was assigned a different doctor. “The ME community is amazing,” she says. “They saved my life.”


Dr Charles Shepherd, medical adviser for the ME Association thinks the government initiative needs to be a turning point. “The longstanding culture of denial, ignorance and neglect about ME has to end.” He says the publication of the APPG report and the comments from Sajid Javid “cannot be ignored”.

As well as implementation of the NICE guideline and training for health professionals, Shepherd says we need “ringfenced Government funding for biomedical research into the cause and treatment of ME that is on a par with other neuroimmune diseases”.


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