Doctors 'do more harm than good' sending ME patients to gym
Thousands of people are being put at risk as doctors tell patients with a devastating neurological condition they should go to the gym, it has been warned.
A charity that supports people with Myalgic Encephalomyelitis (ME) has said patients in Northern Ireland are being failed by a shocking lack of understanding about the condition. People with ME can suffer a range of symptoms, from headaches and extreme sensitivity to light and sound, to agonising pain, memory and concentration problems.
In some cases, the person can't be touched, while others have to be tube fed.
The Hope 4 ME and Fibro Northern Ireland charity has called for health bosses to act urgently to prevent further damage being done to the 7,000 people here living with the debilitating condition.
Joan McParland from the charity said: "As it stands, we have patients being told they should go to the gym which flies in the face of global research and is actually leaving people in agony and causing untold damage.
"It is absolutely horrific that people are being given the wrong information and ending up bed-bound for years as a result, but the sad fact is that many medical professionals just don't know the most up-to-date research about ME."
Joan (64), who was diagnosed with ME almost 20 years ago, was confined to her bed for seven years after pushing herself too hard.
"One day I was perfectly healthy and the next day I woke up with what felt like a flu-like illness, if you can imagine the worst tummy bug or the worst hangover you've ever had, that is what I felt like," she said.
"It felt like I had drunk a couple of bottles of whiskey the night before but the nausea, the pain, the dizziness didn't go away. At the time, I was working in a school and I just assumed I had picked up a bug from the kids, which is something that happened from time to time. I rang work and told them I had a tummy bug and I would be back in a few days."
Joan tried to resume her normal life on a number of occasions but on her third return to work, she collapsed and spent the next seven years in her bed.
"I couldn't stand up, I couldn't cope with any noise or light, it was such a lonely, difficult period in my life," she continued. "I actually felt like I was dying and, in fact, I actually thought that I wouldn't mind if I did die in the middle of the night.
"It wasn't that I was suicidal or anything like that, but I just felt so awful."
Health authorities are currently reviewing the best treatment for ME after a growing amount of research has found that exercise can harm patients with the condition. However, the results of the review are not expected to be published until 2020. Joan said it is essential that NHS officials in Northern Ireland act before then.
"It's not that doctors mean to do harm, it's because they simply don't know the latest research and facts," she said.
"The review decisions will not be published until October 2020 and patients remain at risk until then."
A Department of Health spokeswoman said training in the management of ME is contained in the curriculum for GPs.