ME sufferers across Greater Manchester have been given a timely boost, after a charity raised £350,000 to trial a drug on usually used to treat some forms of cancer.
The charity Invest In ME have raised the cash towards a clinical trial of Rituximab, a drug also used by arthritis sufferers.
Greater Manchester charity Bury/Bolton ME/CFS Support Group fully supports the trial, hoping it will bring about more treatment options for ME sufferers.
Caroline Higson, Group Leader at BBME, told MM: “ME is a very isolating illness. Often, sufferers can’t even get to a GP to discuss how ill they are.”
Caroline, 28, from Harwood in Bolton, suffers from ME/Fibromyalgia and Ehlers Danlos Syndrome, having been diagnosed with ME at 15.
She explained: “I was initially told my symptoms were ‘all in my head’, and sent to a psychiatrist for treatment, as was the pathway at the time.
“Unfortunately, treatment hasn’t changed much since then.”
Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (CFS), affects around 250,000 people in the UK, with one in four sufferers having sever symptoms.
The primary symptom of ME is severe fatigue, resulting in significantly reduced mobility and often difficulty concentrating in more severe cases.
With no cure for ME, the treatment patients are currently offered is limited, including Cognitive Behavioural Therapy and Graded Exercise Therapy.
Caroline told MM: “For housebound patients treatment services are extremely limited. Graded Exercise Therapy has actually been known to have harmed some sufferers.”
Recommended treatments and details of symptoms are advised to GP’s by The National Institute for Health and Care Excellence (NICE).
In the past these guidelines were reviewed with regards to new treatments or practices available every two years.
NICE has now placed ME on a ‘static list’, where the clinical guidelines will only be revisited every five years.
This means that all new research will take a lot longer to be put to trial and get onto NHS prescriptions.
Caroline told MM: “Sufferers feel forgotten.”
The Rituximab trial shows ‘a future for patients’, allowing for many hopes of sufferers to become a reality.
Caroline commented: “This is why the Rituximab trial is fantastic. It is something tangible we can be offered.”
BBME offers a supportive and understanding environment to those in Greater Manchester suffering ME, as well as free weekly yoga sessions and monthly hydrotherapy sessions.
The charity is lead by a small number of volunteers who suffer and care for the condition.
Caroline met her husband, a fellow ME sufferer, as part of the group, and they have been married for 11 years.
For more information about the Rituximab trial visit:http://www.ukrituximabtrial.org/Rituximab%20news-Aug14%2001.htm
For more information about Bury/Bolton ME/CFS Support Group visit: http://www.mesupportgroup.co.uk/
Picture courtesy of Steve Smith, with thanks.
