‘…speaking was difficult and even thinking was often too much effort. Her parents did not expect her to survive…’
Today Hanne Egeland is happy and full of energy, but only 4 years ago she was confined to her bed.
Watch the broadcast (it’s in Norwegian, but still very moving – and an English transcript is below)
Many Norwegians hit by ME – NRK News 19.09.2012
The introduction explains how many thousand Norwegians are affected by ME, how difficult it is to diagnose and how limited treatment options are. They then go on to mention the study published by Harvard, which for the first time looks at the effects of therapy as a treatment for ME.
“Today Hanne Egeland is happy and full of energy, but only 4 years ago she was confined to her bed.” Hanne was bedridden for 2.5 years, fed through a tube and at her lowest she weighed only 28 kg (62 lbs. or 4.4 stone). Speaking was difficult and even thinking was often too much effort. Her parents did not expect her to survive.
Hanne and other adolescents like her are the focus of a new independent study by Harvard University of the effects of the Lightning Process as treatment for ME. Silje Endresen Reme of Harvard University describes the results of the study: http://www.ncbi.nlm.nih.gov/pubmed/22989369
Hanne Egeland made quick and dramatic improvements with the Lightning Process, and she explains how she learnt how she could influence the signals the brain sends to the body. And after only two hours she was able to see members of her family she had not seen for two years.
Per Magnus, Division Manager, Public Health Authority (PHA) explains that they are keen to start working with therapies such as LP and they are planning for a larger study. He also acknowledges there has been some criticism that it has taken such a long time for the PHA to look into this.
Dr. Kari Tveito, consultant at the ME/CFS Center, University Hospital, Oslo, says the results from the study are positive, but also mentions the complexity of the illness and the importance of continuing to consider other treatment methods, such as chemotherapy – she mentions a study that came from Bergen, Norway one year previously where 2/3 of participants showed dramatic improvements.
In answer to the question why the illness is so difficult to diagnose Dr. Tveito replies that many patients appear healthy, and that many of the symptoms they have are common symptoms most people experience throughout their lives (aches and pains, headaches, insomnia, tiredness etc.), the difference with people affected by ME is that the symptoms are extreme and prolonged. There is also no blood test or other reliable test that can be used to confirm ME, which adds further complexity.