Reprinted with the kind permission of Cort Johnson and Health Rising.
By Cort Johnson
We rarely get country-wide surveys and it’s definitely worthwhile taking a look at one when they occur. Norway, of course, is an interesting place these days with strong advocacy efforts getting significant media attention and pushing the Norwegian government to fund the Fluge/Mella Rituximab trials. Norway, as a country, appears to be a bit more of Chronic Fatigue Syndrome than other countries- but is that awareness showing up in improved health?
1100 people answered the survey Awareness may be higher than other countries but support is still very limited with just one (controversial) young person care facility and one hospital with a clinic for adults with ME/CFS.
Work at a clinic in Norway, however, sparked the B-12/MTHFR trial being carried out by the Open Medicine Institute and the 150 person, multi-center Fluge/Mella Rituximab trial is now getting underway. Norway, with its small resources and small population is definitely making a difference in the ME/CFS world.
The Norwegian ME Association collected responses from 1100 of the approximately 10-20,000 people believed to have Chronic Fatigue Syndrome (ME/CFS) in Norway.
Let’s see what the (abridged) English version of the survey says is happening in Norway.
Economically, ME/CFS patients in Norway are, like ME/CFS patients everywhere – they’re hurting and in need of assistance. More than half have received ‘temporary rehabilitation” benefits and a quarter have received 100% disability. That’s an enormously high percentage of disability in disease in a younger population.
(These high rates of disability will have large economic effects. A recent study compared the economic effects of severe disorders as stroke, spinal cord injury, traumatic brain injury, multiple sclerosis and limb loss and musculoskeletal disorders (arthritis/back pain). It was the musculoskeletal conditions (as well as traumatic brain injury), not stroke or multiple sclerosis, that had the most impacts on the health care system in the United States. This is because these diseases, like Fibromyalgia and to some extent ME/CFS, are relatively common, don’t respond to treatment well, and/or often strike the young.)’ Two-thirds of those surveyed did NOT feel that high levels of stress contributed to their getting ME/CFS.
Despite the high costs posed to society, diagnosis rates of ME/CFS are low in Norway with about half those surveyed taking three or more years to diagnosed and twenty percent taking over ten years. (This is for a disorder that does not require specialized tests to get diagnosed – just physician knowledge.)
The fact that 75% of patients assumed a viral or bacterial agent was involved speaks to the flu-like symptoms, prevalent in this disorder and the high rate of infectious onset.
A third of the survey recipients associated prolonged stress with their onset of ME/CFS which meant that two-thirds did not feel they were under undue stress when their illness began. Stress, it’s clear, cannot explain the onset of most ME/CFS patients in Norway.
The fact that “significant exercise-induced energy failure, as a result of physical or mental strain” was the most problematic symptom in this large group, validates the Canadian Consensus Criteria and International Consensus Criteria’s conception of this disorder. It also suggests that as Fibromyalgia is the quintessential pain syndrome, ME/CFS is the surely the quintessential ‘exertion challenged” syndrome. In no other chronic disorder are patients probably as activity challenged as in ME/CFS.
The table of medical treatments was not available, unfortunately, but the summary provided some interesting findings. Meditative practices were one of the few approaches that were helpful and rarely caused harm.
No breakthroughs in treatment are found in Norway, but basic approaches can be helpful. Pacing and relaxation techniques such as meditation and qigong improved or even greatly improved the health of about two-thirds of those who’d tried them, while only making 1/10 patients who tried them worse. Seeing ME/CFS experts did make a difference.
Specialist ME/CFS help makes a difference while hurting few as well.
About 2/3rds of the patients attending a clinic with ME/CFS experts improved while only 1/20 declined. The survey reported that 75% of Dr. De Meirleir’s patients surveyed have gotten better while only 1 out of 10 have gotten worse. In contrast the Clinic For Children (run by Wyller?) received very poor results (1/10 better; 25% got worse)
Exercise therapy and the Lightning Process both bombed. Exercise helped only 1/10 patients while worsening or severely worsening 2/3rds of patients. The Lightning Process did improve the health of 20% of the patients trying it, but half reported they got worse and a quarter reported they got much worse. (The LP results in this survey were worse than in the UK survey of a couple of years ago). With the big Lightning Process adolescent study reportedly wrapped up several months ago it’ll be good to get some hard stats on its effectiveness.
While two-third of ME/CFS patients reported they had ‘less good’ or even poor quality of life, a third reported they had a good quality of life.
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.