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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

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.

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 a 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 muscoskeletal disorders (arthritis/back pain). It was the  muscoskeletal 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 symdrome, 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 f0und 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.








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