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Norwegian ‘Woulds’ (and ‘Wouldn’ts’): The ME/CFS Survey

  [ 5 votes ]   [ 3 Comments ]
By Cort Johnson • www.ProHealth.com • July 8, 2014


Norwegian ‘Woulds’ (and ‘Wouldn’ts’): The ME/CFS Survey
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.

Survey

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.

Treatment

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.
 


Please Discuss This Article:   Post a Comment 

Necessary to factor in that ME/CFS Can Improve Doing Nothing But Rest
Posted by: siebertesther
Jul 12, 2014
It is important to note that while lots of people improved over their first several years doing all kinds of things, some of us improved by doing nothing but going to bed and restings full time.

I got sick in 1986 prior to antivirals, had a documented case of Epstein-Barr virus that nothing could be done for at the time and was bedridden for several years before I got a minimal improvement allowing me to sit in a recliner and occasionally go out though that led to a crash. I remain ill after 28 years.

In those days, around 1990, once I became able to read up on it, people were crediting their improvements to all kinds of things. But it would be helpful to know how many people were able to improve just on rest. This would give us a baseline to judge treatments against. I was also supported by a doctor who said I had Chronic EBV around the time the name CFS was given to our illness. So I also had a bit of support at the beginning which was no doubt helpful as well for the first 3 years or so after which I moved.
Reply Reply

 
Many if not MOST
Posted by: IanH
Jul 14, 2014
I am sure your experience of improvement by resting is true of most people with ME and FM. The corollary is true, overdo it and you will suffer worsened symptoms.

A similar pattern is seen in MCS where you are not too bad if you stay away from people and environments that are "toxic" to you. A visit from a friend or associate wearing heavy deodorant or residues from strong detergents can worsen symptoms for a week or more.

 


Rest is the Best
Posted by: TeresaTK
Aug 7, 2014
I have found, after 30yrs, that to listen to my body is the best policy. When I can't stay awake and my body feels heavy with pain I simply sleep until my body wakes up and feels like being up. I am weak and fatigued but the pain is lessened. If I pace myself carefully, knowing when I need to rest or retreat, my body does much better, but it's a fine line of balance that is hard to keep at all times.
Reply Reply
 
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