Network asks Denmark's patient...

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Network asks Denmark's patient ombudsman to investigate Karina Hansen case

The National ME/FM Action Network is following the case of Karina Hansen of Denmark with interest and concern. According to reports:- she has been very sick for several years and has a diagnosis of Myalgic Encephalomyelitis,- she was forcibly taken from the family home and committed to a psychiatric hospital, and- she is undergoing a treatment program that includes forced exercise.We contacted the Danish Embassy in Ottawa to express our concern. The embassy said that the proper authority in such cases is the patient ombudsman.

 

SUBJECT: Fwd: RE: Karina Hansen

DATE: 2013-06-23 19:43

FROM: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

TO: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

The National ME/FM Action Network is a registered charity that has been serving Canadians with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome and/or Fibromyalgia for 20 years. Among other things, we spearheaded the development of the Canadian diagnostic and treatment protocols for ME/CFS which are now used internationally.

The case of Ms Karina Hansen has come to our attention. We understand

-that she has been very sick for several years and has a diagnosis of Myalgic Encephalomyelitis,

-that she was forcibly taken from the family home and committed to a psychiatric hospital, and

-that she is undergoing a treatment program that includes forced exercise.

There have been situations like this in the past where the medical profession has underestimated the seriousness of ME/CFS, assumed it to be psychiatric, and inflicted inappropriate treatments on patients. There is much more information available about ME/CFS than there used to be, and there is no reason for this to happen any more.

The ME/FM community in Canada is concerned about Ms Hansen's health and well-being. Our organization contacted the Danish embassy in Ottawa, Canada to ask the appropriate forum to express our concerns. The embassy referred us to your organization.

We ask that you investigate this situation in light of the current understanding of ME/CFS.

ME/CFS is a real physical illness. It is not a psychiatric illness. Please refer to the Guide for Psychiatrists listed below that distinguishes ME/CFS from psychiatric conditions like depression and anxiety.

Studies of ME/CFS suggest a dysfunction in the aerobic energy production system. With that in mind, it is important to manage exercise and activity wisely and not to exceed the body's capacity for exercise. It is perhaps easiest to understand this concept through an analogy.

Imagine a city with enough power plants to supply the electricity needed for the homes, businesses and factories therein. Then imagine that some of the power plants fail and the city is left with much less power than it was using previously. The city can still operate, but at a reduced level. Citizens have to prioritize their activities and live within the limits that the energy supply imposes.

Now imagine that someone advises pushing the limits of the power system, arguing that the malfunctioning generators will come back to life or that the working generators will learn to produce more. Would it be a surprise if the working generators burned out, leaving the city with even worse off than before?

Key strategies for dealing with ME/CFS include respecting one's "energy envelope" through pacing activities, and not exceeding one's energy envelope so as to trigger a post exertional relapse. Exercise and activity have to be managed very carefully. One wants to use the existing energy supply to maximum benefit, but pushing past the maximum can have long term negative consequences. These basic principles are part of the Canadian diagnostic and treatment protocols and are part of the "Primer" published last year by the International Association for CFS/ME.

From the descriptions we have seen, Ms Hansen has been struck with a severe case of ME/CFS. If that is the case, pretending that it isn't severe, pretending that it is psychiatric, and pretending that forced exercise will help is naive or even dangerous.

The National ME/FM Action Network of Canada asks that your organization investigate Ms Hansen's case on an urgent basis. The care that Ms Hansen is receiving could be very harmful to her health.

Margaret Parlor
President
National ME/FM Action Network

The Overview of the Canadian Consensus Document for ME/CFS can be found here:

http://mefmaction.com/images/stories/Overviews/ME-Overview.pdf

The Treatment Guidelines for Psychiatrists can be found here:

http://eleanorsteinmd.ca/wp-content/uploads/downloads/2013/02/Guidelines-for-Psychiatrists-English.pdf

The International Association Primer can be found here:

http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf