Yes to more humbleness and professional substance in the ME debate

In leading Norwegian newspaper VG (3.8.15) Lightening Process-instructor Live Landmark admits that she for several years refused to seek necessary medical assistance from doctors for her ME, based on advice and media initiatives from the «ME-society» and their advocates. From the patient organizations she claims to have received the «overwhelming” information that pacing is a good treatment for most patients with ME. Landmark expresses deep concern that patients in response to neglect and maltreatment seek together to make a difference. She points out the danger of polarization, where those who tries to voice other opinions are seen as opponents.  (English translation of the article available here)

Seeking Medical Assistance
But the many ME-patients we have met in online fora sincerely wishes to be helped by a good public doctor. The hunt for a good doctor actually is a recurring theme online. Pacing , as a patient organization should have recommended Landmark , is in line with public health advice and international research. Pacing can also be used in combination with cognitive therapy. Research shows that, unfortunately, cognitive therapy have little effect on the majority of patients with ME, but the patient organizations still recommend this approach for the patients who may benefit from it.

It is true that most ME patients regard their illness as a «physical illness», and there are indications that they are right – at least for a large percentage of the patients with a ME diagnosis.

The need of Humbleness and Professional Substance
The debate will grow larger in the near future – as more precise and new knowledge is being produced by the expertise regarding the disease and the methods of treatment. It is important that such information is conveyed accurately and correctly. It is also important to discuss ME from many different angles, including the side Landmark wishes to voice. However, a debate requires humility and professional substance. We need voices that see both the large picture and the diversity, not wanting to impose treatment on patients that make them worse.

«Unfortunate Polarization», Landmark writes
Yes, unfortunately! And landmark is among the leading contributors in this respect: In the way she uses the word «ME-community», it seems that she intends to stigmatize ME-patients so that they are perceived as some sort of a “religious sect” desperately clinging to the misconception of ME as a physical disease. Why establish this image? And who is in the group Landmark wants to mark as part of the “ME-community”? Patients, next of kin, health workers, politicians and researchers and others who express their opinions on ME in a way that she resents? Is the Norwegian Prime Minister a part of this sect? PM Erna Solberg recently claimed that the mistreatment ME-patients have experienced is a scandal and a dark chapter in the history of Norwegian public health care system.

“At the same time desperate patients seek together collectively in potentially harmful internet forums. They need help now.” [our translation], Landmark continues. This way she puts herself above the tens of thousands of people, many of whom with far more insight and professional understanding of ME than herself. Such a form of debate is not necessary, and we think this way of communication will backfire.

On our part we gladly accept debates about ME from different points of view. We welcome articles and debates with academic substance and at the same time humility and respect towards patients, their families and the professionals who work with the challenges of ME. Those who still live their daily lives inside the dark chapter of Norwegian health care deserve our respect.

Text by The ME Parents (former ME mum’s confessions)
Link to Norwegian original

– The blog ME-foreldrene i.e. The ME Parents
Prime Minister Erna Solberg on ME day 12. May 2015 (Norwegian)
International Consensus Primer
– IOM report Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

The Norwegian ME Association has written a reply to Landmark in VG: Complaining about treatment that Works? (Norwegian)

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