To suffocate debate
Published in VG 08.21.2015
In the chronicle "
the ME community can harm patients" I mentioned an Internet based patient community. The source is a
Norwegian study that has documented a ME-community with a common understanding of reality and a strong culture. The norm in the society is to present negative experiences, and there is little room for counter-voices. Research that does not match their understanding of reality that ME is primarily a "physical illness" are criticized.
I highlighted the challenge of such
groups: Members can look at those who have a different view as "enemies" and thus trigger an unfortunate polarization.
Jonathan CW Edwards, a director of the world's largest ME Forum, demonstrates this in VG by rejecting my chronicle while he criticizes me personally. Thus he shows that the Norwegian study's findings may also apply to international relations.
While debating ME it pleasant to know who’s saying what. It is relevant to know whether posts originating from a patient, a relative, a researcher or a treat in the field. Since Edwards is retired, I mean it's untidy that he draws the professor card. It is also important to highlight that his colleagues at Kings College, do not share his view.
One of the studies I mention was both criticised by Edwards and the ME Association. Neither of them connect my point:
the PACE Study shows no improvement at pacing, which is the prevailing recommendation from the ME Association, which is based on different user surveys.
The ME Association says that their members gets sicker of cognitive therapy and graded exercise. Research shows the opposite. The allegations show that the association's members experiences are not transferable to everyone diagnosed with ME.
The PACE study concluded that it is
possible to recover from ME. This corresponds with recent studies, but there are unfortunately no single cure for everyone. The ME Association says that we who becomes healthy with mental techniques are not representative for the patient group. This is an unfortunate signal, that cannot be backed up with research evidence.
Critics seem to perceive that the chronicle are my opinions, while it is primarily based on extensive research. The claim that cognitive therapy and customized training has the best proven effect is based on the
Knowledge Centre (In Norway) review of all international research in the field in 2011, and is supported in a recently updated Cochrane review. These are studies of studies, which is considered the highest level in research, but my approach is called pseudoscience by the retired professor.
Edwards encourage me to participate in the debate on the ME-forum and describes it as a serious debate arena. In a post on the forum, he asks me to "run away with my tail between legs" while the debate continues as follows: "She has terrorized us in Norway with similar articles in six years. It does not seem that there is some way to stop her. I wished she could, because every time she publishes a new article I become so upset and symptoms worsen. If anyone has an idea on how to stop this reporter, I am grateful for tips. "
In the chronicle I write that ME is a physical condition with physical plagues, and not a mental illness. Edwards argues, however, that I do not seem to be aware of this.
My point is that it may be harmful for patients to form rigid beliefs about ME. Edwards says that cognitive therapy has little support on the ME-forum, thus showing that they reject psychological mechanisms. This can prevent the use of treatment with proven efficacy, and thus recovery.
