By David Tuller, DrPH
In Norway this week, three major patient advocacy organizations—the Norwegian ME Association, the Norwegian Covid Association, and ME Parents—are planning a demonstration outside the country’s parliament in Oslo, the capital. Their main demand: a separate official guideline for ME/CFS.
The event on Wednesday, October 28th, from 3-4 pm, follows an October 20th letter from the three organizations to the Norwegian Directorate of Health and the Ministry of Health and Care Services—the latest developments in the saga over guidelines designated as being for “long-term fatigue—including ME/CFS.” A final version of the guidelines is expected to be published within the next couple of months.
According to the three organizations, the proposed guidelines err in lumping ME/CFS together with conditions that do not feature the core trait of post-exertional malaise (PEM). As they state in a press release about their October 20th letter:
“In the letter, we express our concern that ME and other post-infectious diseases with PEM are treated within the same guidelines as general long-term fatigue, despite significant differences in disease presentation and needs…We request that the work on one common guideline be stopped, that a separate evidence-based guideline be prepared for ME and post-infectious diseases with PEM, and that a separate disease-specific expertise environment be established.”
This week’s protest, which is being live-streamed, is designed to highlight those demands.
As I reported last March in a post on this issue, the new guidelines are intended to replace a 2015 document called “National Guide for Patients with CFS/ME: Assessment, Diagnostics, Treatment, Rehabilitation, Nursing and Care.” An advisory group of 21 stakeholders with diverse views and backgrounds provided input to the Norwegian Directorate of Health, which was charged with overseeing the guideline development.
Several of the advisory group members, on both the biopsychosocial and biomedical sides, have dissented from the draft and expressed their concerns publicly. Trude Schei, a member of the guidelines committee as assistant secretary general of the Norwegian ME Association, explained her reasons for dissenting in a letter to the Norwegian Directorate of Health. As she wrote:
“I believe that the draft as it currently stands will neither enhance competence nor will it provide ME sufferers with better follow-up, treatment or access to appropriate benefits…The formulations in the draft are so vague that everyone will be able to interpret them to support their view…I find that this is largely due to the fact that the draft does not take into account broad user experiences as documented through large, comprehensive surveys.”
The agency, she wrote, should ensure, among other goals, that the guideline “provides a good description of ME/CFS and of PEM, and the consequences of PEM,” “provides information about the entire symptom picture of ME/CSF, not just fatigue,” “informs about the risk of harm associated with treatment,” “provides realistic expectations of effect (e.g. minimal effect sizes, lack of effect at follow-up, lack of effect on work or income ability),” “provides realistic information about prognosis for ME/CFS,” and “clearly distinguishes between ME/CFS and fatigue without PEM in its treatment advice.”
The dissenting statements from other patient organizations expressed similar concerns. Specifically, ME Parents cited the following, among other complaints: “lack of dichotomy into two clearly distinct clinical courses,” “lack of compliance with NICE,” “unclear definition and operationalization of post-exertional malaise (PEM),” “lack of specific guidelines for assessment and treatment,” “lack of mention of seriously ill people and children,” and “lack of visibility of professional disagreement in the field.”
In its statement, the Norwegian Covid Association declared the following: “The Norwegian Covid Association cannot support the consultation draft in its current form. The draft lacks professional precision, is not in line with international standards and does not adequately safeguard patient safety for people with post-viral illness, including ME/CFS and long covid. It does not take into account the WHO [World Health Organization] red flags of orthostatic intolerance and/or PEM before choosing treatment and/or rehabilitation for the patient.”
For the protest on Wednesday, the organizers said they would have 50 onsite camp beds, which “are intended to highlight those who are too ill to participate, but also provide an opportunity to lie down for those who need it.” They encouraged attendees “to bring a duvet/blanket/pillow, an empty school bag or a teddy bear to put on one of the 50 camp beds…Some have suggested drawing or writing on the pillows, or attaching a card with a picture of a sick person and a short text.”
