By David Tuller, DrPH
I posted a piece yesterday on Norway’s draft guideline for “long-term fatigue—including ME/CFS.” But my post was already outdated!
The draft guideline was written by a team from the Norwegian Directorate of Health and is open for public comment until May 4th. A working group of 25 individuals from a range of backgrounds was appointed to serve in an advisory capacity.
As I noted yesterday, four members of the advisory group—among those representing the interests of the biopsychosocial ideological brigades—formally dissented from the draft. So did Trude Schei, the “user representative” from Norway’s ME Association, although her objections ran in the opposite direction. As it turns out, the user representatives from two other national organizations—ME Parents and the Norwegian Covid Association–have also dissented. (I have posted some excerpts from these statements below.)
The user representatives from a fourth patient group, Recovery Norway (RN), have not dissented. RN was founded by and is associated with advocates of the Lightning Process, a “mind-body” program that purports to cure people with ME/CFS and Long COVID. In Norway, members of the medical establishment have joined forces with Lightning Process proponents to push back against those seeking biomedical answers to ME/CFS and Long COVID.
Perhaps this bias explains why RN had two user representatives in the advisory group, not just one as for the other three organizations representing patients. Nina Steinkopf, who blogs about goings-on in Norway at MELife, posted about the issue this week:
“Recovery Norway is a Lightning Process organization that was founded by, among others, Lightning Process instructor Live Landmark. The organization consists largely of satisfied Lightning Process customers. The purpose of the organization is to have Lightning Process recognized as a treatment in the public health system. The results of Lightning Process against ME are marginal – even though they are presented as very good.
“Recovery Norway’s 280 members have two representatives on the working group [advising the Health Directorate]. The ME parents, the ME Association and the Covid Association – which have more than 8,100 members together – have only one representative each.”
During a February 27th webinar about the draft guideline, the Health Directorate was asked about the discrepancy. Per Steinkopf’s account:
“The Directorate of Health explained why there are two representatives from Recovery Norway and only one each from the three patient associations…
“This is ‘because we should never let a representative stand alone in such work. You have to have someone to lean on. And the other representatives have a slightly more similar view, so it became important that they also have a kind of security in that work.’
“It is a razor-thin argument. Recovery Norway’s view; that ME is a myth – has the support of the majority of the other members of the working group. Those who have a medical approach to the disease are in the minority.”
During the same meeting, according to Steinkopf, the ME Association’s Trude Schei asked the Health Directorate why more weight was being given to RN’s anecdotal accounts than surveys, with thousands of respondents. “The Directorate of Health did not have a good answer to that,” reported Steinkopf.
The dissenting statements from the three other patient organizations all 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.”
The parents group further noted:
“It was…stated that the work would be based on NICE. The draft does not show such a correspondence. Studies that NICE considers to be of low or very low quality are considered here to be of medium quality, without the deviation being explained…A separate guideline for ME/CFS based on strict criteria is necessary. A clear dichotomy within the current guideline is a minimum.”
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.”
In Schei’s letter to the Health Directorate, she indicated that the agency 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.”