It may be too late to convince those who now believe that long-term effects of Covid-19 are psychologically conditioned as to why they should take a vaccine from which they risk having blood-clots.

The Norwegian newspaper Morgenbladet’s article (1) on March 26, 2021, reads that Norwegian researchers differ in their view of long-term ailments after Covid-19. In my opinion, it is important to also discuss what happens when doctors downplay serious physiological consequences of Covid, that it can form grounds for pandemic- and vaccine skepticism. In addition, it’s about who finally gets to define the truth about the long-Covid patients; about money, power and prestige.

«ME-research»

Prof. Vegard B. B. Wyller has had a huge influence on official decision-making in the ME-field in Norway for 15 years. He is referred to as «one of the country’s leading experts on chronic fatigue syndrome or ME», which is not correct (2). Wyller’s research includes patients with more than three months of unexplained fatigue, without any other symptoms. This is not according to The Norwegian Directorate of Health’s definition of ME. In ME, in addition to fatigue, there must be a number of symptoms, and psychological disorders as the cause of the symptoms must be ruled out. It is also not true as stated that the controversy in the ME debate is about psychological methods and graded exercise. These are theories that the world’s largest health organizations such as CDC, NIH, IOM and NICE have abandoned. Wyller’s hypothesis that ME is “a sustained arousal” or «a false alarm in the autonomic nervous system» is, after 15 years of research, not confirmed. In one of the largest studies (3) on the use of the stress-relieving drug Clonidine, Wyller himself did not find any support for his hypothesis.

Wyller is now leading a planned study (4) in which 500 adolescents will be examined for long-term effects of Covid-19. It is uncertain whether ethical approval or funding has been granted. The project group consists of researchers with a psychosocial approach to ME, i.a. authors of the scandalous PACE (5) and SMILE (6) -studies. The hypothesis is that children who have undergone Covid-19 have a higher incidence of post-infectious chronic fatigue / chronic fatigue syndrome; terms used about ME. Furthermore, the hypothesis is that the risk factors associated with falling ill with ME are a mixture of genetic vulnerability and psychosocial factors. After 40 years of research, there is no scientific evidence that psychosocial factors are risk factors for ME. Wyller himself has investigated this in a number of studies without it being confirmed: a study from 2009, (7) the CEBA-study (8) in 2019 and the music therapy-study (9) from 2020. Wyller also recommends that adolescents with ME take courses in Lightning Process; NRK: 13-year-old attempted suicide after ME-course (10).

Recovered from Long Covid?

In Morgenbladet’s follow-up article on March 29, 2021 (11), prof. Paul Garner says he was infected with Covid-19, and that several months later he struggled with fear of being ill, and obsessive-compulsive disorder / OCD; he was obsessed with monitoring himself and his symptoms. It was during a phone call with a Norwegian alternative therapist that «the light was turned on». She told him he could get well if he only believed he would, and wanted to. Garner refers to medical doctor Henrik Vogt’s «corona-exceptionalism», and they both criticize the biomedical model.

Henrik Vogt and Andreas Pahle’s posts in Aftenposten: A fear-driven pandemic of lasting health problems (12) and How to make a recipe for disability (13) is about not creating pandemic anxiety, and not inflicting fears on people that they cannot recover. It leaves the impression that people are ill because they think they are ill. With this, there is a danger of branding an entire group of patients as hypochondriacs, with the risk that long-term physiological disorders are not taken seriously, as has happened with ME patients for several decades. It is important that medical doctors are able to distinguish between hypochondria, OCD, and individuals imagining themselves having ME or Long Covid.

Vogt quickly went out in the media when Norway shut down in 2020: Do not scare people with airborne infections! (14). During Vogt’s lecture at the National Institute of Public Health’s Infection Control conference in October 2020, «A fear-driven pandemic of lasting health problems» (15), Long Covid was compared to an incident where someone imagined that they had become ill from a white powder that was sent anonymously in the mail. It turned out to be flour; “Today we are not facing flour, but a virus; but the same mechanisms apply.» The lecture ends with a statement that those who are critical of this, is hiding an intolerant premise and consider psychological illness to be inferior (see 37:27 min. in the broadcast).

On his Facebook page, Vogt writes about children with Covid disease, compares it with ME and claims that the mothers’ focus can contribute to persistent illness.

This creates the impression that long-term Covid is actually fear of illness and psychosomatic. In the next round, the solution is presented.

Lightning Process

Recovery Norway, of which Vogt is head, was established in connection with the Norwegian Consumer Agency tightening the regulations for marketing alternative treatment. RN has around 180 members and mainly conveys personal stories of recovery using the alternative method Lightning Process (LP). The organization was started by i.a. a number of LP instructors and their family members who have a financial interest in the organization’s lobbying and marketing. LP is based on pseudoscience and consists in short of brainwashing, self-praise and power posing.

In order for the method to have an effect, one must declare oneself to be recovered. Those who do not recover are considered to lack motivation, and «not equipped to take responsibility for their own health» (16). It’s not unlike what Garner has done; he declared himself well and now indirectly accuses those who are still ill; «You can’t turn on the light without wanting to change something» – as if lack of recovery is due to lack of will to recover.

It was Henrik Vogt who approached Garner on Twitter in September 2020 and informed him about RN and LP. Garner was helped with his obsession of checking his symptoms via a phone call with an LP instructor. The same LP instructor is a doctoral candidate in a planned LP study of which both Wyller and Vogt are part. LP-instructor Live Landmark wrote in VG in 2015: The ME-mothers need help (17).

In the planned study, 100 ME patients will be treated with LP. Participants are recruited by The Norwegian Labour and Welfare Administration (NAV). In the application for ethical approval, the project failed to provide information on known side effects as a result of the treatment. The hypothesis is that ME is “a sustained arousal”, that psychosocial factors play a role, and that the illness can be socially transmitted. Criticism of the study design, e.g. regarding the LP instructor’s financial interest and that there is no real control group, is claimed to be an expression of an «emotional uproar» (18).

Update June 4^th 2021: Controversial ME study: Ethical approval withdrawn!

Read more about the study-design here: Study on ME-patients; Cynical, unethical and indefensible (19) and in Adresseavisen (20).

The rhetoric against, and the exclusion of critical voices affects the climate of debate. Undocumented claims about disease affect people’s attitudes toward Covid-19 and vaccines. Downplaying the serious physiological consequences of Covid can lay grounds for pandemic skeptics. It can contribute to skepticism about whether long-term effects are a particularly dangerous physiological disease. It may be too late to convince those who now believe that long-term effects are psychologically conditioned as to why they should take a vaccine from which they may risk having a blood clot.

Physicians and researchers have an ethical responsibility in the way they disseminate medical information. When the impression is given that Long Covid is in fact fear of illness, those who in turn also claim to have the solution to the problem have a duty to inform about intellectual conflicts of interest. There will be power and prestige, and also big money involved when the Long Covid patients are enrolled in research projects, when treatment methods are recommended, and when NAV can finally demand courses in LP as a condition for financial support.

Written by Nina E. Steinkopf

Former HSEQ Former HSEQ Chief Executive

Now; ME-patient and writer at www.melivet.com

References:

1. Morgenbladet 26. March 2021; Hvor redde skal vi være for langcovid? (How afraid should we be of Long Covid?)
2. Steinkopf, N.E., 3. June 2020: “ME-ekspert» is not researching ME
3. Sulheim D, Fagermoen E, Winger A, Andersen AM, Godang K, Müller F, Rowe PC, Saul JP, Skovlund E, Øie MG, Wyller VB. Disease mechanisms and clonidine treatment in adolescent chronic fatigue syndrome: a combined cross-sectional and randomized clinical trial. JAMA Pediatr. 2014 Apr;168(4):351-60. doi: 10.1001/jamapediatrics.2013.4647
4. Study protocol NCT 04686734, 4 th of January, 2021; Long-Term Effects of COVID-19 in Adolescents (LoTECA)
5. McCrone, P., Sharpe, M., Chalder, T., Knapp, M., Johnson A. L., Goldsmith, K. A., White, P. D., (2012), Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis,  https://doi.org/10.1371/journal.pone.0040808
6. Crawley EM, Gaunt DM, Garfield K, et al Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial, Archives of Disease in Childhood 2018;103:155-164. https://adc.bmj.com/content/103/2/155
7. Gjone, H. and Wyller, V.B. (2009), Chronic fatigue in adolescence—autonomic dysregulation and mental health: an exploratory study. Acta Pædiatrica, 98: 1313-1318. https://doi.org/10.1111/j.1651-2227.2009.01323.x
8. Kristiansen MS, Stabursvik J, O’Leary EC, Pedersen M, Asprusten TT, Leegaard T, Osnes LT, Tjade T, Skovlund E, Godang K, Wyller VBB. Clinical symptoms and markers of disease mechanisms in adolescent chronic fatigue following Epstein-Barr virus infection: An exploratory cross-sectional study. Brain Behav Immun. 2019 Aug;80:551-563. doi: 10.1016/j.bbi.2019.04.040. Epub 2019 Apr 27. PMID: 31039432.
9. Malik S, Asprusten TT, Pedersen M, et al. Retracted: Cognitive–behavioural therapy combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, BMJ Paediatrics Open 2020;4:e000620. http://dx.doi.org/10.1136/bmjpo-2019-000620
10. NRK, 2011: 13-åring forsøkte selvmord etter ME-kurs (13-year old attempted suicide)
11. Morgenbladet 29. March 2021: Jeg var besatt av å overvåke meg selv (I was obsessed with monitoring myself)
12. Vogt, H. og Pahle, A., 30. August 2020, Aftenposten: En fryktdrevet pandemi av varige helseproblemer (A fear-driven pandemic of lasting health problems)
13. Vogt, H. og Pahle, A., 17. September 2020, Aftenposten: Slik lager man en oppskrift på uførhet (How to make a recipe for disability)
14. The Norwegian Board of Health Supervision / Helsetilsynet, 4. March 2021: Helsepersonell bør gi saklig informasjon (Healthcare professionals should provide factual information)
15. Vogt, H., 18. March 2020, Aftenposten: Ikke skrem folk med luftsmitte! (Don’t scare people with airborne infections!)
16. National Institute of Public Health’s Infection Control conference / Folkehelseinstituttets Smitteverndager, October 2020, Vogt, H., «En fryktdrevet pandemi av varige helseproblemer» (A fear-driven pandemic of lasting health problems)
17. Landmark, L., Forskning, 27. September 2018: Dette sier forskningen om Lightning Process og ME (This is what the research on Lightning Process and ME says)
18. Landmark, L., 2015, VG: ME-mødrene trenger hjelp. (The ME-mothers need help)
19. ScienceNorway; 12. December 2020, Study on Lightning Process-course for CFS/ME patients raises controversy
20. Steinkopf, N. E., 22. August 2020: Study on ME-patients; Cynical, unethical and indefensible
21. Saugstad, O.D., and Steinkopf, N.E., Adresseavisen, 4. December 2020: The ME controversy: Study on Lightning Process at Norwegian University of Science and Technology (NTNU).