Representative proposal to improve the social security rights of ME patients
- The Storting asks the Government to update the national guide for assessment, diagnostics, treatment, rehabilitation, nursing and care at CFS / ME as soon as possible and until a new guide is available, to ensure that no ME patients are required to receive treatment or measures that have no documented effect, or which can be harmful.
- The Storting asks the government to ensure that Nav can not demand that persons who are assessed for disability benefits must undergo treatments or assessments that they do not have a right to or are refused in the public health service, or that are not otherwise covered by public agreements.
The Storting being the Norwegian Parliament
Read more here
Recovery Norway as a PR agency
Recently, it became known that the organization Recovery Norway (RN), which was launched as a «patient network», was in fact founded by i.a. Lightning Process instructor Live Landmark in conjunction with to the Norwegian Consumer Agency’s restrictions of the regulations for marketing of alternative treatments. Read more here: Recovery Norway is a Lightning Process organization.
Lightning Process (LP) is an alternative treatment method. RN conducts extensive lobbying with the aim of getting the method approved within the public health sector as treatment for ME/CFS.
The new NICE guidelines for ME/CFS specifically warn against offering LP to ME patients. Within 11 weeks of NICE’s new guidelines being published, RN and other LP supporters had 18 (eighteen) opinion pieces and other appearances in the media. They consist mostly of anecdotes about recovery of ME with the help of LP, that they feel harassed and threatened by ME patients as well as criticism of NICE’s guidelines. It is claimed that NICE changed the guidelines due to pressure from ME activists.
Recovery Norway’s media campaign
November 9, 2021: Opinion piece in Aftenposten by psychiatrist Alv A. Dahl: «Strange allegations about ME patients». Dahl was one of the researchers in the study where young cancer survivors were treated with the Lightning Process. The treatment was carried out free of charge by LP instructor and leader of the Norwegian Association of LP Instructors Kristin Blaker. The project did not have ethical approval.
November 9, 2021: Chronicle in Aftenposten by 24 professionals, including prof. Vegard B. B. Wyller: «The debate about ME is not over!». Most of these have been public about their support of Recovery Norway.
November 11, 2021: LP instructor Live Landmark, who was among those who founded RN, writes in Aftenposten and criticizes that NICE changed the guidelines. «The Norwegian Directorate of Health must withstand the pressure from ME patients.».
11 November 2021: Opinion piece by an «Anonymous mother» in Klassekampen: «When did hopelessness become a gift?». This is the same anonymous mother who has been in the media several times and told the story about when she and her husband took the LP course when their daughter got ME. Their story is part of RN’s portfolio.
November 20, 2021: «Anonymous mother» writes in Klassekampen: «A harmful fight, Lilledalen».
November 20, 2021: Live Landmark writes in Forskersonen: «The British guideline is a result of activism, not research«.
November 29, 2021: Georg Espolin Johnson, a medical doctor and former social security court judge who supports RN, writes in Aftenposten: «The debate on chronic fatigue syndrome is stuck«.
December 1, 2021: Live Landmark’s debate post in Forskersonen is published in English: «The British guideline for CFS / ME is the result of activism, not research».
December 1, 2021: Recovery Norway writes in Aftenposten: «Do not take away from ME patients the opportunity for treatment that works«.
December 7, 2021: «Anonymous mother» writes in Klassekampen: «Last answer to Lilledalen» and claims that «It is also known that NICE has excluded all studies on treatments and developed the guidelines based on personal opinions.».
December 17, 2021: Recovery Norway, by Anne Mari Romsaas Fredriksen and Hilde Søndrol, who claims to have recovered from ME with the help of LP and writes in Dagsavisen that they are: «The «invisible» in the ME debate». Fredriksen actually did not have ME and Søndrol, who is a board member of RN, is according to herself still not working.
January 2, 2022: Dagbladet Pluss publishes a large article in the paper edition about Hilde Søndrol: «I recovered from ME».
January 7, 2022: Leader of RN Henrik Vogt writes in Dagsavisen: «We do not engage in covert marketing».
January 10, 2022: NRK.no: Front page article about Lightning Process: «Parents feared ME-patient Emilie would die; now she is going to the Olympics». Emilie Kalkenberg’s story is in RN’s portfolio.
January 11, 2022: The magazine Kvinner og Klær, KK, has a large article about Hilde Søndrol: “I recovered from ME”.
January 7, 2022: Dagbladet writes about Hilde Søndrol: «I recovered from ME«
January 13, 2022: Hilde Søndrol is on the front page of Dagbladet’s paper edition: “I recovered from ME”.
January 16, 2022: Dagbladet sponsors an ad with the article about Søndrol on Facebook.
January 20, 2022: Bård Stranheim writes in Forskersonen: «I am frustrated by the lack of accountability in the debate about ME and Lightning Process«. Stranheim does not state that he represents RN.
January 29, 2022: Big case about Bård Stranheim on the front page of Telemarksavisa. Stranheim claims he recovered from ME with the help of LP and that ME activists make it difficult to talk about it. Stranheim does not state that he represents RN. Stranheim has never had ME, he has suffered from burn-out syndrome.
Lightning Process as a cure for LongCovid?
Recovery Norway has also incorporated Long Covid into its portfolio. In September 2020, the head of RN, MD Henrik Vogt, contacted a British professor, Paul Garner. Garner has claimed that his long-standing ailments after Covid-19 were developing into ME. Vogt arranged contact with Live Landmark, and after a phone call with her, Garner declared himself recovered. Later it turned out that Garner didn’t have ME, but health anxiety.
From 5th May 2020 to 26th January 2022, Garner appeared in the media more than 100 times telling his story, including the Norwegian Morgenbladet and Dagbladet. See the overview here: «Paul Garner discusses his experience of having Covid-19». Garner also attended a meeting with the Norwegian Ministry of Health and Care Services together with RN, to discuss treatment methods for Long Covid.
Nina E. Steinkopf
Formerly HSE- and Quality Director – Now: ME-patient and writer
This article is the second part of a longer one.
Full text here
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