PR agencies for researchers contribute to funds being allocated to selected researchers and research that the insurance industry can benefit from. Is the media critical enough towards this practise?
Recently, the British journalist Fiona Fox published the book «Beyond the Hype«. In one chapter of the book, ME patients are described as an aggressive mob that attempts to limit, undermine or manipulate research, pressure or intimidate researchers into or away from any given conclusion. The title of the chapter is the beginning of a poem written in 1946; «First they came for the communists …» with a clear reference to the Nazis.
Fox is the head of the Science Media Center, a press office for science. The research she writes about in the chapter is the controversial PACE-trial. SMC held a press conference when the results were published in 2011.
The PACE trial is the most expensive piece of research into ME/CFS ever conducted and has dominated clinical guidelines, in both governments’ funded health care and private medical insurance.
By the time the study was published, the treatments it assessed, cognitive behavioral therapy (CBT) and graded exercise therapy (GET), had already been used for years and the PACE trial was expected to confirm that they worked.
The researchers expected that the CBT and GET groups would do best and reported that this is what the trial’s results showed. But the claim has proved controversial. The authors had changed their protocol-specified main outcome and the recovery analyses halfway into the trial.
The insurance industry
The main investigators in the PACE-trial are psychiatrist Peter White, professor of psychotherapy Trudie Chalder and professor of psychotherapy Michael Sharpe. In addition, psychiatrist Simon Wessely contributed with his assessments to the report. All four have had longstanding financial and consulting ties with disability insurance companies, having advised them for years that CBT and GET could get claimants off benefits and back to work. The study participants were not informed of this.
Compensation and pension schemes are not granted for illness and injury when there are treatment options. The PACE-trial is therefore useful for insurance companies that can refer to the results of the study and reject claims for insurance payments from ME patients. Sharpe also recently gave a presentation to the insurance company Swiss Re on long-term ailments after Covid disease, in which he suggests that one of the causes of Long-Covid is «social factors». Read more here about: «ME, the insurance industry and psychiatry».
It is these four professionals who, with their outdated approach to ME/CFS, SMC presents as experts to the media in cases about ME/CFS.
SMC have also disseminated stories to the media about Wessely and Sharpe who claim that they will stop researching ME due to alleged harassment and threats from ME patients. I have written about these refuted claims, and similar claims that are made by Norwegian researchers here: (Norwegian text) «Ytringsfrihet i akademia fra en ME-pasient sitt perspektiv» and here: «Khrono sin sak om betent ME-forskning».
See also Prof. Malcolm Hooper, 2013: “The Role of the Science Media Centre and the Insurance Industry in ME/CFS: the facts behind the fiction” including evidence of the SMC’s campaign to discredit people with ME/CFS.
Allegations of «militant» ME patients are constantly refuted, e.g. in the article ”Are ME/CFS Patient Organizations «Militant»?” by prof. Charlotte Blease and prof. Keith J. Geraghty.
Fox further claims that the British health authorities changed the treatment advice for ME / CFS due to pressure from ME activists.
In 2021, National Institute for Care and Excellence, NICE, published new guidelines for ME / CFS. NICE has – like the US health authorities, stopped recommending CBT and GET as a cure for ME. The NICE-committee reviewed all the research in the field and found that the studies that are available – including the PACE-trial, do not have the necessary scientific qualities.
Both NICE and the CDC are clear that GET can be harmful for ME patients. In other words, we are in the middle of a paradigm shift in the ME field. Strong forces try to counteract this though, in order to maintain professional prestige and financial interests.
Do we have an organization similar to the SMC in Norway?
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 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. Read more here: Norwegian text: Recovery Norges inngrep med myndighetene) (Recovery Norway’s intervention with the authorities.)
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 from 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 9th, 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 9th, 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 11th, 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.».
November 11th 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 20th, 2021: «Anonymous mother» writes in Klassekampen: «A harmful fight, Lilledalen».
November 20th, 2021: Live Landmark writes in Forskersonen: «The British guideline is a result of activism, not research«.
November 29th, 2021: Georg Espolin Johnson, MD and former social security court judge who supports RN, writes in Aftenposten: «The debate on chronic fatigue syndrome is stuck«.
December 1st, 2021: Live Landmark’s opinion piece in Forskersonen is published in English: «The British guideline for CFS / ME is the result of activism, not research».
December 1st, 2021: Recovery Norway writes in Aftenposten: «Do not take away from ME patients the opportunity for treatment that works«.
December 7th, 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 17th, 2021: Recovery Norway, by Anne Mari Romsaas Fredriksen and Hilde Søndrol, who claims to have recovered from ME with the help of LP 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 2nd, 2022: Dagbladet Pluss publishes a large article in the paper edition about Hilde Søndrol: «I recovered from ME».
January 7th, 2022: Leader of RN Henrik Vogt writes in Dagsavisen: «We do not engage in covert marketing».
January 10th, 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 11th, 2022: The magazine Kvinner og Klær, KK, has a large article about Hilde Søndrol: “I recovered from ME”.
January 7th, 2022: Dagbladet writes about Hilde Søndrol: «I recovered from ME«
January 13th, 2022: Hilde Søndrol is on the front page of Dagbladet’s paper edition: “I recovered from ME”.
January 16th, 2022: Dagbladet sponsors an ad with the article about Søndrol on Facebook.
January 20th, 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 29th, 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 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 Garner didn’t have ME, but health anxiety. Read more here; (Norwegian text): «Kan man tenke seg frisk fra langvarig Covid?»
From 5th May 2020 to 26th January 2022, Garner has 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.
Are journalists critical enough?
Fiona Fox writes in her book that «SMC does not operate and fight for a research area or support a particular approach.». This has been refuted by psychologist David F. Marks. Marks has written “The rise and the fall of the Wessely-school” in which he documents that SMC’s «expert reactions» to ME/CFS-research has a consistent bias towards the Wessely school’s point of view.».
Psychologist James C. Coyne has written about when journalists around the world quoted SMC’s «experts» who claimed that 1 in 5 Covid-19 patients would get a psychiatric illness within 90 days: «No tsunami of mental illness accompanies Covid-19». When Coyne did his own evaluation of the study, he found that the assertion was incorrect: “Debunking 1 in 5 Covid-19 patients develop mental illness”.
Dagbladet did the same thing recently when they wrote about a Norwegian study on CBT and GET, where it is claimed that «important findings» where made. When I looked more closely at the study, I found both major method weaknesses and financial conflicts of interest that had not been stated: «Norwegian ME study; Not such important findings after all?». Norwegian text: «Norsk ME-studie; Ikke så viktige funn likevel?».
In the course of nearly 2 years, NOK 16 million has been allocated to research in which RN will contribute with «user participation». Fiona Fox writes – which is true – that the media’s coverage affects which researchers receive funding. Therefore, a PR agency for researchers and contact with the media is useful. Therefore, journalists must be critical and not blindly trust the «expert opinions» that PR agencies and the other «experts» offer. It affects how patients and other vulnerable groups are treated.
Nina E. Steinkopf
Formerly HSE- and Quality Director
Now; ME-patient and writer
Read more reviews of Fiona Fox’s book:
Prof. David Tuller: Science Media Centre Chief Fiona Fox Compares ME/CFS Patient Advocates to Nazis
Adam Broken Battery on Twitter: https://twitter.com/ABrokenBattery/status/1534218102291976193
Last updated: 9th June 2022.