Norway: Articles from TV2 about ME. Interviews with researchers as Fluge, Rekeland, Sommerfelt, Kielland and an interesting patient case

Could there be a higher proportion of people with a particular sub-type of ME in Norway I wonder? It would be interesting to do a genetics comparison.

 

New article from TV2. Politician Tone Wilhelmsen Trøen is chair of the Standing Committee on Health and Care Services in the Norwegian Parliament and is asking how the Minister of Health is going to follow up the research results from TjenestenogMEg which has shown that ME patients are failed by the health care system.

The Minister of Health says that on short term there will be no changes in the national ME guideline. The Prime Minister says they need to have ambition of moving forward, but won't promise anything concrete or any more research funding.

https://www.tv2.no/nyheter/innenriks/hoyre-krever-at-rystende-forskningsfunn-folges-opp/15199332/

google translation:
https://www-tv2-no.translate.goog/n..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp

 

Noticed this statement:
"Association to specific HLA genes"
9.48 minutes from start

Anyone know what this refers to?

 

I think you meant to post the question on the thread with the videos from the latest RME conference, and refer to Fluge's talk? I haven't watch it all yet. This article might be of interest:
https://www.nature.com/articles/s41598-020-62157-x

ETA: Abstract:

The etiology and pathogenesis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are unknown, and autoimmunity is one of many proposed underlying mechanisms.

Human Leukocyte Antigen (HLA) associations are hallmarks of autoimmune disease, and have not been thoroughly investigated in a large ME/CFS patient cohort.

We performed high resolution HLA -A, -B, -C, -DRB1, -DQB1 and -DPB1 genotyping by next generation sequencing in 426 adult, Norwegian ME/CFS patients, diagnosed according to the Canadian Consensus Criteria.

HLA associations were assessed by comparing to 4511 healthy and ethnically matched controls. Clinical information was collected through questionnaires completed by patients or relatives.

We discovered two independent HLA associations, tagged by the alleles HLA-C*07:04 (OR 2.1 [95% CI 1.4–3.1]) and HLA-DQB1*03:03 (OR 1.5 [95% CI 1.1–2.0]). These alleles were carried by 7.7% and 12.7% of ME/CFS patients, respectively.

The proportion of individuals carrying one or both of these alleles was 19.2% in the patient group and 12.2% in the control group (OR 1.7 [95% CI 1.3–2.2], pnc = 0.00003).

ME/CFS is a complex disease, potentially with a substantial heterogeneity. We report novel HLA associations pointing toward the involvement of the immune system in ME/CFS pathogenesis.

 

Noticed there's a reference to "trauma" at 18.55 minutes (from start) anyone know what this refers to?

 

Paal Schaatun, the journalist behind this recent series about ME for TV2, receives a backlash from the newspaper Dagbladet by journalists Jorun Gaarder and Silje Førsund.

In 2018 TV2 showed a documentary Schaatun had made about ME and the research into ME at Haukeland university hospital. A version with English subtitles were also made (Thread here).

In connection with this documentary and the momentum it brought to ME, Schaatun had a fundraiser for the Norwegian ME Association who annually gives a sum to research into ME. The money from the fundraiser were given to the Haukeland researchers.

Dagbladet's headline is: TV2 - journalist: Held fund-raising hidden

They are accusing him of writing articles about researchers he's participated in financing and that therefore he is both a journalist and an activist. TV2 has now added the information about the journalist's fundraiser from 2018 to the article about the woman who recovered from ME when she received treatment for cancer.

I've only seen screenshots of the Dagbladet-article, and think it's behind paywall. I also don't want to generate traffic to it, so therefore no link.

 

They are making it really uncomfortable to write about ME. In fact, Professor Reme did warn journalists from covering this field in the Morgenbladet-article about her needing security and police on standby during a seminar.

When they are so relentless on the scene, I do wonder what's going on behind.

 

It is a contentious field because its the cutting edge, money and lives are at stake and the public deserve to know the truth about who takes which as their priority.

This is why as an ME patient I believe the ME lobby have to hold ourselves to the highest standards.

We are struggling to see the moral highground prevail so we have to be squeaky clean because those are the standards by which we criticise those who fall short of them. Full disclosure and transparency are essential.

I am sure the fundraising was well intentioned but it does create a conflict of interests regarding journalistic detachment which has to be declared. Its one of the reasons @dave30th Dr David Tuller has to be clear about his funding strategy, which he rightly is. I dont think there is anything wrong with crowdfunding journalism or fundraising based on publicity, but we do have to be transparent about it.

I think corrections or advisories can be warranted. Fair play, lets get it all out in the open and make sure the public know what people related to the field are doing and how they get their money.

 

Since it happened, I wouldn't refer to it as an accusation, as if it's an unproven charge. If he held a fund-raiser for research and advocacy, this should have been disclosed. I can't fault those who pointed it out. The journalist and news organization left themselves wide open to this sort of criticism by not making the disclosure themselves.

 

I agree with the correction with this as additional information. But want to emphasise that Schaatun never fundraised for the researchers or any specific research project, but for the Norwegian ME Association who then chose to allocate money to Haukeland. I worry some readers might misunderstand this.

 

I don't think this distinction is really significant in terms of the ethical/disclosure issues involved. It's one thing for the ME Association to hold a fund-raiser on its own behalf in connection with a news program. It's another thing if he was involved in the fund-raising and personally advocating for the issue. It doesn't really matter much in my mind who the beneficiary was.

 

Flottorp from the Norwegian Institute for Public Health is interviewed in the Dagbladet-article. She is also quoted today in a Morgenbladet-interview with Kielland, who researches ME patients' meeting with the Norwegian health system, where Flottorp is accusing the research project of being "activistic", so there's also an agenda here. Too brain fogged now to write summaries, but can share more this afternoon/evening after a screen break.

 

Here's more summary of the Dagbladet article. Beware my translation may be imprecise:

Title: TV2 journalist: Held fundraising hidden

Ingress: The TV2-journalist did a feature about research he had participated in financing.
- He obviously played a double part here - both as activist and journalist in the same feature, says media-expert.

The article describes Schaatun's article about the woman who recovered from ME with cancer treatment, and that the Schaatun article refers to a previous study from the Haukeland researchers as "remarkable". Media expert Trygve Aas is critical that the article didn't mention that Schaatun had raised money, and this information has now been included to the original article. This is what's been added: "The journalist who has written this article had in 2018 a fundraiser for research into ME through the Norwegian ME Association (...). These conditions should have been shared by TV2 when it was first published".

Kirkevold from TV2 says to Dagbladet that they agree the information should have been provided at once, and that they are dependent of being trusted.
- This is a journalist with good intentions, and who did relevant and interesting journalism on this theme five years ago.

Then comes a sub headline titled: "Unethical of TV2"

"In the recently published TV 2 article, it is not informed that the study described as "spectacular" was a preliminary study with no control group. Part B of the study was stopped due to large side effects"
Signe Flottorp from the Norwegian Institute of Public Health says:
- There's no reason for describing it as remarkable findings after such a small study. It may be fine to do studies on treatments of chemotherapy, but in a field where there is a large placebo-effect, it's unethical of TV 2 to declare this as remarkable.

Next sub headline is "Source received the money"
The article says that the Norwegian ME Association was referred to as one of the sources, but there were no information about that the journalist's fundraising went through this association. They decided who would receive the funds.
"The TV2 journalist was clear that the money went to a certain type of research and wrote among other that "The ME Association is first and foremost fundraising for biomedical research into ME". As Dagbladet has written before, the ME milieu has for several years been characterised by hard fronts and disagreement about whether there should be research into biomedicine that can help ME sufferers or if there also should be research on for instance psychological treatment".

The general secretary of the Association of Norwegian Editors says the journalist has an individual responsibility in this. The article also says that there are other professional who are critical to what has happened here, that it weakens trust to TV2 and to the journalist and may be breach of the Code of Ethics of the Norwegian Press.

 

Christine who recovered from ME after treatment for breast cancer raised money for research into ME at Haukeland University Hospital. She managed to raise 700 000 NOK (65 800 Euro, 58 000 Pound, 7080 USD).

Nettavisen has written an article about the fundraising and have also interviewed Kari Sørland from the research team who says:

- We are convinced that this is a disease that is, in principle, reversible, that is to say that it is possible to recover from ME. Several patients tell of spontaneous recovery and recovery, and over the years we have met a good number of patients like Christine, who have experienced significant improvement after treatment with medicine that affects the immune system - both in and outside clinical studies.

Åpnet opp om ME-diagnosen - nå har Christine samlet inn 700.000 kroner til sykdommen
google translation: Opened up about the ME diagnosis - now Christine has fundraised 700.000 NOK for the disease

 

Impressed by the amount she raised.

*edit* The stories linked to by that article are pretty good too. Critical about Nav for not paying out to ME-patients. Critical of the CBT-narrative. The final link taught me how to apply mascara without looking like a clown, so something to learn in each of them.

 

this doesnt seem to reflect the experiences of the patient who had me after mono for 14 years? what is a latent cancer, how if it was latent could it cause extreme me/cfs like she had?

its like when people speak about HIV patients, they usually have 0 issues prior to AIDS - i worked in the field for a while and most people here had nothing going on outwardly, i know that can be similar in a lot of cancers?

you are right in so far that chemo can be really nasty im glad the researchers are looking at non chemo stuff because yeah......