5 million (SEK) grant from the IKEA founder's (Kamprad) foundation for research on ME (Sweden)

In the media's review of the physician and researcher Jonas Axelsson and the private healthcare company Ameliekliniken during the fall and winter of 2023, it emerged that Axelsson has received a 5 million (SEK) grant from the IKEA founder's (Kamprad) foundation for research on ME.

I have dug deeper into the studie to understand what it entails, and what it is based on, and have collected what I found in an ongoing podcast season (in Swedish). On the blog I publish my scripts and sources. This is also in Swedish but I thought I would post translated links in this thread.

 

1 Why is it important for me to review care and research?

In the first episode, I talk about the background of the laws and regulations around research, that vulnerable groups have been exploited in unethical experiments and that it is not only the research itself that has laws and regulations to comply with, but even researchers have some kind of code of conduct. I note that we as end users of research must be able to criticize both research and researchers if they do not measure up.

Podcast:
https://podcasters.spotify.com/pod/...-fr-mig-att-granska-vrd-och-forskning-e2gk471

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

2 The Kamprad family foundation finances research on ME

I have got hold of the grant application to the Kamprad foundation and am working through the content.

Podcast:
https://podcasters.spotify.com/pod/...stiftelse-finansierar-forskning-om-ME-e2gk6al

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

3 ME or paraviral disease?

In the third episode, I go through how Axelsson uses the terms ME and paraviral disease in the application to Familjen Kamprad's foundation in the spring of 2022 compared to in contact with media in the fall of 2023. I note that Axelsson equates ME and paraviral disease in the application, but in the media's review he emphasizes that ME is something completely different from a paraviral disease.

Podcast:
https://podcasters.spotify.com/pod/show/eremiten/episodes/S1A3-ME-eller-paraviral-sjukdom-e2gka8i

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

4 Is there evidence or not?

In the fourth episode, I take a closer look at how Axelsson describes the state of the evidence for the treatment he wants to test in the Kamprad study (including Valganciclovir) compared to how he talks about it with the journalists in the media review in the fall of 2023. I note that Axelsson is extremely contradictory on this issue. In the application to Kamprad, he claims that there is no evidence for the self-developed treatment model, but in contact with media he repeats over and over that what he does is evidence-based.

Blog post (Google translated):
https://mitteremitage.wordpress.com/2024/03/10/maran-s1a4-finns-det-evidens-eller-inte/

The podcast link in the translated version don’t work so use this one ⤵️

Podcast:
https://podcasters.spotify.com/pod/show/eremiten/episodes/S1A4-Finns-det-evidens-eller-inte-e2gkfbu

 

Thanks for making this podcast @MittEremltage for those of us with low reading stamina (and who understand Swedish)

What a story!

Has the Kamprad foundation made any comment? You'd think they'd feel a bit manipulated

 

No they have not (yet) respond on anything, not even the mediacoverage in 2023. Maby it will come.

Thank you for kind words!

 

5 What is the difference between healthcare and research?

In episode 5, I do a review of how relevant instances describe the difference between healthcare and research. I take examples from the investigation of Macchiarini and the ME-clinic in the region of Västerbotten. I state that methodical search for new knowledge and tests of new treatment methods on groups of patients is research. This means that Axelsson's method for diagnosis and treatment as described in the application to Kamprad is something that should have been done within the framework of one or more scientific studies. In the next few posts I will try to find out which studies.


Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

The podcast link in the translated version don’t work so use this one ⤵️

Podcast:
https://podcasters.spotify.com/pod/...-Vad-r-skillnaden-p-vrd-och-forskning-e2gkhi5

 

6 What happened when the cameras went off?

In my sixth episode, I make a historical retrospective and summarize what happened to Axelsson's research after he was confronted with information about the lack of valid research permits in the television program ”Vetenskapens värld” 2020. I state that some kind of research has continued at the Ameliekliniken after ”Vetenskapens värld” and subsequent ÖNEP-investigation, indictment and a closed preliminary investigation.

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

The podcast link in the translated version don’t work so use this one ⤵️

Podcast:
https://podcasters.spotify.com/pod/.../S1A6-Vad-hnde-nr-kamerorna-slocknade-e2gki3p

 

7 What is covered by previous research? Part 1

In the seventh episode, I go through Axelsson's approved ethics review applications to see if the development of his method fits within any of these. I note that there are no published results from the studies, but that the diagnostic tool could be accommodated in the studies. However, I can't find any ethics review permit that covers drug tests.

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

The podcast link in the translated version don’t work so use this one ⤵️

Podcast:
https://podcasters.spotify.com/pod/...omfattas-av-tidigare-forskning--Del-1-e2gkn1f

 

8 What is covered by previous research? Part 2

In episode 8, I go through some articles based on a previous POTS study in which Axelsson was a co-researcher, and which he refers to in two of the applications I reviewed in the previous episode. I note that previous studies and scientific publications that form the basis of Axelsson's approved ethical review applications deal with POTS and have no clear connection to ME, fibromyalgia or postcovid, which are the diagnoses the approved permits concern.

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

The podcast link in the translated version don’t work so use this one ⤵️

Podcast: https://podcasters.spotify.com/pod/...omfattas-av-tidigare-forskning--Del-2-e2gkngt

 

9 What does Axelsson really mean by ME?

Episode 9 is a review of Axelsson's inconsistent use of the diagnosis designation ME. I note that there are signs that indicate that Axelsson in fact believes that ME is the same as autonomic dysfunction, but that his way of reasoning does not match the criteria for diagnosis that are usually used.

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

The podcast link in the translated version don’t work so use this one ⤵️

Podcast: https://podcasters.spotify.com/pod/...-Vad-menar-Axelsson-med-ME-egentligen-e2glifn

 

10 Does Axelsson differentiate between ME and POTS?

In my tenth episode, I work though and analyze two lectures with Axelsson that were given in the context of ME and which are available via the internet. I note that Axelsson goes from equating ME and POTS in 2019 to including a number of possible diagnoses (psychiatric diagnoses and criterion diagnoses) that could have the same causes in 2021.

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

The podcast link in the translated version don’t work so use this one ⤵️

Podcast: https://podcasters.spotify.com/pod/...10-Gr-Axelsson-skillnad-p-ME-och-POTS-e2glinj

 

11 Where does the unpublished data come from?

In episode 11 I attempt to derive what research the unpublished data comes from that Axelsson reports at the two lectures I went through in the previous section. I note that it is difficult to understand the origin of the unpublished data and that one reason for this is Axelsson's unclear use of different diagnosis designations and that he repeatedly refers to research that concerns other diagnoses as if it were research specifically focused on ME

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

The podcast link in the translated version don’t work so use this one ⤵️

Podcast:
https://podcasters.spotify.com/pod/...ar-kommer-den-opublicerade-datan-ifrn-e2gllhb

 

12 Who is the main applicant?

In episode 12, I return to analyzing the content of the application to the Kamprad Family Foundation. The focus is on the practical details of the study, such as who is the main applicant for the study and why the fund administration needs to move to Uppsala University. I note that Axelsson resigns from Karolinska hospital shortly after the application is made and ends his work in connection with Kamprad giving notice that they have granted project funds.

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

The podcast link in the translated version don’t work so use this one ⤵️

Podcast:
https://podcasters.spotify.com/pod/show/eremiten/episodes/S1A12-Vem-r-huvudskande-e2gln4s

 

13 Are there any collaboration partners?

In the thirteenth episode, I go through the other participants who are mentioned in relation to the Kamprad application with the goal of understanding if any of them can take over the fund management after Axelsson resigned from Karolinska hospital. I note that there is no one in the application with the type of employment that Kamprad requires in order to move funds. In my search for answers, it appears that there is information about several different people and circumstances in the application that is not correct.

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

The podcast link in the translated version don’t work so use this one ⤵️
https://podcasters.spotify.com/pod/...13-Existerar-det-ngra-samarbetsparter-e2glp1e

 

14 Time to tie the knot

End of season one with summary and final reflections.

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

The podcast link in the translated version don’t work so use this one ⤵️
https://podcasters.spotify.com/pod/show/eremiten/episodes/S1A14-Dags-att-knyta-ihop-scken-e2glpfg

 

15 (Bonus) How can we get better care and research?

I had to make one more episode and answer a very good question from an facebook group (where I and my texts are banned). The question is: How should all ME sufferers and patient representatives act together for better care and research?

Blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

The podcast link in the translated version don’t work so use this one ⤵️
https://podcasters.spotify.com/pod/...-Hur-ska-vi-f-bttre-vrd-och-forskning-e2hcrb5

 

Yesterday, two patient organizations published posts about that the Ameliekliniken will close.

Brief blogpost, Google translated:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp