A Swedish reporter is interested in reporting on the PACE Trial

https://twitter.com/user/status/1060926666464223233


---

Sent: Friday 9 November 2018 14:35
To: cureme@me-cfs.se
Subject: Swedish reporter is preliminary interested in PACE trial



Dear Sirs,

In Sweden we had extensive reporting of the the surgeon Paolo Macchiarini and his fraudulent research, which led to his and others fall. SVT made several investigative television programs where the fraud of Paolo Macchiarini was exposed. SVT is the public television broadcaster of Sweden. A sort of the counterpart of BBC.

https://www.theguardian.com/science/2017/sep/01/paolo-macchiarini-scientist-surgeon-rise-and-fall

https://www.bbc.com/news/magazine-37311038

Now, a medical reporter/journalist of SVT says she is interested in the PACE trial for maybe the future. She can be contacted via PGP encrypted email if wanted she says. Testimonies of persons with insight in the PACE trial might be interesting for her to read. Her contact details are below.

Yours Sincerely, Kasper



Josefin Lennen Merckx
Medicinreporter
SVT Nyheter Rapport & Aktuellt

phone +46708847056 connection 47308
josefin.lennen-merckx@svt.se

 

This was posted also in the News From Scandinavia thread, but I think it's a good idea to have single thread for these news. So I'll share my reply from the Scandinavia thread here as well:

Oh, this is VERY exciting. The Paolo Macchiarini-scandal surfaced only thanks to a documentary sent on national television in Sweden. Those who had alerted of the scandal before the documentary were very badly treated. Macchiarini published in the Lancet and was protected by the establishment because of his celebrity-status as surgeon. I've been in contact with the journalist who made the documentary regarding the PACE-trial, but it was not the right time for him to take on a new project. It's super exciting if SVT would like to do something similar with PACE.

I am tagging you @dave30th Perhaps you could take a detour to our neighbours in Sweden before/after your upcoming visit to Norway?

 

Do we know if this is from legitimate journalists?

As in we remember the debacle from De Monitor which is supposedly genuine journalism but then did not do any actual journalism. They were given plenty of info and disregarded everything that contradicted Sharpe.

 

It's hard to be sure how someone coming into this will percive this whole mess, and it's bad that we have to worry about that But from a bit of google'ing I think she is the real deal.

For some reason I can't get google translate to work for SVT-links, but here is something she wrote after talking to women with endometriose:

https://www.svt.se/nyheter/inrikes/kronika-ett-enormt-svek-mot-kvinnorna


And this she wrote of ME february this year, it's an overview with just 4 main points, but still reads sympathetic. "4 questions: What you need to know about ME" Also mentions the WHO classification and ends with: "The US Health Agency National Institutes of Health has upgraded its prioritization of the disease and doubled its funding for the ME research"

No psychobabble

https://www.svt.se/nyheter/inrikes/allt-du-behover-veta-om-sjukdomen-me

 

so who do I write to exactly?

 

Josefin Lennen Merckx
Medicinreporter
SVT Nyheter Rapport & Aktuellt

phone +46708847056 connection 47308
josefin.lennen-merckx@svt.se

 

The journalist,

 

She is a serious journalist. In February, she was talking about ME on a big TV channel and I e-mailed her and asked if she had heard of the PACE trial and gave her links to a couple of sources. She responded and thanked me and also wrote that a couple of other people had informed her about PACE after her talking about ME on the news. She wrote that she would look into PACE when she had the time.

 

I agree, she seems legitimate. She has written about ME/CFS on the web page of the National Swedish Television. She says that it is a neurological illness, that the name chronic fatigue syndrome is misleading, and that the National Institutes of Health has upgraded the priority for ME/CFS.

https://www.svt.se/nyheter/inrikes/allt-du-behover-veta-om-sjukdomen-me

 

I downloaded a video from when she talked about ME on the national news i February. It doesn't have subtitles but she talked about name confusion and that Chronic Fatigue Syndrome (kroniskt trötthetssyndrom in Swedish) is a misleading name because there are so many other symptoms.

She mentioned that ME is often mistaken for burnout (exhaustion syndrome, utmattningssyndrom in Swedish).

She also mentioned that people with ME are very ill and therefore have a hard time being listened to and that patients are subjected to a lot of prejudice and that healthcare professionals often lack knowledge.

I'm not able to translate more right now but over all, she did a much better job than most reporters have done in Sweden.

Before her studio talk, they interviewed a patient (Emil Heiling) and doctor Anna Lindquist at Stora Sköndal, which is (according to me) the best ME clinic in Stockholm.

 

I have not proof-read the Google translation (edit: some comments in brackets now added), but at least in its original, untranslated state, the piece is not too bad: