A Swedish reporter is interested in reporting on the PACE Trial

T

Tom Kindlon

Senior Member (Voting Rights)


---

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:

About two years ago I began to talk to patients suffering from the disease endometriosis. Their stories were so surreal that I barely believed them. I scrolled in the journals and made phonecall after phonecall and soon realized that what they were telling was true. Then I thought that it was only about occasional cases that had a great deal of bad luck. But soon I understood that their experiences were more the rule than exceptions, writes SVT's medical reporter Josefin Lennen Merckx.
Click to expand...

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 :)


2. Why is such an unknown disease?

One reason why the disease is relatively unknown to the public is that it has so many names. It is also described with the terms CFS and chronic fatigue syndrome. But it is misleading because the name only describes one of several symptoms.

Another reason why ME has not been drawn to such an extent is that many of the victims are simply too ill to see the energy and to spread knowledge about the disease. The hardest people get bedded in the home and can be so exhausted that they can not hang out with family and friends or even speak on the phone. They are forced into an involuntary isolation.

One of the strongest voices for the country's ME-sick person compared his life as ME sick with living in an isolation cell in prison with constant torture.
Click to expand...

https://www.svt.se/nyheter/inrikes/allt-du-behover-veta-om-sjukdomen-me
 
Last edited:
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 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.
 
Obermann said:
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
Click to expand...

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:



4 questions: You need to know about ME
Published February 21, 2018

Up to 40,000 Swedes are estimated to be affected by ME. Nevertheless, it is a rather unknown disease that is also discussed [read: controversial] in health care. SVT Nyheters Medical Reporter Josefin Lennen Merckx delivers everything you need to know.

1. What is ME?
The abbreviation ME stands for myalgic encephalomyelitis and it is a neurological disease. It is characterized by an extreme physical and mental fatigue that can not be rested [read: cured by rest].

Patients also have a number of other disabling symptoms. These may include pain, sleep disturbances, concentration difficulties, sensitivity to noise and light and recurring flu-like symptoms.
Many who receive ME have had bacterial or viral infections and never recovered even if the infection itself is hot [read: healed].

2. Why is such an unknown disease?
One reason why the disease is relatively unknown to the public is that it has so many names. It is also described with the terms CFS and chronic fatigue syndrome. But it is misleading because the name only describes one of several symptoms.

Another reason why ME has not been drawn [read: noticed] to such an extent is that many of the victims are simply too ill to see the energy and to spread knowledge about the disease [read: too ill to be seen (by others than closest family members, lacking energy to spread knowledge about the disease]. The hardest [read: worst suffering] people get bedded in the home and can be so exhausted that they can not hang out with family and friends or even speak on the phone. They are forced into an involuntary isolation.

One of the strongest voices for the country's ME-sick person compared his life as ME sick with living in an isolation cell in prison with constant torture.

3. The ME diagnosis has been controversial among healthcare professionals, how are they?

This is because there is still so much that you do not know about the disease, for example, what causes it.

Then there have been a lot of prejudices that ME is just a kind of fashion diagnosis and a misconception that it's a psychosomatic disease.
However, the WHO World Health Organization has classified ME as a neurological disease.

Many ME patients have been told that they think they are suffering from mental illness or that they have fatigue syndrome [read: burnout syndrome].

They have also [not] had a clear place of residence in their care, and care has also not focused on specialist receptions for ME. Patients have often been wound up for a long time in the care of awaiting proper diagnosis. And once they have been diagnosed, there are many who have yet to fight the authorities about the right to support and sickness benefit.

4. What does the research situation look like about this disease?

Patients are critical that insufficient resources have been invested in biomedical ME research. One problem is that there is no clear biological evidence for the disease at the individual level.
Therefore, it is not possible to take a test to see if a patient has ME or not.

There is also no cure, but interesting studies on biomarkers and medical treatment have been published.

The US Health Agency National Institutes of Health has upgraded its prioritization of the disease and doubled its funding for the ME research. So it gives little hope that knowledge about ME will increase and spread in healthcare.
Click to expand...
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom