News from Scandinavia

Tom Kindlon said:


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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
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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?
 
This is from September, but just discovered it.

The Danish doctor Stig Gerdes who stood up for severe ME patient Karina Hansen who had been sectioned by Per Fink, has now reported the director of the Danish Health Authority for neglecting the health of young women. The complaints are sent to Danish Patient Safety Authority and are about the HPV vaccine and the diagnosis "functional disorders". Stig Gerdes has also reported the Research Center for functional disorders at Aarhus University hospital. Stig Gerdes says there are lots of documentation that patients with "functional disorders" suffer from something particular and points to among other ME.
Stig Gerdes lost his authorisation after the Karina Hansen case.

Fyens Stiftstidende - Stig Gerdes anmelder direktør: Han har satt utallige unge kvinders liv og førlighed på spil
google translation: Stig Gerdes reports director: He has put numerous young women's lives and health at stake
 
The Norwegian ME Association has today had a meeting with state secretary Anne Grethe Erlandsen from the Ministry of Health and Care Services.

This is what they say in their Facebook post:
The Norwegian ME Association has today visited state secretary Anne Grethe Erlandsen from the Ministry of Health and Care Services. We talked about clinical pathway, the ME Association's report on rehabilitation and the problem with governmental staff as GPs or people from the Norwegian Labour and Welfare Administration recommending alternative treatments.

 
The chairman of The Norwegian ME Association has written a letter-to-the-editor to a newspaper about the situation for ME patients in Norway where he urges prime minister Erna Solberg to do more for the patients.

He gives some historical background and update about recent developments in research, including the criticism against the research behind GET/CBT as treatments. He talks about Fluge/Mella's research and finds it incredible that the government has suggested to from now on stop the previous annual allocation to their work. He urges politicians to keep supporting the researchers. He also points to the need for a proper CFS/ME competence service which works for ME-patients and not patients with fatigue.

Følg opp ME-løftene du ga, Erna
google translate: keep the promises you made, Erna
 
Good letter :thumbup:

The title is a reference to a speak Erna made on may 12th in 2015, when she opened an art exhibition by ME-pastients:

- A scandal
Prime Minister Erna Solberg, who opened the exhibition, believes it is important that the health service now prioritizes research on ME and believes patients have been treated poorly by the Norwegian health service over the years.
- It's really a scandal. Patients have faced a lack of respect simply because we have lacked knowledge. The worst thing is that we have not worked so hard to get that knowledge, "said Solberg, who has allocated money to a new diagnostic center for muscle and fatigue conditions.
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https://www.microsofttranslator.com...-jeg-lager-kunst-pa-de-gode-dagene-1.12357129
 
benji said:
LP coach Live Landmark looks forward to have a lecture on the researcher seminar (not the open day for patients and others, where David Tuller will be speaking, but the research seminar itself).

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She doesn't even have any sort of scientific background.. How can she possibly be qualified to give a lecture at the research seminar?

Also isn't LP officially recognised as alternative medicine in Norway?

Bizarre

Granted I would rather have some LP wacko at a conference than some of the CBT / GET proponents like Fink. At least those who advocate for LP are honest about their ideas of ME/CFS, which should make it painfully obvious for everyone how out of touch with reality they are. Whereas someone like Fink is so dishonest that it can be harder to see through his smokescreen of lies and deceit.
 
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Contact person at FHI/Norwegian institute of public health is Kristine Løvås Jacobsen. She’s done the master:

DNA methylation and microRNA-mediated regulation of gene expression in adolescent Chronic Fatigue Syndrome

Supervisor: Vegard Bruun Wyller..

The sales agent and promoter of LP, closely Linked to Landmark. Not to forget that FHI itself has very little knowledge of ME and easily are misled by this LP BS. So nothing is new, little has improved last 6-7 years.
 
I'm sorry to say that I'm not surprised - sad, but not surprised :( It's really hard to explaine just how ingrained LP have become in the medical profession in Norway. Landmark have been working on getting in this position for years, and very good at it. LP is generally not considered "alternative treatment", but as an actual therapy with similar to CBT - only more effective.

Also - Lillebeth Larun and the norwegian cochrane group are situated at the FHI. Might give people a better idea of the deeply held biases that made the exercise review possible.


And - Vegard Bruun Wyller have stated (in the norwegian journal for doctors):

A recent intervention study shows effect of the method "Lightning process" (4), which is a variant of cognitive behavioural therapy. Patients with chronic fatigue syndrome should of course are encouraged to attempt such methods, but many people will probably say no if they believe in (the incorrect) the message that the disease "is sitting in the blood". Thus they go missing out on an opportunity to improve its functioning, and, at best, be completely healthy.
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https://www.microsofttranslator.com...mentar/ukritisk-medieopptreden-av-me-forskere



And - one of the organizers are "the national competence service for CFS/ME" The leader is Helland, and she said among other things this about LP when the SMILE study was publishsed:

-I think it is important that patients getting both, both the training program Lightning Process and help, support and follow up from the medical and health care professionals.
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https://www.microsofttranslator.com.../09/21/-dette-er-veldig-spennende-resultater/



Even if the NAFKAM (Norway's National Research Center in Complementary and Alternative Medicine) has stated that LP is alternative treatment, that really haven't changed much.

NAFKAM, the Consumer Authority and health services are in agreement in their reviews of this, and are stuck on the Lightning Process is perceived as health related treatment that mainly takes place outside the health care system, because the method aims to remedy the various health problems, and the courses have a therapeutic/health related goals where the instructors interpreter patients ' symptoms. LP-instructors are therefore to be considered as alternative managers covered by the regulation which emerges from the Act and its regulations.
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http://www.microsofttranslator.com/bv.aspx?from=&to=en&refd=www.bing.com&rr=DC&a=http://www.nifab.no/behandlingsformer/lightning_process


[edit: fixed quotes]
 
Family and friends of ME patients have written an open letter to the Minister of Health urging him to help them get back their loved ones. Some of those who have signed the letter are celebrities (actor, musician).
The letter gives good information and background story for the unbearable situation for ME patients and how impossible CBT/GET are as treatments. It also contains a good summary of current biomedical research.

This was very heartening to see and a super support for ME patients :thumbup:

It is neglect not to focus on the biology of ME. We need to increase research, test new treatments and ease the suffering. Vi need a center for research and treatment studying different kinds of phenotypes and testing treatments that has shown some effect on subgroups as well as accommodate for individual treatment courses. We need the most recent kinds of tools for assessment, and an ME-center that systematically updates their knowledge and is in contact with international researchers. There is acute need for adapted rehabilitation, ambulant service and support for the carers. Last year 30 million NOK were allocated to ME. This is a start, but nowhere near enough. In this year's government budget, the path-breaking studies from Haukeland are cancelled. This is a serious matter. There is a lot to catch up on after decades of unproductive focus and lack of research on a physiological understanding of the disease.

Åpent brev til Bent Høie
google translate: Open letter to Bent Høie
 
:heart:

Also signed by three specialist in psychology and a couple of professors.

Most of all, deeply touched by several non-patients fronting these issues and putting their name to the cause. That's just amazing. People have avoided getting involved, to not have their name connected to "the ME-debate".
 
That is a great letter, capturing the essentials. Should be an easy informative read for people not familiar with this insane mess. Well done and thanks.

It's been absolutely impossible for doctors with knowledge and patients to get through to the ones responsible, get them awake and alert. It's a shame, but I do think we need «famous» people engaging. Should be very unnecessary but really says it all. The situation is totally unacceptable in 2018, moving an inch here and there, mostly just empty words.
 
A mother to a daughter with severe ME has written a letter-to-the-editor directed to the Prime Minister and Minister of Health. She describes her family's meeting with the health care system and asks for more knowledge about ME and more funds for research.

Kjære Statsminister Erna Solberg og Helseminister Bent Høie
google translation: Dear Prime Minister Erna Solberg and Minister of Health Bent Høie

You who are in positions to make an influence so our daughter and other ME patients will get help and maybe one day recover, must do what you can to correct the mistakes and lack of knowledge that is so obvious, both in our municipality and generally in municipalities and health care. You are in great power and can lift these patients by putting ME on the agenda. Grand words is of little help if it does not include real action. The ME case requires both higher levels of knowledge and a lot of funding for research.
 


Mella and the carer of a PwME presented research update and personal experiences about living with ME for the Norwegian Parliament today, during a seminar on women’s health.

It was organized by the Labour Party (opposition), but let’s hope this might put the research at Haukeland back on the budget (it has been cut by the ruling parties).
 
Kalliope said:
A mother to a daughter with severe ME has written a letter-to-the-editor directed to the Prime Minister and Minister of Health. She describes her family's meeting with the health care system and asks for more knowledge about ME and more funds for research.

Kjære Statsminister Erna Solberg og Helseminister Bent Høie
google translation: Dear Prime Minister Erna Solberg and Minister of Health Bent Høie

You who are in positions to make an influence so our daughter and other ME patients will get help and maybe one day recover, must do what you can to correct the mistakes and lack of knowledge that is so obvious, both in our municipality and generally in municipalities and health care. You are in great power and can lift these patients by putting ME on the agenda. Grand words is of little help if it does not include real action. The ME case requires both higher levels of knowledge and a lot of funding for research.
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The Minister of Health and Care Services Bent Høie has written a response to this open letter

Bent Høie: Forskning på ME er viktig for meg og regjeringen
google translation: ME research is important for me and for the government

I know it's hard to be ill with ME. People with ME experience great limitations on both health and quality of life. An extra concern is that many children and young people are affected. They miss a lot from the important adolescent years. The disease is also a big strain for the families. Therefore, the open letter to me, which was published in Dagsavisen, on November 19th, is powerful reading

But, it's not the case that we're not doing anything.
 
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