About the Recovery network Norway – and what ME-patients are up against

Establishing a patient association, for the healthy, under the leadership of an MD is an excellent idea! The regulations for marketing of traditional and complementary medicine can then be bypassed and at the same time it’s a way to get access to, and influence the health authorities.

Not everyone is happy about the petition that requires the management of the CFS / ME Competence Unit to resign. There has been a number of articles with critical voices in the media and I have written about the Competence Units responsibility in the ME-debate.

MD Henrik Vogt, whom I have written about in several blog posts, called me on the phone the other day. He said that I had to change the text in the blogpost about the Competence Unit and Lightning Process – that what I wrote about his patient association, Recovery Norway (RN), is not true.

Shortly after, RN wrote a post on their Facebook-page stating that I present false information. So I posted the following comment:

«Hello Henrik,

It’s a bit strange that you call me on the phone when you’ve blocked me on twitter.

You said on the phone yesterday that the fact is that «Among the first members there were no LP instructors» and that I had to change the text on the blog post about Lightning Process as a treatment for ME.

Let me remind you of the following:

In July 2017, the Consumer Authoritiy updated the guidelines for marketing of traditional and complementary medicine (T&CM).

At the end of August 2017, the Consumer Authority sent a letter about this to, amongst others, LP-instructor Live Landmark. The Norwegian Directorate of Health, the Consumer Authority and Nafkam (Norway’s National Research Center in T&CM) have previously concluded that Live Landmark is to be considered as a T&CM provider.

The guidelines state, among other things, that: “Statements from satisfied customers, user surveys etc. that give the impression that treatment T&CM modality is effective against specific diseases or disorders are also not permitted in marketing.”

At about the same time, the stories that Landmark had posted in social media about anonymous patients who had recovered from ME using LP vanished.

On September 11, 2017, this Facebook page for the Recovery Network Norway was established.

A few days later the paper Aftenposten published an article about Recovery network Norway, written by the members of Recovery; «Listen to those who have recovered”.

Among the members who signed the article are:

  1. Helene Ragnhild Andersen, nutritionist with own counselling company
  2. Bente Denstad, LP-instructor
  3. Lise Eie, LP-instructor
  4. Berit Frivold, LP-instructor
  5. Geir Frivold, married to Berit Frivold/LP-instructor
  6. Mikkel Funnemark, married to Live Landmark/LP-instructor
  7. Kirsti Dahl Johansen, coach
  8. Anne Stine Kraabøl, NLP coach
  9. Live Landmark, LP-instructor
  10. Gyrid Listuen, LP-instructor
  11. Heddy Anne Torp Lund, coach
  12. Jan Even Raastad, LP-instructor
  13. Møyfrid Tangen, coach

These people all have economic interests in the Recovery «association’s» lobbying – inconspicuously under a doctor who has created the association for former patients and those who have recovered. They also have economic interests in getting publicity in the media. It’s odd that you, as an MD and leader of the association, is not aware of that.

Shortly after Recovery was established, the stories about the anonymous patients who have recovered from ME by LP appeared on Recovery’s Facebook-page – and now the same stories are, again, shared on Live Landmark’s pages.

This practice is unimpeachable when you are registered as a patient association – that’s how the law is circumvented.

I encourage you to inform of how many members Recovery Norway has, how many of those who have had ME and recovered and are back to work / school, how many are selling dietary supplements, diets etc. and how many are trainers/coaches, has direct relations with these or has other financial interest in activities aimed at ME patients.

It is important for all the hopeful people who follow this page that there is openness about these things. It is also important that patients, doctors, researchers and decision-makers are aware about who is earning money by promoting the Lightning Process and other commercial activities aimed at the patient group. »

RN deleted my comment after a few minutes.

Live Landmark, Lightning Process instructor, October 10th, 2017:

Recently, we launched the Recovery network Norway, a new type of patient organization for those who have recovered from chronic fatigue syndrome or ME (CFS/ME). They have recovered by using methods that makes it possible to influence bodily reactions. Our goal is to use the members’ experiences to contribute to understanding and hope for those who are still suffering.

 

The next day, RN commented on this and posted a photo of my comment. RN upholds that what I’m writing is «gross factual errors» and concludes that they «have great empathy with the desperation and also the anger one can feel when sick.» All other comments have been deleted and the post is closed for further comments.

Lobbying

RN has worked on several issues to influence the health authorities. In September, they submitted their support statement to the Competence Unit with 50 signatures. Among these, there are eight LP instructors:

  1. Inger Marie Moen Reiten
  2. Charlotte Nagelgaard
  3. Ingvild Harila Feed
  4. Kristin Blaker
  5. Ann Schifte/Osmundsen, who is a hired consultant at the Coperio Rehab Center
  6. Live Landmark
  7. Jan Even Raastad
  8. Lise Eie

They have also sent input to a parliamentary report on public health and write, among other things, about the Lightning Process.

In addition, Henrik Vogt has, together with a number of other doctors, attempted to stop the Cyclophosphamide study by drs. Øystein Fluge and Olav Mella at the Haukeland University Hospital. They have asked the Norwegian Board of Health Supervision to «reassess the ethical approval – of the evaluation of benefit vs. risk and justifiability …. »

The paradox

One of those who have signed the request is Georg Espolin-Johnson, medical expert in The National Insurance Court/Norwegian Labour and Welfare Administration. He has previously written in the newspaper Aftenposten that «Professor Ola Didrik Saugstad deprives a number of ME patients both of an offered treatment and hope» and in another paper “Today’s Medicine”, he wrote that: «By refusing that complex psychological mechanisms maintain chronic fatigue one risks to put an end to research and development of treatments which can help many patients. »

The fact that health professionals misinform, censor, block opponents and actively try to prevent biomedical research does not imply trust and dialogue. Therefore, it is also baffling that ME patients have, for years, been accused of polarizing the debate and scaring away the researchers from the field.

Henrik Vogt and his «patient association» have lectured about ME and LP at a seminar at the MD’s association and attended meetings with the Ministry of Health and Care Services and the Competence Unit for CFS/ME. The director of the Competence Unit, Ingrid B. Helland, also refers to RN in her presentations about ME and prognosis, and she has stated to the media that:

«I think it’s important that patients get both, both the Lightning Process training and the support and follow-up from physicians and health professionals.»

 

Is this acceptable by the Competence Unit for CFS/ME – the country’s supreme professional body in the field?

 

ME-patients in Norway need your support.

Link to the petition here.

More information about the petition here.

 

Thank you.

 

Written by Nina E. Steinkopf

 

Edit/correction:

The original text stated that Recovery Norways Facebook page was created on September 8, 2017. The correct date is September 11, 2017.

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