SOS! The diagnostic party is out of control!

Powerful forces are claiming all exhaustion is the same as ME, and that lack of recovery is due to ourselves. We are accused of taking hope, spreading darkness, destroying lives and for not be living in the real world. By health professionals in Norway. Have it ever occured to them it may be the opposite? 

This is an English translation of a Norwegian blog, published 20 October 2019.
Thank you for reading! 

Vogt; prestisje på spill
Henrik Vogt: MD/phd/founder of RN: “What’s most important to me, is to not let patients hope be destroyed by the constant, unfounded theories they may suffer from somthing they can’t change themselves. It destroyes lives. And I put my prestige at risk in claiming so.”
Vogt; Hatt det ekte problemet (2)
“RN don’t mind about the cause or how many different diagnosis there are. Our approach is that all members have suffered from the “real” problem. And no methods can distinguish them from “any other ME.” Our members have recovered by different methods. They don’t claim everybody will.” (RN = Recovery Norway)

 

Whose experience should be most valid?


«Please don’t tell the wrong story about us!» were my hopeful words when I shared my story back in 2018. A story many could see themselves in, and which was shared 7500 times on Facebook. But the opposite has happened. We are being bombarded with recovery stories. Stories by people who stressed, pondered and worried themselves sick. By people who got well when they learned to take better care of themselves. By people whose recovery was «just a small mental step away.»

I’ve been one of them. One of those who have healed myself from stress and other diffuse health struggles. Something I can’t do today. Because I’m afflicted by a disease I can’t control.

Once again I’ll share my experience in order to raise awareness of ME. This time I’ll illustrate how different patients receive the same diagnosis.

 

LL; La de som er blitt friske av ME spre håp (2)
Live Landmark: Highly profiled LP-instructor, co-founder of RN. “Let the recovered ME-patients bring you hope! RN is a newly established organization for people who’s recovered from ME and similar conditions. We share our experiences so more people can return to a healthy life. The initiator is MD Henrik Vogt (phd).”

 

LL; Fru Luna; tankesprang unna
“This is brilliant! You need to convey that recovery is just a small mental step away!”

 

A confused health care system

«Why do you say you’ve got ME?» a Neurologist asked me back in 2016. «The ME-diagnosis is nonsense, and given to everybody with sympthoms we can’t explain. However, your diagnosis – Postviral fatigue syndrom (PVFS) – is awknowledged by the medical community. If you want to be taken seriously by us, that’s the name you use.

At the time I didn’t know PVFS and ME are both registered with the same diagnostic code in WHO, under diseases of the nervous system (G93.3).2 Neither did I know that a review of 9 000 reserach articles had stated that ME is a complex and disabling multisystemic disease.3 Maybe the Neurologist didn’t know either? But I should soon learn he was absolutely right about the diagnosis is given to anybody.

 

ME-blogg; Gammel vin på nye flasker - engelsk

 

Two months later I saw Bjarte Stubhaug, a Psychiatrist with a doctorate in chronic fatigue (neurasthenia), and with substantial influence over the ME/CFS patient group in Norway.4 He said‚

«You’re not sick. You are just vulnerable to stress. You can recover if you want to.»

The recipe was handed out on a piece of paper: Regular sleep and food, one hour walk per day and mindfulness.5 But I had to be motivated in order to succeed. I was also offered to attend a 4-days course at his clinic, paid for by the public.

Both the course and the advice of not listening to my body made me worse. I wrote about it in my previous blog post, without SS; tv2 (2)mentioning his name. In February 2019 we were both interviewed by tv2.no in the article: «ME-patients in rage after “sensational” study.»6 Stubhaug had just published a study which stated 8 out of 10 ME-patients had become healthier after attending his course.7

But did they really have ME?


The healthy patients

The first patient story was posted on the cover of the newspaper Bergens Tidende. «Sick with ME for 17 years. Recovered after attending a 4 days-course.» The article reported of a mother of four getting rid of mental residue she had been carrying for 17 years. She felt sick when she arrived at the course and healthy when she left.Two additional newspapers published the same article.9 10

A week later, we could read on the front page of Dagbladet, one of the biggest newspapers in Norway: «Sensational ME-treatment.»11 Three days later 23 professionals put their names on a chronical in Bergens Tidende, stating: «In the real world, ME-patients get better, healthy and return back to work.»12

Aviser; Bergens Tidende; frisk på 4 dager (2)

 

Aviser; Dagbladet, ny sensasjonell behandling (2)

 


The health enterprise Helsa Fonna, which is collaborating with Stubhaug13, wrote about new hope and stated that the effect of the course is permanent – even if the study doesn’t measure whether the participants had actually returned to work or school.14

Stubhaug himself told NRK Radio that people who don’t recover often suffer from disaster thoughts, lack of motivation as well as little knowledge of their behavior.15

Artikler; Helse Fonna
Helse Fonna announces the study which brings hope to CFS/ME-patients. 80% experienced a significant recovery – and the effect is permanent. Photo av Bjarte Stubhaug and Haldis Lien, two of the writers behind the study.

The study’s protocol

If the media had looked into the study’s protocol, they would have seen that the intention was to study:

«Changes in health, level of function, quality of life and coping skills in an overall general psychiatric patient population.» This is patients with anxiety, depression and similar.

According to the National Guidelines for CFS/ME,16 mental disorders should be ruled out before the ME-diagnosis is given – and it’s recommended to use the Canada criterias.25

ME, CFS/ME or diagnostic criterias for ME is not mentioned in the study’s protocol!

Who is the course intended for?

I had been sick for a year when a MD at the local hospital (SUS) recommended me to attend Stubhaug’s course. I was desperate to get well and willing to try everything.

His website said it was an «Intensive treatment program for CFS/ME.»17 However the letter of notice said: «Group treatment program for health issues, stress and coping.»18

In 2018, Stubhaug told the paper Bergens Tidende it was a «four-day program in disease management.» One of the participants featured in the article said her recovery plan was to “become more of a bitch.”19

Shortly after Dagbladet had announced the “new and sensational ME-treatment” to the people of Norway, Stubhaug admitted to forskning.no:

«This is first and foremost a management program for chronic illness, not a treatment program for ME.»20


Dagbladet has never corrected the misinformation!

 

Neurasthenia – Stubhaug’s favourite “wine”

How is it possible that the disease I got as a direct result of Denguefever (ME/PVUS) is being mixed with stress and psychiatric diagnoses? I’ve done some research:

In 2001 Stubhaug was interviewed by Haugesunds Avis (local newspaper).21 The article starts like this: «You are constantly exhausted, can hardly do anything and struggle with concentration and memory loss. Then you might be suffering from Neurasthenia – Chronic Fatigue Syndrome.»

The articles states that 5-6% of the population suffer from this. For a population of 5 million people, this makes up 300 000 people with neurasthenia.

Stubhaug is further quoted:

«ME has a more narrow range with more emphasis on infection of the nervous system as cause of the symptoms. We have chosen to use the broader neurasthenia diagnosis, which includes more people and gives more room for the interaction between body and soul.»

According to a documentary on Norwegian national television (NRK) in 2017, neurasthenia is health struggles related to stress, rapid changes in society, high demands and personal expectations.22 The diagnosis is registered under Neurotic, stress-related and somatoform disorders in WHO (F48.0).23

If 300 000 people suffer from neurasthenia, how many are affected by ME?

According to the Norwegian ME Association, the estimated numbers are 0,2 – 0,4%. In Norway that’s 10 000 to 20 000 people.24 But if you look at the prevalence numbers prepared by Barbara Baumgarten-Austrheim, former head of the ME center at Ullevål Hospital in Oslo, only 5 500 people meet the Canada criterias – which is recommended by the Health Authorities.25

Prevalenstall


The difference between 5 500 ME-patients and 300 000 people with neurasthenia is formidable. However, the disease of the few should soon become the diagnosis of the many.

In 2008, Stubhaug received a doctorate in chronic fatigue.26 It’s based on a study of 72 patients with neurasthenia. But unlike in 2001, he no longer distinguishes between neurasthenia and ME:

«Chronic fatigue syndrome (CFS) has been known as neurasthenia for more than hundred years and today is often called ME (myalgic encephalopathy), CFS / ME.»

When Stubhaug was interviewed by Bergens Tidende in 2008, he said the patients are sick without being sick, and that the condition has many names; Neurasthenia, Gulf War Syndrome, Yuppie flue (Jappe syke), CFS and ME.27

«Same disease, new names. Old wine on new bottles, says Stubhaug.»

Stubhaug; bilde BT, gammel vinStubhaug; vinflasker (2)

Recovery Norway – “Lighthouses in the ME-darkness?”

Lately, a number of recovery stories have been published in fast speed from Recovery Norway (RN).28 An organization established 2 years ago by Henrik Vogt (phd), Live Landmark – a high profiled instructor in Lightning Process (LP), and a few more.29

The organization is for people who have recovered from “ME/CFS and similar illnesses” by changing their thoughts, feelings, relationships and behavior – mainly through stress management and Lightning Process. The latter is an expensive 3-days course in mindcontrol at the cost of 16 500 NOK.30

They may also consider members who have recovered from placebo.31

LL; VI har startet Recovery Norge
Live Landmark announcing RN: “Our members have recovered from methods involving thoughts and actions – making it possible to interfer in bodily reactions. We will share our experences to raise awaremenss and hop for those who still suffer.”

According to the criteria for membership, ME is associated with burnout, neurasthenia, fibromyalgia, long-term pain, irritable bowel (IBS) and tinnitus (ringing in the ears).32

Henrik Vogt himself has recovered from tinnitus, and shared his story at RN last year:

“I was thinking about sounds all the time. ‘Is that sound coming from the dishwasher or from my ear?’ I got disaster thoughts. The perfectionist in me said ‘you can’t live a life with an imperfect body’. It sounds ridiculous, but it felt claustrophobic.»33

In an interview with the magazine Allers, Vogt said RN-members are like «guides and lighthouses in the ME-darkness.»34 And when he was interviewed by the Journal of the Norwegian Medical Association he said:

«The purpose of the network is to contribute in bringing hope and better understanding in a situation where a lot of darkness and theories that people are affected by bodily defects are being spread.35

When the organization submitted their input to the Norwegian parliament, Stortinget, Report for Public Health in 2018, they expressed their concern about a stressful society, lack of competence in the health care system, and people who take hope by scaring others away from treatments that work.36

In January of this year, Vogt also blamed the ME-community for a family tragedy with loss of lives in Sweden:

Vogt; svensk tragedie

Landmark also suggested the children could have been alive if «the parents had gained access to the hope the recovered patients represent.»38

LL; Når legen gjør deg syk - ingress (2)

 

Her chronicle was printed in Dagbladet, and later unpublished online.39

Political Editor of Dagbladet, Geir Ramnefjell, stated it was unpublished due to Landmark’s reference to the murders in Sweden, and her financial interest in the treatment she refers to.

Dagbladet; avpubliserer kronikk 1Dagbadet; avpubliserer kronikk 2

 

How was Live Landmark healed from ME?

When I got sick in 2015, I soon became aware of two people who had healed themselves from ME. It was Live Landmark who had recovered from Lightning Process, and Helene Ragnhild who had recovered from dietary changes along with LP.

Since I had been a success story in the magazine Allers40 with a similar diet as Helene Ragnhild just two months before I fell ill with Denguefever and ME, it was LP that caught my interest. I read everything I came across and understood it was about mental techniques. This I knew quite a lot about already, so I started doing affirmations and visualization, but to no avail. So what was their secret?

 

SS; Allers; kosthold
“A new diet made me halthy!” (Article in Allers, March 2015, two months before the Denguefeber broke.)

 

I found out about a year ago, at a Conference finding place in my area.41

Live Landmark told the audience she recovered from ME when she realized she wasn’t suffering from a chronic neurological disease, but from a stress-related condition she could manage herself. After just 4 hours at the course (LP), she declared herself healthy! A few months later her life was back to normal again.

The method she used was to make a specific gesture with her hand every time she thought about illness and symptoms. She called it the “stop-button.” It was to stop herself from pondering on negative thoughts, worries and bodily symptoms. Followed by visualizations which made her feel good.

«It was not about stopping thoughts, but to STOP, and create good fellings.»

LP is partly based on NLP (neurolinguistic programming). I became a licensed Practioner of NLP in 2003.

SS; diplom NLP Bandler

 

How I recovered from chronic stress

Unlike Live Landmark, who was a journalist at the newspaper VG and well trained in critical thinking when she fell ill, I had been into holistic health and the power of the mind for 20 years when my body said stop in 2010.

My interest started when I was introduced to Autogenic Training in school in 1990/91.42 I became so fascinated by my ability to instruct the body into feeling warm, heavy and calm, I gave a lecture to class about it.

When I later came across Louise Hay’s book, You Can Heal Your Life, it truly influenced my view of life. The book, which sold in 50 million copies, claims that all illness is caused by our own thoughts and feelings. The healing lies in selfcare and selflove through mental techniques.43 It is pretty similar to LP, except for the stop-button.

RN-LL; ikke redd symptomene lenger (3)
“I’m not afraid of getting symptoms anymore. 6 months after the LP-course, life is great! I feel great!”

So when I got sick from stress, after prolonged overload both at work and in my private life, I didn’t get any disaster thoughts or fear of symptoms. I didn’t see myself as a victim either, but considered it a source of change and self-development. I knew I would be well again, and carried the key to healing myself.

 

 

After a few months of rest, I went to Aruba in the Caribbean and started my days doing yoga at the beach. Later I went to London to attend the “I Can Do It!” Conference with Louise Hay and several other well-known spiritual teachers. Before I continued to India to meditate for two months.

Gradually, I restored my health, recovered, and returned back to work after 7 months of absence. 5 years later I went to Bali, got Denguefever, and have been incapacitated ever since. I got ME.

SS; Quote 2010; Rajive (2)
October 2010: Quote Rajeev – my landlord/chef/ayurvedic doctor/handreader/healer in Rishikesh, India: “Life is easy. Life is difficult. It’s your choice. You are responsible!”

 

The difference between ME and stress

After being sick for 3 years, the social service recommended me to apply for permanent disability. My counselor stated: «You have tried just about every alternative treatment available, and nothing have made you any healthier.»

We both had realized that my motivation and dedication can’t control this disease. I remain ill, and also become much worse by any activities exceeding my limit of physical, mental and social exertion.

It was not like this in 2010. Back then the symptoms were related to stress and what triggered the burnout. Just thinking about duties, worries and other people’s expectations made me feel unwell, dissy and nauseous. While happy activities gave me more energy. I could rebuild my health!

With ME both the muscles, brain, heart, gut, nerve- and immune systems behave completely differently. I get lactate levels ​​of 3-4, which is the anaerobic threshold and corresponds to very hard exercise, just from surfing online.44 When my muscles collapse, I can’t walk for several days or weeks. I’ve also got a fantastic immune system! My last respiratory infection was more than 4 years ago – in contrast to at least twice a year when I was healthy.

The photos show lactate levels measured 21/9 – 20/10 2019, at different hours of the day, during the time I was writing this blog. I’ve been housebound 99% of the time. 

 

Publishing day 20 October 2019: Lactate level increased from 3,4 to 5,5 in 3 hours. Just by mental activity whilst sitting still. 

 

 

What do the scientists say?


Prof. Jarred Younger says «Fatigue is not a disease, but an alarm system.» He has detected neuroinflammation, elevated lactate and temperature in almost the entire brain of ME-patients.45 He recently received 2,9 million USD from the American Institute of Public Health (NIH) to continue the research.46

Jarred Younger; Fatigue is not a disease (2)

 

In 2017, NIH also granted 35 million USD to ME-research at 3 different centers in USA. The Norwegian Journalist Jørgen Jelstad recently published 3 blog posts summarizing the status of their research, as well as citing some of the researchers. 47

  • Prof. Ian W. Lipkin, The Center for Solutions for ME/CFS, Columbia University: «ME is a very serious disease. And much more money is needed for research. When scientists tell me they don’t believe the disease is real, I refute it. I disprove it with facts.»48
  • Prof. Maureen Hanson, Cornell Center for Enervating Neuro Immune Disease: «My theory is that there is one fundamental biological disorder behind the disease. Understanding the biological basis is crucial to developing treatments so that those now trapped in their beds and homes can return to active lives.»49

  • Immunologist Derya Unutmaz, The Jackson Laboratory: «When I look at the findings, something is terribly wrong with these people’s biology. I have been doing research on HIV for many years. These are the types of findings you would see in people with HIV-infection.»50

They focus on the immune system, microbiome (gut) and metabolism (energy).
Prof. Anthony Komaroff at Harvard University believes the immune system is chronically activated, mainly in the brain, and that the patients’ genes turn themselves on and off when they shouldn’t. He also thinks the cells don’t produce enough energy.51


Metabolism is being studied in Norway as well. In 2016 the ME Researchers Øystein Fluge, Olav Mella and Karl Johan Tronstad published a study showing that an important enzyme in the cells’ energy conversion is inhibited.52 

«I tend to compare it to a valve which is screwed back a little,» says Prof. Karl Johan Tronstad. «The tightened valve leads to two things. The cells’ energy production becomes less efficient and over the valve it overflows with lactic acid in the muscles.»53

Their theory is that the disease is triggered by an error in an immune response, mostly after an infection. The error causes the cells to change, and recent findings indicate the cells are affected by something in the blood.54


Katarina Lien, a Norwegian MD and ME Researcher, published a study in 2019 which shows ME-patients had higher lactic acid than healthy controls, both before a 15 min. bike test, during the exercise and the next day. While cycling reduced lactic acid in the healthy controls, it went the opposite way for the ME-patients. They got higher levels, performed- and felt worse the next day.55

«ME patients don’t tolerate to exercise!» Katarina Lien told NRK Radio this summer.54

What does the Norwegian health authories do?

Norwegian health authorities recommend exercise and cognitive therapy as treatment for ME. The Institute of Public Health also support controversial ME-science56 and the Lightning Process.

In the fall of 2018, they invited Live Landmark to give a lecture on the Lightning Process at the annual ME/CFS Research Conference. The year before, they said “no thank you” to  Prof. Ron Davis – who is one of the world’s leading Resarchers, Professor of Biochemistry & Genetics, Director of the Genome Techonology Center at Stanford University and the Chairman of the Advisory Board at Open Medicine Foundation.57

The ME association withdrew their participation at the conference, the patients protested and the media ignored us.58

LL; programmet er bekreftet; forskningskonf. 2018 (2)
“The program is confirmed and I’ll give my first lecture at a Research Conference for ME. #lightningprocess”

 

www.omf.ngoOMF; Ron Davis, the rest of the world will catch up soon

 

 

 

 

 

 

 

«The Norwegian health authorities give alternative therapists a quasi-professional legitimacy, without taking responsibility for the damage that occurs. They might as well invite religious healers or shamans, – who also have satisfied customers.» Nina E. Steinkopf recently wrote in the post; A Messiah in the Norwegian Health Care System?59

 

Can bridges be built?

I have now tried to shed a light on today’s harmful practise; people with a stress-related condition may be diagnosed with a multisystemic disease. While people who suffer from such a disease might be treated as if they have a stress-related condition. I have also shared my previous experience in overcoming chronic stress and IBS through a healthy diet and selfcare.

The intention is not to undermine anyone’s health problems, but to be a guide in the “ME-darkness.” This is my experience after living with ME/PVUS for more than 4 years:

  • ME/PVUS is NOT the same as neurasthenia, chronic stress, burnout or “similar illnesses.”
  • The stories of Live Landmark and the members of Recovery Norway are NOT representative of ME-patients.
  • Lightning Process, stress management and exercise are harmful treatments for ME-patients.
  • ME-patients CAN NOT be healed «if we want to.»
  • Biomedical research gives us real hope for a healthy future!

 

Vogt; ME må forstås psykologisk

LL; Stubhaug; hva er ME (2)
“Stubhaug says the same as me; it is not related to any spesific illness. It’s more about working on yourself and your struggles. And remember – what’s ME?

 

 

 

 

 

 

I hope the countdown of a dark time – where sick people are held accountable for their disease, and given personal characheristics they may not have as cause of their lack of recovery – has started. It’s hard enough to lose our lives to this illness. Fighting against harmful treatment,60 ignorant health authorities and misleading media coverage makes it even harder.

The time has come to empty the wine glasses, clean up the mess and tap the old wine into the right bottle. The party is over! Should we start a new one, with our separete wine bottles?

Warm Regards,
Sissel Sunde

Organizer of MillionsMissing Stavanger, Norway

Support documentation and links are collected here.

 

SS; vinflasker; ME vs nevrasteni

 

One thought on “SOS! The diagnostic party is out of control!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s