Campaign week from the Norwegian ME Association to increase knowledge

Kalliope

Kalliope

Senior Member (Voting Rights)
2018 Campaign week from the Norwegian ME Association to increase knowledge


The Norwegian ME Association is launching a week long campaign to raise awareness and knowledge about ME. It starts off tomorrow and ends Saturday.

It's the first time a campaign like this has been done in Norway, and if successful, the association will try to make it an annual event.

The campaign has its own hashtag #MEdKunnskapOmME (with knowledge about ME)

Here are some of the things that will happen in the upcoming week:

Monday:
A greeting from the chairman of the board
Video with prof. Kristian Sommerfelt (paediatrician and neurologist)

Tuesday:
Video with MD Katarina Lien (about to take a PhD on ME)
Article on the ME Association's website about living with ME
Open lectures in Oslo with David Tuller and ME-researchers prof. Karl Johan Tronstad and prof. Benedicte Lie

Wednesday:
Video with member of parliament Lise Christoffersen (Labour party)
Video with prof. Ola D. Saugstad

Thursday:
Video with ME patient and author Kristina Vedel Nielsen
Article on the ME Association's website on ME-patient's everyday life

Friday:
Video with Mette Schøyen, advisor for children and adolescents on behalf of the ME Association
Article on website: Adapted teaching for pupils with ME

Saturday:
Video with the founder of the Norwegian ME Association Ellen V. Piro
Video with journalist and author Jørgen Jelstad on ME research

Here's more from the general secretary of the Norwegian ME Association about the campaign:
Norges ME-forening: En uke med kunnskap
google translation: A week of knowledge
 
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The campaign is officially launched with this greeting from the chairman of the board of the Norwegian ME Association, Bjørn K. Getz Wold.

He talks about the situation for ME-patients, points to USA (IOM-report, research funding from NIH, OMF, no recommendation of CBT/GET) and suggests the national competence service for CFS/ME continue their work for patients with fatigue, but we need our own competence service working specifically with ME. Also talks a bit in general about research efforts in Norway, Fluge/Mella's research and the four research projects on ME which the Research Council of Norway funded.

Language: Norwegian, no subtitles
 
Kalliope said:
He talks about the situation for ME-patients, points to USA (IOM-report, research funding from NIH, OMF, no recommendation of CBT/GET) and suggests the national competence service for CFS/ME continue their work for patients with fatigue
Click to expand...

As far as I know, the national competence service offers treatments based on junk science (LP, CBT/GET). So he appears to be missing the point. What problem the patients have is irrelevant when the service is being run by incompetents. All patients deserve treatments that work and not elaborate placebos.
 
Video with prof. Kristian Sommerfelt, paediatric neurologist at Haukeland university hospital. He has over 20 years experience with ME and is a very popular lecturer on the disease.

In this video he talks about school and pupils with ME.

He says we need increased knowledge about ME in general and a change of attitude towards the disease.
It is a tough situation being a pupil with ME. It's important that the other pupils receive good information and it's important with updates from school about what's going on.
Even small adjustments can make it easier for pupils with ME to participate a bit more. A double set with books, transport to and from school etc. He recommends trying to come to school when possible, even if it's very seldom. In that way one can prevent a "hedge" growing up between the patient and the rest of the world, and should there come a time with some higher function, it will make it easier for the pupil to start participating more.

Language Norwegian. No subtitles.

 
Video with MD and doctoral candidate Katarina Lien.

She says the attitudes towards ME are changing, but there is still a long way to go.
She believes there is a great need for patients for a place to turn to and receive some kind of follow up. Many patients have told her they feel left to themselves. Katarina Lien is one of the researchers in the study RituxME. She says she could see how useful it was for patients just to have some regular follow up as participants in the trial. This is a wish she has for all ME patients, somewhere to turn to where people know the patients and the illness well.

Language Norwegian. No subtitles

 
Video with member of Parliament Lise Christoffersen (Labour Party).
She praises the Norwegian ME Association for their work and acknowledges that there is too little knowledge about ME in the health care system.

- There is little treatment, there is little research. This leads to ME patients risking to deteriorate when meeting the health care system instead of improving.

Language: Norwegian. No subtitles.

 
Film with professor and paediatrician Ola Didrik Saugstad from Oslo university hospital.

I am quite brain fogged now, so there might be mistakes/inaccuracies, but here is a quick translation of what's being said:

He says it seems health care personell often lacks in understanding ME. That the patients are a just bit tired, can lie down a bit and then get on with it, only a bit slower. But ME is far more than this. It is a systemic disease which probably affects several organs. What's some of the most difficult for him to meet, is the indescribable pain many have. Luckily it fluctuates, but it's difficult to treat. Many have great difficulties with sleep and cognitive issues. A brain fog that makes it hard to remember and function in a normal way. He believes there is a better understanding and attitude towards ME among health care personell, but a lot is still lacking. Almost on a daily basis he gets phone calls from someone about child welfare authorities, social security and so on. He is disappointed by the health care system, that so many refuse to familiarise themselves with the rather considerable biological literature showing that ME is a physiological disease.

Language Norwegian. No subtitles.

 
David Tuller and the chairman of the board of the Norwegian ME Association, Bjørn K. Getz Wold in meeting with MD Bjørn Guldvog, deputy director of the Norwegian Directorate of Health. Bjørn Guldvog is known among ME-patients for the following quote from 2011:
- "I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

 
Mette Schøyen is advisor for children and adolescents for the Norwegian ME Association.

She says it's important that everyone acknowledges what ME is. That it is a serious, multi systemic disease. This must be the basis for meeting children and adolescents with ME in order for them to understand the severity of the disease and thus do the right things, believe in their own experiences from their own bodies. Children who are told that what they experience isn't quite correct, is in the mind and that one can partly think oneself out of it, can cause feelings of blame and guilt. It may lead to loss of faith in health care.

The leading professional milieus must change their standing and communicate clearly what ME is.
It is also important for the families to have good information about ME and to be taught by doctors the severity and what to expect. This makes it easier to do the right things, not overdo things and perhaps stabilise the disease. Don't give promises about full recovery. Be sober.

Even very young children can get ME. Mette has met children who've been ill since they were 1 1/2 years old.

Some children are too ill to participate at school. Some can participate a bit. Being home tutored can leave strength for some contact with school and class mates. School can mean several things, even a teacher coming home for five minutes, just so you know you haven't been forgotten. This will make it easier to return if the health improves.
Don't panic. School can be catched up with.

Social life is important, but some are too ill. Internett can provide a fantastic tool to stay in touch.

 
Kristina Vedel Nielsen, ME patient since 2012 and author of a self help book about ME.

She talks a bit about ME and how important it is to acknowledge that this is a serious disease.
It's also important that health care personell understand and can help with the changes a disease like this can lead to in one's life.
That they believe the patients and tell them ME is a serious disease.

It's important to get an overview of the patient's activity levels. They might look healthy during 20 minutes at the doctor's office, but how is the situation over days, weeks, months?

She recommends using aids when possible and that health care personell encourages this.
It is also important to listen to carers/family members.


 
Sveinung Stensland is member of the Parliament and the spokesperson for issues concerning health for Høyre - the Conservative party.
He is a pharmacist by education.

He says he's getting more and more engaged in ME. There are many myths about the disease. He notice that the knowledge and attitudes are so-and-so among people in general and clinicians.

He shows a large folder he has received from a patient with reports from research. He wishes more who work with this on a daily basis, as doctors, would engage in that material.

He says there are some challenges in Norway with poor definitions for what ME actually is. There are too many who falls into this category. There is no line between seriously ill people and others who might have a classic fatigue condition.

There are also attitudes among some doctors who sets the tone, which leads to ME not being taken seriously.
He wants to continue working for ME in his own way. A challenge is that one can't decide politically what a disease is and how it should be treated. It's up to doctors to decide criteria for diagnosis, but politicians kan push for better service. This was a theme already in the election in 2013. It's been followed up, but the goal is not completed yet.

He is engaged in ME because it's a patient group that is not being taken serious. Some are taken serious and there are excellent doctors taking it seriously, but as a group there is a long way to go before they are acknowledged in all clinical milieus. There are some myths about the disease out among people which are incorrect. With optimal treatment many may improve, be able to take part of family life again. But we have to accommodate for this. He'd like to contribute with that together with the ME Association.

 
Video with Ellen V. Piro - who founded the Norwegian ME Association 30 years ago.

When she started the ME Association, ME was completely unknown.
Since then there's been a big change. ME patients have received apologies from the prime minister and from the Directorate of Health.

She thinks ME patients have behaved very well and come far. But sometimes one just wants to shake the health care system into place. Ask why they're not listening.

Let's hope there will be better understanding now. A lot is happening at the moment.
 
Video with author and journalist Jørgen Jelstad.

There's no doubt that ME has been a field of controversy. A lot of the problems is because very little research has been done.

If you looks at numbers from USA, you'll find that one year of research into MS is equivalent to 25 years of ME research. Compared with HIV/AIDS we're talking about a difference of many hundred years. This is the reason we still know too little about ME.

The solution lies in research. Both when it comes to recognition of the disease and finding treatments.

Several studies show that ME patients are among the patients groups with lowest functionality. They are among the sickest of the sick.
Despite this, there's been little research.

The good news is that a change is happening, particularly in USA, but we also see ripple effects in Norway. There are more research milieus entering the ME field. It's very important that we keep building up the research competence in Norway on ME.

He talks about the IOM-report and Francis Collins.

There are several top researchers getting involved, which is essential for progress. They get involved for a reason, because they believe this is a field where it's possible to make great discoveries and important findings.

But this is only a small beginning, and we have to continue building from this. It's important to keep talking about lack of research funds.

As things are changing and more knowledge comes, it's important that it gets spread to the health care service and the rest of the society, so that ME patients may get a better every day life. He thinks that's about to happen.

 
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