Norway - CFS/ME Research Conference Nov. 25th-26th 2019

The Norwegian Institute of Public Health, the Norwegian ME Association and Oslo University Hospital are organising a research conference about CFS/ME in Oslo 25th-26th November.

Program

• Dr. Joseph J. Breen, National Institute of Health, USA: NIH Intramural Study on ME/CFS
• Dr. Carmen Scheibenbogen, Berlin University, Germany: CFS - evidence for autoimmunity
• Dr. Jesus Castro-Marrero, Cornell University, USA: Update on treatments in ME/CFS: new perspectives and future directions

Presentations and status report from the 4 studies financed by the Research Council's of Norway's project BehovME which included user involvement in the allocation process.

• Dr. Benedicte Lie - University in Oslo
• Dr. Karl Johan Tronstad - University in Bergen
• Anne Kielland - FAFO
• Linn Skjevling - UNN

There will also be a presentation of accomplished studies/project ideas based on submitted abstracts.

In addition the Norwegian ME Association is organising an open conference at Oslo University Hospital during the afternoon on Tuesday Nov. 26th.

More information and tickets:
https://www.deltager.no/participant...21&hash=DC7F7759C518A1677ADF03E105552070#init

 

Compared to last year this looks great.

 

Yes it does, @andypants

Here's last year's program. For those who don't remember, the Lightning Process coach Live Landmark got invited as speaker, so the Norwegian ME Association had no choice but to withdraw as co organiser.
https://www.fhi.no/globalassets/dok...ogram---cfs_me-forskningskonferansen-2018.pdf

 

Interesting that NIPH is involved. They're not pushing for anything on the revised bad exercise review or other BPS stuff? Is Atle Freitheim involved?

 

I thought that was interesting too, but don't know any details from the planning of this conference.

The contact person from NIPH is Centre Director Per Magnus. He's been keen for several years on doing a study on Lightning Process as ME treatment but has also kept a dialogue with the Norwegian ME Association.
https://www.fhi.no/en/more/research-centres/Centre-for-fertility-and-health/employees/per-magnus/

In 2016 he co wrote this article with among others Lightning Process coach Live Landmark for the Journal for the Norwegian Medical Association
Chronic Fatigue Syndrome and experience with the Lightning Process

 

Program for the open conference in Oslo Nov. 26 from 15.00 - 18.00
Main theme is PEM.

• PEM from the patient's perspective - Kristina Vedel Nielsen
• NIH Research Program on ME/CFS - Joseph J. Breen PhD, Immunoregulation Section Chief, National Institutes of Health
• Results on repeating ergospirometry in CFS/ME - Katarina Lien, MD and research fellow, Oslo university
• Living with ME and living with our PEM: Strategies to reduce PEM symptoms and improve function - Betsy Keller, PhD, professor, Exercise and Athletic Training, Ithaca College, New York

Panel debate and questions

Joseph J. Breen and Betsy Keller will give their lectures in English. I believe the conference will be streamed, and will get back with more information once it's available.

Tickets:
https://www.deltager.no/participant...95&hash=375A05E63E195C66D64BFA5A9BD98FBB#init

 

Journalist Jørgen Jelstad was present yesterday at the first day of the conference. In this Facebook post he says Joseph J. Breen's (NIH) talk was exciting, a lot is happening and they are well underway in the largest dive ever happened into ME patient's biology. Jelstad will be returning with a blog post about the talk.

 

Author and journalist Jørgen Jelstad was present at the research conference. He's written an article about Joseph Breen's lecture and also had a short interview with him.

It's about how the IOM report gave pressure to do something, the NIH in house trial and research projects NIH is supporting.

Jørgen Jelstad: Han er med å lede verdens viktigste forskningsinnsats på ME-feltet: Pasientene som stiller opp er heroiske, sier han
Google translation: He's leading the world's most important research efforts in the ME field. The patients who volunteer are heroic, he says

 

Breen said there's been a decline in research grants lately. During the Q&A-session he emphasised that researchers from all over the world are welcome to submit applications for grants in order to do research into ME. If the quality of the application is high enough, and they consider the project important enough, they'll support it.

 

Facebook won't let me link to the Google translation, so I'm going to post this here so I can link to it

https://translate.googleusercontent...700283&usg=ALkJrhiYVW5sDgErUBbCwkn2FSl10f7Aiw
November 29, 2019 · 5:47 pm
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He is leading the world's most important research efforts in the ME field: The patients who line up are heroic, he says.

Joseph Breen in Oslo. Photo: Jørgen Jelstad.
Joseph Breen was in Norway to tell us about the most profound ME study ever. Patients are admitted for two full weeks to have all tests and tests done.

The glacier gently strolled to the podium in the auditorium at the Public Health Institute this wet autumn day. The gentle appearance nevertheless hid a powerful message from one of the heads of departments at the National Institutes of Health (NIH) in the United States, the world's most important research institution.

- Things changed in 2015. Then Francis Collins decided that this really needed more attention. And there was pressure to do something, Breen said.

Crucial report
2015 is the year when the renowned Institute of Medicine released the most important ME report of the time in the US after a complete review of research in the field. And Francis Collins is the top manager of the NIH, and thus one of the most powerful people in the medical world. He has, according to the decisive report, several times engaged in getting more effort in the ME field, and much has happened.

So Joseph Breen, who heads the Immunoregulation Section at NIH, stood in the auditorium in Oslo to tell how things are going. Fortunately, there was a lot of good he had to report, and a few things that were somewhat less good. Let's take a closer look at what he told the congregation.


Breen presented what the US health authorities are doing in the ME field at the moment. Photo: Jørgen Jelstad.
Intense deep dive into ME biology
One of the most exciting is the extremely profound study they have initiated within the NIH itself. Here, some of the world's foremost scientists are working with the very best of technology, and not all diseases are prevalent in getting this type of study underway.

The number of patients in the study is not that great, but the examinations they do are unusually thorough and sophisticated. They should have 40 ME patients, 40 healthy controls and 20 with post-Lyme disease without fatigue. All ME patients have triggered ME after an infection. They have this requirement to try to get as homogeneous a group of patients as possible, so that they have a greater chance of finding something.

- The patients come to NIH and are there for two weeks. It is a very comprehensive visit. It's pretty intense, to say the least, Breen said.

Metabolic chamber
Then he showed a summary of much of what is being done in the study:


Some of the research that is done is demanding, expensive and depends on sophisticated technology - so there are not so many places in the world to do this kind of study.

Some of the patients will spend an extended period of time in a metabolic chamber, an advanced room where researchers can investigate a number of things related to how the body uses energy - a central theme in ME research.

As far as I understand, there are only a few such metabolic chambers in the world. In other words, it is not easily accessible to researchers. And for ME scientists, it must be a dream.

Does the immune system cause trouble in the brain?
And what is the starting point for NIH researchers? Their overall hypothesis is that post-infectious ME is triggered by a viral disease that causes the immune system to create a brain dysfunction.

The arduous process of selecting patients and conducting examinations repeatedly (patients going into two rounds), makes the study take time. They have now had 26 ME patients in the first two weeks of examinations, while six of them have also completed the second round.

" The researchers say they're on track to get everyone into the study next year," Breen said.


We are funding a new interview and photo book about ME. Check it out here!
- Good faith that they will find something
I broke off a brief chat with Breen during the break, and he was careful to say too much, as there is still early phase in the study.

" But I think if you talk to the researchers working on the study, they will have good faith that they will find something," Breen said.

Then he pointed out that the ME patients participating are making a heroic effort that has impressed him.

- Everything they go through in the research service during those days at NIH. They barely have breaks , Breen said.

" And when you know what kind of illness they have, where they strictly cannot withstand stress at all," I said.

- Exactly! said Breen.

Got new researchers engaged in ME
In the lecture, Breen said that their work to try to accelerate ME research started in earnest in 2016.

" The quickest way to give more support was to donate more money to those ME researchers who already had studies going with funding from us," Breen said.

In addition, they managed to get some experts involved who have not previously been involved in ME research.

" Among them, Mark Davis, a world-leading immunologist," Breen said.

Then they started a plan to get three ME research centers up and running in no time. Three leading research institutions have received around NOK 300 million over five years as a start.

" We had to start more collaboration and a larger group of patients to research," he said.


Photo: Jørgen Jelstad.
Deviations in T-cells and the body's power production
He says all the research centers will publish the first results in a fairly short time.

" The researchers are finding discrepancies in the patients, and they're starting to report them," Breen said.

Ian Lipkin's group at Columbia University should have found a disorder in a body's metabolic process in some patients.

- It's something new, and it was an unexpected finding. They are printing that study now, Breen said.

• Here you can read more about what Lipkin's research team is working on: Virus hunters, immune experts and the gut.

Derya Unutmaz group at Jackson Laboratory found abnormalities in specific subgroups of T cells (a type of immune cell) in ME patients. There is also the study for evaluation in a scientific journal, which in experience takes some time.

• Here you can read more about what the Unutmaz research group is working on: Inflammation, T-cells and "the patient is always right" .

Maureen Hanson's group at Cornell University has found disorders in the metabolism of T cells and has investigated a relationship between this and cytokines (signaling molecules in the immune system).

" So several independent groups have now reported abnormalities in T cells in ME patients," Breen said.

• Here you can read more about what Hanson's research team is working on: Brain inflammation and "conversations" between cells.

Collaboration between top researchers
When I spoke briefly with Breen during the break, he told me that the ME research centers are speeding up their collaboration between them as well.

- It was a little heavy at first, because none of them knew each other before. But we have earmarked money they have to spend on collaboration, so it helps, he said with a smile.

He pointed out, among other things, how good it is that a world-leading scientist like Lipkin now collaborates with Unutmaz, whom he characterized as a "fantastic immunologist and T-cell expert".

- And what Maureen Hanson does at her institute, nobody else is doing anything. It's wonderfully exciting, Breen said.

In the lecture he pointed out that a strong investment in ME research has also been initiated in Canada.

" And we work with them to get synergy effects from this," Breen said.

More researchers and reduce stigma
He also mentioned that just over a year ago, NIH initiated a one-year process of gathering input from a diverse group of researchers, doctors, patients and patient organizations.

- They should provide input into what gaps NIH can help close. We received that report in September, Breen said.

Their recommendations were:

• put in place a strategic plan for the research.
• get an internal group within NIH to promote cross-border collaboration.
• take steps to encourage more researchers to seek funding for ME research.
• Get more researchers into the field and reduce the stigma associated with the disease.

They are now working on this to follow up.

A fall in appropriations last year
Then it remains to be seen whether all this bears the fruits one can hope for. Because there are still some bumps in the road, something he also mentioned.

He showed the following graph of research grants to ME since 2015.


After a strong growth for a couple of years, from just over six million dollars to over 14, the last year has seen a slight decline.

- It worries me a little. That suggests we are losing some momentum, Breen said.

In addition, he showed a graph that made it clear that the number of researchers involved in ME projects is still far too low.

" We need to get more in," Breen said.

We just have to hope he succeeds. But all in all, a very exciting update from the place in the world where there has really been great progress in recent years. Now it is time to reap parts of what you have sown soon.

At any rate, I'm waiting for the results of the research to start coming out soon.

Right now people are funding a new interview and photo book about ME.
Here you will meet ME-sick, relatives and leading ME-researchers in search of answers. Check out our splice then: https://spleis.no/me-bok


We are funding a new interview and photo book about ME. Check it out here!

 

To facilitate sharing:
https://twitter.com/user/status/1200530533484318721

 

Breen means “the glacier” in Norwegian for anyone confused by the first sentence

 

Nope. I was imagining an actual glacier giving a talk and you can't make me think otherwise lalala.

 

I just assumed it was his wrestling nickname, Joseph "The Glacier" Breen....

 

@Kalliope Thank you for posting this. Great to hear about both the conference and the research project on health care services.

Will these talks and the open session be online at some point?

 

I believe the talks from the open conference was filmed and will be uploaded soon. It includes talks from Joseph Breen and Betsy Keller.

 

Excellent. Thanks.

 

Betsy Keller's talk: Living with ME, Strategies to reduce PEM and improve function. Slides of talk here.

https://www.youtube.com/watch?v=kyVPonB6p28

 

Thanks for posting, @Kalliope

 

You're welcome. I'm curious on what forum members think of the talk. Some of the recommendations she gives are based on anecdotes.