Norway: Author and journalist Jørgen Jelstad

Jørgen Jelstad is a physiotherapist, author, journalist and speaker who for several years was a strong voice in the Norwegian ME debate.

In 2011 he published a book about ME, "De bortgjemte" (The hidden - and how ME/CFS became the most controversial disease of our time) which was an important document of the history of ME, the grave situation for ME patients and about research efforts. The book did very well in Norway and was recommended in the Parliament by Erna Solberg (who is now prime minister).

In the years after this publication, Jelstad wrote numerous excellent articles about ME in media and on his blog, De bortgjemte. He has also travelled around Norway giving lectures about ME and research.

In 2012 he held a speech at the Invest in ME pre conference dinner called Words matter.

He's a great communicator and very skilled in presenting complex research in a way that's easy to understand.

During the last few years, he has not participated as much as before in the ME field and has been occupied with other things. But now he is making a blog comeback and is also involved in a bigger project which there will be more information on soon.

I'm thrilled that he has started writing again about ME, and thought I'd start this thread as a place to share his articles.

He writes mainly in Norwegian, but with the help of google translation I hope his texts can reach a wider audience.

 

Blog post from Sept. 13th 2019
300 millioner kroner til forskningssentre for ME
google translation: 300 million NOK for ME research centres

In this article Jelstad writes about the ME research centres funded by NIH.

It is worth a small roar of joy, but the ceiling is not lifting yet. In medical research, NOK 300 million is not a massive amount. For instance, billions of NOK are allocated to HIV research every single year. But within the world of ME research, NOK 300 million is a big leap. Not least, it gives these research centres, all of which are elite research milieus, a calm to work properly for several years. They are secured some basic funding.

But perhaps equally important: This suggests that American health leaders are beginning to commit more to actually do something concrete. That they recognize the seriousness of the disease and the need for much more research. And that's a start.

 

Blog post from Sept. 18th 2019
ME-senter nr. 1: Virusjeger, immunekspert og sjarmen med tarmen
google translation: ME center #1: Virus hunter, immune expert and the gut

In this article Jelstad presents one of the research centres who where allocated with funds from NIH; The Center for Solutions for ME/CFS. He introduces prof. Ian Lipkin and the work the centre is doing.

On several occasions, Lipkin has stood up for ME patients with clear speech. He is also a researcher who sits closely on top management at the American Institute of Public Health, and he has previously told how he uses every opportunity to hammer the message.

“I'm doing everything I can to promote this. When scientists tell me that they don't believe this is a real disease, I refute it. I refute it with facts, "Lipkin said in a blog interview a few years back.

Such clear voices are needed in the ME field. In addition, when they also are top researchers who are listened to, it is crucial for further progress.

 

Excellent news! Welcome back, Jörgen

 

New blog post from today by Jørgen Jelstad. This time about prof. Maureen Hanson and her research into ME.

It contains a short introduction of the Cornell Center for Enervating NeuroImmune Disease (ENID) and their current three main projects, some good quotes from Hanson and what they've found so far.

ME-senter nr. 2: Betennelse i hjernen og "samtaler" mellom celler
google translation: ME Center #2: Inflammation of the brain and "conversations" between cells

 

New blog post from Jørgen Jelstad. This time about The Jackson Laboratory and Derya Unutmaz.

ME-senter nr. 3: Betennelser, T-celler og "pasienten har alltid rett"
google translation: ME Center # 3: Inflammation, T-Cells and "The Patient Is Always Right"

The new ME research center is headed by immunologist Derya Unutmaz. He is an expert on T cells, one of the most important cells in the immune system. And Unutmaz believes precisely the immune system is the key to solving the ME puzzle. They will delve into how the immune system of the ME-disease works, and whether any problems here may have some connection with the microbiome, organisms and bacteria in the gastrointestinal system. They will also investigate whether problems in these systems cause something to go wrong in the energy production in the cells of the ME sufferers.

Heard it before? Sure, these are exactly the same things the other two ME research centers are digging into. Of course, that is not a coincidence. It is about the fact that those who grant the research funding, and the researchers who apply, are in agreement that until now ME research indicates that there is something going wrong in the body of the patients. You can't research everything at once. That's why you invest the money on the tracks that are most promising based on what you know today.

 

Immune system issues would not surprise me.

 

New blog post from Jørgen Jelstad. This is an interview with him by a Snapchat group about ME called BliMEd.

De Bortgjemte: Et intervju om de sykeste ME-pasientene: Hvorfor aksepterer vi som samfunn at de knapt får hjelp?
google translation: An interview about the tickets ME patients: Why do we as a society accept that they hardly get help?

He talks about how he got involved with ME when his mother became severely ill with the disease. How he got in touch with other carers and patients and that everyone had experienced lack of help and knowledge, and often degrading meetings with those who should be helping. He then points towards the ongoing research particularly in USA and says that in the meantime the patients must receive all the help and support they need in order to have as good every day life as possible. We don't need to have all the solutions and answers for doing this. For the most severe patients it's about security and stability. Ability and will to adapt the offer to what the patient needs. Just as one does for all other patients with very severe illnesses.

These patients were so ill that they were completely depending on relatives to take the heavy and difficult battles with a system that often just wanted to get rid of them and avoid responsibility. And unfortunately this is still ongoing in big degree. It is absurd that so sick people and severely affected families are left more or less to frem for themselves with a shrug from the health care system. The attitude sometimes seems to be that these patients and families don't deserve any better. In many cases, it's unbelievable that families endure. They show tremendous strength every day just by being able to stay in it. Swallowing disappointments and resistance and dealing with daily challenges to make everyday life go up. And not least, make sure the ME-sick person is kept alive. The fact that they manage to keep the spark of life and humor at the same time is the rescue of many of these people - and not least incredibly impressive.

 

Jørgen Jelstad is making a book about ME together with author/actor/director Morten Borgersen and photographer Fin Serck-Hanssen. Morten Borgersen and Fin Serck-Hansen made a similar book a few years ago about living with HIV.

The book will have interviews with patients, carers and researchers.

They need 350 000 NOK (30 000 GBP, 38 000 USD, 35 000 EUR) in order to finish the project, and launched a crowdfunding yesterday which has reached 16% of its goal by now.

Blog post: Vi lager en intervju- og fotobok om ME
google translation: We're making an interview- and photo book about ME

 

The book is now published and in the shops!

Jørgen Jelstad has written a blog post about the book release:

De Bortgjemte: Nå er ME-boka "Våre liv, våre stemmer" ute
google translation: The ME book "Our lives, our voices" is now out

It received a great review in the newspaper Vårt Land yesterday by the author Freddy Fjellheim who is an ME sufferer himself. The review is available at Fjellheim's blog.

Freddy Fjellheim: Et godt avstemt protestkor
google translation: A well-tuned protest choir

 

New review of the book.

Quote:
If you have ME patients in your family, in your circle of friends or as a spouse or child, you are wise to read about the disease, stay up to date, familiarize yourself with research results, literature and more. Knowledge also provides security. The book "Our lives, our voices" is a very good introduction to this complex disease which can be read with advantage by those who want to know more about the disease's background and emergence.

Bokstaver.no Sykdommen ME - uforklarlig slitsom
google translation: The disease ME - inexplicably tiring