News from Scandinavia

Thank you @Kalliope for this info.
This is exactly the kind of approach th Educate ME project that AfME and parents are working on is trying to do. We are trying to develop a toolbox of info and links to initially target guidance and head of year teachers.
Here,bsadly, safeguarding is initiated more by schools/ education staff than medical ones .

 

Here is a trailer for the second film made for this project. The theme is how you can develop an educational plan.

It is in Norwegian, but here's what's being said:
After I got diagnosed with ME, everything seemed hopeless.
My parents were frustrated over the situation at school, and the school didn't quite know what to do for me.
I was met with a lot of distrust from people around me. Is she really sick?
All I wanted was for them to understand me and my needs. I missed to be at school and with my friends.
Fortunately things eventually started to happen. I got the school, the educational and psychological counselling service and the doctor to sit down together and talk about what could be suitable solutions for me.

https://www.youtube.com/watch?v=bGJKDVpkSv0

 

Letter to the editor from ME-patient and graduate engineer Benedikte Monrad-Krohn about Cochrane, ME and CBT/GET. She discusses and explains several weaknesses with the Cochrane review on ME and GET.
This is on a Norwegian news site about medicine.

Benedikte Monrad-Krohn: Besværlig Cochrane-rapport
google translation: Cumbersome Cochrane report

Cochrane has taken dubious methodological steps, and the scientific background for the ME / CFS treatment boards looks rather weak.

Edit to add: Thread about this letter to the editor
https://www.s4me.info/threads/cumbersome-cochrane-report-about-me-cfs-cochrane-review.5910/

 

Here is a trailer to the final information film made for this project. This one is about ME, school and friends.
This is what's being said:
Do you have a friend in your class with ME? In that case you might have noticed that something has changed in the friendship. Perhaps you are no longer spending much time together and you think it is difficult to stay in touch. The most important thing you can do now is being there for your friend. Your friend begins the day with less energy than you and your classmates. ME can be compared with climbing a high and very steep mountain. Every day. With flu.

https://www.youtube.com/watch?v=2oJQBjljvTM

 

Last month the Norwegian ME Association had a meeting with a member of Parliament from the Labour Party. Today she has followed up that meeting by formally asking the Minister of Labour and Social Affairs how ME patients can be better helped. It usually takes some time until answers are provided, but nice to see politicians getting involved for ME patients. Will be interesting to see how the Minister will answer.

Stortinget: Skriftlig spørsmål fra Lise Christoffersen til arbeids- og sosialministeren
google translate: Written question from Lise Christoffersen to the Minister of Labour and Social Affairs

There are currently no curative treatments for ME patients. They often fall between two stools and risk being left without income after work assessment has been completed and before disability pension is granted.
Will the minister review the current practice and propose necessary changes to the National Insurance Regulations, which can safeguard the special needs of this patient group (and others who suffer from with fatigue conditions) in a better way than today?

 

The Norwegian ME Association, Buskerud County, participated at the Stanford ME symposium and made this greeting to patients from Ron Davis.

 

The ME seminar in Oslo will be on the 27th of November, with David Tuller as one of the speakers. No idea how to add it to the calendar!

 

No tickets or programme available yet. So thought I'd wait a bit until adding the events (research conference and open seminar) to the calendar.

 

The Norwegian ME Association - Rogaland County - will host two lectures about ME by prof. Karl Johan Tronstad (scientist who has been working together with Fluge/Mella researching ME and cell metabolism) and prof. Kristian Sommerfelt (neurologist and paediatrician with over 20 years experience with ME).

The event will take place in Stavanger 21. November.
Tickets

Poster of event attached.

 

It would need to be a unique thread - https://www.s4me.info/threads/how-to-add-a-thread-to-the-calendar.536/

 

I figured. Didn't have the capacity to set it up

 

Politicians in Sweden are working for a ward for ME-patients in the county Västerbotten. For time being there is nothing offered to ME patients in the region.

Västerbottens-Kuriren: Ny mottagning för ME-sjuka

Not able to provide a google translation for this article, but here's a recap.

It says a report on ME/CFS was published in May stating there are few wards for ME patients in the country and none North of the capitol, Stockholm. The level of knowledge is low and there is a mistrust towards the diagnosis among some health care workers.

A ward could offer the patient group access to care and knowledge about the diagnosis as well as continuity and security with improved quality of life as a goal.

 

Good news @Kalliope . Hopefully the "NIH´s " ( Socialstyrelsens) standards for treatment of ME/CFS in Sweden, that will be published at the end of this year, will push the opening of more specialist clinics.

 

Let's do more than just hope, let's keep doing all we can to make sure it will be all biomed, not bps. Unfortunately the Cochrane reports are very highly regarded here in Sweden -- including the one on CBT/GET -- especially in the context of evidence based treatments etc.

 

Will the relevant authorities/people see the recent re-analysis of the ME Cochrane review? Can somebody make sure they do?
http://journals.sagepub.com/doi/full/10.1177/2055102918805187
Discussed here: https://www.s4me.info/threads/grade...rane-review-2018-health-psychology-vink.6097/

 

Really? There are a few doctors with a loud voice, but my impression is that more of mainstream doctors know a lot more about ME since media published lots of material on ME during last winter.

Thanks for the links. I´ll try to get the e-mail address to someone who is responsible in that group. @Obermann, do you have any ideas?

 

Yes, really I've read some early drafts from a couple of different ongoing projects (nothng from Socialstyrelsen, though), and I'm not feeling happy nor hopeful about it -- that's my personal opinion based on what I've read so far. Sadly, some very influential people are pushing hard for the bps stuff. I passionately hope the final results will end up reading very different than the drafts...

ETA: Also, the latest updates on 1177 and VISS have not been great, in my opinion. Hugely disappointing, to be honest. I remember you telling us about the positive changes you've noticed, Helen, but I'm sorry to say that I'm not seeing the same.

 

The Minister of Labour and Social Affairs answered yesterday. She doesn't see any reason to change the rules for now, but emphasise that rest can be part of treatment for ME patients.

Stortinget: Skriftlig spørsmål fra Lise Christoffersen til arbeids- og sosialministeren
google translate: Written question from Lise Christoffersen to the Minister of Labour and Social Affairs

 

@mango, sorry to hear that. I have no insight in what´s going on in the project regarding the work with the treatment rules, but I hear a lot of positive examples from ME-patients how they have been helped in a very good way lately. As an example I called my GP today as I have an acute issue. I´m homebound and I feared I would have to try to go there to get help but the nurse at the clinic said: as you have ME I´ll send you a home care team with a doctor during the day. I didn´t even ask for it. Similar happens to those I´m in contact with beside that people around now know what ME is like, and what consequences there could be. Maybe media in this part of the country have done a better job than elsewhere to inform people and we are just lucky.

 

That's fantastic, I'm very happy for you

At my end things are very very different... For example, I've had a toothache since January this year, and I keep being denied treatment because of ME. I've filed several complaints (with the help of an anti-discrimination bureau; I'm way too sick to be able to do it on my own), and I'm still waiting to hear back. 9 months is a really long time to have a toothache, especially when you can't use painkillers because of ME

Also, last summer when I was suddenly experiencing new severe heart related symptoms and called the emergency number (both 1177 and 112), they told me that it was impossible to get a home visit. I ended up having to text a friend who eventually managed to talk them into sending an ambulance; they checked my temperature and pulse, and then left. I was really sick for several weeks, and it took me many months to recover (to my severe ME "baseline").

I could give you many more similar examples and worse, both my own and several of my friends'.