Norway: ME Forening (ME Association)

Kalliope

Kalliope

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


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Guest blogger for Norwegian ME Association: "Opted Out"

The Norwegian ME Association offers its website for patients and others who wish to share their ME-related story in a blogpost. The authors can choose to be anonymous if they wish.

Today came a truly heartbreaking story about a severe ME-patient fighting to get some help. But even in an area where there actually is an ambulant ME-team, the patient did not receive the help which was obviously needed.

After a long time without medical care, the patient managed to get to a private doctor and was diagnosed with another disease as well; cancer.

- With a blood test, I am upgraded from paria to VIP patient. I get all the medical attention I can wish for. The municipality lists services I can get - none of them adapted to serious ME. The outside world is sympathetic. As if it is now I'm afraid and not two years ago.As if it's only now I need help. As if this is the beginning of the match and not the end.

Gjesteblogg: Bortvalgt
Google translation Guest blog: Opted out
 
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It's good to see this written down in a way that doesn't trivialise cancer as I find it hard to get across how I feel about the difference in how the two illnesses are treated. It's not just in the medical profession either. I have come across this attitude at school.

When my daughter stopped going to school, we offered to speak at an assembly about ME so her school friends could understand what was wrong with her. The school ignored our offers, as in they didn't even respond to say no. We've had no support from the school in 2 years, just threats to involve children's services. Fast forward 18 months and a young lad in her year gets cancer. They held an assembly to explain to the students what was wrong with him. His mum says they've been nothing but supportive towards them. Parents react to the mum's posts on Facebook with (quite rightly) empathy, horror and donations on her fundraising page are off the scale. No prizes for guessing the responses to my similar posts.

We have a meeting at the school after the holidays and one of the questions I want to ask them is why the difference in support and attitude? We've shown Unrest in the school and not a single member of staff came to watch it, including the head. What more can we do so that parents like us don't feel like they've made us feel?
 
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Two allocations from The Norwegian ME Association to research

The Norwegian ME Association celebrates 12th of May by allocating funds for two research projects into ME.

The research group for ME/CFS at the cancer ward at Haukeland university hospital (prof. Olav Mella and MD Øystein Fluge) and the institute of Biomedicine at Bergen university (prof. Karl J. Tronstad) receive 250 000 NOK (31 000 USD, 23 000 GBP, 26 000 Euro) for a study on analysis on material from their biobank in order to look for possible biomarkers and to strengthen the foundation for a clinical study - a randomised, double blind, placebo controlled study on cyclophosphamide versus placebo.

Child neurologist professor Kristian Sommerfelt will receive 50 000 NOK (6 000 USD, 4 600 GBP, 5 000 Euro) for a prospective study on course and longterm prognosis for children and adolescents with ME.

Announcement from the ME Association: Tildeling av forskningsmidler fra ME-forskning 12. mai 2018
Google translation: Allocation of research funds from ME-research 12th May 2018
 
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The money for Haukeland (Fluge) will be used for:
They have applied for a study for two main purposes: Extended analysis of metabolites and signal substances in the ME / CFS biobank patient samples that are established in Bergen with the aim of discovering new mechanistic contexts as well as looking for potential biomarkers and strengthening the basis for a clinical intervention study, where they wish to conduct a randomized, double-blind and placebo-controlled study with cyclophosphamide versus placebo.
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And Sommerfeldt:
The study will describe the course and the prognosis with regard to symptoms and function in children / adolescents under 15 years of age from the ME / CFS diagnosis is given and five years in advance. The project will also describe how schools facilitate teaching and how the principals and first-line services follow up these children / young people and their families. The project will contribute blood samples to biobank at the time of diagnosis at the start of the project to contribute to research directed at biomarkers at ME / CFS.
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This is certainly good news. I am glad some attention is being given to adolescents with this illness too (I was 15 when I first became ill).

But just one question, how exactly do you do a placebo controlled study of cyclophosphamide? Does the placebo also cause nausea etc? Otherwise it's obvious what you are taking...
 
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The Norwegian ME Association withdraws tonight as co-organisers of research conference

The Norwegian ME Association has been working on organising a two day research conference next week in collaboration with the National Competence service for CFS/ME and the Norwegian Institute of Public Health.

Suddenly during last weekend LP coach Live Landmark appeared on the final programme. The Norwegian ME Association requested a removal of this talk. The request got dismissed by the other organisers, and therefore the ME Association has decided to withdraw themselves as co-organiser.

There was a research conference also last year with the same three organisers. The ME Association asked to include a talk about the PACE-trial, but was dismissed. Instead they decided to agree upon basing the conference on consensus and to avoid the most controversial subjects. It appears this agreement doesn't any longer stand.

The Norwegian ME Association has tonight written a statement explaining why they've taken this action.

The Norwegian ME Association: ME-foreningen trekker seg som medarrangør for CFS/ME konferansen 2018

I wasn't able to google translate the whole page, but here are some google translated extracts from the statement:

The draft to the conference program includes a post titled: "A Systematic Review of the Evidence Base for the Lightning Process". This is identical to a systematic review reported by Phil Parker, the founder of Lightening Process (LP), to the British National Institute of Health Research
https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=104336

LP is a commercial treatment, created and trademark protected by Phil Parker. It violates basic scientific and ethical principles of independence that commercial actors themselves should carry out such systematic reviews of the effects of their own treatments. This in itself is sufficient reason to reject this type of post at a research conference.

......
Norway's ME association welcomes an open and critical debate on the effects of various treatments, but we oppose that a research conference should be used as an arena to market and legitimize commercial and partly harmful alternative treatments.

The board of the Norwegian ME Association has requested that the post be removed from the program. This has not been met, and Norway's ME association therefore retires as the organizer of the conference


Edited for clarity
 
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The research conference will take place Nov. 26th-27th
As far as I know it was the ME Association's initiative to organise the research conference last year together with the National Competence service for CFS/ME and the Norwegian Institute of Public Health. Afterwards they decided to repeat it this year.

I am so disappointed by the other organisers for putting LP on the programme, and frankly a bit embarrassed on their behalf.

There's been a petition against the National Competence Service for CFS/ME and their biopsychosocial approach to ME. The petition demands the removal of the people at the Competence Service and has reached over 5 600 signatures. I thought this strong message would make some impression on them, but obviously not..

The last day of the conference ends with some open lectures by two ME researchers and David Tuller.
This is organised by the ME Association only, and I assume will go ahead as planned.
 
Maybe you could provide the original Norwegian and we can translate at this end? because I'm still getting an error when I click through.

404 - File or directory not found.
The resource you are looking for might have been removed, had its name changed, or is temporarily unavailable.
 
Good on them for taking action :thumbup:

Will have to process a bit, what I think of the FHI and the NKT..... But just HOW...??! How can they think a discussion on PACE is to controversial to include in an actual research conference - but see no problem with including a "review" of a VERY controversial ALTERNATIVE treatment - done by the person that developed the program and OWNS it......???

I'm flabbergasted.

The FHI is supposed to be the gate keepers of good science and knowledge in general. The NKT patients have mostly given up on, but that the FHI don't intervene.....? :( Also - The FHI (The Norwegian Institute of Public Health) are where both Larun/ Brurberg and Cochrane Norway is situated, to give some context to the exercise review. They now also publicy support and front LP, and an obviosly very biased review.... :(



@Kalliope - I'm also having trouble with google translate there days? But have found that Bing translate will often translate the pages google don't load :)

http://www.microsofttranslator.com/...m-medarrangor-for-forskningskonferansen-2018/
 
This is what Vegard Bruun Wyller said about LP when the SMILE study came out, in a medical journal (Dagens Medisin = Todays Medicine)

-Cognitive Therapy has already a well-documented effect of CFS/ME. We have a variety of patient stories indicating that the LP was supposed to work, so that it is confirmed in a study is not surprising. Also fits well with the result findings within neuroscience and stress research, is in line with the known models of the underlying disease mechanisms at the CFS/ME, says Wyller.
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-This should be incorporated as a treatment in the public health care system?

-In the study got all the patients a personalized rehabilitation program. The corresponding rehabilitation should be offered to all patients in Norway as well. In addition, many benefit from cognitive therapy. LP is a variant of cognitive therapy, and gives us more tools in the Toolbox. But we don't know if this is suitable for everyone.
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https://www.dagensmedisin.no/artikler/2017/09/21/-ikke-overraskende/

https://www.microsofttranslator.com...in.no/artikler/2017/09/21/-ikke-overraskende/

Our "BPS-crowd" isn't really about re-learning that symptoms are normal bodily sensations - aka anxity about health and unhelpful illness belifes of the Wessley school. But more into Wyllers theory about a hung up stress-respons, and re-training the brain itself into normal functioning. LP fits like a glove into his thinking.

Wyller and Landmark have had a huge impact on how health professionals view ME over here. For years they were the main "ME experts", giving their opinion on anything ME in public. And also made talks for health professionals etc.

So many health professionals don't think of LP as an alternative treatment, but a more pointed and effective version of cbt - able to actually change patients brains into normal functioning. This is the backdrop as to why the FHI and the KT loose all their scientific rigor when it comes to LP, Phil Parker etc - it is viewed as a very exiting, real possibility to treat patients. Belive it or not.

Trying to change that story have been hard, impossible. Because Landmark is very good with media, and twisting things around etc.
 
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