Reply from current deputy chair(wo)man in NEM
Translation:
What is striking is how a researcher in FHI is lobbying a member of NEM directly during the decision process. This should occur through open communication. The characteristics of previous NEM decisions and "ME activism" is tendentious...
It doesn't say. Though I don't see the point in hacking or leaking when it would be available as a request of correspondence on the matter to NEM (if I remember our laws right).
SMS and email correspondence from Signe Flottorp to a member of the ethics committee has been posted on twitter. It seems to be from after the decision in NEM was made. It is after the decision by the regional committee but before the national ethics committee decision which makes more sense...
In my experience I can give the best explanation possible and get told they understand, but time and time again one has to collapse in front of someone for they to actually believe. :banghead:
Not ME but MS, I found the focus on disease mechanism quite nice...
Google translate: International researchers propose a new definition of the disease MS
Can only hope it gives FaFo/Sintef and the Tjenesten og MEg even more evidence of how anyone who speaks up for us are met.
That is has been published in "Kort sagt" ("short mention") hopefully also means fewer people will read the drivvel, at least online.
The Norwegian term was "uverifisert", which has the same meaning as in English. Something that has not been verified, in this case the stories on Recovery Norway's pages.
When I held lectures for newly diagnosed celiacs, part of it included talking about what happens when someone is exposed to gluten by accident. Some don't feel much, others get increased symptom burden for months... though I'm not sure about the "don't feel much" patients, I wonder if they have...
I think it is more likely they got money from the DAM foundation (previously "Extra Foundation", or "Stiftelsen DAM/Ekstra" in Norwegian, https://dam.no/). I've never heard of that other organisation and website you've found. Stiftelsen DAM gives out money for many different projects, and have...
This is an old thread, but I just read that this study is part of a phd and the disputas has been postponed due to illness by the candidate which explain why the study was published so long after it was carried out. The original timeframe was 2012-2015.
Some short info on this page, if one...
So now they want to use the word "unethical"? And point fingers at someone else for using big words for a preliminary study with no control group? :mad:
For clarification, this is a comment on the Morgenbladet interview with Kielland
I've only read some excerpts, but Flottorp is critical of the Tjenesten and MEg researchers for being to closely allied with the Norwegian ME Association and for discussing unpublished research.
The same Flottorp...
They really do work hard to find something to use to dismiss whenever something is written about pwME not from the BPS view about us.
I wonder what the Tjenesten and MEg researchers think about how their preliminary findings have been received..
Homecysteine is non specific. It increases when there is deficiency in either vitamin B12 or folate, but can also stay in the normal range if one is sufficient in only one of the nutrients (so that a sufficiency in folate could mask a B12 deficiency, or the other way around, if one only looks at...
I read the post about leaky gut and when the author went on to talk about culture-bound syndromes and apparently sees those as real compared to leaky gut and gluten sensitivity I'm not inclined to take the text written at the blog at face value. At least there is a heavy bias towards psych...
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