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I'm not sure if I want a comment from the clinicians/researchers from the CFS competence centre who recently was in the news saying most patients recover fully (no data of course, just "clinical experience"). But I hope Kielland is interviewed somewhere :)

According to a survey by the Norwegian ME Association, the median time from symptom onset to diagnosis in Norway is ~5 years, the mean time is ~8 years.

Also, something I don't think I saw mentioned when skimming through this: Some of us end up on student loans, which I think would make us disappear from this dataset. Edit: Thinking about this a bit harder, we likely show up in the 0/low income group, so visible on income but no longer someone...

I've been waiting on this study since I first heard Kielland mention it. Great that it is finally out! Before the current guidelines for diagnosis in Norway that I think came in 2014, diagnosis could not be done by the patients GP in primary services. After the new guidelines it could, and...

Countries that don't want to vaccinate children use facts such as "70-90% of children have already been infected" as reasons for not providing the vaccine to children in general. There is no need as most have immunity already. While simoultaneously arguing for recent infection not being a reason...

An MD student I met during an ethics course was upset that their lecture on fraudulent research and the impact on patients/society was not compulsory and that most of her class didn't turn up. I'm sure those stories are not important as obviously it's all in the past and researchers/MD's today...

Well one thing I think is happening (in general, not just ME/CFS) is that we are taught to look in the literature (fraught with errors) to find out how to write, and taught to write up our findings/make claims that shows our work has some sort of importance. Else how can it be used to support...

We shield as much as we can, ie. masking when indoors, reducing social gatherings, trying to move social gatherings outdoors... asking people to test and/or mask with various results. It's exhausting, but I don't want to lose the functionality that I have, and am worried that would be the result...

The Norwegian dietitian's association has provided support for providing nutritional support for pwME at least (in the hearing for our in-progress new guidelines for fatigue including CFS/ME) :thumbup:

Garner spoke to someone in Norway @hibiscuswahine (and I saw someone else mention Sweden as well in an earlier post). I just want to clarify that as said person is doing a PhD and quite likely have long covid patients in her study on the lightning process (they wanted "newly diagnosed" people...

The amount of people (also in health care) who use the terms interchangeably anyway is quite high. And a definition of «chronic» is «lasting for more than six months» with no mention of that it doesn’t end at some point.

Funnily enough not cited as much as "this treatment works!" studies that don't use such objective outcome measures.

New one from Norway, thread on it here: Aberrations in medically certified sick leave and primary healthcare consultations in Norway in 2023.... - R. White et al, 2024 Estimated costs for covid-19 and sequelae in 2023 was 1.5 billion USDs. Also mentions how the treatments for people who go on...

I haven't been following the thread, but I couldn't see this mentioned: If there was a reason for not providing a PEG/PEJ, why did Maeve not get parenteral nutrition? If she at some point was able to get ~700kcal orally, the rest could have been provided parentally if a NG/NJ or PEG/PEJ tube did...

While this might be true, a number of physician also thinks it foolish that obese patients can be classified as undernourished. Physician's finding something "foolish" could just as easily be caused by lack of knowledge and bad attitudes. Though I'm agreeing with the broader issue of claims...

Same.

I also prefer SEID, but yes, here we are.

The guidelines for deciding on a tube through the nose or a PEG/button in the stomach is only about how long one thinks the need for tube feeding will be present. If longer than 4-6 weeks a tube through the nose is seen as too irritating. Guidelines do however state people need to be seated and...

It is from the final paragraph of this document; https://www.fafo.no/zoo-publikasjoner/andre-fafo-utgivelser/tjenesten-og-meg-samlerapport The heading is "Funnene er tankevekkende" which translates to "Our findings are food for thought". A google translation: "Findings, both in qualitative and...

I just want to give a shout-out to Anne Kielland and the others in the Tjenesten and MEg project that wrote their findings supported what patients have been saying (about lack of help etc). It should have been done here as well.