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In the Norwegian ME Association report on severe pwME, they write this on nutrition care of the very severe:

Guidelines for when a PEG should be used instead of an NG tube varies between 2-6 weeks. With ME given that there are no guidelines making any approximation for how long the tube might be needed will be difficult. Even though the stomach doesn't have to knead liquids as much as whole foods, the...

I can walk at normal pace, but notice that I'm in PEM by having to slow down or need to support myself. It also feels like I use my core more to hold upright when in PEM, but I don't know if it just feels like that due to easier fatigueability or if it's actually happening.

I'm saying it might. There are few pwME in the study, and we don't really know how the "thorough clinical examination" placed people into the five different severity categories used. For the association between severity and FMD, they could have called the finding significant by using two...

But why? If endothelial dysfunction is related to PEM and/or intolerance to exertion, it could have become worse in milder patients due to exertion prior to the test, while more severe patients have lower levels at baseline and we wouldn't be able to tell. We don't know at which levels it is...

They used senseWear: "The patients were equipped with an electronic SenseWear armband in the home setting for five to seven days, in order to record baseline number of steps per 24 hours as a measure of level of physical activity" When severity was measured with a "thorough clinical...

If the endothelial dysfunction is influenced by activity levels, it could be influenced by how the patients got to the lab, how long they waited at the lab, what they did in days prior++. A "mild" patient could have exerted themselves more before testing, maybe took the bus or lightning rail to...

Some may be interested to know that the last author of this, Linn Getz, was the phd supervisor for the founder of Recovery Norway Henrik Vogt. I read about the study in the medical news outlet "Dagens Medisin" (Daily medicine) today (I have not read the whole study I linked to above). I found...

Full title: Perceptions of the medical relevance of patients` stories of painful and adverse life experiences: a focus group study among Norwegian General Practitioners Abstract: Purpose Adverse life experiences increase the risk of health problems. Little is known about General Practitioners’...

Also mentioned in last years thread when it was published: Long Covid in the media and social media 2022

This has become a larger article at NRK, now with a nice quote from Remi saying he has chosen to be open part due to his public figure so he can help show others how damaging low covid can be :) Flottorp makes an appearance midway through recommending GET, but this is directly followed by Remi...

One of the top politicians in Nordnorge county in Norway is stepping back due to long covid: https://www.nrk.no/nordland/fylkesradsleder-i-nordland-gar-av-1.16273778 (In Norwegian) I'm impressed they mentioned why he is stepping down (but have been told by someone I know who live in the same...

Very important points. And something I'm happy we focused a lot on in my clinical dietitian courses :)

Ugh. Yes, there are instances where tube feeding might be negative (ex. kids who are exclusively tube fed might not learn/forget how to eat), but if a patient is not eating they need help. And it's not something that can wait indefinitely while the patient "realize they are not getting what they...

I was diagnosed in 2017, but I was not in contact with specialist healthcare services due to ME then, as already by 2017 was that primary care should do the diagnosis. I don't remember when the rules changed (this is an issue because some pwME will get told by NAV/disability and welfare that...

Subtitle: "A register study" Abstract (translated by me): Chronic fatigue syndrome/myalgic encephalopathy (ME/CFS) is a complex and chronic illness that is associated with a considerable reduction in quality of life for patients. In this study we estimate the incidence rate of ME/CFS in the...

The conclusion in the thesis is that change in pain levels is the largest contributing factor to patients reporting improved general health one year after CBT. The association between pain and general health was apparently only visible for those that had "short CBT", which is a flavor of CBT...

The whole thesis can be found here: https://ntnuopen.ntnu.no/ntnu-xmlui/handle/11250/2776122 English translation of the abstract: Many patients with CFS/ME have trouble with chronic pain. Still Nijs et al (2012) found that clinicians often ignore the patients' pain symptoms, even if pain is one...

A master thesis on ME from 2021 at NTNU, I think the patients are from Copernio rehab centre: Translation of the text in the image (reformatted by me): The patients are separated into four subgroups, based on a screening of individual needs and goals. These subgroups are as follows: Avoidant...

Copied post A master thesis on ME from 2021 at NTNU, I think the patients are from Coperio rehab centre: Translation of the text in the image (reformatted by me): The patients are separated into four subgroups, based on a screening of individual needs and goals. These subgroups are as...