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For those interested, guidelines used by dietitians (and others who want/need to understand nutritional needs of patients): Guidelines used in Europe can be found at ESPEN: https://www.espen.org/guidelines-home/espen-guidelines American guidelines at ASPEN: https://www.nutritioncare.org/ As...

Not being able to go to the shop is something that put patients in the "risk of malnutrition" category, as is being unable to prepare food. And it's also the level of risk and the length of time this risk is assumed to be present that is used to decide whether for example tube feeding should be...

There are already guidelines for when tube feeding should and shouldn't be used, and they are not specific for diagnoses. Rather they are in place to avoid that anyone is malnourished. For some diagnoses tube feeding can be contraindicated at various times if not all the time, but then we are...

A bit too tired to join in on the discussion, but: I want to point out that ME being treated worse than other illnesses re nutrition is not necessarily true. I don't think Norway stand out in a negative way when it comes to nutrition, but as previously mentioned: Nutrition screening is not...

Yes, this is the attitude from doctors (and also nurses and others) I was thinking of. Pre-ME diagnosis (ie. mid-to-late teens and had started to have ME symptoms) I struggled with nausea and low appetite and had a low enough energy intake to lose my period, by BMI measurements I would be...

I don't think this is an ME specific issue. Undernutrition is underecognized and often not screened for, and your general healthcare worker is not able to recognize it (yes, even people that don't look like skin and bones can suffer from undernutrition). It is seen in many patient groups, not...

For nutrition support, this is true for more than ME. We have few studies, and a lot of practice is instead based on "best evidence". For a dietitian, knowing a patient has an ME diagnosis could lead thoughts along the need for a careful start/maintenance of enteral and/or parenteral nutrition...

I'm not familiar with the UK system, but "psychosomatic/physical" attribution definitely plays into it if a patient get nutrition support with the reasoning that one does not want to "reward" the mistaken belief the patient can't eat. So instead look for reasons why a patient does not eat, or...

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...