A recent article about how a teacher with long covid in Norway needs accomodation at work (and now works only 50%):
Deler av arbeidsdagen ligger lærer Marit Lehn (51) på en madrass på et grupperom
I couldn't get a google translate link for now, but I could get the translation using Chrome :)
The diet information in this study seems sketchy. Participants had previously been part of a study where stool samples were collected, and were now asked to recall what they ate 24 hours prior to that sample collection. When performing 24 hour recalls, just asking about yesterday can be...
Posts on the questionnaire for classifying the level of functioning pf pwME under development by Kristian Sommerfelt/Norwegian ME Association has been moved to a new thread:
Norway: Developing a new questionnaire for classifying the level of functioning in pwME/CFS, open for feedback
I've been telling my sister who tested positive last week to look out for any ME like symptoms, I wish we knew more about risk when someone in the family has it.
The article today at NRK about teaching kids to go to school despite feeling "poorly" is indeed going to be dreadful for kids with post viral (and other) illness :(
I guess it would be too much to ask that one actually checks if physical symptoms have disappeared rather than starting it will happen and then speculate why mental health is low. And as discussed on here previously, the tools used to measure mental health are often inadequate to use on people...
Agree. Many have commented on Facebook when their feedback has exceeded 300 words, and I saw @trudeschei was engaging. I haven't been on fb today but I can add a link here on the thread later.
A new thread has been made for discussing the published draft implementation statement:
Implementation statement in support of ME/CFS diagnosis and management, NICE, draft published for consultation
Dietitians do not just prescribe dietary interventions, but help assess if dietary needs are met, and that a person's intake of all nutrients are adequate. This is a problem in many illnesses with muscle weakness, fatigue, cognitive impairments etc. For gastroparesis there are dietary...
Some of us have also been ridiculed for using "big words" or for fabricating illness, and might have learned other ways to express ourselves in a manner acceptable to the adults we had to deal with, which might downplay some issues.
Now published. https://www.s4me.info/threads/assessing-functional-capacity-in-me-cfs-a-patient-informed-questionnaire-funcap-2024-sommerfelt-et-al.35464/page-3#post-538060
The discussion thread before the preprint was published and the preprint thread have been merged.
Discussion of the...
Standing/sitting still are big triggers for my OI too, although on bad days I also get dizzy right after standing up. I bought some spiky balance pads I stand on when cooking or doing other tasks around the apartment and it seems to make it easier.
I had a gradual onset (or as has been discussed here previously, maybe a very mild onset with detoriation following pushing past limits), but from other pwME my impression is that it is more common to get ill and then never recovering from that state.
An update from the team behind the comeback study on fecal transplantation is that they have ended recruitment of patients, and that in a year's time results from the participants will be unblinded and results looked at :)
This. I was discussing this somewhere else re covid rehab, that pwLC might simply be able to work out more at the rehab centre than at home since they didn't have to use energy on a lot of tasks such as shopping, cooking and cleaning etc.
Cool, I would love to have this done in my own relapse/remission cycles. With all other "omes" like the metabolome and proteome as well. I can dream :P. A problem to do this type of research is that the methylome will likely be different in different tissues.
I wish they had shared their data. In the abstract it says 20 and 21 metabolites, but in the results they had >60000 "peaks" and 1411 "qualified substances". Is it a language issue, and the 20-something are only the metabolites seen as different? If so I find that very low if the total number of...
But GRADE is being taught as a way to understand (bad) methodology us newcomers in the field. It has been mentioned in all methodology classes I've had related to health studies, and using "clear thinking" could potentially lead to a bad grade (pun not intended) for the student since you are not...
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