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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.

And at the same time Aftenposten and VG (and probably others) have another "got well after LP" article :(

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...

Breathe out toxins through the heart, I must admit that is a new one for me.

My dog was actually screened for this pretty early when he started collapsing for no reason (it wasn't MG). Thankfully we didn't have to waste time on deciding if he was fine all along. Telling the vet a flat coated retriever didn't want to go for walks or run around, and could just fall down...

You get this sort of reasoning with allergies and food intoleranse as well. "I don't ever have to deal with any fussy eaters when there are male construction workers as the table!" I was told after getting a long rant about women and academics and their fake problems. Those males that don't...

Wyller has used "fatigued after exercise" as a way to measure PEM previously, neither objective or actually measuring PEM.

It's not uncommon that "fish oil" is used interchangeably with "marine omega 3s", although the questionnaire can include other sources of marine omega 3s such as algae (or it will have an option for "vegan" which is problematic since there are still plant based omega 3 supplements that contain...