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Some medics. Medics get things muddled too, and use language in different ways, and as a patient you don't know what they mean unless you ask specifically (and they might not give an honest answer).

Today a cancer researcher is interviewed by a medical newspaper in Norway, and talk amongst other things about ME. Things that are mentioned are (not necessarily as causes of ME, but general discussion about increases in certain diagnoses in society): "chronic inflammation", "leaky blood-brain...

The point I’m making is that it is the same situation - doctors want to ignore people who come to their office talking about some allergy, diet or supplement the doctor has never heard of. And in nutrition it doesn’t matter if you can test for the problem, it also occurs when there are tests...

I’m not talking about a situation where patients stand up to doctors. I’m talking about how clinicians should not base their treatment of a group based on how said group is being represented in (social) media by others. People with food allergies, intolerances and celiac disease have a lot of...

I don't see this as a ME specific issue in medicine, but an issue with medicine as a field unable to cope with not having the answers. I definitiely put the responsibility at the feet of health care professionals and not patients. Yes, patient organisations should not put out misinformation, but...

Pregnancy can influence many of the things that are proposed to be part of the ME/CFS puzzle, like blood flow, in addition to hormones and the immune system. On the peaks - the ages also coincide with times in life where you might have less time to rest and have more activities in your life...

Another Norwegian study with age peaks were Tjenesten and MEg, but I don’t remember which part of the project it was mentioned.

On masks being scary: I wear masks around children, and none have acted scared. The same with a friend of mine (who wears it when picking up her own child from childcare, I don't do pick-ups at the moment). My son, wanting to do the same as we do, also points to masks and asks to wear one, he...

We have the uv torches from nukit, they are silent but have a slight «electrical» buzzing sound that at least to me is very tiring. I’m not sure how close I have to be to hear it, but when we use them we space them out so a unit is typically ~2m or more from me We have another unit from beacon...

I hope you find something that is worling for you!

I don’t know what’s available in your area, but both phillips and electrolux have units with sound <20 dB. We have an electrolux pure a9, and it is the most quiet I’ve found on paper at least. I can tolerate it on half of maximum speed unless I’m exhausted or in PEM. The lowest setting is 17db...

How large is your space? If possible you should aim for a CADR so that the air is cleaned at least 5-8 times an hour. Unfortunately many of the products do not have information on the sound level for their various fan settings. We have two large units (recommended for rooms 4x the size) in our...

These claims are almost the same as what is being said about long covid in Norwegian media today, by the usual BPS suspects.

I think the patient experience is a very important point. We learn to talk about our symptoms in different ways. And for us there is the additional issue of people being told wrong things from trusted sources such as healthcare providers.

Change in smell and taste is associated with poorer nutrition status and general well being. Which can influence scores on questionnaires.

ME-Fondet is part of the Norwegian ME Association, it was originally a one-of thing but has since been used for further campaigns. They have a short "About us" page on the ME Association's site: https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/innsamling-om-innsamlingen/ (in...

The cost of tourists in Northern Norway who get sick is not without its own discussions for poor municipalities though. This pwME from Northern Norway was sent in an ambulance plane: https://www.kp.no/me-rammede-kristine-ser-lys-i-tunellen-forlenger-oppholdet-pa-roysumtunet/s/25-168-7532 II...

Calculation of cost in health care is not always straight forward. Cost for having someone at home likely doesn't take into account that a carer might work fewer hours as a result of the care given not being good enough. And while a spot at a nursing home can cost as much as Røysumtunet, sending...

It might be some special reason for why some have been critical of how feeding have been handled, and maybe there has been changes in how they do it, I don't know.

I find these studies difficult. If someone pregnant feels fatigued, like they have cognitive issues, that they are more sensitive to stimuli I’d think it would take more for it to be recognized as long covid and not «just pregnancy, you will feel better when the kid is a bit older and you sleep...