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Strong views put forward by this patient group around the management of their condition led NICE to delay and amend its planned publication of its updated guidelines for the diagnosis and management of CFS/ME in 2021 (NICE, 2021). Furthermore, pushback from the CFS/ME patient groups led to the...

My PEM already starts during exertion. Every week I do my grocery shopping 2 x 800 meters on my electric bike. Muscle aches already present while cycling. I only had one and a half minute of aerobic energy during CPET. When blood volume could be low: not enough oxygen could halt the Krebs cycle...

LC is spread by hashtag???:banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead: I'm seeing a neurologist this month, hopefully not a follower of O'Sullivan. It's real, but we treat it psychologically. Would that work on SFN? I had a letter that I...

Maybe showing your doctor your own post here is even better. This post says it all. Do you have laws to have something removed from your dossier? Please take good care of the parent of your children, YOU!!! I asked my GP to remove ME/CFS from the illness hystory in referral letters, he did...

25% have LC symptoms after Covid, doesn't that sound way too high? When I read the last sentence in reverse it makes more sense. Overall well-being is influenced by poor sleep quality and poor sleep quality can lead to poorer psychological health. When neuropsychiatric symptoms are the objective...

Slow as a Turtle in. answering. If getting a red flush would lead to PEM, I would be in deep trouble. It happens to me sevaral times a day, mostly when I use my computer. I recently measured my oxygen during a flush and it was below 95%, even as low as 92% once. My brain demanding more blood...

Vaccine companies as allies to get LC accepted, wonderful thought. Do you think it could turn around JFK and make him into a pro-vaccine LC advocate?

Thanks so much Professor Casanova for all the work you did despite adverse reactions. Most of us know how that feels. Your work could maybe save us one day.

I could read after getting ME/CFS, but after reading page one and starting on page 2, despite notes, page one was "gone". A few years back I tried again. Fifty shades of gey, part III. You're allowed to laugh. I needed a book with an easy plot, check. Not many names, check. Not a lot of factual...

33 years of experience with cognitive dysfunction in ME/CFS, my reserves have long been depleted. I have to look up the spelling of every other word and when I don't I make the weirdest typo's. (I was partially taught English in England) Higher educated means a car in stead of public...

The researchers in this 2020 paper are concerned about the false positives, I'm more worried about the false negatives. No POTS, no dOH and still a CBF drop, that can only be measured with TTT and Doppler. The researchers did not mention that. The Dutch researchers published in 2018, maybe...

A link with diabetes?

Department if Nutrition and Diatetics: brainfog has to be treated by some kind of diet. The MIND diet didn't work. They found no connection with sleep? Others do. I'm pretty sure my mood does not cause brainfog. Maybe in the Arousal-Calm Dimension, bad research, brainfog can worsen.

My first reaction to lactate in the brain was: Bad news. No medical knowledge, that shows. A quick search showed that lactate in the brain has many functions. Fuel and protection among them.. What caught my eye was; lactate as protection of the BBB. Question: Could a high fever disrupt the...

Had adverse childhood events not been retracted as an association in FM? Has someone ever seen information about previous treatment of adverse childhood events? Or is it scooped up everytime psychologists want to use again and again?

Many thanks for all the work you are doing. Moderator, highlighting, explaining, commenting and even giving a researcher a "nudge" in the right direction. Wow! Here you point out something really important. GET causing profound psyclological harm. It seems very strange to me that psychologists...

Males can have heart problems, females have a tranquilizer deficiency.

I might be more optimistic. Astronauts had ME/CFS symptoms, but the general public doesn't know that. The first time @SNT Gatchaman posted several treads on astronauts, I was new here and called for help. So much in common. Others already knew for a while. One of our astronauts André Kuipers, a...

When what astronauts experiece would have been called space-ME/CFS would they have been called malingerers and everyone pointing at their heads; must be psychological? Could astronauts help us with better press coverage if NASA adopted space-ME/CFS to describe their experiences.