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Happy for Jen and her recovery. Quite remarkable to read her letter and what she is able to do today. Have absolutely no idea what to make of it in regard of ME? More confusion, but it surely state the fact that there are so many different things labeled under the umbrella? Hope she stays...

When doctors practicing school medicine embrace and promotes LP, giving a da.. about documentation, not bothering the big risk of harming patients, one gets, let’s say, a little worried. What is next to come as a mismatched solution to almost everything? It wouldn’t surprise me if a couple of...

You could probably argue, especially if you don’t know anything about ME at all and/or have prejudiced attitudes, that the hypothesis was quite bold, but it is based on clinical observations and the studies done in a proper way. Fluge and Mella have been acting very cautious all along. Been...

Absolutely not addressed to you, but solely the BPS-brigade and everyone else making a mess of ME and deconditioning. They are surely missing the target by a thousand miles.

Deconditioning can be defined as the multiple, potentially reversible changes in body systems brought about by physical inactivity and disuse. ... Decline in muscle strength and muscle bulk is the most important and consistent feature of deconditioning. I think it is a valid conclusion that the...

Hear you.:emoji_thumbsup: I agree, except from the mild ones, I don’t know who they are longer, but been there many years ago. ME is, - like if I only knew now what I should have known from the start. It is a horrible insight, that you paradoxically wrecked prognosis due to staying positive...

I use a Fitbit and also a tracker on my phone. Two sources. I question the accuracy of both, but as long as I match data with myself, it is a valid and good source, at least for movement. As a start I think patients can give good subjective reports/testimonies/descriptions of disease...

Also read that good and interesting book. I found it particularly pedagogical and easy to read, but very convincing. A good start for anyone interested reading about sleep and science. It is of no surprise, but the importance of sleep on all kind of health issues are huge. For patients not...

Great work on what Whitney appropriately calls “totally body shutdown”, not the no-meaning —whatsoever “CFS.” Hope he improves and hope the report draws a lot of attention.

Puuh. That’s good to know. But what a puzzle. Hope we live to see the day where we actually can get some answers to the organisms systemic mess.

Nobody have stated that ME is a sleep disorder as someone here said. But that non-restorative sleep is a cardinal symptom should not be controversial or is it? I don’t think we can give general advice on sleeping, when knowing that’s what’s supposed to be natural sleep cycle is not working at...

Exactly. When reading this it struck me that it’s only general words of logic. But where are the things you mention? Where are the real advice that really can help patients? I also agree very much with a previous comment here, that preventing harm early on, preventing new severe patients are...

Just jumped into this fast developing interesting thread, so not up to date on comments, but see that sleep is an big issue, and rightly so. As I from personal and general experiences find it, the problem of non-restorative sleep is major. If that is part of a “defect” sleep-system or a result...

We knew the BPS-people (included Helland & co) would try to take advantage of a the failed Rituxme-study, that is of no surprise. But it is quite astonishing that they kind of isolate this, almost like there is nothing interesting going on in the rest of the world, no other significant clues...

Official records and statistics says a population of 4,8 million (2017) so somewhere between 10’ and 15’ seems about right if diagnosed CC/ICC.

Great heartening episode, Gary. I find it appropriate to quote Klopp (Liverpool manager) last night: - the guys are f...... mental giants. That could be said of the ones telling their story on the podcast and everyone facing and living with ME. It’s not a big issue, but wish there maybe was...

“Extreme tiredness”?

I find the few numbers of people who initially invested in this and got it rolling encouraging. But the snowball effect have been devastating. Don’t know how the situation actually is by May 2019? Progress is made, but the pseudoscience seems so incredibly deeply rooted. It is just bizarre how...

The confusion of criteria. White says he is a “splitter”, but still argue that one should use criteria that lump all together. The Canada criteria are useless to White, actually specifying don’t secure homogeneity, but the opposite. That is at best a questionable statement. White himself advice...

This guy is worth a study alone. Outrageously angry, bullying all over the place, never ever addressing real concerns, just pushing pseudoscience. What is the pathology behind all this, one wonder? I have empathy that he was so bad at managing his tinnitus, all the unhelpful beliefs and...