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I just cant stop laughing:joy:, thinking of what was given as a kind of gift at the end of the LP course. The instructor called the thing a anchor, a thing we could place at a appropriate place, and something that should always remind us of LP, of the the method. It was certainly not...

At the moment just skimmed through the report. Looks like great thorough work. And yes, the validity of such report will surely be questioned by many health professionals. So be it. This should spur discussion, and one cannot argue that the situation is acceptable, quite the contrary. There are...

Agree. Many important points. I guess many of us are familiar with the statements on low numbers of recovery among adults and the better prognosis for young patients, the numbers of Bell and guess I’ve also read something on this from L Jason. Would be be nice to see a study first defining...

This Flottorp is pretty scary. I don’t know what these people bring to the table except the same old rhetorics? They are obsessed with not making distinctions physical vs. mental, and that’s about it. Knowing the development of medicine, new insights to interaction among bodily systems and...

Read the edition published April 2019, all together 117 pages. The text itself is approx 60-70 pages. In addition some pictures (10-15), sources, some recommendations and epilogue. Reading is a challenge, but at least this is an “easy” read. First an introduction to her job as a doctor, the...

I agree with the view of the blogger and patient, but not sure how big of a problem this actually is? My opinion is that the climate for (constructive) criticism in all directions overall are quite good, also among “the good guys”. Could be wrong. In Norway there are no clinics, so that kind of...

This is such a delicate matter. Agree that explaining that patients should go for some “activity” if possible, is something that need to be explained in greater detail. The stupid and dangerous myth of deconditioning (as cause) is a problem. I always feel a little sad when stating the obvious in...

A renowned good radio show “Ekko”, had a lengthy interview today with a former top cyclist and psychologist, now patient (6-7 years). K.Lien explained the newly published study and Tronstad in Bergen added information about the pyruvat dehydrogenase and the mitochondria and such. These things...

Good that it is finally published. Not read it yet. I guess you will find significant differences between day 1 and 2 among patients and controls. Maybe this is the only practical way to go about such study (2 days), but the weakness of such a study, is that you often won’t be able to catch the...

Important! Let us be very happy for anyone who recover/remission. We should stay curious, hope it draws some attention among many that can be of good for the community in general, but we should all be very sober about CCI/AAI and the connection to ME.

“One hour before infusions, all patients received premedication with 1 g of oral acetaminophen, 10 mg of cetirizine, and 8 mg of dexamethasone.”

Wrong is imprecise and I would change it with “unlikely”. Multi system nature of the illness or systemic, my meaning: many/heavy symptom burden from different systems, immunological, OI, sleep and so on. At the bottom line, I just fear that there could be quite a considerable amount of...

Shall not make a mess of this CCI thread, just a final word. When studying a population of ME (correctly diagnosed) I would, due to the strong systemic component, imagine this to a greater extent: either the drug work or it doesn’t. And with the important thing in addition. You will probably...

This may be a little on the side, but since Rituximab and placebo are touched in the discussion here, I might bring it up as well. Have not read the rituxme study in detail, later when considerably improved. Maybe complicating things unnecessary, but what I would kindly ask, is if someone who...

Amen.

This topic has drawn a lot of attention and rightly so. I believe all the questions it raises probably will do something good for patients in general. But I do think that this “thing” will “solve itself” (another naive assumption?). It will sort of all be out in the open, if that make any sense...

Yes, I think that is a good prediction. This last week raises so many questions and concerns, its almost like digesting a 10 course meal, I guess.

Yes, I clearly see the point and concern, just don’t think there will be many of them. If anything, ME-patients are well informed and hopefully quite cautious, even when the situation is horrendous and there is little to loose. Of greater concern could be surgeons willingness to do such...

I really hope you’re wrong on the first part, though someone said there were already someone fundraising for surgery....? At the other hand, you just don’t do neck surgery if there is no cause for doing it. Or? Maybe that’s naive from my side. But I have a hard time really picturing hordes of...

Thank you so much for taking the time and costs gathering this information that I guess a lot of us wanted. It’s been a fascinating week and an eye-opener, but don’t know what to make of it? CCI must be a differential diagnosis that some ME-patients have in addition or develop? As a former road...