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For what its worth. Today I am 3 weeks after my second shot of Pfizer/BionTech. My second injection experiences are very slim. And that’s good. I had some very slight soreness in the arm for about 24 hours, but close to nothing of what I call the two days of more “usual” immunological...

While the LP- debate continues in many directions, lets not forget the very basics. Never forget what I label as the (causation) model behind LP. Calling it a flawed model is to weak. In all its absurdity, it is a fake model. A fake model is dangerous. LP promoted as some sort of remedy for ME...

LP surely had its 15 minutes of fame. Everything is probably said, and people are fed up. But more than ever, 2021 shows us that some things are moving in circles and progress far away. Many people have an interest in status quo no matter if it ruins patients health totally. Would like to focus...

Is she making an analogy smoking/disease? Linked to motivation? It says it all. Failing a smoking course won’t do you any additional harm, other than continuing smoking. LP on the other hand can cause serious harm. Many patients have experienced exactly that. It should be needless to point out...

The rejected LP-study was actually debated this evening on “Dagsnytt atten” for a good 20 minutes. This is the most important daily news program in Norway. Participants were Kennair and Agledahl, a member of NEM. Really nothing new. Kennair is pissed at his nemesis NEM and patients. The debate...

Very predictable to focus solely on COI and the candidate as some sort of victim here? To claim that the rejection is down to one specific person is ridiculous. Could we please hope for more focus on design and robust methodology, not solely sidetracking focus on one single person and COI...

Yes, understand. Good points, and this is just ridiculously difficult to get right. Hard to tell if there is 5 or 50 Grand Canyons between the ones talking about exercise for ME-patients and the reality.

The doctrine that “exercise is good for you no matter what and always with no exceptions or nuances”, is a major obstacle. Ideally I would wipe “exercise” out of the vocabulary regarding ME. This exercise-dogma need modifications, we need understanding that exercise in the real sense and...

Somewhat relevant here, and Geraghty et al on epistemic injustice is always a "joy" to read. https://research-information.bris.ac.uk/ws/portalfiles/portal/92570644/CFS_JME_FINAL_Oct_2016.pdf

So many words and so little time, but a couple of comments. 5 is at best very unclear. And I find 14 to be particularly unhelpful, something like “There are no parts of the course that indicate that participants should/must increase their physical activity”. Well isn’t that exactly the whole...

Thanks. Not sure if it makes any sense, but if so, it would be nice if someone "out there" did a study on ME-patients and this world-wide mass-vaccination, to see if that could give any clues to what’s going on with the immune system. I don’t know, but if there is one positive thing with this...

Going for my second shot of Pfizer tomorrow. Had a (extra) grim lengthy period before shot one, so it really can be hard to tell what’s what. Had the slightly sore arm and a little headache for a day or two as the immediate usual side-effects. But then experienced even more immunological things...

It is of no surprise, but quite concerning when media only focus on COI, which it obviously is, - but it is so much more. The last thing patients need is another one labeled as vexatious. But it seems to be totally impossible to express real concerns being a ME-patient? It is fascinating that...

Isn’t it just fantastic that this Gundersen-figure, the guardian of science in his own mind, focus only on conflict of interest? Design is nothing to worry about. It says a lot. It was never ever about science for these folks when it comes to ME. Only personal, only about attitudes, prejudice...

A thing of beauty. Obviously great news, although I ideally would like to see a well designed study on LP to put this nonsense to rest once and for all. But as we know, as seen in this decision, it is probably almost impossible to do such a study properly. I do share the view, that a person...

Finally managed to see the whole presentation. Very impressive work, and thanks to the people putting it together. It is baffling stuff and all to familiar to patients. Hopefully many will invest time to view it, first and foremost doctors, politicians, journalists, friends and family. Quite...

It’s not easy to just let go of “background materials”, cause one obviously like to stay well informed and up to date. But these things, again and again? Don’t know if we need more of it. These people really know how to set the agenda, how to (mis)use patients instead of focusing on making...

Must admit that l’m so fed up with blatant patient-blaming that I don’t and won’t read the piece that led to this one. Same personal attitudes all over again. My guess is that an informed patient probably could refer close to 80% of the content without even reading it! But I read this comment...

Absolutely not! It surprises me from time to time how much power there is in hope, when experiencing setback after setback, just managing day to day basics and survival and all your left with is added insult to injury. It’s a cliche and true, hope never dies. So although almost nothing is...

The long-hauler approaches will probably swing all ways, but from a ME-perspective I’m just a tiny bit optimistic, looking back at 2020 and the pandemic and looking ahead. The sad fact is that this tiny bit of optimism, is due to the fact that after all, there is just about nothing happening for...