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He talks about ME and distinguishes between an acute and a chronic state.

Prusty has mentioned bone marrow, for instance here (from 1:56:33): Verbatim transcript of Prof. Bhupesh Prusty’s presentation to the Fatigatio E.V Research Seminar – 14th Sept. 2024 https://docs.google.com/document/d/1T79bGDR1w31zHhS39AXz3wDyhlmvwadg/mobilebasic

Thank you, Simon! Writing poems and texts helped me tremendously during my first years with ME. An outlet for the soul.

It’s such an honest, heartbreaking and yet hopeful article! Thank you, @Simon M and @Chris Ponting! Your words, Simon: “It’s like I’m surrounded by an electric fence that will trigger a bad day if I touch it. But the fence is invisible, and moves every day." They reminded me of something...

Sorry to hear it can be this much of a problem for you! It’s quite scary not to be able to rely on the brain working like it used to. I can’t wait for the researchers to figure ME out…

Interesting! I found the symbols number 5 and 6 to be the most difficult ones, that’s when my mind froze. But you are right in that it might be the repetition in itself (after approximately five tasks) that the mind freezes. Perhaps also a combination of repetition “tiredness” and the type of...

I tried to take the DSST test that @forestglip posted above. During the course of the test it took a longer time to react and draw the symbols, but certain symbols were more difficult than others. For instance number six. It’s like my mind freezes. It knows what to do, but it can’t decide on...

Thanks @Murph for the explanation! Will be interesting to see further details!

Sorry, I misunderstood their words “3-D in vitro skeletal muscle” and “3D skeletal muscles exposed to ME/CFS and Long COVID-19 sera.”

This is amazing work! Brilliant idea to use 3D-printed muscle tissue. (Edit: not 3D-printed, but still a brilliant idea to use 3D.) Hasn’t Bhupesh Prusty talked about exactly this? About DRP1 and fragmented mitochondria? For instance, here...

Yes, the day before I know I have catched a virus I get some kind of neurotransmitter imbalance with both more easily triggered orthostatic intolerance and myclonic jerks and cramps. I can get stuck in positions as well, much like Parkinson’s. There seems to be a connection between the immune...

I find this paper interesting, but wondering if anyone with more knowledge and research experience has any thoughts on it?

No one has claimed to know the root cause to ME or the exact biochemical reactions. But Jonathan expressed that he was interested in the variability of ability that occurs and especially why it happens in people with severe ME. In trying to understand he made the comparison with people...

It seems as though you are looking especially for an explanation regarding the variability in ability in severe and very severe ME-patients? And the explanation you find most relevant is to compare it with the sense of pain or dizziness or nausea, and the conscious and unconscious effort to...

When I crashed severely for the first time I had tried to walk to our mailbox outside the house. Soon the legs began dragging and once I was back in the house I tried to get to my bedroom upstairs. I had to crawl and drag myself up the stairs with several stops in order to get there. There was...

Great that you are sending them a letter regarding this! My vote is on the second one, the one which includes “patients who have been harmed by the current treatment paradigm…”. Even though the word current might not be accurate regarding the latest NICE report not supporting CBT/GET? But in...

The same for me. I had to eat day and night during my worst PEM crash. The body burned energy like never before while being bedridden. I lost a lot of weight until the body stabilized.

Hi, @MelbME! Just wanted to know if you have read this recent research about low vasopressin in ME-patients and the suggestion of diabetes insipidus being part of the ME picture? I’m one of those with a pathological low U-osm and during severe crashes it’s like my body empties itself of fluid. I...

Is the article comparable with this one in any way? Or are they unrelated regarding their findings? https://www.medrxiv.org/content/medrxiv/early/2024/02/13/2024.02.11.24302636.full.pdf

Amazing work @Arvo! This is truly terrible and needs to be investigated further. It needs to come into light that they have it all set up. In other words that they will get the results they want because of their high biases. The ones putting the research money into their hands and the patients...