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(Responding to a post that has now been moved) I think this is not about pupil responses but movement of the eyes. Saccades are one type of movement of the eyes, where the movement occurs in rapid steps. I read that saccades are generated by the brainstem.

I have the impression that the more severely ill patients don't always understand the patients like me who are less affected. They seem to think there is nothing between their level of severity and being able to function normally but with fatigue, when there is actually a lot inbetween.

“What we’re trying to do is generate a unique ME/CFS signature based on characteristic changes to eye movements, a behaviourial signature that is specific to the disorder that can be used to help diagnose it and monitor the effects of any treatments.” “Tentatively, what we’ve found already...

There is a chance that there will soon be movement from the UK government on a national ME strategy. Remember this? The Action for ME announcements are presumably in anticipation of that, and DecodeME is making this more possible.

Does anyone think that PEM is more likely to occur in "new" situations? Situations that are not a relaxed routine but where you're learning? They don't have to be stressful in a bad way, they can be pleasant and exciting too. I am not sure but have the suspicion that being in an new situation...

TPPP sounds like it could have something to do with cadherins. At least this article says that cadherins interact with microtubules. https://www.ncbi.nlm.nih.gov/books/NBK6079/ Some background information: cadherins and the cell skeleton have come up in other studies before and no one seems to...

An article that explains what TPPP does Tubulin polymerization promoting protein 1 (TPPP1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3925458/

Information on the TPPP variant associated with ME/CFS can be found here : https://www.ncbi.nlm.nih.gov/snp/rs139264145 Nothing interesting stands out. The variant hasn't been cited in any publications (yet seen by the software). It doesn't seem to be a rare variant. Nothing is known about its...

Yes mutations in the TPPP gene affect multiple sclerosis.

Regarding sleep and the brain sorting things out. In the evening I tend to have ideas and plans for the next day, but upon waking up, the details have faded and there is little emotional attachment. I've mentioned this before as a kind of inability to maintain attention and interest in projects...

I'm not sure I understand what that means. Maybe we are thinking about the same thing? My thought process was: since PEM is delayed and tends to occurs after activity, with sleep inbetween the activity and the worsening, I thought that it would make sense if it PEM is due an ordinary and...

Is it a dumb question to ask whether PEM could have something to do with the physical and mental activity stimulating myelin growth and there being limited ability to support this due to some ongoing problem?

Largest ME/CFS genetic study to date. Three different cohorts totaling more than 2500 patients. First Immunochip study in ME/CFS. Possible implication of TPPP genetic region https://www.sciencedirect.com/science/article/pii/S0889159122000782 TPPP plays a key role in myelination of nerve cells...

I wrote this because I have a medical appointment tomorrow and have anxiety over being unable to accurately describe what is wrong and then being misclassified as not seriously ill. I made some tea and felt terrible while doing it but couldn't really put in words what exactly is wrong. A lot of...

I still struggle to explain what the illness actually feels like in my body and how it affects me. In part because there are no commonly used words that I know of to describe these sensations. In part because symptoms fluctuate over the course of a year and in response to activities so a bigger...

I think multisystem is meant to say that patients can have many seemingly unconnected symptoms. It can't be a reference to a precise disease mechanisms because it hasn't been found yet. DwME isn't perfect but so much other material is much worse in comparison.

I tried glutamine and seemed to get an energy boost from it for a day. The stimulation then triggered a mild worsening. I find that it's not difficult to stimulate the body in various ways. The challenge is in increasing tolerance for stimulation and activity in a sustainable manner. That said...

"I want high quality in all research, including me. The Norwegian LP study is designed so that you can trust the result." It's an automatic translation. The "me" presumably means my own.

This is an important study because it shows that healthy people exist that move as little as ME/CFS patients, but that these people do not have the same abnormal results on cardiopulmonary exercise testing. With "inefficient exercise ventilation" they mean a problem that they interpret as...

0.91 mmol/L with a reference range of 0.9 to 1.7 Technically not yet low, but close enough. Is this a suspicious result? Aren't people with ME/CFS supposed to tend towards increased lactate levels?