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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?

Since not everyone will be able to open docx files, here is the same file in pdf format.

There are several members here, including me, whose health problems started in adolescence. I hope you succeed in giving a voice to young patients This is my concern as well. I think you would first have to create a space where patients feel safe in saying what they really think. And maybe...

There are existing hospitals that specialize in rare diseases and who also do research. We as community could ask that these clinics (if they consent) to be given funding to add a unit for patients with poorly understood (but not necessarily rare) diseases with significant individual and...

Difficulty thinking. Thinking requires more effort, is slower, is interrupted frequently by losing attention. Sometimes formulating clear thoughts is not possible (this particular problem is I suspect what is really meant with "brain fog"). The effort of thinking becomes painful over time.

What's the view here on the value of study that searches for PEM in other syndromes and illnesses? It would clarify how common PEM is in other illnesses and syndromes. If it occurs in other illnesses and syndromes, it might help us understand what PEM is by looking at what all these illnesses...

It might just be a convenient way to divide the patient sample into those with more and those with fewer symptoms. But yes, don't we have enough problems with odd definitions in the literature already?

I think what may be happening is that I can't tolerate for long the stimulation of the nervous system that is required to allow me to function. Alternatively, the stimulated feeling may be a response to subtle injury caused by the exertion (maybe blood perfusion problem?)

Aren't all symptoms by definition modifiable by attention? Symptoms are by definition self-reported. Self-reporting of symptoms is well known to be affected by various contextual factors like attention or the interaction with the clinician.