I agree. I think it would be a good area for fundamental research into what CA10 does, since it might be most active there. But it's expressed in other parts of the brain as well, and the ME/CFS-relevant function or effect could be somewhere else.
I probably shouldn’t go into too much detail at this stage here, but understanding the function is the priority. In general that is probably what we are best suited to contribute - i.e. trying to understand the biology of the genes that have been highlighted by DecodeME and how they may contribute to the symptoms.
Understood, that's helpful, thank you.
I think the fact that some people with an ME/CFS diagnosis have severe pain from being touched, some have pain when exposed to light and sound, but others don't have these sensitivities is interesting. Could the feeling of fatigue be usefully thought of as another type of pain? What is the disease course with respect to these sensitivities - do they come and can they also completely go? Or do they just add to symptoms over time, and worsen? Is there a tight relationship between these sensory sensitivities and overall ME/CFS severity? There is so much we don't know.
Would you describe it as pain? I guess it can be painful but to me it‘s not pain in a sort of „ouch“ sense its more pain in a sort of „deep discomfort“ my body is telling me this needs to stop, almost more like „cringe“ or „overwhelm“?
I think my case is extreme. In the sense that I haven’t been able to hear a sound without getting discomfort in 2.5 years. So I havent spoke or been spoken to in that long. I wear industry grade earmuffs 24/7. Yet for me it‘s more like „sensory overload“ and the risk of PEM than pain per say.
I can absolutely imagine that. I would say the same about sound if I didn‘t have earmuffs.
So sorry that you suffer like that.
Yes as you say, it's incredibly unpleasant. I wear noise cancelling earbuds or regular earplugs a lot of the day because sounds can just be unbearable sometimes. Rustling of plastic bags and stuff are torturous. I usually can't listen to more than a few songs in a row before I have to take a break, and on a bad day anything but calming ambient drones causes that feeling. Same with speech, sometimes my partner will talk and its like.my brain is being assaulted with words.
The screening questionnaire asked
This is exactly my question. I dont feel pain but I feel deep discomfort if someone touch especially my calves. Also cold water is very uncomfortable for me. I have also that light and sound intolerance, chemical sensitivity, i dont have a good sense of smell. I also would like to know if this gen is somehow connected to heat intolerance which is very bad in my case.
Yes, I am same. It’s not feeling of pain, it’s feeling overwhelming discomfort like my brain is buzzing and vibrating and normal level noise is too loud, too fast and I can’t think or process anything anymore and must get to a quiet dark place. And the overwhelming fatigue and weakness comes then usually afterwards. (When I see people with autism depicted on TV w sensory overload I wonder if it’s same pathways)
