ME/CFS research
@cfsresearch.bsky.social
Interested in research into ME/CFS/MECFS, FND and related conditions. https://medium.com/@cfs_research
Its unclear if they had objective cognitive dysfunction.
November 11, 2025 at 3:25 PM
Its unclear if they had objective cognitive dysfunction.
Some more context in this article: archive.ph/XjcUM
archive.ph
November 6, 2025 at 8:59 PM
Some more context in this article: archive.ph/XjcUM
The above link you posted doesn't give all the details. If you're interested in facts, I'd recommend looking at the inquest. If not, no worries.
November 6, 2025 at 8:53 PM
The above link you posted doesn't give all the details. If you're interested in facts, I'd recommend looking at the inquest. If not, no worries.
No, she wasn't denied any food. She was given a feeding tube, which failed, then was offered TPN which she decided she didn't want. Definitely didn't starve because she was denied food.
November 6, 2025 at 8:52 PM
No, she wasn't denied any food. She was given a feeding tube, which failed, then was offered TPN which she decided she didn't want. Definitely didn't starve because she was denied food.
According to the list on mepedia the only death in 2024 or 2025 in the UK was Isla Kidd, who died of heart failure.
November 6, 2025 at 8:51 PM
According to the list on mepedia the only death in 2024 or 2025 in the UK was Isla Kidd, who died of heart failure.
That's ridiculous. I don't have an agenda, other than recovering (which I did) and helping other patients. Perhaps you should look at the research yourself. Stress is physical BTW. Following the research isn't hampering other research. That's a very nasty and illogical accusation. You should stop.
November 6, 2025 at 7:15 PM
That's ridiculous. I don't have an agenda, other than recovering (which I did) and helping other patients. Perhaps you should look at the research yourself. Stress is physical BTW. Following the research isn't hampering other research. That's a very nasty and illogical accusation. You should stop.
I'm familiar with most of the deaths from ME, and I don't think there have been any like the one you mention.
November 6, 2025 at 7:13 PM
I'm familiar with most of the deaths from ME, and I don't think there have been any like the one you mention.
Yes, I'm very familiar with the illness, and I would have died of starvation myself if I hadn't recovered, as I was rapidly losing weight due to not being able to digest food due to autonomic dysfunction.
November 6, 2025 at 4:23 PM
Yes, I'm very familiar with the illness, and I would have died of starvation myself if I hadn't recovered, as I was rapidly losing weight due to not being able to digest food due to autonomic dysfunction.
Can you point to an example of this?
November 6, 2025 at 4:22 PM
Can you point to an example of this?
years scientists have mapped out some of the brain networks responsible for this, e.g.: pmc.ncbi.nlm.nih.gov/articles/PMC...
The ventro-medial prefrontal cortex: a major link between the autonomic nervous system, regulation of emotion, and stress reactivity?
Recent progress in neuroscience revealed diverse regions of the CNS which moderate autonomic and affective responses. The ventro-medial prefrontal cortex (vmPFC) plays a key role in these regulations. There is evidence that vmPFC activity is ...
pmc.ncbi.nlm.nih.gov
November 6, 2025 at 4:21 PM
years scientists have mapped out some of the brain networks responsible for this, e.g.: pmc.ncbi.nlm.nih.gov/articles/PMC...
Actually, that isn't the case. Some studies did show differences between patients and controls, but follow-up studies failed to replicate that. Mitochondria respiration is normal in muscles and PBMCs. We know for certain that stress causes dysautonomia and parasympathetic dysfunction, and in recent
November 6, 2025 at 4:21 PM
Actually, that isn't the case. Some studies did show differences between patients and controls, but follow-up studies failed to replicate that. Mitochondria respiration is normal in muscles and PBMCs. We know for certain that stress causes dysautonomia and parasympathetic dysfunction, and in recent
there. Inability to digest food is common in severe ME/CFS, and is likely caused by suppression of the parasympathetic nervous system due to chronic stress.
November 6, 2025 at 5:48 AM
there. Inability to digest food is common in severe ME/CFS, and is likely caused by suppression of the parasympathetic nervous system due to chronic stress.
There isn't any good evidence that mitochondria are damaged, but there is replicated evidence that stress is a precipitating factor, and that the stress system is dysfunctional. I'm not sure why you would think starvation is a cure for stress. I think you may be confusing a few different concepts
November 6, 2025 at 5:48 AM
There isn't any good evidence that mitochondria are damaged, but there is replicated evidence that stress is a precipitating factor, and that the stress system is dysfunctional. I'm not sure why you would think starvation is a cure for stress. I think you may be confusing a few different concepts
charities are doing so little to help.
October 30, 2025 at 5:30 PM
charities are doing so little to help.
they aren't getting very much of that at all. I got fuck all help, and had to figure it out myself, and unfortanately most patients are still in the same position today (and quite often dying from malnutrition, which is where I was heading). It's frankly a bit ridiculous and irritating that the
October 30, 2025 at 5:30 PM
they aren't getting very much of that at all. I got fuck all help, and had to figure it out myself, and unfortanately most patients are still in the same position today (and quite often dying from malnutrition, which is where I was heading). It's frankly a bit ridiculous and irritating that the
But it's not simply about helping people cope, it's also about addressing core factors such as stress, which can help people recover. Saying that it can only help people cope simply doesn't reflect the reality, and downplays the importance. Patients need all the help they can get, and unfortunately
October 30, 2025 at 5:30 PM
But it's not simply about helping people cope, it's also about addressing core factors such as stress, which can help people recover. Saying that it can only help people cope simply doesn't reflect the reality, and downplays the importance. Patients need all the help they can get, and unfortunately
It doesn't, that was part of my rebuttal. The MEA has a long history of wanting to define ME as "physical", which is unhelpful.
October 30, 2025 at 3:35 PM
It doesn't, that was part of my rebuttal. The MEA has a long history of wanting to define ME as "physical", which is unhelpful.
to see what the guidelines themselves say.
October 30, 2025 at 3:02 PM
to see what the guidelines themselves say.
It also doesn't reflect what we know about the brain (it isn't "physical" or "psychological"), the experience of patients themselves, or the evidence we have from studies. But whatever, that's the view that the ME association sticks to, even if it harms their patients. Anyway, it will be interesting
October 30, 2025 at 3:02 PM
It also doesn't reflect what we know about the brain (it isn't "physical" or "psychological"), the experience of patients themselves, or the evidence we have from studies. But whatever, that's the view that the ME association sticks to, even if it harms their patients. Anyway, it will be interesting
So why does addressing psychological factors have such a large impact on the physical symptoms, leading to improvement in 2/3rds and recovery in 1/3 of cases?
October 30, 2025 at 2:09 PM
So why does addressing psychological factors have such a large impact on the physical symptoms, leading to improvement in 2/3rds and recovery in 1/3 of cases?
Neuroticism has been shown to be a factor in the fatigue of cfs and ms, although may be due to increased depression www.sciencedirect.com/science/arti...
The role of neuroticism, perfectionism and depression in chronic fatigue syndrome. A structural equation modeling approach
Previous studies have reported consistent associations between Neuroticism, maladaptive perfectionism and depression with severity of fatigue in Chron…
www.sciencedirect.com
October 29, 2025 at 1:36 PM
Neuroticism has been shown to be a factor in the fatigue of cfs and ms, although may be due to increased depression www.sciencedirect.com/science/arti...