I not sure i feel comfortable with MEpedia being the main source... doesnt it have a bunch of stuff about CCI which is dodgy, as well as the good stuff? i too ill to check & dont know how any of this works but i imagine GIGO is an issue?
I not sure i feel comfortable with MEpedia being the main source
Yeah it’s gotten pretty bad, except for notjusttired (and the occasional edit by you, me, and JamieS) there is absolutely no activity for months if you look at recent contributions tab.Looks like there's the issue of many MEpedia articles being out of date.
I'm not suggesting doing this, I just thought it might be an interesting question to raise.
Could one of these tools be targeted at either a long thread on S4ME, or a topic discussed across several threads, to summarise the discussion points for a busy researcher? Or direct someone with limited reading time towards the most relevant threads on a topic?
It could potentially be useful if it's both acceptable (not a given, I know!) and good enough.
b) Sharing of material from S4ME on other social media:
No material from the members only area of this forum may be copied or discussed on other social media. While the public area of the forum is available to all, and posts may be linked on other social media, posts should not be copied on other social media without the poster's permission.
c) Use of forum posts for research
Permission will not be given to any researcher to use the whole or any part of the forum as source material for research.
But I'm not sure they'd allow it. The rules kind of discuss that sort of thing:
Initial posts have been moved from another thread.
I just noticed that now GPT-models pre trained on data are available for free users too. Is someone up to the task of training one on Me-pedia, trial by error, and science for ME (if members consent). It would be so much more useful for us than vanilla chatgpt. I’m only half joking with the proposal.
edit: forestglip knows more about this than me, please refer to the message below mine.
I think MEPedia is fine for historical information, but all the sciencey bits should be removed if no one is updating them.
Maybe you could add
“make sure to display scepticism of attempts to dismiss the biological nature of ME/CFS, and to specify that claims that aren’t supported by multiple high-quality studies are not necessarily agreed upon.”
ChatGPT: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex and debilitating condition characterized by extreme fatigue that doesn't improve with rest and can worsen with physical or mental activity. The exact cause of ME/CFS is unknown, and it is likely that multiple factors contribute to its development.
Historically, there has been debate over whether ME/CFS is primarily a psychological or physical illness. However, the current consensus in the medical community is that ME/CFS is a multifactorial condition with both biological and psychological components. Research has identified potential biological abnormalities in people with ME/CFS, including immune system dysfunction, abnormalities in energy production, and nervous system issues. Psychological factors may also play a role in the severity and management of the symptoms but are not considered the primary cause.
The National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the World Health Organization (WHO) recognize ME/CFS as a serious, chronic, and disabling physical illness. Treatment approaches typically involve managing symptoms and improving quality of life rather than focusing solely on psychological interventions.
If you have more specific questions about ME/CFS or need information on current research and treatment approaches, feel free to ask!
ME/GPT: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is not considered a psychogenic disorder. It is a chronic, debilitating neurological disease that affects multiple body systems, including the neurological, immunological, endocrinological, cardiovascular, and metabolic systems【7†source】【8†source】.
The misconception that ME/CFS is a psychological condition has been debunked by numerous studies. Research indicates that ME/CFS involves significant physiological abnormalities, including impaired oxygen extraction during exercise, neuroinflammation, and immune system dysfunction【7†source】【8†source】. The hallmark symptom of ME/CFS, post-exertional malaise (PEM), where symptoms worsen after physical or mental exertion, is also a physiological response rather than a psychological one【7†source】.
The National Institute for Health and Care Excellence (NICE) and the Centers for Disease Control and Prevention (CDC) recognize ME/CFS as a serious long-term illness with a significant impact on patients' quality of life. These organizations emphasize the biological nature of the disease and recommend management strategies that address its physical symptoms, such as pacing and symptomatic treatments【8†source】.
Historically, ME/CFS has faced stigma and misunderstanding within the medical community, partly due to its complex presentation and the lack of a definitive diagnostic test. However, the current consensus is that ME/CFS is a biological, not psychological, disorder【7†source】【8†source】.
For more detailed information, you can refer to the following resources:
- https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
- https://www.cdc.gov/me-cfs/index.html
- https://www.nice.org.uk/guidance/ng206
Since there will be better solutions on a regular basis, the most useful work IMO would be to build a vetted catalogue of documents and resources to serve as a base.
which makes me think that another one of the most useful things we could do for now would be a model trained on the forum's public posts. This way it would be possible to ask it questions like "how many posts do we have listing good resources about ME/CFS?" and so on.
Since there will be better solutions on a regular basis, the most useful work IMO would be to build a vetted catalogue of documents and resources to serve as a base.
The problem arises when you say the l;ast sentence because how does it decide what are 'multiple high quality studies'Maybe you could add
“make sure to display scepticism of attempts to dismiss the biological nature of ME/CFS, and to specify that claims that aren’t supported by multiple high-quality studies are not necessarily agreed upon.”