GPT for ME/CFS Questions

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?

Potentially I could instruct it to only use MEpedia for objective facts, like what researchers work at such and such organization, or firmly proven science, but don't use anything that is still up for debate.
 
Yeah me-pedia has some somewhat dodgy stuff about treatments, hypotheses, and possible (unproven) comomorbidities that is stated much more matter of factly than the literature points to, but apart from that it’s a really good resource, with the caveat of being outdated.
 
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.
 
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.

It would be interesting if we could come up with a good way for it to access S4ME materials. If they could set up an API that'd be much better. Although it has issues retrieving too long of results, and some threads are very long.

But I'm not sure they'd allow it. The rules kind of discuss that sort of thing:

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:

It is genuinely difficult and I wouldn't suggest allowing anyone else to do it.

I was thinking of it either in terms of something members could offer to a researcher doing a project they supported, or an attempt (again by members) to create some summaries with all the personal/identifying information removed.
 
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.

The way things work what you do is take a foundation model (something like GPT or LLama3 works well and is open source) and you can fine tune with additional data but that is quite expensive. Instead you can do a lot with prompt engineering and RAG. With RAG you compute embeddings for chunks of data (say MEPedia pages or sections of pages; or sections of academic papers) then when a query is asked you can use the embeddings to find the closest matching text chunks to the question and put them into the prompt (saying use this as context) along with the query. This lets the model reason about things that it doesn't know about (the latest information or private info).
 
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.”

Done. Difference between regular ChatGPT and ME/GPT:

"is me/cfs psychogenic?"
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. This way if a new tool comes up that can be easily trained, all that would be required is to give it this list of resources and it would be ready to work. Copy-paste intellligence.

I know we already have several sources scattered across posts spanning years, 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. The search is something I've been complaining about for a long time, and in addition to this it would make moderation easier by having something like this.

And frankly the forum has so much content by now, including quotes from good sources and criticism of bad ones, that it's probably one of the best resource out there for a model anyway, so that would be two birds with one stone.
 
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.

I thought about this earlier, but is it the best way to go?

As I understand it (and to be fair I don't), one of the values in these tools is that they learn. I realise they have to be trained, but is it not enough to ask them to focus on things like objective outcomes, so they're learning to identify decent science and working out how to identify not-decent science? If they could get it right whether they're confronted with good, indifferent, meaningless, or frankly scandalous sources, they'd be powerful tools.

I may have got the wrong end of the stick, though. When people are discussing this kind of technology I tend to grind to a halt halfway through the first sentence because I can't remember what the initials they're using stand for. Even when I've looked up what they stand for, I still don't understand what the words mean.
 
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.

There's two different options.

There's giving it files to read along with your question. That's what this GPT is. It can very accurately answer based on this info in the files. But there are limits to how much you can upload, and it can't actually read everything you uploaded when you ask a question. It still has limits (probably somewhere around 75,000 words) for what it can actually see at one time, so another tool basically acts like a search engine to find the best chunks of text for answering then shows it to the GPT. And if you've ever used a search engine, you'll know they are far from perfect and you'll miss a lot of important information.

So even if I could upload all of S4ME, it can't answer a question like "how many posts" because it can't possibly see all the posts at once.

The other option is actual "training", which is teaching it to speak like the text you train it on. If you were to say something to it, it would respond in the most likely way that a user of this forum would respond to the same thing.

I'd be interested to see what that would look like, but I don't know how useful it'd be.

But also, there's the option to further fine-tune afterwards. Theoretically, after training, most of the knowledge is stored, in a very abstract way, inside the model. Fine tuning would be training it exactly how you want it to respond with the information in its "brain". Exactly which information you want it to put in the answer, not just what an average user would write.

You give it an example question someone might ask, as well as exactly how it should answer. Maybe use actual expert answers in the examples. Do this with lots and lots of examples. Then hopefully you have an AI model with all the knowledge of the forum, but which answers in a very useful way.

That's basically what ChatGPT is. They first trained it on the whole internet, then they created conversation examples and fine-tuned it to speak and answer exactly how they want.

Still can't ask it things like "how many posts" though, because that's not how the information is stored. It's more like vague blobs of meaning.

The training option is still much more expensive and complicated, but it's theoretically do-able.
 
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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.”
The problem arises when you say the l;ast sentence because how does it decide what are 'multiple high quality studies'

These that its quoting
"Research indicates that ME/CFS involves significant physiological abnormalities, including impaired oxygen extraction during exercise, neuroinflammation, and immune system dysfunction【7†source】【8†source】."

are certainly not supported by multiple high quality studies. High quality has to cut both ways, research may suggest the possibility of these abnormalities, but AFAIAA there isnt reliable evidence proving any of them

ETA: not meaning to be negative, i think the idea and efforts are admirable i certainly couldnt do or understand any of it... i was just pointing out that it needs to be accurate scientifically otherwise its biased towards unreliable biomedical studies rather than to poor psych ones.
 
As $20 per month is kind of significant for me, and it doesn't seem like this is being used a lot, and I don't need ChatGPT Premium for anything else, I'll be canceling my subscription. ME/GPT will continue to be available until July 1st.

If anyone else has a premium subscription and wants to set up this custom GPT, I wrote up the exact setup instructions and added it as a file in the Google Drive folder that has all the rest of the files.

Link to instructions

Link to folder

Note: With uploaded files, it will work much better if the text is formatted very simply with no extra junk. For example, I copied the Wikipedia page into the "Miscellaneous Information" file, but it has a lot of unnecessary extras like "{{Short description|Chronic medical condition}}", links, and references (I thought it might be able to cite from these, but it doesn't). Regular, human-readable text is best. If you have a PDF, copying the relevant text into a text file should work better as well.
 
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