OpenEvidence: an AI resource from Mayo clinic and NEJM (currently with misleading advice)

rvallee

Senior Member (Voting Rights)
A good example of an AI platform that is obviously tuned and biased towards a cherry-picked editorial viewpoint of ME/CFS. I'm not sure where to place this, I went with the fact that it seems built by Mayo.

The platform is marketed as "the leading medical information platform". Which is doubtful. http://www.openevidence.com/

I'm not sure what access there is for the public. It says free and unlimited for professionals and there is a Reddit discussion where some of the users asked questions, they appear limited to X per day, or something like it. The answers are very misleading and promote the company line. A great example of misusing AI.

There is however a way to report problems with the information. Considering that it's been obviously tuned to promote psychosomatic pseudoscience, I don't have much hope. The editorial slant is blatant, IMO.

There is a reddit thread with some discussion, including some additional questions and answers made by users.
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To clarify: I doubt it has been trained specifically to think this of ME/CFS. It's probably a general bias, not a specific one, the biases happen in what the platform gets fed and in the set of instructions that make it weigh some evidence and discard others.

By contrast, the main general LLMs like ChatGPT do far better. They need to be trained incorrectly, with medical biases, to get things like this wrong.
 
@rvallee bias in AI always means how far off the model is from the training data.

Bias in AI has nothing to do with how closely the training data matches the ‘true’ world or how we want the world to be.

That being said, I’m assuming this is an training data issue and not a tuning issue. I.e. the data doesn’t represent the current knowledge of ME/CFS.
 
Notable that some comments on the reddit thread mention having different results, likely because of how they framed the question. Actually, you find similar issues with the big LLMS, where you get different results for example if you use CFS/ME vs ME/CFS vs myalgic encephalomyelitis.

And of course we can pretty much expect most MDs to use 'chronic fatigue' and ask poor questions, since it takes a bit of training to do that, and of course wanting to get accurate information vs. validating one's opionions.
 
Pretty much all LLMs are tuned to please the user, to be agreeable. I don’t know how that is for this model.

The prompts are also extremely important. If you look at research using LLMs to complete tasks, the promts can be many pages long and took a long time to develop.

This is the prompt from a recent Norwegian AI study that tried to get the AI to answer simple medical questions. The promt is under the header ‘Instruksjoner’
https://github.com/MMIV-ML/helseveileder/blob/main/README.md#instruksjonene
 
To clarify: I doubt it has been trained specifically to think this of ME/CFS. It's probably a general bias, not a specific one, the biases happen in what the platform gets fed and in the set of instructions that make it weigh some evidence and discard others.

By contrast, the main general LLMs like ChatGPT do far better. They need to be trained incorrectly, with medical biases, to get things like this wrong.

My guess would be they have an LLM running along with a RAG db containing various medical data - the flow that happens is roughly to embed the users query, find the closes matching text chunks in the RAG db and put all of that (and chat history) in a prompt to pass to the LLM. This the bias is probably in the data provided.

I've asks a few SLM (small language models) about ME (without additional RAG info in the prompt) I think (but I didn't keep notes) Phi3.5/4 and LLama3.x were ok; Deep seekr1-7b was poor (but I found that was generally the case) a larger version (70b) is more coherent. They seemed to know about the IoM report.

There are some LLMs finetuned with medical data - bioMistral for example but I wasn't convinced about this being good.

With the new training techniques from deepseek it may be easier to train for medical diagnosis etc if there are resources that could be used for reinforcement learning.
 
I asked the deepseek-r1:60b model about ME diagnosis and treatment and got this:
(Note this is a chain of reasoning model so it thinks first (between the tags <think></think> and then produces the result

>>> tell me how to diagnose ME/CFS

<think>

Okay, so I need to figure out how to diagnose ME/CFS. I'm not a medical professional, but I know someone who's

been feeling really unwell and I want to understand what they might be going through. From what I've heard, ME/CFS

stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It's a condition that causes extreme fatigue, among

other symptoms.


First, I think the person needs to see a doctor because diagnosing something like this isn't straightforward. The

symptoms can be similar to many other illnesses, so it's important to rule out other possibilities first. The user

mentioned things like anemia, diabetes, or thyroid issues. So maybe the first step is for the doctor to run some

basic blood tests and check vital signs.


The user also talked about the main criteria for diagnosis. The key symptom is persistent and profound fatigue

that doesn't get better with rest. It's not just feeling tired; it's a deep exhaustion that affects daily

activities. But how does a doctor determine that? They probably look at how long the fatigue has lasted. I think

it's something like six months or more, but maybe less if other symptoms are present.


Then there are the other symptoms: cognitive impairment, orthostatic intolerance, sleep issues, and sensory

sensitivities. So, in addition to the fatigue, the person might be having trouble concentrating or remembering

things, which could point to ME/CFS. Orthostatic intolerance means feeling worse when standing up, like dizziness

or fainting. Sleep problems are common too, but not just insomnia—maybe unrefreshing sleep where you wake up still

feeling tired.


Sensory sensitivities are another clue. The person might be overly sensitive to light, noise, or even certain

chemicals. So the doctor would probably ask about these symptoms during the patient's history.


I also remember reading that post-exertional malaise is a hallmark symptom. That means after physical or mental

activity, the fatigue gets worse and can last for days. This is different from just getting tired after exercise;

it's an exaggerated and prolonged response.


The user mentioned the Institute of Medicine criteria, which include at least one of the two: cognitive problems

or orthostatic intolerance. So if someone has severe fatigue plus either of those, they might be diagnosed with

ME/CFS.


But wait, I think some guidelines have moved away from using the term "chronic fatigue syndrome" and now prefer

ME/CFS to emphasize the neurological aspects. Also, there's no definitive test for this condition, so it's a

diagnosis of exclusion. That means after all other possible causes are ruled out, ME/CFS is considered.


So putting this together, the process would involve:


1. Medical history: The doctor asks about symptoms, their duration, and how they impact daily life.

2. Physical exam: To check for signs that might indicate other illnesses.

3. Blood tests and other investigations to rule out conditions like Lyme disease, multiple sclerosis, or hormonal

imbalances.

4. Assessing the specific symptoms related to ME/CFS, such as prolonged fatigue not relieved by rest, cognitive

issues, orthostatic intolerance, sleep disturbances, and sensory sensitivities.

5. Applying the diagnostic criteria, perhaps using the IOM standards, to confirm if it's ME/CFS.


I also read that sometimes a tilt table test is used for orthostatic intolerance, but I'm not sure how common that

is in diagnosing ME/CFS. Maybe it's more for confirming specific symptoms rather than the overall diagnosis.


It's important to note that while some people might experience improvement with certain management strategies like

pacing activities or dietary changes, there's no cure. So early and accurate diagnosis can help manage symptoms

better.


I wonder if specialists are needed here. Maybe a general practitioner can handle the initial assessment, but if

ME/CFS is suspected, referring to a specialist who has experience with the condition would be beneficial. Also,

mental health professionals might be involved because dealing with chronic illness can have psychological effects.


In summary, diagnosing ME/CFS involves a thorough medical evaluation to exclude other causes, followed by an

assessment of specific symptoms aligned with established criteria like those from the IOM. It's crucial for

patients to work with healthcare providers who are knowledgeable about ME/CFS to get an accurate diagnosis and

appropriate management plan.

</think>


Diagnosing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) involves a comprehensive approach that

rules out other potential causes of symptoms and evaluates specific criteria. Here's a structured summary of the

process:


1. **Medical Evaluation**:

- **Medical History**: A detailed review of symptoms, their duration, and impact on daily life.

- **Physical Examination**: To identify signs that might indicate other illnesses.


2. **Diagnostic Tests**:

- Conduct blood tests and other investigations to rule out conditions such as anemia, diabetes, thyroid

disorders, Lyme disease, multiple sclerosis, and hormonal imbalances.


3. **Symptom Assessment**:

- Evaluate for persistent and profound fatigue lasting over six months that is not alleviated by rest.

- Assess the presence of at least one of the following: cognitive impairment or orthostatic intolerance.

- Consider other symptoms like sleep disturbances (including unrefreshing sleep), post-exertional malaise, and

sensory sensitivities.


4. **Diagnostic Criteria**:

- Apply criteria such as those from the Institute of Medicine (IOM), which emphasize neurological aspects and

require severe fatigue plus either cognitive issues or orthostatic intolerance.


5. **Specialist Referral**:

- Consider consulting specialists experienced in ME/CFS for accurate diagnosis, potentially including mental

health professionals to address psychological impacts.


6. **Management**:

- Once diagnosed, focus on symptom management strategies, such as pacing activities and dietary changes, under

the guidance of healthcare providers.


This process ensures that ME/CFS is considered after excluding other conditions, leading to an appropriate

management plan tailored to the patient's needs.



>>> If a diagnosis is confirmed can you suggest how a treatment plan would be developed

<think>

Alright, so I need to figure out how a treatment plan for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

(ME/CFS) would be developed once a diagnosis is confirmed. From what I understand, ME/CFS is a complex condition

characterized by profound fatigue that isn't relieved by rest, along with other symptoms like cognitive impairment

and orthostatic intolerance. Since there's no cure for ME/CFS, the focus of treatment is typically on managing

symptoms, improving quality of life, and helping the patient adapt to their condition.


First, I think it would be important to work with a healthcare provider who has experience in treating ME/CFS.

They can help guide the development of an individualized treatment plan that takes into account the specific

symptoms and needs of the patient. The approach is likely to be multidisciplinary, involving not just medical

interventions but also lifestyle modifications, psychological support, and possibly alternative therapies.


One of the key aspects I remember hearing about in managing ME/CFS is something called "pacing." This involves

balancing rest and activity to avoid overexertion, which can exacerbate symptoms. So, a treatment plan might

include strategies for pacing activities throughout the day, ensuring that the patient doesn't push themselves too

hard and allows time for rest.


Another important factor seems to be managing sleep disturbances, as many patients with ME/CFS experience

unrefreshing sleep or insomnia. This could involve establishing a consistent sleep routine, creating a relaxing

bedtime environment, and possibly using medications or supplements under medical supervision to improve sleep

quality.


Nutrition is also likely to play a role in the treatment plan. Ensuring that the patient follows a balanced diet

rich in nutrients can help overall health and energy levels. Some patients might find certain dietary changes

helpful, such as avoiding foods that trigger adverse reactions or increasing intake of anti-inflammatory foods.


Pain management could be another component, as some ME/CFS patients experience chronic pain. This might involve

over-the-counter pain relievers, prescription medications, or alternative approaches like acupuncture or physical

therapy tailored to avoid exacerbating symptoms.


Cognitive difficulties and brain fog are common in ME/CFS, so strategies to improve cognitive function or work

around these issues could be part of the treatment plan. This might include memory aids, breaking tasks into

smaller steps, or incorporating mindfulness practices to help maintain focus.


Orthostatic intolerance, which involves symptoms like dizziness or fainting upon standing, might require specific

interventions. This could involve increasing salt and fluid intake, wearing compression stockings, or using

medications to stabilize blood pressure.


Psychological support is crucial for dealing with the emotional and mental challenges that come with chronic

illness. Counseling, therapy, or support groups can help patients cope with frustration, anxiety, or depression

related to their condition.


Lifestyle adjustments are probably necessary to adapt to life with ME/CFS. This might include modifying work or

school schedules, setting realistic goals, and learning to prioritize activities based on energy levels.


Exercise is a bit tricky in ME/CFS because overexertion can worsen symptoms. However, gentle forms of exercise

like yoga or swimming might be recommended if they don't cause significant post-exertional malaise.


Alternative therapies such as massage, chiropractic care, or herbal supplements could be considered based on the

patient's preferences and what their healthcare provider advises.


Medications might be used to manage specific symptoms. For example, antidepressants in low doses can help with

sleep or pain management, and certain drugs might be prescribed to alleviate orthostatic intolerance.


Monitoring and follow-up are essential parts of any treatment plan. Regular check-ins with the healthcare provider

allow for adjustments based on how well the patient is responding to different interventions.


Education and support for both the patient and their caregivers can empower them with knowledge about ME/CFS,

helping them make informed decisions and improve their quality of life.


Overall, a treatment plan for ME/CFS would be highly individualized, focusing on symptom management, lifestyle

adaptations, and emotional well-being. It requires collaboration between the patient and multiple healthcare

professionals to address the diverse effects of this condition.

</think>


The development of a treatment plan for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a

comprehensive and individualized process aimed at managing symptoms, improving quality of life, and helping

patients adapt to their condition. Here is an organized approach to creating such a plan:


1. **Multidisciplinary Team Collaboration**:

- Work with healthcare providers experienced in ME/CFS, including specialists from various fields such as

rheumatology, neurology, immunology, physical therapy, psychology, and nutrition.


2. **Symptom Management**:

- **Pacing**: Implement strategies to balance rest and activity, avoiding overexertion. This may involve

scheduling regular rest periods and setting realistic daily goals.

- **Sleep Hygiene**: Establish a consistent sleep routine and create a relaxing bedtime environment. Consider

medical interventions if necessary.

- **Pain Management**: Utilize appropriate medications or alternative therapies like acupuncture for chronic

pain.

- **Orthostatic Intolerance**: Recommend increased salt and fluid intake, compression stockings, or medications

to stabilize blood pressure.


3. **Lifestyle Modifications**:

- **Nutrition**: Encourage a balanced diet rich in nutrients; explore dietary changes that may alleviate

symptoms.

- **Exercise**: Recommend gentle forms of exercise such as yoga or swimming, tailored to avoid post-exertional

malaise.

- **Stress Management**: Incorporate mindfulness practices and psychological support to address anxiety and

depression.


4. **Cognitive Support**:

- Use memory aids and task management strategies to help with cognitive difficulties.


5. **Alternative Therapies**:

- Consider massage, chiropractic care, or herbal supplements as complementary approaches.


6. **Medications**:

- Prescribe medications for symptom-specific relief, such as antidepressants for sleep or pain management.


7. **Monitoring and Follow-Up**:

- Schedule regular check-ins with healthcare providers to assess treatment effectiveness and make necessary

adjustments.


8. **Education and Support**:

- Provide patients and caregivers with educational resources and support groups to enhance understanding and

improve quality of life.


This structured approach ensures a holistic treatment plan that addresses the multifaceted nature of ME/CFS,

focusing on symptom relief, lifestyle adaptation, and emotional well-being.
 
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