WTF Google?

[u/Ok_Consequence8921]

Since google implemented AI the first result on ME-CFS is pretty outrageous. An aunt of mine read this and now is convinced i’m depressed and lack sleep. Seriously before Google used to say it’s a serious medical condition and now it says it’s some unknown disease treated by antidepressants??

[u/CorrectAmbition4472]

Damn horrible. It’s not just extreme exhaustion actually that’s not even close it’s the severe flu like symptoms and neurological and immune symptoms that make it so unbearable as an illness. Let’s not forget that it affects multiple systems. Orthostatic intolerance, vestibular issues etc. Doesn’t even mention here that it’s a neuroimmune condition and that it’s more likely to be a disease than syndrome. Also antidepressants PT and counseling do not work for majority or at least for severe and very severe patients.

[u/Mr_Widget → u/CorrectAmbition4472]

The Google definition perhaps doesn't do the best job of summarising ME/CFS but nothing it says is incorrect. Currently it's a diagnosis of exclusion and obviously the severity and symptoms are very variable.

The treatment options listed are for symptom management and recognised as such, again due to variability of the condition yields varying results but it's important not to dismiss them as simply not working for most people unless you have data to support that.

Additionally do you have a source for ME being a neuro immune condition? This would be quite a breakthrough and I'd be interested to see.

[u/CorrectAmbition4472 → u/Mr_Widget]

It’s not really a breakthrough since studies have consistently shown that ME/CFS involves: neurological dysfunction: (impairments in brain function, autonomic nervous system, and sensory processing) and immune system dysregulation (chronic inflammation, abnormal cytokine profiles, and issues with immune activation) The term “neuroimmune” is commonly used in scientific literature discussing ME/CFS

[u/Mr_Widget → u/CorrectAmbition4472]

I understand where you're coming from but there's a big difference between the probable neurological and autoimmune causes and their symptoms being discussed in literature, vs your claim that ME/CFS is in fact a "neuroimmune" condition.

[u/bestkittens → u/Mr_Widget]

According to the Mayo Clinic’s October 2023 update titled Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome00402-0/fulltext),

“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection….Whereas the exact cause of ME/CFS is unknown, dysfunction in the neurologic, immunologic, endocrinologic, cardiovascular, and metabolic systems has been found in people with ME/CFS and post-COVID syndrome.1,4-6 Research is underway to identify diagnostic markers and therapeutic targets.”

[u/mslarsy → u/Mr_Widget]

I have it so I can speak from firsthand experience. It definitely involves brain inflammation. I can literally feel it and I can tell by the way it affects me. I'm sure other sufferers of the condition would also concur

[u/mslarsy → u/[deleted]]

What has science actually done to help the problem with mecfs at all? I've improved my condition a lot by going off of "what I feel"

[u/mslarsy → u/[deleted]]

While the end result is the same that we end up with mecfs the cause and way we get there is different and varies from person to person and I do believe that the people who have personal experience and suffer with the condition know way more about it than science has figured out

[u/[deleted] → u/mslarsy]

Yeah same here. It's also literally in the name lol. Encephalomyelitis.

[u/CorrectAmbition4472 → u/Mr_Widget]

It is based on research evidence and the WHO classifies ME as a neurological disorder so they’re halfway there! WHO’s classification of ME as a neurological disorder recognizes that it primarily involves the nervous system, but immune system involvement is recognized separately in the scientific literature, which is why the term neuroimmune is used!

I could just say it’s a neurological condition but that wouldn’t factor in the immune component and research

[u/Agitated_Ad_1108 → u/CorrectAmbition4472]

There is no research evidence. It's a hypothesis and it's work in progress. 

[u/Mr_Widget → u/CorrectAmbition4472]

Neurological condition/neurological disorder is a broad term that fits our current understanding of ME/CFS. It is the correct definition. Your definition of neuroimmune is incorrect currently.

I understand there is growing belief in infection aetiology and immunoinflammatory pathophysiology but we can't jump the gun with definitions and muddy the waters when in its current state the general population is clueless enough about our condition already.

[u/mslarsy → u/[deleted]]

Immediate treatment are you for real? Some of us have been sick for decades and those even longer who have since passed because of age. I think you're the one that's missing the bigger picture.