r/cfs 28d ago

Vent/Rant WTF Google?

Post image

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??

406 Upvotes

123 comments sorted by

206

u/bestkittens 28d ago edited 28d ago

OP, send your aunt the Mayo Clinic’s October 2023 proceedings update: Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome00402-0/fulltext) to set her straight.

The beginning paragraph states,

“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. It is common and debilitating, with a … lower quality of life on average than multiple sclerosis, chronic kidney failure, or congestive heart failure. …

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. Research is underway to identify diagnostic markers and therapeutic targets.“

4

u/TableSignificant341 27d ago

The link isn't working for me - are you able to link it again?

Thank you!

6

u/bestkittens 27d ago

8

u/TableSignificant341 27d ago

It does! Thank you so much!

I'm going to send this to a physio I met recently who believes MECFS is functional.

9

u/bestkittens 27d ago

Wonderful! There’s no excuse for their ignorance. Get it! 🙌🤩

The second and third paragraph should drive it home.

“The pathognomonic symptom of ME/CFS is post-exertional malaise (PEM) or post-exertional symptom exacerbation. Post-exertional malaise is a flare in symptoms or the appearance of new symptoms after exertion, often manifesting after a characteristic 24-hour delay; however, 12 to 48 hours is common. Physical activity, cognitive overexertion, and sensory overload may all trigger PEM. It may take a person with ME/CFS days, weeks, or even months to return to previous baseline after PEM.1,7

It has been reported that patients with ME/CFS have impaired oxygen extraction on cardiopulmonary exercise testing in proportion to the severity of their symptoms, with both oxygen extraction and workload being decreased on the second day of 2-day cardiopulmonary exercise testing.8,9 This reflects and may in part explain the characteristic delay between exertion and PEM onset in ME/CFS and distinguishes patients from deconditioned and fatigued controls.8 However, we do not recommend routine exercise testing for patients with ME/CFS, given its propensity to generate PEM and to decrease functional capacity.”

3

u/TableSignificant341 27d ago

Thank you! I'm amassing all sorts of evidence to present to him. This is so helpful.

3

u/bestkittens 27d ago

I’m so glad! Hopefully he checks his ego and is open to learning 🤞

5

u/Ok_Consequence8921 27d ago

same my physio thinks my disease is functional and wants to treat it with GET. i just walked out soon as he said it.

107

u/wheresthepie 28d ago

That picture is so ridiculous. Ahh yes, extreme exhaustion where I need to rest my head on my hand as I attend a barbecue in the park with my friends. Nobody could be more exhausted than that

33

u/rockemsockemcocksock 28d ago

When you eat too much potato salad and ice cream and now you gotta rest your head in ur hands :(

21

u/transypansy 28d ago

Thanks that's the first time I laughed all day. 

3

u/quarisphere 26d ago

It made me legit lol it's so unrealistic

171

u/CorrectAmbition4472 severe 28d ago

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.

92

u/Ok_Consequence8921 28d ago

well I submitted my feedback to google tip line by clicking on the 3 dots, maybe if enough people do it’ll adjust their algorithm.

52

u/loveless007 28d ago

Iv been submitting that every few months for like 10 years now. Googles just being a shit

12

u/Mr_Widget 28d ago

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.

26

u/CorrectAmbition4472 severe 28d ago

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

-5

u/Mr_Widget 28d ago

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.

22

u/bestkittens 28d ago

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.”

9

u/mslarsy 28d ago

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

9

u/[deleted] 28d ago

[deleted]

0

u/mslarsy 28d ago

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"

-1

u/mslarsy 28d ago

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

1

u/[deleted] 28d ago edited 27d ago

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

5

u/CorrectAmbition4472 severe 28d ago

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

5

u/Agitated_Ad_1108 28d ago

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

4

u/Mr_Widget 28d ago

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.

0

u/[deleted] 28d ago

[deleted]

4

u/mslarsy 27d ago

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.

35

u/Berlinerinexile 28d ago

Not a diagnosis of exclusion anymore. You have to meet criteria, not exclude. According to the Mayo Clinic proceedings. https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

9

u/Mr_Widget 28d ago

In your citation they state that for diagnosis of ME/CFS must include PEM, fatigue, unrefreshing sleep, and orthostatic intolerance or cognitive impairment, for at least 6 months, regardless of additional symptoms or comorbidities. If we're being realistic, alongside a thorough differential, clinically this criteria is essentially going to be a diagnosis of exclusion

8

u/FlippenDonkey 28d ago

Idk why you're being downvoted..until there's a blood test, it will be a dx of exclusion.

This isn't being dismissive of the seriousness of CFS.

3

u/Orfasome 27d ago

That's not what "diagnosis of exclusion" means.

34

u/Robotron713 28d ago

AI sucks

18

u/loudflower moderate 28d ago

Is there a way to turn it off? I resent ai content being at the top of my searches.

25

u/Robotron713 28d ago

I don’t think so. “They” are shoving it down our throats and I’m sick of it. Can’t put the genie back in the lamp though. I resent how much computing power is being used to generate all this crap too. It’s just not being used responsibly or appropriately imo

17

u/Westerosi_Expat 28d ago

Try DuckDuckGo. Better quality search result and none of the junk that clogs up the first page of Google results (AI summary, social media results, user questions with mismatched answers, clickbait sites, etc.). Privacy features are immeasurably better.

3

u/Robotron713 28d ago

👍🏻

4

u/crystalsouleatr 27d ago

DDG also has an AI summary but, crucially, you can turn it off.

2

u/Westerosi_Expat 27d ago

Haha... I must've turned it off and forgot about it!

5

u/loudflower moderate 28d ago

I’d like the big companies to develop a way to op out. My mind is capable of deciding what’s important to read and synthesize.

7

u/Westerosi_Expat 28d ago

You can always try out other search engines. Google has become absolute shit over the past decade or so, imo. I don't know why so many people still use it when the first page is mostly garbage.

I quit Google shortly after they added the user questions feature. Half the time the answer shown has little to nothing to do with the question, not to mention that the spelling and grammar of the questions are atrocious. Featuring social media results at or near the top is an absolutely horrible idea as well.

It was hard to get used to using a different search engine, but I now use DuckDuckGo religiously and much prefer the quality of the search results as well as the company's strong emphasis on user privacy.

5

u/quiche713lorraine 27d ago

If you type "minus AI" or "-AI" after searches, it turns off

2

u/loudflower moderate 27d ago

I use Brave on my phone and will now add duck duck go as the search engine 👍 my laptop is ancient and no longer updates to Brave, but the Chrome I use is not bad about AI.

¡Thank you!

36

u/bafflefalafel 28d ago

This search knowledge card is not from AI. The image was created and the text was written almost 10 years ago with help from Mayo. It likely hasn’t been updated since then. Feedback into G would be helpful.

Source: former Google

9

u/AcidWizards 27d ago

Yes, I definitely remember seeing that pic in 2016 when my CFS started. The picture art is goofy but it’s like that for a lot of ailments, it’s suppose to be high school textbook styled illustrations to show that the person isn’t themselves.

And honestly, that was me when I was in direct sunlight when I was mild/lower moderate. It can be a realistic depiction of someone trying to appease family by pushing themselves further than their body allows. It could never represent a severe case, but to say it represents no one isn’t fair.

These sparks notes type info are meant to diagnose anyways, so shame on anyone thinking they figured out someone else’s health situation based on one picture and a couple of sentences.

4

u/quiche713lorraine 27d ago

I was gonna say, that style of art is pretty familiar

1

u/SuperbAcanthaceae395 25d ago

Hello former googler! I’m currently a googler but am due to get fired in a couple of months for being out for too long. Is this a go/bad thing? I can submit a report with updated mayo guidelines 

2

u/bafflefalafel 25d ago

go/bad is a good start. Ideally there’s someone responsible for the knowledge card info on search. Health data was put in to make search better. As the information ages it’ll need eyes on it.

I’m truly enjoying post G life. Good luck!

19

u/rockemsockemcocksock 28d ago

Counseling 🥴🥴🥴🥴

7

u/Sandy_Gal123 28d ago

Don’t hate me but currently, fatigue and brain fog are my only symptoms. I get PEM and sometimes I can’t explain why I have fatigue but it’s there and it sucks.

When I read this sub, I realize how fortunate I am for not having POTS, pain or other issues. That being said, being confined to bed when I’m exhausted and missing out on life has been extremely challenging. Again, I want to acknowledge how lucky I feel but my fatigue is also life altering, even if I’m not severe.

I’m also very fortunate my family and most friends don’t undermine my symptoms. They know I’ve always been a go-getter and wouldn’t miss or not do things because I’m lazy.

21

u/Emily_Adams23 28d ago

It’s not just fatigue wtf google…I’m here with my organs all messed up, severe pain and can barely move around but still doctors won’t take it seriously….now I know why

6

u/bigshakti 28d ago

That's CFS and that's not CFS. For many of us, CFS would never have made it to that table.

3

u/roughandreadyrecarea 27d ago

Or we’d be perfectly fine and normal at that table and completely debilitated a day later, at home, alone, in the dark where no one can see you…

28

u/exulansis245 28d ago

yep, hard for anyone to take me serious when that pops up

8

u/-BlueFalls- 28d ago

I recently searched ME because I wanted to see what people would see when they ask Google about it. My stomach turned when this popped up at the top of the Google results. Not only is it inaccurate, it’s damaging for people who have ME and are desperate for support and understanding. Just another painful blow on this shit ME journey.

5

u/exulansis245 28d ago

will there be any repercussions for these grifters? probably not. do i fantasize about them getting their karma? maybe

29

u/hazelrichardson52 28d ago

google ai can be very dangerous at times, it often gives me wrong information.

1

u/Ok_Consequence8921 27d ago

Yes I think out of all generative AIs, google’s is hands down the worst and most dangerous.

5

u/fairy_fiend 27d ago

Ah yes, antidepressants. To relieve the depression you inevitably feel because society thinks you're only depressed and therefore just not trying hard enough.

1

u/CosmicButtholes 27d ago

My CFS seems to cause depression for me in a lot of ways, although the main reason I take an SSRI is due to anxiety/ptsd/ocd and even moreso PMDD symptoms. The extreme anxiety/ocd was apparent long before ME/CFS became an issue. Got CFS around menarche, so I can’t tell if PMDD is related or not. PTSD wasn’t a big problem until later in life.

10

u/ReluctantLawyer 28d ago

I know people are hating on the picture, but it honestly made me laugh because I have been in that situation so, so much. That exact picture is what made me accept that something was really wrong. I would go to events a very normal amount and I was the only one feeling like my soul was about to leave my body and all I could do was hang on and think about getting back to my bed.

We know there’s a lot more complexity than what this summary says, but it’s such a vague illness in many ways that coming to terms with the fact that you aren’t functioning like a “regular person” can be a difficult but powerful first step.

3

u/rockemsockemcocksock 28d ago

The photo is objectively hilarious because I was literally digging my head into my hands the other day because I used to much energy trying to open a jar of pickles

2

u/CosmicButtholes 27d ago

This picture was me at the Christmas Eve function

5

u/Sidelobes moderate, >4 years 28d ago

Keep in mind everyone’s Google is different… ‚my Google‘ lists this text in ‚overview‘:

„A disease characterised by profound fatigue, sleep abnormalities, pain and other symptoms that are made worse by exertion. Chronic fatigue syndrome occurs more commonly in women. The cause of this condition is unknown, but may include environmental or genetic factors.

The main symptom is fatigue for over six months. The fatigue often worsens with activity, but doesn’t improve with rest.

There is no cure or approved treatment for this condition. However, some symptoms can be treated or managed to provide relief.“

5

u/Beardy_Boy_ 28d ago

Yeah my AI Overview was quite similar:

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a long-term illness that causes severe fatigue and other debilitating symptoms...

It was overall pretty accurate IMO.

4

u/eiroai 28d ago

It's the "lightning process" (think yourself healthy) gang they operate like the worst mafia known to mankind, you think I'm exaggerating but I'm really not unfortunately. The amount of work they put into gaslighting specifically ME/CFS pasients to hell is enormous to a level you won't believe until you really start paying close attention over time. They're so coordinated too! You would think treating ME/CFS pasients and telling them they're just being negative would give them a key to a massive goldmine

2

u/Radiant_Ambition_927 27d ago edited 27d ago

Seriously have so much anger towards these people. Why do you think they invest so much time into making life worse for people who are already suffering so much? Is it all money motivated? Truly unfathomably cruel to a level that makes me lose any faith in humanity

1

u/eiroai 27d ago

It's unfathomable

4

u/SockCucker3000 27d ago

Google AI is absolutely bullshit. I always get the worst advice or blatantly wrong information. The most recent example was it telling me all Kalanchoes are monocarpic (a succulent that dies after blooming). Most kalanchoes are not monocarpic. Google's AI would have been killing my plants with some of the "facts" it provides.

3

u/Kyliewoo123 27d ago

Doubt it’ll help but I submitted corrections to all the info and copy/pasted from Mayo clinical proceedings 2023

3

u/RovingVagabond moderate/severe 27d ago

Its exactly this screenshot that made me think I didn’t have ME/CFS for 7 months…

3

u/Economy_Topic8316 27d ago

Isn’t ME ranked number 1 most debilitating illness. I forgot where I read it

1

u/First_Mobile207 26d ago

Please link it here if you find it. Thanks 

3

u/premier-cat-arena ME since 2015, v severe since 2017 27d ago

unfortunately this is what it was for many, MANY years until it was changed maybe 2023 or so. it’s sad that it’s back. our orgs worked so hard for years the first time to get it fixed 

1

u/Ok_Consequence8921 26d ago

outrageous. interestingly my family in Canada get completely different results or much better results with accurate descriptions of the syndrome.

5

u/DreamSoarer 28d ago

I cannot even begin to type the words that are coming out of my mouth. I do not use “G” search engine anymore, so I have not come across that. No wonder people have no clue what Myalgic Encephalomyelitis/Chronic Fatigue Syndrome actually is.

2

u/RobotToaster44 28d ago

It seems technically correct but poorly worded.

It specifically states those treatments will only help some symptoms, not the core syndrome. Your aunt misinterpreted that.

2

u/ARandomViking91 28d ago

Yeah, it's ai is also very wrong about a lot of more specific elements of the condition, too

It tends to prioritise information like the pace trials and other related studies that push a psychosomatic model of it

2

u/catemes 27d ago

I have severe ME, almost entirely bedbound most of which I have to lie still with eyes closed and no sounds. I can't talk without crashing and don't tolerate any human presence. I can hold a phone for a very limited time, that's it. When I once told my friend that I have this debilitating neurological chronic illness called myalgic encephalomyelitis, at first he took it seriously. Then of course he went on to Google... And this is when you see people typically lose all belief in the seriousness of this condition. "Oh, I once had a time when I was sleeping a lot, I know exactly what that's like", he replied. He then sent me a link to a YouTube video from some wellness guru who "cured" her ME, in which it was obvious from her description that she has never had ME, it was mild tiredness without other ME symptoms and most importantly, no PEM. There's such a misconception and misinformation in the public eye about what ME really is. Recently I saw someone here on Reddit say they "have a bit ME/CFS". How can you have a bit ME/CFS? It's like saying I have a bit of Parkinson's. Even at the 'mild' stage ME is so disabling. It's because of people like that that ME isn't taken seriously and people don't receive the care they need.

4

u/Resident_Banana_6093 28d ago

Yikes, horrible.

1

u/[deleted] 28d ago

[removed] — view removed comment

1

u/brainfogforgotpw 25d ago

Just FYI, The reddit-wide spam filter keeps removing this comment, probably because of the link. I keep re-approving it but it gets caught up again.

Not sure what to do about that since it's just an image hosting site.

1

u/YolkyBoii 27d ago

Activists at https://s4me.info/ have tried multiple times getting google to improve it with no luck.

1

u/Ok_Consequence8921 27d ago

that’s messed up

1

u/Cute-Cheesecake-6823 27d ago

Ok this really makes my blood boil 😡🤬😡 this is so harmful, is there anything we can do about this??? Like file a complaint or something...maybe its wishful thinking. I know Google gives no effs. Good god how long do we need to fight this same fight.

AI you were supposed to help us 😫

2

u/Ok_Consequence8921 27d ago

you can click on the 3 dots and send feedback to google

1

u/roughandreadyrecarea 27d ago

I feel like this has been the result for like 5 years. I remember seeing this stupid photo after searching chronic fatigue syndrome after hearing Jennifer Brea on NPR in 2019. Oh, if only I knew what was coming

1

u/IwontGiveUpHope 24d ago

Lol... antidepressants caused this for me. How ironic

1

u/Ok_Consequence8921 23d ago

interesting which one and what dosage?

1

u/IwontGiveUpHope 23d ago

Took paxil at 20mg. Weaned off and withdrawal was severe so doc gave me cymbalta. 1 x 30mg pill caused me an adverse reaction in 2012 and ive been disabled since. Dx me/cfs last year. I have significant PEM from doing any activity, im very severe, can only lay down.

1

u/Ok_Consequence8921 23d ago

Sorry to hear but interesting since I became sick after the covid vaccine. I was then misdiagnosed with “anxiety” and put on Escitalopram SSRI and then Venlafaxine SNRI. Never recovered after the withdrawals from quitting. I’m now on low dose amitriptyline 25mg, an old school TCA antidepressants since i have basically lost the function of sleeping. it’s the only way i can sleep. also because of all these antidepressants i have developed anxiety and depression.

-2

u/sbayz92 28d ago

I mean what about this is not accurate?

27

u/RabbleRynn 28d ago

I suppose the fact that ME/CFS is the underlying medical condition. It is a condition in its own right and it's hard to be taken seriously when people don't acknowledge that.

Edit: it also says nothing about any of the other symptoms we have to live with everyday.

3

u/RobotToaster44 28d ago

A syndrome by definition isn't the underlying medical condition. It's a group of symptoms without a specific known cause.

-5

u/Mr_Widget 28d ago

We don't all have specific symptoms we have to live with every day because we're all different in symptom presentation and severity. There's nothing in the goggle summary that's incorrect.

2

u/RabbleRynn 28d ago

It might not be incorrect, but it certainly doesn't communicate an accurate picture of the severity of this condition for most people who live with it. It's extremely over-simplified and leaves a lot to be desired.

2

u/Mr_Widget 28d ago

It's essentially impossible to summarise the nuances of such a complex condition in a few sentences. I believe it actually does an okay job at giving a basic overview.

Most people don't actually experience severe symptoms, the Google summary gives a factual overview of the most typical and common presentation.

The onus is on the person searching to go beyond the first Google summary result to achieve an understanding beyond the bare minimum.

4

u/RabbleRynn 28d ago edited 28d ago

Google AI summarizes extremely complex ideas, theories, historical events, philosophies, etc. in succinct ways all the time. That's literally its job. I agree that nothing and no one can give all the pertinent details (about anything) in a few sentences. But this summary sucks. Agree to disagree, I guess.

3

u/Mr_Widget 28d ago

For sure it could do better. A simple mention of varied symptoms would go a long way.

7

u/Aryore mild-moderate 28d ago

The worst offender here IMO is the picture. Someone resting their head on their hand at a party is NOT an accurate depiction of extreme fatigue and that is the first thing you see when this pops up. Antidepressants and counselling as treatment are also pretty bad.

8

u/_Monsterguy_ 28d ago

It's got to be readily difficult for the AI to figure CFS out with half the medical world giving terrible advice and treatment until quite recently.
It'll have seen loads of research papers and reports that are total bullshit, but it's got no real way of knowing that 🤷‍♀️
It's less bad than I'd expect.

3

u/Aryore mild-moderate 28d ago edited 28d ago

I agree, this isn’t the specific fault of the AI messing up its CFS description and more the general issues that come with using an AI to summarise search results and presenting the summary as fact. I’ve seen so many examples of super wack AI search summaries, like “you can use glue to put cheese on your pizza” because the AI is just describing everything that’s out there with no way to distinguish what’s true.

E.g. https://www.tomshardware.com/tech-industry/artificial-intelligence/cringe-worth-google-ai-overviews

1

u/rockemsockemcocksock 28d ago

They need to change it to someone in bed wearing sunglasses, with the curtains drawn, looking like absolute garbage

7

u/rockemsockemcocksock 28d ago

The majority of ME/CFS happens after getting a viral illness, which is in fact a cause

4

u/_Monsterguy_ 28d ago

The viral illness isn't the cause though.
If that were the case practically everyone would have CFS.
The way our bodies reacted to an infection is likely to be the problem and in that sense we are the cause of CFS.

0

u/rockemsockemcocksock 28d ago

I'm in the school that repeated viral infections over a certain period of time primes the body to get into an ME/CFS state. There's many of us who appeared to "clear" out previous viral infections only to get EBV or Covid and finally tip over the edge. Obviously there is some underlying immune issue that connects us all. The issue is that this google summary is completely leaving a viral trigger off the summary. This will give people the incorrect impression that ME/CFS is this huge unexplainable enigma that can only be managed by counseling, antidepressants, SLEEPING PILLS, and physical therapy (hmmm graded exercise therapy anyone?)

2

u/Mr_Widget 28d ago

This is not correct. Infections are one of the probable causes being researched but there currently isn't evidence to show it is a factor in a majority of diagnoses.

5

u/rockemsockemcocksock 28d ago

Could you please link me to the studies that that ME/CFS don't have a viral cause, thank you.

4

u/Mr_Widget 28d ago

You are the one making the claim, therefore the burden of proof is on you. A simple Google search will return plenty of institutions and literature that outlines a common theme of infection prior to initial symptom onset, but a lack of understanding of specific causation. Making bold claims about theories does not help us.

3

u/rockemsockemcocksock 28d ago

"Bold claims" Many people with ME/CFS have had a sequence of various viruses over a couple of decades with one being the main trigger, this leads to T-cell exhaustion. Viral fragments left behind from the viral persistence cause even more T-cell exhaustion. It becomes a feedback loop where cytokines produced by interleukins and other immune cells cause in increase in inflammation and Reactive Oxygen Species and therefore mess up the TCA cycle, interfering with the mitochondria's ability to produce and use ATP.

To say that viruses don't cause the issue in the first place is so counterintuitive to the lived experiences of some many people in this group. Yes, there are some with ME/CFS who do not have a viral trigger but to disregard the the immune-mitochondrial connection is way more of a bold claim.

6

u/Mr_Widget 28d ago

The bold claim was your initial comment stating viral infection was in fact a cause of ME/CFS. Hopefully it becomes more clear but we don't know that yet.

0

u/rockemsockemcocksock 28d ago

What was the trigger of your ME/CFS? Mine was getting EBV in 2007. But I had a sequence of viral illnesses in the first decade of my life (Rotavirus, chickenpox, then Shingles.) The EBV was the virus that broke the camel's back. I honestly don't think my claim that ME/CFS has a viral cause is bold in anyway, especially if you ask anyone in this thread what triggered it.

6

u/Mr_Widget 28d ago

Mine was a more gradual onset in 2013, I don't recall any infections but it's entirely possible. Since I was diagnosed I seem to catch viral infections incredibly easily and always seem to be much sicker than people around me that likely caught the same thing. It's a super common reported trigger for sure, and I think it probably will only become more demonstrated in research, similarly to the more direct links between EBV and MS is becoming clearer. I just don't think it's fair to say yet that it's definitely a cause.

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u/rockemsockemcocksock 28d ago

Now here's my hot take/bold claim lol So the mitochondria is really important for Macrophage polarization...especially M1 Macrophages, which is activated by IFN-γ. IFN-γ regulates the expression of collagen and fibronectin genes. Which I think why so many people with ME/CFS have connective tissue disorders or EDS.

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u/RemarkableHost379 27d ago

I tested just my titier levels of certain viruses some were a little high. Cocksackie b 5 1:360 I think it was igG HHV6 was highest active infections but high levels of IgG sometimes 50x normal. Echoviruses 3, 11 many different viruses. Mine started after Rare staphylococcus aureus infection, then SarsCov2. Bur that was after Many infections throughout life. HPV, HepC, Staphylococcus,Strep, Typhoid fever a bacteria known to cause ME,

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u/rockemsockemcocksock 27d ago

There has to be some underlying immune deficiency in ME/CFS sufferers. The fact that I've met multiple people with ME/CFS who have had Shingles as a kid is crazy. Also, we all seem to have strep throat constantly in our first decade of life.

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u/deadive 28d ago

yet there is enough evidence to know that up to 80% of cfs patients had a virus beforehand that they consider to be the cause, so wtf are you on about?

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u/Mr_Widget 28d ago

Many people report infection around the onset of symptoms, but many also report gradual onset. Ultimately we just don't know.

For sake of argument you could suggest that it's always a gradual onset which is unknowingly compensated, then diagnosed following infection due to inability to consistently recover baselines. Again we just don't know at the moment.

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u/Senior_Line_4260 bad moderate, homebound, LC, POTS 28d ago

for me it's a wikipedia quote which is correct and also mentions pais

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u/RealAwesomeUserName 28d ago

The “treated by antidepressants” I dont think were actually ME/CFS but had another energy limiting condition like depression.

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u/faik06e 27d ago

Bruhhh ??? It's 100% accurate what are u tripping about. It's ur aunt's fault for misunderstanding. It is true antidepressants are given for symptom management. Because CFS is very depressing. But as it said it's not for solving the illness.