Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

[Jonathan Edwards]

Would you like me to copy paste this as an answer saying it’s from you and a link to your post as proof?

Sure.

 

[SugarSquared]

Sure.

Thanks! Here it is.

 

[SNT Gatchaman]

FYI Jo, the name given when signing up on Reddit is a random mish-mash of words. Some people change the name up front but many keep their assigned names. Anyway welcome to Reddit u/Longjumping_Emu_2863 !!

 

[Hutan]

"Longjumping_Emu_2863", LOL

Jonathan's post on reddit:

I have no idea what AI invented my username but I am the person quoted above, Jonathan Edwards.

My point was that up until now so much of research and folklore around ME/CFS has focused on things for which we have no reliable evidence-base and which do not fit with a basic biological analysis of the clinical picture anyway.

I understand that people with ME/CFS want something to hold on to but to my mind the way forward is to forget the folklore and embrace the science which is now just starting. The DecodeME data are, for all intents and purposes, cast iron. They tell us what pathways to look at. Colleagues are now doing that. The research landscape has been transformed. And an important reason why that is so is that DecodeME has NOT found evidence from genetics of involvement of pathways that have been popular in the past. The only possible link to mitochondrial function pointed the wrong way for mitochondrial impairment to make sense. Nothing came up for mast cells. Nothing came up for connective tissue disease. These things are important.

 

[V.R.T.]

The immune system may well be involved too, with the link to BTN2A1, but probably not adaptive immunity in terms of antibodies or specific T cells (which link to HLA genes).

I was wondering if you could explain this business, because I find it confusing. If specific t cells link to HLA, does that mean that any specific t cell set that might be pathogenic in a disease would have an HLA link, including gamma delta t cells? Or is it the case only for the adaptive immune system, and because gamma delta t cells are innate immunity (or at least partly so) they are still a possible culprit?

The other day you said that the t cells involved might just be regular t cells, which confused me too.

 

[V.R.T.]

It would be good to get BTN researchers in Cambridge involved but I don't have time personally at present.

Thats fair enough. Its important someone contacts them I think. I could draft an email but it might be better coming from a more scientifically adept member, if anyone has the capacity. I'd hate to be the one to fumble the approach. But I will do it if it needs doing.

 

[Jonathan Edwards]

I was wondering if you could explain this business, because I find it confusing. If specific t cells link to HLA, does that mean that any specific t cell set that might be pathogenic in a disease would have an HLA link, including gamma delta t cells? Or is it the case only for the adaptive immune system, and because gamma delta t cells are innate immunity (or at least partly so) they are still a possible culprit?

The other day you said that the t cells involved might just be regular t cells, which confused me too.

A good question. This is very complicated. It is probably best to work from the actual data we have rather than rationalise. The rheumatic and skin diseases we know of that seem to be due to overexcitability of T cells have HLA-A,B or C genetic links. Blocking T cell cytokines helps. The usual explanation is that the shape of the HLA molecule that holds antigenic peptides and presents them to T cells determines the likelihood of the error underlying each of these diseases from tripping.

But that may well be wrong because HLA A,B,C are involved in other signals like binding natural killer cell receptors (which may not be just on natural killer cells!). Nobody knows why HLA-B27 makes such a difference and they should do by now.

So your question is pertinent. For antibody-related diseases I think things are easier because most of the autoantibody related diseases are linked to HLA-D genes where the story is cleaner. An absence of an HLA A,B or C link points away from T cell involvement and maybe also NK involvement but does not exclude either completely.

I am not sure about the reference to regular T cells. Again, that is complicated. In rheumatoid arthritis T cells contribute to the autoimmune process but as far as we know they are no different from other people's T cells. It is the B cells that are making the wrong specific antigen receptors (antibodies). Regular T cells take part in all inflammation, including a stubbed toe.

My thinking at the moment is that the BTN2A1 link may be telling us about the involvement of an 'immune' pathway but one that is designed for normal body housekeeping, not for defence against pathogens. Like the 'immune system' macrophages in bone marrow whose main job is to eat the useless nuclei extruded from red blood cells, we may be dealing with T-like cells that check for bad lipid handling or something.

 

[Dolphin]

From a post on X:

It makes me so mad when I go on Reddit and see doctors and health care workers bashing those with chronic illness.

Calling us mentally ill. Saying we’re faking. Mocking our diagnoses. Acting like we want to be sick.

These are actual comments from medical professionals discussing patients with POTS, EDS, MCAS, ME/CFS, and other complex chronic illnesses

“MCAS is one of the most frustrating new age fake diseases… absolutely insane patients that need a psych consult more than a medicine patient.”

“No, these people are lying. It is part of the EDS/POTS/dysautonomia psychogenic illness cluster. They are almost always self diagnosed after learning about those disorders on social media.”

“Most of these patients suffered a post viral illness… then instead of getting out of bed and shaking it off they just plugged into the online echo chambers and stayed in bed. Forever.”

“When I read EDS and POTS in the same history, I know what I’m in for.”

“POTS, EDS, MCAS, and don’t forget gastroparesis. They all need feeding tubes and central lines and opiates and benzos are the only thing that helps. It’s mostly young women and, from what I’ve seen, a lot of them start out with eating disorders.”

“ I find these types of patients incredibly annoying.”

“ It’s all part of the sicktok trend.”

“The people with MCAS need psychiatry, not a medical doctor for their problems.”

“Each one is trying to outdo the other in the ‘who’s the most ill’ game.”

“In psych, the unholy TikTok triad is DID, autism, and Tourette’s. … Many of them ask to be worked up for EDS, POTS, and MCAS. Blue hair is a frequent marker. The underlying diagnosis is almost always borderline personality disorder.”

“It was fibromyalgia. Then it was chronic Lyme. Now we see MCAS, EDS, dysautonomia, POTS.”

“POTS patients can be fucking exhausting. They’re putting ports in a lot of them now for their fluids… You are a fucking 21 yo with good veins, why the fuck are you trying to bully me into sticking a port?”

“I refuse to see these people.”

If you’re a doctor or medical professional reading this, these comments aren’t harmless.

You don’t have to understand every illness but you do have to treat your patients like human beings.

We do NOT want to be sick.

 

[Jonathan Edwards]

You don’t have to understand every illness but you do have to treat your patients like human beings.

That is the nub, but treating people as human beings does not necessarily mean agreeing with the four bogus diagnoses some fringe physician has given them. MCAS and hEDS are essentially bogus and POTS is poorly formulated. Dysautonomia is ambiguous and lrgely inappropriate. But I know from experience that there are people who refuse to believe that their 'expert physician' is talking biobabble.

 

[Hutan]

the four bogus diagnoses

There's actually the Septad ... because more diagnoses must surely confer more credibility on the patient, and demonstrate special insight...

SEPTAD

me-pedia.org

The SEPTAD include:

• Ehlers-Danlos Syndrome / Hypermobility
• Dysautonomia and Postural orthostatic tachycardia syndrome
• Mast cell activation syndrome
• Chronic infections (for example, COVID-19, Lyme, Coxsackie B4, Epstein-Barr Virus)
• Gastroparesis and Small intestine bacterial overgrowth
• Autommunity
• Neurosurgical conditions (e.g., craniocervical instability, atlantoaxial instability, tethered cord syndrome, Eagle’s syndrome)

The name was originally coined by clinicians who are members of the MASTerminds listserv

The organisation claiming to represent people with ME/CFS nationally in New Zealand is promoting this concept.

 

[SugarSquared]

That is the nub, but treating people as human beings does not necessarily mean agreeing with the four bogus diagnoses some fringe physician has given them. MCAS and hEDS are essentially bogus and POTS is poorly formulated. Dysautonomia is ambiguous and lrgely inappropriate. But I know from experience that there are people who refuse to believe that their 'expert physician' is talking biobabble.

That’s the fine line that needs to be treaded, isn’t it. Respecting people and believing that their symptoms are real but the names they’re attaching to them probably aren’t. I wish doctors understood they can do both. Being dismissive just pushes people further into the biobabble mess.

 

[Chandelier]

From r/cfs:

Made a post on a popular subreddit about my experience being bedbound for severe ME awareness day​

and got an unexpected flood of support and understanding :')

so far there's been one singular hate comment that got deleted bc they weren't a part of the sub before so I can't see the whole thing (the first part says "you're making a lot of excuses. chronic fatigue syndrome is re," which I'm guessing is followed by "real, but..."

I looked them up and they're a doctor

0% surprised lol

BUT the main point of this is that I'm really touched by the overwhelming majority of people responding to it and happy that some people are more aware now than they were before I wrote it

edit: previously wrote they were in med school but I was wrong, they're a full on MD (still not surprised)

Thread on r/GirlDinnerDiaries:

I've been bedridden for a year and five months bc of my mom​

Today is severe M.E. (myalgic encephalomyelitis) awareness day. I've been bedridden with very severe M.E. since last April.

April 2025 - April 2026 was what I'm now calling my Hell Year because my symptoms were so extreme that I couldn't tolerate light or sound and literally laid in bed with no distractions and constant pain, discomfort, and tinnitus anytime I wasn't asleep. At my very worst this past February, I was too weak to use the bathroom lying down in bed and clean myself on the same day, so I had to ask for direct help from my caregivers. I haven't been able to shower this whole time, and I always feel so dirty. There's so much more that I feel so embarrassed about all the time. It's hard for me to look my current nurses in the eye because I feel so gross about myself, not just physically but all around.

My symptoms were a bit up and down that year, but I didn't make any major progress until this past April, and now I'm able to watch movies, listen to podcasts/voice memos, and even talk on the phone for limited periods of time (longer if I'm not actively participating in the convo and mostly listening). Physically, I've improved much less, so I'm still in bed 24/7, although I can sit up for a few seconds a few times a day. It's a totally different world for me, and I'm still struck by how low my quality of life is in absolute terms despite the relatively huge improvement.

At first I was in shock and just couldn't believe I'd gotten better. I'm still improving, but my progress has slowed down again, and I get really scared whenever I think about my future/the grand scale of my life. Getting better has ironically made that worse, since I was mostly afraid of continuing to decline and dying and couldn't think beyond the day to day during the Hell Year. This illness has dismantled most of me within three and a half years, and some people end up bedridden for decades. I already feel like a ghost.

I wouldn't be bedridden now if my mother hadn't disbelieved me/denied that I was sick and getting sicker when I was living with her and treated it like mental illness. (She compared it to "mainlining heroin in [my] room." I think she was reliving trying to save my father from his ultimately fatal alcohol addiction. He died when I was young.)

I found out that she'd been planning to ambush me/force me to go to a psych hospital last March (2025) because she accidentally sent me an email intended for the director of the hospital. It had been bad there since I moved back in with her a few years prior after an unexpected breakup that changed my plans to move somewhere new with my ex while we were long distance, but I realized I had to leave at that point even though I was terrified it would take away the last of my ability to care for myself.

I scrambled to move out with lots of help (both from friends and paid movers), and the whole ordeal ended up making me much worse. My mother is 77 but is very youthful/active for her age/much healthier than me and is trying to reconnect.

She texts me sometimes, and I try and gray rock her, but I don't know what to do long term about this relationship or just anything. She still doesn't know my new health status. I'm terrified that she might try and intervene if she finds out I'm bedridden now and make me worse again. My brother has been very cruel to me about it and believes I'm faking my illness. I miss my nieces and nephews and my friends so much, and I often find myself wishing I had a mom who would take care of me even though I'll be 30 next year.

I don't really have much of a support system, and I feel ashamed that I have to pay strangers to keep me alive because I don't have a parent or significant other of any kind to care for me. I know it's a huge privilege to be able to afford that care, though. Many people with severe M.E. are much less fortunate than I am.

Dinner is a bunch of rice cakes plus a very bland sandwich (not pictured) because I'm nauseous today.

 

[Utsikt]

That’s the fine line that needs to be treaded, isn’t it. Respecting people and believing that their symptoms are real but the names they’re attaching to them probably aren’t. I wish doctors understood they can do both. Being dismissive just pushes people further into the biobabble mess.

It’s both the names and the belief in the explanations for the symptoms.

 

[Chandelier]

From r/cfs:


Thread on r/GirlDinnerDiaries:

Another post, this time in r/hypotheticalsituation, for Severe ME Day that got thoughtful and supportive responses in the comments:

Would you swap diseases with me?​

I have very severe myalgic encephalomyelitis. ME has the lowest average quality of life of any studied chronic illness, including cancer.

For every consecutive month you choose to live with the limitations of my illness, the genie who set up this challenge will grant you one wish. (No wishing for loopholes.)

I will acquire any and all diseases you have for the duration of this challenge, but won't have my ME. We swap back when you decide the challenge is over.

Some of my current limitations are as follows:

• Can't stand or walk
• Can only sit up for 5 minutes every hour
• Can't chew most food
• Can't process or tolerate much light or sound
• Can't lift more than 500g (1lb)
• Can't speak, or otherwise communicate well in real time
• Can't think complex thoughts (e.g. can't manage money)

If you exceed these limits then you keep my ME indefinitely and the genie is never seen again.

If you're not sure if you'd be able to do something, please ask! You're not allowed to do anything I wouldn't be able to do in real life.

The genie says you can have up to a month to prepare for this challenge before you accept, because it's feeling generous.

How would you prepare? How many months would you last? What would you wish for?

This post is for Severe ME Awareness Day (8th August). ME is one of the most common complex chronic illnesses, and a quarter of patients are mostly or fully bedbound.

 

[rvallee]

It’s both the names and the belief in the explanations for the symptoms.

Which is, ironically, a marketing pillar of psychobehavioral ideology: an acceptable explanation. Obviously it's bogus, they're clearly lying about it, and it's only used as a marketing tool, but the quacks keep saying how all that's needed is for patients to have an acceptable explanation for their symptoms, that this is what they offer.

Of course any bogus biobabble explanation will be accepted above any wishy-washy pop psychology mush, for similar reasons as "it's magnets!" as a pseudoscientific model for an impossible technology works better on most people over something like "the vibrational tuning of fundamental love energy", or anything that requires belief to work.

So the patients are doing exactly as expected: trying to find an explanation. And of course one that uses scientific language is preferred over anything from the self-help books section. Because this is not actually something that matters. The only thing that matters is getting the correct explanation, and of course that explanation will be rooted in biological and medical language. So in that sense those people are still far more rational than the official ideology marketed by the medical profession, despite being almost equally wrong.

Also all this filthy dismissal that is not just common in medical communities, and pretty much never objected to, is overt premeditation for negligence, and that will always be worse than people latching onto a bogus pseudoscientific explanation because the expert profession responsible for this is not actually responsible and refuses to do anything about it.

 

[SNT Gatchaman]

Another post, this time in r/hypotheticalsituation, for Severe ME Day that got thoughtful and supportive responses in the comments:

Sorry, this post has been removed by the moderators of r/hypotheticalsituation.

No explanation offered. The link still works so you can read responses prior to the post being locked.

Example reply:

Well, that was a huge reminder to feel less sorry for myself. I have Sjögren's Disease (autoimmune), lymphocytic interstitial pneumonia (severe lung disease), and hypertrophic cardiomyopathy (heart defect). I'm limited in what I can do and for how long, plus the recovery/rest time after doing almost anything. It sucks and is life changing, but compared to you, I'm doing fucking great.

I'll do a month for you, two if I can, so you can have a break. My body is quite problematic, but at least you'll be able to do some things. Sending hugs.

 

[neurophusion]

"The 'pink hair sign' is definitely something I’ve noticed."

"Yes definitely - usually have a streak of purple hair too."

"Blue hair is a frequent marker."

The doctors of Reddit have finally identified a biomarker that has eluded us for decades. But maybe pick a colour already, the stereotype and prejudice should at least be consistent. /s

 

[SugarSquared]

"The 'pink hair sign' is definitely something I’ve noticed."

"Yes definitely - usually have a streak of purple hair too."

"Blue hair is a frequent marker."

The doctors of Reddit have finally identified a biomarker that has eluded us for decades. But maybe pick a colour already, the stereotype and prejudice should at least be consistent. /s

Blue hair and pronouns. Stop the research, we found it.

What a beautiful mix of sexism, homophobia, transphobia, and ableism.

 

[Trish]

"The 'pink hair sign' is definitely something I’ve noticed."

"Yes definitely - usually have a streak of purple hair too."

"Blue hair is a frequent marker."

The doctors of Reddit have finally identified a biomarker that has eluded us for decades. But maybe pick a colour already, the stereotype and prejudice should at least be consistent. /s

What's it supposed to be diagnostic of?
Such old hat. Haven't they heard of the blue rinse brigade?
I remember older women teachers at my school with blue hair in the 1950's and 60's. Occasionally pink rinses too.

 

[Peter T]

What's it supposed to be diagnostic of?
Such old hat. Haven't they heard of the blue rinse brigade?
I remember older women teachers at my school with blue hair in the 1950's and 60's. Occasionally pink rinses too.

My grandmother had a very slight purple tint, design to create a sort of steel grey colour. Was this indicative of her Parkinson’s, this is a whole new field of diagnostics?