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

[John Mac]

Why Many ME/CFS ‘Recovery Stories’ Aren’t Recovery Stories at All​

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There is a pattern I see in almost every so-called “recovery” story that makes the rounds online, especially the ones tied to coaching or spiritual rebranding.

1. The illness was never severe. You can tell they were operating at maybe 60% of normal, not 10%. They still had homes, jobs, social lives, or the energy to “go on retreats”. The language is not the language of severe disability— no mention of caregivers, shower seats, blackout curtains, or social security payments.
2. They conflate general wellness with treatment. If you drop everything and focus entirely on optimizing health — sleep, nutrition, trauma, stress — almost anyone can claw back 10–20% of function from wherever they start. But that’s not recovery, that’s compensation. The illness didn’t disappear, they just maximized the parts of the system still capable of responding.
3. They quietly redefine normal. When the story includes “listening to my body,” “slowing down,” or “needing to be gentle with myself,” that’s not recovery, that’s adaptation. They’ve shifted expectations downward to make life bearable, not reversed the disease. If you still have to pace, still crash, or still flare from stress, you didn’t recover – you’re just managing.

Every “I healed myself” story like this creates the illusion that this illness is curable or treatable — or worse, that people who are severe just haven’t “figured it out” yet. It undermines advocacy, funding, and the credibility of patients who are genuinely disabled.

 

[Chandelier]

Beautiful comic:

 

[Chandelier]

A pwME created a short (10min) interactive story game where everyday tasks and small challenges become overwhelming.
It is expected to be available starting from 1. December and will cost £1.99.

Hi all,

Ive had M.E and long covid for 5 years

Last year I got funding from Arts Council England, Deaf and Disabilty Arts Festival and FACT Gallery in Liverpool (uk) to work on a short digital project about M.E. I worked on it slowly for over 6 months, mostly from bed and worked with an access consultant and a sound artist and got feedback from other people with energy limiting conditions during the process.

After a 2 month run as an art exhibition at FACT gallery the game "It's Not You, It's M.E" is now up for wishlist as a pc game on steam with an expected release date of December 1st 2025.

I know that M.E can effect everyone differently and this is mostly about my personal - being mostly housebound. But Im hoping it can be a tools to help raise awareness or as one way to show people the day to day impact.

If you'd like to wishlist, you can at the link below, which will help with visability. If your interested will be £1.99 on release.

Created by a solo developer, It’s Not You, It’s M.E. is a game you can’t win — a brief, interactive story where everyday tasks and small challenges become overwhelming.

it’s inspired by the lived experience of Long Covid and M.E., simulating one week in the life of a fictional version of the person who made it.

This short (around 10 minutes) narrative point-and-click includes a hidden mini-games that often feel impossible to complete.



Featuring original music by Jack The Robot.

 

[SNT Gatchaman]

An example of FND diagnosis in practical use.

In my last appointment with the sleep clinic I broke down after they told me I need to start pushing myself to retrain my brain. I recently got diagnosed with FND (by a horrible neurologist who said ME is made up by attention seekers and shouted at my mum and me that he has more important patients to see, so he told me my issues are FND and didn’t explain any further). I think at the sleep clinic they confused my FND diagnosis with my ME and don’t understand PEM.

 

[Chandelier]

The Mind-Body Problem:

 

[rvallee]

Those who got this disease recently in 2023-25 what did you think of long covid before?

One of the most common themes in the dismissal of Long Covid remains that it's talked about plenty and also that it's no longer a problem (said since early 2021). And it's all total bullshit. A cover-up in plain sight, as evil as any other like it.

 

[SNT Gatchaman]

A post with a few replies from people who continued to exercise and experienced a slow decline in function until it all just stopped. Basically —

ME/CFS patients: I was very fit and I continued exercising until I crashed out to bedbound.​

Doctors: Yes, you're deconditioned. Have you tried exercising?​

I used to be a gym fanatic/rat, going 5–6 times a week. Over time, I felt my energy and recovery gradually decline, until eventually I had to give it up completely. I never knew what my initial trigger was, and I didn’t notice a sharp drop in my health. It happened slowly over about a year. Looking back now, it’s clear, but at the time, I had no idea what was happening. I wish I could go back so badly.

I was just confused why exercising felt like it was getting more difficult and I felt like I was getting less strong despite going to dance classes 4x a week.

I started off (very) mild and could work full time and work out, but something felt off the day after working out. I had no idea what was going on, and it took a couple of years to get the diagnosis, but I had already deteriorated significantly by them.

It took eight months for me to become completely incapacitated after catching covid at the gym. I know it was eight months because I was still logging my workouts. You can see the steady decline in the log until the day I decided it wasn't worth even trying to go.

it's something i'm really bitter about to be honest. i originally was mild, but i used to be a dancer + super into all sorts of exercise. the people around me told me the usual when i began struggling with stamina etc: "just keep pushing!" it stayed consistent for about a year before really rapidly declining where i started collapsing during activities. i feel the same way you do; awareness would have made a gigantic difference, or at least i like to imagine it would've.

I didn't know that repeated PEM and pushing through could cause deterioration. I only learned that when it was already too late. My deterioration was slow and steady over 2 and a half years. By the time I was diagnosed and knew about PEM causing deterioration, I was already severe.

having a very low resting HR it's hard to be taken seriously if you go to the doctor saying your resting HR is now 60 and you feel like crap. Because that's still in the lower end of optimal, but my usual was 40!

 

[Utsikt]

Story of my life..

«I tried doing more, everything from exercise to short and slow walks. I’ve only gotten worse when doing that.»

- You should try doing a bit more. The people that dare to try again are the people that get better.

«Could it not be that everyone usually do too much sometimes, and the people that naturally improved are the ones that got away with doing more without getting PEM? It sounds a lot like survivorship bias to me.»

- Stop being so critical. I have years of experience with this, I know what I’m talking about. There is a way forward for everyone, you just have to find it.

«The only periods where I’ve ever experienced stability or improvements were when I tried my best to not do too much. Maybe that’s my path.»

- No, you can do more. Your body will get used to it. You have to listen to people’s experiences and learn from them. Think of what’s important to you and prioritise that. I can see that your spirit is still high, that’s a good sign - people like you do better. It’s important to have hope.

«What about my experiences, are they wrong when they don’t align with yours?»

- The truth always lies somewhere in the middle.

——

Of course this narrative is very appealing to those around me, so now I’ve got to deal with it on a daily basis from people that are healthy and very, very intent on using all their energy to «help» me.

 

[rvallee]

A post with a few replies from people who continued to exercise and experienced a slow decline in function until it all just stopped. Basically —

ME/CFS patients: I was very fit and I continued exercising until I crashed out to bedbound.Doctors: Yes, you're deconditioned. Have you tried exercising?

What's shocking about these is how they are both so common and numerous. They are as easy to find as homeless people in large cities. One just has to look around and you can't miss them. But just like most people can overlook what they see, not see the humans for who they are, physicians are content with imagining that none of us are real, just fakers on social media pretending to be something that does not exist, just for attention.

We have long passed the point at which medicine bears as much responsibility for continuing harm as the tobacco industry did. The scale is not quite the same, something like half a billion people died as a result of smoking, and millions continue to. But we are at most one order of magnitude removed from that. The level of responsibility is equal, though. This is systemic evil.

It says so much about human nature that this can go on, and why as a people we can't even solve simple problems anymore unless it's motivated by profit, and then only for the purpose of maximizing the extraction of money from people's wallets.

 

[rvallee]

I made a game about living with M.E. and it's out today.

 

[Yann04]

This is cool. It seems very short so perhaps most useful as an educational thing.

I think it’s maybe a bit of a shame its paywalled since they got funding from the arts council for it, and it has educational potential, and is very short.
But I guess I understand for a lot of pwME we need any money we can get and the game is very cheap anyways.

 

[SNT Gatchaman]

Another example of GET associated with worsening of symptoms to severe.

My doctor, who had diagnosed me with CFS, had been encouraging me to "push through" my pain and fatigue, and maintain a schedule with regular exercise that I would incrementally increase the length and intensity of. So you know, GET.

I had gone from mild to severe over a 5 year period, my baseline having deteriorated the most in the couple years I trusted and complied with my doctor's "treatment".

In the past few years I have gone from having the ability to walk, cook, go outside, attend social events, participate in community moderation and event planning, being able to take showers, go to the grocery store for myself, drive, care for my pets, and care for myself to being unable to leave bed without repercussions, I can't stand for more than a few minutes at a time. I am sicker, weaker, more in pain, and more disabled than ever. I struggle to eat, bathe even with assistance…

 

[PageofME]

What's pretty difficult for me to understand is that patients keep going back to their doctors even when they're already on a course of deterioration. Given that as soon as you have an ME/CFS diagnosis you can read on Wikipedia that PEM is the hallmark symptom and that your only chance at stabilisation and avoid deterioration is to try to avoid more flares as good as you can with pacing and energy management.

I don't want to blame these people for not stopping to go back to such doctors. But I think that ME advocacy organisations should definitely put some advice out there on how to break away from a doctor that is harming them and certainly not go back and trying to change them. This dynamic strongly reminds me of abusive relationships where the victims famously might need a dozen attempts to break away from an abuser. (Happened to me with the abuse I experienced in my family)

 

[MrMagoo]

What's pretty difficult for me to understand is that patients keep going back to their doctors even when they're already on a course of deterioration. Given that as soon as you have an ME/CFS diagnosis you can read on Wikipedia that PEM is the hallmark symptom and that your only chance at stabilisation and avoid deterioration is to try to avoid more flares as good as you can with pacing and energy management.

I don't want to blame these people for not stopping to go back to such doctors. But I think that ME advocacy organisations should definitely put some advice out there on how to break away from a doctor that is harming them and certainly not go back and trying to change them. This dynamic strongly reminds me of abusive relationships where the victims famously might need a dozen attempts to break away from an abuser. (Happened to me with the abuse I experienced in my family)

I think that’s a really good point, because people don’t know “how” to break away. You’re pretty vulnerable and hanging on to the idea that the medical professionals will somehow help you. How do you explain to everyone -family, friends, employer etc that you don’t want “medical help” any more? Let’s face it, most people around you at this early stage do think you need to try harder/burnt out/depressed and now you want to give up? You don’t want to get better?

We hear stories of people who quit traditional medicine and took up yoga/veganism/raw juice diet although that’s often people who just recovered or were just burnt out or are trying to sell you Herbalife juice.

We don’t see stories of “the Dr was a horror, the physio was a bully and the counsellor was gaslighting me (thanks GET with CBT) I decided to disengage, read about pacing and living with ME online and now things are much more stable” yet that’s where we all end up.

 

[PageofME]

How do you explain to everyone -family, friends, employer etc that you don’t want “medical help” any more?

For the German speaking countries there was a consensus statement published a year ago with the lead at Charité and the collaboration of another 30 specialists and patient avocates from all three countries. At the end of it there are three pages of references that deliver the evidence that GET and CBT are harmful and pacing and symptom management are the course to take. Don't you have something similar in the UK, US, Australia?

We had also covered the harm that was done to ME patients in rehabiliation clinics in the media quite extensively with bedbound patients caused by GET portrayed in all three countries.

Is it maybe also a problem that patients don't consult the mainstream media and "official" patient advocacy websites anymore but only seek advice in their wellness bubbles on social media?

 

[MrMagoo]

For the German speaking countries there was a consensus statement published a year ago with the lead at Charité and the collaboration of another 30 specialists and patient avocates from all three countries. At the end of it there are three pages of references that deliver the evidence that GET and CBT are harmful and pacing and symptom management are the course to take. Don't you have something similar in the UK, US, Australia?

We had also covered the harm that was done to ME patients in rehabiliation clinics in the media quite extensively with bedbound patients caused by GET portrayed in all three countries.

Is it maybe also a problem that patients don't consult the mainstream media and "official" patient advocacy websites anymore but only seek advice in their wellness bubbles on social media?

Erm, as frequently referred to on this site the NHS clinics are terrible, do not implement NICE guidelines, BACME pushes the disregulation model, most clinics are run by “Rehabilitation” physios, yes GET is bad but “pacing up” is fine. There is a world of double-speak and no real culture change despite news articles. We have Simon Wessley on the NHS board right now…and the ME Association publishing articles that we need to get out of bed and move.
Our clinics only see you for a few months anyway, then you just have to go to the GP. All parts of the NHS have a remit to promote healthy eating and exercise at all appointments, if I see someone about a cervical smear test they will ask about diet, weight loss and exercise too. Nobody, absolutely nobody looks, sees an ME/CFS diagnosis and decides to change advice. I will always be encouraged to exercise even if I have an ingrown hair causing a boil on my leg.

Australia I understand is much worse, and USA is private healthcare so it depends on the local Dr/ Hospital.

 

[Alinda]

What's pretty difficult for me to understand is that patients keep going back to their doctors even when they're already on a course of deterioration. Given that as soon as you have an ME/CFS diagnosis you can read on Wikipedia that PEM is the hallmark symptom and that your only chance at stabilisation and avoid deterioration is to try to avoid more flares as good as you can with pacing and energy management.

I don't want to blame these people for not stopping to go back to such doctors. But I think that ME advocacy organisations should definitely put some advice out there on how to break away from a doctor that is harming them and certainly not go back and trying to change them. This dynamic strongly reminds me of abusive relationships where the victims famously might need a dozen attempts to break away from an abuser. (Happened to me with the abuse I experienced in my family)

When I was doing my CBT & GET / pain rehabilitation thing ("just ignore pain and fatigue, because it isn't harmful. But that doesn't mean your experience is fake!!!!! Trust."), I started reading the arguments against it because I felt so horrible. But if you are told, that giving up and that those (thinking about illness, or giving up the treatment) thoughts are the sole reason you are ill, it turns stopping into a choice for illness. The silly part, is that the doctors All noticed that there was 0 progress, I wasn't able to even absorb anything they said to me. Because of that, they actually asked me if I wanted to continu, as they didn't see any point to do so, to which I very much responded "YES!?".

I had just spend 6 months inside, waiting to start this program. I wasnt going to throw away that time by stopping the only treatment that seemed to exist!

Edit: they also hadn't told me I had "me/cvs" at this point. They told me it was dysautonomia and somatic symptom disorder. A year later, I asked another doctor if I was diagnosed with me/cfs, and was told I had been this whole time.
Might have been intentional, not sure.

 

[Trish]

What's pretty difficult for me to understand is that patients keep going back to their doctors even when they're already on a course of deterioration.

We also have the examples of other diseases where the treatment, such as chemotherapy can make you feel much sicker before it cures you, so both doctors and patients are accustomed to giving and receiving encouragement to persevere with treatment despite the unpleasantness.

Some ME/CFS clinicians even make up nonsense about 'setbacks' being a normal part of the recovery process, showing you are doing well. Also some specifically advise pwME not to listen to the charities advice to rest and pace, claiming people are just afraid of exercise, misinterpreting symptoms as signs of illness, and even that they want the 'secondary gains' of being on disability benefits.

All lies, but so easy to get caught up in when a trusted 'expert' is in charge.

And yes, we do have the NICE guidelines, but clinics and NHS leaders are doing their best to subvert them.

 

[PageofME]

This is all very sad and tragic and it makes me angry to hear it all too.

I didn't realise the situation in the English speaking countries was still so difficult. Here, we heard about NICE guidelines and were jealous that patients in the UK already had an official document that disencouraged from exercise.

I wouldn't have imagined that new guidelines then just wouldn't be read and implemented by providers.

 

[PageofME]

When I was doing my CBT & GET / pain rehabilitation thing ("just ignore pain and fatigue, because it isn't harmful. But that doesn't mean your experience is fake!!!!! Trust."), I started reading the arguments against it because I felt so horrible. But if you are told, that giving up and that those (thinking about illness, or giving up the treatment) thoughts are the sole reason you are ill, it turns stopping into a choice for illness. The silly part, is that the doctors All noticed that there was 0 progress, I wasn't able to even absorb anything they said to me. Because of that, they actually asked me if I wanted to continu, as they didn't see any point to do so, to which I very much responded "YES!?".

I had just spend 6 months inside, waiting to start this program. I wasnt going to throw away that time by stopping the only treatment that seemed to exist!

Edit: they also hadn't told me I had "me/cvs" at this point. They told me it was dysautonomia and somatic symptom disorder. A year later, I asked another doctor if I was diagnosed with me/cfs, and was told I had been this whole time.
Might have been intentional, not sure.

I am so sorry to hear that happened to you. That holding back of the correct diagnosis was completely irresponsible. No matter what the intention was, I find.