I removed their post and they have been banned from the sub. Please let us know in the future too if you see anything suspicious

Rookie mistake = confusing a random partial remission with recovery

Tbh I hate the way many of my fellow long-haulers casually talk about “recovery.” The research has come a long way in the two years I’ve had it, but we still don’t have proper diagnostic criteria, thus no criteria for what constitutes recovery. Ultimately a lot of people are creating false hope.

The likelihood of spontaneous recovery in the first year or so is pretty high. I know a few people who have had post viral illness and have recovered after about a year. Unfortunately what then happens is those people think they found the secret to recovery and that those of us who didn't spontaneously recover just need to try harder.

I guess Long Haul could be its own beast. My POTS/CFS arrived with inflammatory arthritis and every time it improved I convinced myself what ever I was doing at the time 'cured it' - still not cured 18 years later ;)

I think it's cute when people who've only had the illness a couple months think they're recovering because they spent more time in bed than normal. Like, "no you're not recovering that's just the natural eb and flow of the condition. You've not unlocked some hidden secret cure that the rest of us that have had the illness for decades are unaware of."

I like when they over exercise and confuse the delayed crash with recovery. I'm fine...oh hang on...

Agreed - Cute. Twee, quaint even.🙄

F this guy. To anyone looking for hope; I’ve gone thru using a wheelchair, a scooter, mostly bedridden, literally feeling like I was going to die soon. Now I’m walking without pain, can see my friends for up to 90 min., and feel pretty good most of the day. I can enjoy life and my family. Life can still be worth living, and symptoms can improve, so hang in there. Edit to add: thanks for the award! Anyone who needs to hear something sympathetic or hopeful, pm me anytime. Seriously.

Thank you for taking the time and energy to warn others about that deceptive post

Really appreciate that too

I also am someone that has recovered about 90%. LDN and Risperidone helped me go from completely bedridden to being able to be normal again within just a few months. Though I am an outlier whose CFS would come and go for years.

I also caught that and added it to the main thread. What a POS.

Real question: what would motivate a person to post a fake story like that?

Mostly mental illness and probably some loneliness as well. People like that often feel validation from the attention even if it's negative attention.

It feels like they actually were trying to convince themselves that WE are the mentally ill ones, keeping ourselves sick, and that we enjoy crushing the dreams of people with LC. Unfortunately, that’s not how it works.

When I first realized I had cfs and came here to try to understand this illness better it was super depressing because most of the people who responded to me were people telling me that cfs can never be cured and anything I did to try to get better was a waste of money. I was told the best thing I could do was to accept that I would be bedridden for the rest of my life because trying to recover would just result in disappointment and no meds actually worked for cfs. So I do get how some people feel like this community can be toxic but that's just a small percentage of people. I'm really glad that I didn't listen to those people because I'm close to totally better now. I think there are some people who feel like they HAVE to belive that cfs is incurable and if anyone improves its totally random and never has anything to do with meds or pacing because they don't want to admit that maybe they just never figured out proper pacing. It took me almost a year to actually figure out my real limits and finally start to make significant improvements. Pacing is insanely hard when you're already at the point of laying in bed all day but it's still possible.

What does “close to totally better” mean?

Like 90-95% back to normal. When I recently saw my cfs doctor he was ready to say I was in remission and wanted to change my diagnosis but personally I think that's a little premature. I've only been symptom free for about 4 weeks so I'm not going to go start running a mile every day or anything.

That's amazing, how did you get there?

Various different meds have been helpful, antivirals being the most helpful, but aggressive resting was also key. CFS is a hypometabolic syndrome meaning the body isn't able to produce enough enzymes, neurotransmitters, hormones etc to function well. Trying to push through symptoms just makes us worse and keeps us sick. Depending on what viruses/bacteria are altering the immune system different drugs will be more helpful. I had good luck with Valtrex but it needs to be taken at a high dose over a long period of time. Plus since it doesn't fully penatrate the blood brain barrier it didn't fully address my infection. I had to add an HIV antiviral to fully recover. Other things like nimodipine have been really helpful to.

I just responded here in another comment but my overall motivation for my post today (the post today was indeed real - longhaulers one was fake) was to help people and feel good about helping people, that's it. I tried extremely hard not to sell anything or promote dangerous ideas like pushing through pain.

>longhaulers one was fake Why would you do that to them? They didn't deserve to be lied to, and we didn't deserve for you to lie about us to them. There's no reason to believe you now, either. Trolling people with serious illnesses is really low. You need to take a long hard look at yourself and choose a better path.

Gtfo

I’m a long hauler of more than 2 years. The disgust I feel about you is incredible. You can fuck right off.

Why’d you delete it, bruh? Oh right: you’re a lying sack of shit who got caught in their own lies. I like how you think admitting to lying to Long Haulers makes this all okay, lol. So either you lied about having LC or you lied about having ME. Do you see the problem here? YOU’RE A FUCKING DISINGENUOUS LYING FUCK. Stay away from us.

I just removed it as a mod

Wow. It’s not always they get caught in their lies. Well done! How embarrassing. Happens all the time without us knowing though. They infiltrate these communities and share their fake stories. Did the person just delete the story in the covid sub?

Yeah they took it down, I should have realized they would and got a screen shot:/ They also said that mild cfs isn't real, PEM is vauge and can be caused by anything, and the definition of cfs is so vauge that it can't really be diagnosed. They also said some weird stuff about fatigue that made it clear that they didn't understand that cfs is more than just feeling tired occasionally.

It appears that they did.

That’s actually crazy how quick they are. Pretty scary.

I've never heard anyone here say not to exercise (if you feel able and go slowly). The only thing I've heard anything against is GET, and maybe aerobic exercise.

Thank you. That post was appalling.

I am glad you posted this. I found myself trying to be "open minded" regarding that post. I mean we are here to share stories and support each other. At least most of us are. I realized my mistake when op denigrated what they refer to as someone else venting about their current negativity. I have no problem with someone needing to come here and express to people that understand their struggles with this awful illness. To me the whole point is finding a community that does understand the depths of my misery. So-called triggering or negative posts do not upset me except to the extent that I wish I could reach out and help them and I can't. Where else are we supposed to do this? The whole world gaslights us. We don't need people on here doing subtle manipulation to ostracize people that are reaching out for someone to listen. And people like the op just can't help themselves from sounding judgy.

Why would people do this to other people? Shitty thing to do

Some people just suck

It's tough because people don't know what CFS is, and they think they do. I was diagnosed by 5 doctors in the first 6 months, two who were cfs specialists. I studied the illness for 20 years, yet I have people tell me I don't know anything about it when they just learned about it after getting long-term covid last year. Nuts. BTW after trying EVERYTHING I came across for 20 years I found something to put me in remission. So now those who know cfs say I couldn't have had it because I've gotten 85%recovered. I had my own electric wheelchair. Couldn't change my sheets. Was pretty useless for so long. Yeah I was really sick. Sigh.

What helped you?

As you can well imagine, it's not a simple 3 word answer. I created a protocol to get my body in the best shape possible to heal itself, but all it did was get me ready for something that would kill the organism that causes this damn illness. I tried absolutely everything I came across for 20 years, and found something that kills viruses without killing the host. Since the beginning I thought this thing was a virus. I've got a super strong science background (my career before I got sick), and so I was able to take this new thing I found and do trial and error on myself and find a combination that actually worked. I didn't expect it to work for a second. I was pretty surprised. It's a remission, not a cure, and my body has been trashed by 20 years of being really sick, but I can work and change the sheets on my bed and ride a bike. I'm really, really happy about those things.

So what did you do?...

PM me and be patient with a reply.

Bruh don’t listen to dudes with their own shitty “protocols”. They are crazy

Can you stop gaslighting or do you just have nothing better to do today...?🤔

If I can save one life it will be worth putting up with your misguided insults. I went to a number of different support groups in different areas for 20 years. I did not meet one person who was not very very sick. I did, however, meet a number of people who had other conditions, who would come to some meetings and then later return or call to say they'd discovered the real cause of their problems and had recovered and gone back to work. I also have met and heard of many who had killed themselves or attempted to. Also, if you've got an undiagnosed problem, you could potentially die from it. **Everyone in here is very sick**. **There is no doubt about that.** You need to not take on the illness as an identity so much that it's an insult to say you ought to be checked for other things. It's part of normal good health care to get tested for everything when you don't have a definitive diagnosis, which none of us do, since a test for this does not exist. We are sick. Let's make sure it's not something else. That's not gaslighting, that's good health care. If one out of 100 people has something different, which is likely, then it's worth all the testing to get that person back to a normal life, wouldn't you say?

Yes, testing is all well and good but your initial comment is completely vague. You give no examples of your 'science background', what you tried, or mentioned what you found worked for you. Most people (like me) are aware they became ill from an intial viral cause....that's pretty commonplace and obvious with M.E. Still, you don't really elaborate on that-? Again, you're being totally vague about 'the real cause' and it's completely wrong to bring up suicide. It's not hard to understand how living with chronic illness could lead someone to develop those feelings. The majority of people who frequent this sub will have no doubt tried many things in hopes of getting better and finding answers. Testing is one small and pretty obvious piece of the puzzle. Your comment just makes no sense, which is why I responded the way I did. You seem to enjoy trolling...🙄

I understand what you’re talking about and where you’re coming from but describing yourself as “useless” when you were severe is really offensive to those of us that way permanently. We aren’t useless.

I'm sorry if I phrased it badly. I was never useless and neither are you, but it sure felt that way at times. I felt all sorts of ways that weren't true. Feelings are that way. Being that sick is really tough to get through.

Absolutely, I’m sorry I didn’t mean to sound like I was criticizing but more bringing your attention to something you may not have considered. Being very severe my brain definitely tells me stuff that isn’t true about myself and I understand the *feeling* of being useless. But the reality is that technology often allows for us to do small things that give us meaning and make connections

Just their username alone is a big red flag for me...

Agreed.

Welp...I'm fifteen years into this M.E hell and at this point I have to laugh at people like this, it's nice to have a chuckle 😂 (Not so funny when it's a doctor with these views or someone legitimately trying to push a cure though. Smh😠)

Thank you

While that OP appears to have indeed been disingenuous, I'm still going to try the method. I feel like either way there's not a whole lot to lose. Either I sit here and never recover, or I try it, and maybe at best my mental health gets better I'll consider it a win. I'll give an update if it helps. There was another commenter in there who appeared pretty genuine who said a similar method was helping them.

Be really careful. Before I even knew what ME/CFS was I was treated by therapists who were trying to convince me it is all psychosomatic and I wasn't really sick. This worsened my mental health a lot and it was quite traumatic. In order to improve your mental health, you are much better doing the opposite. You should try learn to accept the fact that you are very sick and that there are no easy cures.

Interesting, yeah I don't think I'll see a therapist. I'm going to stick to the concepts in the original OP and see what happens. I saw a few recovery stories today that were really great - it was more focusing on accepting the symptoms but dealing with them differently. Like you're basically changing the way you view the symptoms. Then also just reinforcing the idea you will recover, doing the journaling, etc. I think the minute you accept that you are very sick and fucked, is the minute you have cemented your path of never recovering. I'm really starting to see a pattern here.

Accepting I was sick and fucked helped me move from severe to much less severe/moderate, because I understood how crucial it was to pace. Pretending I wasn’t seriously sick took me from mild to severe because I pushed myself to do more which made me sicker

I've basically already done this but you pretty much get stuck at moderate. I need something more.

The therapist still said my symptoms were really real and physical, just that I needed to change the way that I viewed my symptoms, just like you are talking about. My mental health has been so, so much better after accepting that I was very sick and I wasn't going to feel better anytime soon. My life has felt much more stable, and I now feel much less deperate for feel better. I have focused on finding ways to make my current like enjoyable, enjoying the small things, and I am much happier now! I still think it is possible for me to recover, but I am not desperate and it would also be totally ok if I didn't for a while.

Ah gotcha. Yeah I'm not fully versed on everything yet, but even just understanding the process of how this is happening is pretty interesting and I also have read it's instrumental to recovery. Like I could go to a therapist and have them tell me it's all real and to not be upset by the symptoms, but at the same time I think you need the knowledge of the process itself and why it's happening or else it's all just bs think well stuff. I'm really glad your mental health is good though. I did notice you said you think it's still possible for you to recover, something that I unfortunately don't think is equally shared in this community. I think that mindset itself is critical.

While recovery is possible for a select few, some degree of improvement is very likely for most people. I focus much more on improvement rather than recovery. Most people can improve to some degree and sometimes a lot utilizing pacing and some medicines. This mindset is much healthier because it is more realistic. Being realistic is important because you won't feel extremely distraught when things don't go as expected.

Yeah I can definitely get behind this sentiment. 100% agree.

Please know that it’s actual BS. If you have physical symptoms, psych stuff will do nothing. It’s probably the oldest scam in chronic illness. Edit: also, as OP shows here, these scammers are everywhere. We have no clue who we talk to online.

Ok I'm going to play devils advocate here and just say, what if it really has helped people, and what if it isn't actual BS? I'm going to follow the advice of spending $0 and see where it gets me. There's no way it can be good to have this mindset that you're fucked for life and you'll never recover. You're sitting here right now instantly saying it's bs but how can you actually say that if other people have recovered (let's assume OP is completely full of shit, what about all the others?). Like I said, at best I get better mental health and I won't be posting suicidal threads and comments in this subreddit like others have done here.

Just know that neural pathways have been co-opted by a lot of “mind hack” quacks, NLPs, life coaches, etc. It is quite true that a formed habit may be the result of an ingrained neural routing system. But it’s an enormous leap to say one could reprogram it or a series of them to alter a disease state, never mind many different ones. I think if it helps you deal with stress or responding to stress—then that could benefit any one of us, as stress is a culprit in a lot of our fatigue and perhaps even our onsets. I myself try not to respond so reactionarily to stress and anxiety and my symptoms. I don’t think it’s the key to my recovery, however. Good luck though.

I think all those coaches and stuff unfortunately hijacked the field. Unfortunately anything with a low barrier to entry will be subject to this kind of bs, like those chiropractors cosplaying as doctors on youtube. I plan to spend no money on this journey though as recommended. My original theory was that the symptoms start from underlying psychological trauma combined with some kind of viral infection or some kind of trigger (surgery, etc.). Until you solve the psychological aspect, I don't see how recovery is possible, assuming this theory is true.

Just know, I have CPTSD and someone like Gabor Mate would postulate a lot of disease is from HPA dysregulation or long term, unresolved stress/trauma. I’m not sure how you go about proving this but I did read a paper that those with CPTSD who developed ME had elevated cortisol levels compared to healthy controls. This might not be the exact paper but I’m too tired to look https://pubmed.ncbi.nlm.nih.gov/19124690/

Almost sounds like you might be on of the people who would benefit from a full on mind body approach if underlying CPTSD/stress/trauma is causing your symptoms. I'm curious if you've ever looked into that approach? And I don't mean like therapists selling courses and stuff, but just like reading up on Sarno concepts?

I hope the best for you. 🙏

This theory has been studied and is not true. [Here](https://pubmed.ncbi.nlm.nih.gov/33367564/) is the most well-designed and executed study showing no pre-existing psychological component to who develops ME/CFS after a viral trigger.

It’s the rabbit hole of thinking yourself well that’s dangerous. I did it too back when it was new. I just tried to warn you from it. Feel free to go ahead anyway. I get it, I’m not sure I’d listen back then either

I've been reading some of the general concepts today already about it and it doesn't appear to really be about thinking yourself well. I mean I think certainly that's a small part of it, but it looks like there's a lot more to it. That theytoldmeineedaname guy posted some pretty insightful comments in the thread that made more sense to me: https://www.reddit.com/r/cfs/comments/xble30/7_years_of_moderate_mecfs_100_recovered_2_year/io1curc/?context=3 I think it's just like, you probably will never recover if you have continually reinforced for years the belief and neural pathway that you're fucked. I can get behind that kind of logic. I think the rabbit hole of thinking yourself permanently fucked is far more dangerous.

Well bro… idk what to say. One thing though. Would you say that to MS patients? Cancer patients? No… In x years people will look back in disbelief at this pseudoscience Edit: anyway, as I said, just go for it.

Hell no lol, MS and cancer are not the same as CFS, not even close. The only resemblance are some of the symptoms. Listen, if an accepted biomarker comes out for CFS and a subsequent cure comes out, then fuck me you can make fun of me for the rest of our lives. I'm guessing none of that is going to happen though. I'd bet the farm 5-10 years from now there will be almost no progress made. This comment below in my opinion is spot on: https://www.reddit.com/r/cfs/comments/wxa572/do_you_its_possible_therell_be_a_decent/ilswr5c/?context=3

I never said a cure was close. It’s not. M.E. could be very similar to MS. Or other neurological illnesses. Also… Interestingly, the psych approach to this illness is why there have been no real progress. But yeah, people can and should try what they want. As I said, I did that too. It’s just frustrating when you find out it doesn’t help and the shrinks still somehow convinced proper doctors to ignore M.E. lol (And now long covid too)

> Interestingly, the psych approach to this illness is why there have been no real progress. I've heard this before and have always strongly disagreed with this kind of sentiment. Shrinks aren't convincing people to ignore ME/CFS, it's absurd especially since so many prominent health organizations have recognized it. Research doesn't just stop happening because some people think the symptoms are coming from the brain rather than some kind of severe disease. Otherwise there wouldn't even be research right now happening. The reason there is no progress is more likely because of the comment I linked above. Honestly I'd have to know exactly what you did and how long you did it / how consistent you were, but I'm going to go full on for 6 months and report back.

I don’t mean the ground level shrink. This [blog](https://illustratorinterrupted.blogspot.com/2021/05/i-caught-virus-and-never-recovered-part.html?m=1) explains the history in an easier way than the scientific papers on it. M.E. was originally a perfectly accepted illness until these people got involved. Pretty crazy reading.

I understand it too! Want to contact to go throuhg it together?

Go for it. Let us know how it works out. I plan to look at some of the stuff, but I'm in the moderate range for the most part because I did learn how to pace. I don't have the time or energy to look this stuff up right now.

Will do, my goal will likely be monthly updates even if I'm not recovering.

I found benefit in a self help book about acceptance and commitment therapy. Basically you do what you can with the life you have, there will always be suffering you have to try to live your best life anyway. GET (graded exercise therapy) has been shown to be harmful to people with ME/CFS it can make them permanently worse. There were studies and it is no longer recommended.

Oh yeah I will definitely not do GET, I don't think anyone recommended that though.

Things can always get worse

Lol I feel like all of you guys are the same. I'm sitting here like, fuck it I'm gonna try this for the hell of it, and your reply is just like "well you could always get worse". How am I honestly going to get worse from journaling and meditating and that kind of shit? I'm going to pace as recommend but jesus I think sometimes you guys go way too far.

Sitting down and doing nothing or meditating absolutely will help because by default you are resting. The more time you spend resting the better you will feel. You don't need to believe lies to recover, just do aggressive rest therapy instead.

Idk, based on what I'm seeing, excessive rest isn't doing much for people here. I mean yeah people aren't further crashing, but they also aren't recovering. I can only assume journaling and meditation, and whatever else is recommended can help, especially on the mental aspect. I guess I'm wondering how any of that is "lies"?

You can find several recovery stories online from people who used aggressive rest therapy. I started it last January when I was severe and now I'm much better and technicaly no longer fit the difinition of CFS because I no longer have unrefreshing sleep or things like orthostatic intolerance. I wouldn't say I'm fully recovered because I am still on medication to help with things like mild brain fog and fatigue. About 3 months into the ART I did start antiviral treatment and that seemed to acclerate my progress. So at this point it's hard to say for sure how much of my improvments are due to rest and how much are due to the meds but I never thought I would be able to get to this point. I was sick for 10 years and for 2 of those I was so severe I could barely think or talk at times. I was bedridden for about 3 months and thought I was dying. It was only once I was bedridden that I actually discoverd that I had cfs. I couldn't even get to a doctor because I could leave my apartment. Instead of fighting the urge to sleep I started doing the opposite and sleeping as much as I could and started doing as little as possible. After doing that for about a month and a half I was able to be out of bed more often and then was able to seek treatment from a cfs specalist. Meditation and therapy are very helpful for any type of mental health issue. I have cPTSD and I feel that it was very important for me to treat my cPTSD to be able to fix my body since having panic attacks is very exhausting. But that doesn't mean that CFS is a mental illness. Most people with CFS don't have a serious mental health issue. The doctor the other person posted about tells people that they just have to tell themselves that they are not really sick and ignore their symptoms and that's how they will recover. That's very inacurate. Physical illness is not caused by "stuck" emotions. There's no reserach that supports that.

Thank you for your comment. I agree CFS is not a mental illness, most certainly not. I would sort of disagree CFS patients don't have serious mental health issues though, it's almost impossible not to have mental health issues as a CFS patient. Many, many CFS patients have an underlying mental health history. > The doctor the other person posted about tells people that they just have to tell themselves that they are not really sick and ignore their symptoms and that's how they will recover. Agreed but from my reading today this is not really what they are pushing. I think there is a lot of ignorance to the approach because no one is actually reading it.

>I think there is a lot of ignorance to the approach They were specifically promoting the work of John Sarno, which is all about psychosomatically generated symptoms. Sarno was a rehab physician who wrote about back pain. When he was aged 75 he decided a lot of people's pain is just generated by emotional trauma and he doubled down on that in his 80s, especially about conditions he thought of as new-fangled. For anyone who keeps up to date with current scientific developments around the biomechanics and biochemistry of me/cfs, a lot of Sarno's ideas don't really make a lot of sense. By all means read it, but I would suggest you also look at the work of actual active research scientists like Jarred Younger and Warren Tate.

> They were specifically promoting the work of John Sarno, which is all about psychosomatically generated symptoms. The post mentioned he was a pioneer and named him because of that, but said the field has evolved more and there are more updated materials out there. I recall the OP being pretty adamant about not directing anyone to any one specific book or person. > When he was aged 75 he decided a lot of people's pain is just generated by emotional trauma and he doubled down on that in his 80s, especially about conditions he thought of as new-fangled. This is inaccurate - he began this work in the early 1970s when he was in his early 50s. His first published book on this was actually in 1984, so even if you used that as the date, he would have been 60 when writing it. I don't understand why people feel the need to make comments and criticism without researching the side you're criticizing first. > For anyone who keeps up to date with current scientific developments around the biomechanics and biochemistry of me/cfs, a lot of Sarno's ideas don't really make a lot of sense. It ultimately depends which studies and research you're looking at. There is also a lot of new research coming out that further cements the brain/CNS related approach, you can search central sensitization syndrome into google scholar for this. At the end of the day, one group is not fully recovering, and another group is, and it appears that the group following the Sarno approach has the better odds right now of full recovery.

Sorry for any inaccuracies, it's been years since I read Sarno. >It ultimately depends which studies and research you're looking at. If you want any kind of accurate picture you should look at as much data as possible, not cherry pick an approach. People in one discipline don't necessarily reach far out of their own research paradigm when looking at existing data, and that can lead to blind spots. As for the biomechanical basis of me/cfs, facts are facts. Physical findings that have been replicated in multiple peer reviewed studies in reputable journals, don't cease to exist simply because someone has a theory. \* I think that you and I are at very different places in our journey. I've been "fully recovered" once before in the last decade or so, but unfortunately it turned out relapses are a thing. At this point I know what works for me and what doesn't, and my goals are for a good life for myself that is sustainable long term, while continuing to respond to the scientific "best guess" which is always evolving. I also know what Im telling you to do with research, is easier said than done, and I kind of had advantages because of my training and institutional access to journals. For these reasons I wanted to put my perspective out there, but Im not about to argue with you. Whatever you choose to do, I wish you well.

Thanks overall for your perspective. Few comments: > As for the biomechanical basis of me/cfs, facts are facts. Physical findings that have been replicated in multiple peer reviewed studies in reputable journals, don't cease to exist simply because someone has a theory. This part I disagree with. The CFS research is still very much full of disjoined studies and preliminary findings that aren't replicated in high sample size double blind RCTs in high impact factor journals. There is no biomarker identified, let alone any kind of consensus yet by the widespread medical community regarding the origin of CFS and why and where symptoms are occurring and originating from. Your comment on blind spots is almost precisely what I mean. A CCI surgeon will diagnose most people here with CCI and perform expensive surgeries that end up making them worse in the vast majority of cases. A sleep super specialist will diagnose you with UARS and go that route. There is a pattern here. The only consistent thing I always see across CFS patients is an underlying psychological element. You seem to have entirely written off non-physiological elements already, so I know I'm not going to be changing your mind here, but absolutely nothing right now is certain about CFS other than the symptoms themselves being genuine.

Thanks to you too, what you say is interesting. It sounds like your experience of your specialists is different to what it's been like for me. I think it's a mistake to write off everything that doesn't provide a biomarker or disease aetiology. The story of me/cfs research is full of small factual details being reconfirmed, and plenty of it is good research. The "widespread medical community" is always at a large lag behind medical science, and rightly so. I don't have any particular investment in any specific approach being right or wrong, and still hope for a cure. I'm sure you do too. Good luck with everything!

Have you read anything that doctor recommends? His theory is literally that pain/fatigue is caused by mental illness in the form of repressed feelings. As a child who experienced a lot of abuse I had a ton of repressed feelings but physically I was perfectly healthy. I didn't get cfs until I had mono and then a major spinal surgery that caused nerve damage. Addressing my mental health was great for my mental health but it didn't cure my physical problems. Back when I was waiting to see doctors I spent months doing one of those nervous system "rewiring" programs where I meditated multiple times a day, focused on feeling healthy, told myself that I was healthy, etc on the off chance that it might help. Three months of that didn't significantly change anything. Real medical treatment was very helpful.

>based on what I'm seeing, excessive rest isn't doing much for people here I mean I went from bed bound barely able to move, to being able to do stuff like walk around a supermarket, go to the beach, play with my nieces, and run a small part time business from home. That was just pacing and standard meds, physio etc. At the moment Im back in bed because I didnt pace properly and relapsed, and Im posting on here way more than I usually do. It's your journey though, you do you.

I apologize and I responded in a separate comment to this thread. My story today was not fake. I wish you luck - again please do not spend money on any of this, and be sure to pace yourself. Don't over exert, just play it safe, but keep reinforcing the concepts. You will get through this. Be consistent.

All good, at least you owned up to it. I'm going to give it a real shot and report back eventually, I'll give it your 6 month time frame I guess. Either your post became the catalyst to my recovery, or you wasted my time, lol.

How did you determine that it is fake? I mean this guy didn't say anything about he doesn't believe he s sick and therefore he s healed. He said that LC can have similarities to CFS but it doesn't have to be CFS necessarily.

He admitted it himself so.. he posted on the LC sub that he had LC lol

Hi All, This was me. I would like to apologize for my older post on longhaulers (now removed) where I had been upset and threw shade at the CFS community. I had gotten pretty hostile responses from this community back then (this was during my recovery) and got upset and made a post on longhaulers about it. I made up a fake comment/story that I had long covid to at least come off as genuine in that community, but regardless of that, the story I posted today was absolutely **not** fake and I have no incentive or reason to lie about this. Literally the only reason I posted this was to give people some hope and another potential way out because it feels good to help people. I understand if mods want to ban me from here for the longhauler thread where I did throw shade at the CFS community. I'll definitely understand, but I do hope I helped at least one person today begin a path to recovery. I suggest reading some of u/theytoldmeineedaname comments discussing the role of the brain in CFS as he is much more elegant than I am. I will stop posting here other than any replies to this thread about me.

Dude, you obviously have some issues with this community. Your intentions are bad. You were caught in a lie. It was probably not your first (or last either).

To be honest, I do have issues with this community. It's overly hostile towards almost anyone who has recovered, and tends to be very close minded, even when you lay out everything extremely carefully (e.g. make sure to pace, do not spend money, etc.). My intentions with the longhauler post I had made a while back were indeed bad, but my intentions today were not. You literally do not have to believe me, frankly I do not care if you do. If I helped even only one person today then so be it, I will be glad.

Just remove yourself from it then. Posting fake stories is why people are frustrated. Fake stories hurt real people…

As I said I will stop posting here outside of this thread. Again, my story today was not fake, nor do I think it could hurt people. None of what I said could hurt anyone, but please let me know otherwise. I told people to pace strictly, I told people not to spend money, I was very careful.

You lied about having long covid AND recovering from it. You posted that shit in a forum with really sick people. Tbh you have zero credibility.

Post viral CFS is post viral CFS, whether it be from covid, EBV, etc. At least I'm offering a potential recovery plan that has worked for many people and literally costs zero dollars. Better than most of the bullshit here telling people they're permanently damaged. Gee what a great mindset that is.

>At least I'm offering a potential recovery plan that has worked for many people Prove it, then. It shouldn't be hard if it really worked for many people. Not a single study, and not despites the lack of funding and trying of the BPS lobby, has shown reliable improvements (to not even talk about recovery) with CBT, GET, or bullshits like the lightning process, meditation or similar brain rewiring pseudosciences. How is that possible if it really worked for many people, uh ? >Better than most of the bullshit here telling people they're permanently damaged. Gee what a great mindset that is. Would you dare say this to a MS or a cancer sufferer ? Mindset is completely irrelevant to recovering from a proven to be biological illness.

I did not push CBT, GET, or the lightning process. MC and cancer are not CFS. Until a widely accepted biomarker is discovered for CFS, a mind body approach is just as fair to discuss.

>I did not push CBT, GET, or the lightning process. I, luckily (as it means it won't do more harm), can't see your post. It's quite clear you pushed the same bullshit psychosomatic concept though, blaming people for their illness as they just haven't tried enough to recover. The usual BPS playbook. >a mind body approach is just as fair to discuss. You're free to discuss an unfalsifiable concept and pseudosciences, for sure. You may need to specify what the current consensus of NICE, the CDC, the NIHs, is before trying to push your dangerous beliefs though. And what the medical community discovered while finally realizing the truth about post viral illnesses with Long Covid. You shouldn't "discuss" this while masquerading it as a scientific discussion, though. You're free to talk about the lack of biomarkers for ME/cfs (that's the scientific name, CFS doesn't represent anything btw), but it's a weird argument when the only thing you're opposing it is not studies but religious-like beliefs about some mythical effect of an imaginary concept (the "mind") on illnesses and "stories" of recovery.

It honestly just sounds like you think you know way more than you actually do about ME/CFS, which pairs well with having to lie to get your message across. You're not the genius you seem to think you are boss

Tbh you have zero credibility

You’re not offering a fucking thing. Who the fuck do you think you are? Tesla? You doing a lot of research in your free time? Publishing a lot of papers? Patenting inventions? You’re an anonymous person who was caught lying, played off the lie, offered zero credible research about your recovery or anyone’s recovery regarding “TMS”—-not one paper, not one case study, nothing—and you have the utter fucking nerve to be like “well gee, after all I did for you guys!” FUCK. YOU.

For me all it took was seeing a youtube video someone posted to start my recovery. I hope this could apply to someone else. Sometimes just getting introduced to the concept is enough to be a catalyst to begin recovery.

Oh fuck! A YouTube video!? Why didn’t you say so earlier???? That changes EVERYTHING! Guys, he watched a YouTube video! False alarm! For a second, I was worried your education on the subject was narrower than a mosquito’s cock. Now I know it’s robust and girded with the information of a site that literally lets you post anything.

How can you expect anyone to believe you if you’ve already admitted to lying tho. If you are telling the truth you’ve got to understand no one wants to risk taking your advice if you thought it was worth lying to all the people suffering from long covid.

Pretty ridiculous that you have issues with a community you were never a part of... You weren't disagnosed with M.E and from what I can gather had long covid. Sure, that sucks but you really shouldn't be surprised when people who have missed years of their lives don't believe someone who recently fell ill and then more recently discovered a miracle cure. It does not ring true. M.E is not a somatoform or mental illness as you have suggested in other comments. Myself and many others have had this illness for decades and no amount of 'correct thinking', excercise or rest is a cure. Sure, we may experience some periods of slight remission but this illness doesn't just miraculously get cured and dissappear! I agree that people with any illness should try to find the positive in their situation and embrace the good that is in their life but in no way is that a cure and in no way should it be posited as one.