TMW You get banned from a me/cfs subreddit for speaking on misdiagnosis and "recovery/cure" stories

[Mary]

a good chunk of people on there have either gone down the rabbit hole of natural treatments (only talking about herbs, spices, vitamins, etc.

Hi @RyeRyeBread - I only want to address this one sentence. I do feel the same way as you about people who basically claim to think themselves well. I tried Ashok Gupta's program in 2007 or 2008 - and of course just kept crashing when I ignored how I felt. It's like trying to force yourself to walk on a broken leg telling yourself the pain is all in your head and expecting it to heal!

Anyways, I've had ME/CFS since 1998, when I first started crashing, and have been crashing ever since. In 2007 or 2008, I remember having the clear thought that I only had 1, or 2 if I was lucky, "good" days a month. A good day was a day when I wasn't crashed, or sick, or detoxing, or exhausted for unknown reasons, or wasted from lack of sleep, I can't remember all the reasons why I felt like crap. But even on a "good" day, I never felt well or had any appreciable energy.

That started to change in 2010 and in various increments thereafter, often a few years later - these things made me start to feel like a human being again: methylfolate, potassium (due to refeeding syndrome from methylfolate), vitamin B6, thiamine - really nice boost in energy, and phosphorous (refeeding syndrome due to thiamine), BCAAs - cut PEM recovery time in half, glycine - made huge difference in detoxing - basically put an end to it, after very carefully titrating it over 6 months. And most recently hawthorn berry product by Now Foods has gotten me sleeping halfway decently. Almost the entire last year was destroyed for me by extreme insomnia. I tried everything.

I still crash and still have to pace myself carefully, but I really do have days where I feel well, although I still have to limit myself in what I do. But I feel so much better in between crashing.

Anyways, I haven't found a single doctor with a treatment for ME/CFS. I don't think there are any who can successfully treat it. They can treat symptoms and co-morbid conditions but I think that's about it. I don't tolerate prescription meds very well. So when you talk about a "rabbit hole" of vitamins and herbs, I think you're doing a grave disservice to so many of us where they are the only things that have helped us. And amino acids too. You just might be missing out on some potential benefits from that rabbit hole!

I forgot - back in 2007 I did have a doctor who recommended something helpful - d-ribose. It DID help my energy. It was the first thing to do so since 1998. I was so grateful.

 

[wabi-sabi]

we need biomarkers

Or even people understanding and using the diagnostic criteria would be nice. I mean even CDC says you have to have PEM.

 

[RyeRyeBread]

On the happy side, I have been tested for Lyme and that's negative with and without the sage smudging

I'm kind of upset my negative Lyme test didn't come with some sage smudging tbh, would've added to the ambiance of the LabCorp blood test room

 

[RyeRyeBread]

Hi @RyeRyeBread - I only want to address this one sentence. I do feel the same way as you about people who basically claim to think themselves well. I tried Ashok Gupta's program in 2007 or 2008 - and of course just kept crashing when I ignored how I felt. It's like trying to force yourself to walk on a broken leg telling yourself the pain is all in your head and expecting it to heal!

Anyways, I've had ME/CFS since 1998, when I first started crashing, and have been crashing ever since. In 2007 or 2008, I remember having the clear thought that I only had 1, or 2 if I was lucky, "good" days a month. A good day was a day when I wasn't crashed, or sick, or detoxing, or exhausted for unknown reasons, or wasted from lack of sleep, I can't remember all the reasons why I felt like crap. But even on a "good" day, I never felt well or had any appreciable energy.

That started to change in 2010 and in various increments thereafter, often a few years later - these things made me start to feel like a human being again: methylfolate, potassium (due to refeeding syndrome from methylfolate), vitamin B6, thiamine - really nice boost in energy, and phosphorous (refeeding syndrome due to thiamine), BCAAs - cut PEM recovery time in half, glycine - made huge difference in detoxing - basically put an end to it, after very carefully titrating it over 6 months. And most recently hawthorn berry product by Now Foods has gotten me sleeping halfway decently. Almost the entire last year was destroyed for me by extreme insomnia. I tried everything.

I still crash and still have to pace myself carefully, but I really do have days where I feel well, although I still have to limit myself in what I do. But I feel so much better in between crashing.

Anyways, I haven't found a single doctor with a treatment for ME/CFS. I don't think there are any who can successfully treat it. They can treat symptoms and co-morbid conditions but I think that's about it. I don't tolerate prescription meds very well. So when you talk about a "rabbit hole" of vitamins and herbs, I think you're doing a grave disservice to so many of us where they are the only things that have helped us. And amino acids too. You just might be missing out on some potential benefits from that rabbit hole!

I forgot - back in 2007 I did have a doctor who recommended something helpful - d-ribose. It DID help my energy. It was the first thing to do so since 1998. I was so grateful.

Hi, I'm glad you found things that helped you!

What I mean by the "rabbit-hole" and that sentence, is that there are people who only talk about herbs, spices, supplements, etc. and never about anything else. It's not to say those thing do not or could not help someone. It's to say that these topics are ALL they talk about.

So when you have a forum FILLED with posts only about carrot juice, vitamins, and turmeric, it can be annoying. Even worse so, if those people come to you and suggest random natural things that you are not interested in over and over (not saying these two people are the same type of person, though).

Simply put, its just something I personally do not like to be surrounded by in forums, and I did not mean it as if all of that and anyone mentioning or using it is negative. If it helps - it helps!
I just hate when a whole forum is only about treatments or supplements, as someone who does not want to read about that.

 

[wabi-sabi]

You just might be missing out on some potential benefits from that rabbit hole!

I think this is the kicker for me. Nothing herbal I've tried had ever helped. I decided I couldn't go through the entire herbal pharmacopeia getting my hopes up and then getting them crushed again for my own peace of mind, as well as for the sake of my wallet.

This things that help me are mestinon (Dr. Systrom's drug) and LDN. I had to titrate up super slow in order to be able to tolerate them, but they have improved me. I'm still severe and bedridden mostly, so I'm with you on there just isn't a cure for us.

 

[Mary]

@wabi-sabi - I don't equate vitamins with herbs. I'm assuming you mean no vitamins have helped you or nothing non-prescription has helped? Yeah, it takes a lot of money to keep experimenting. But it has paid off for me. Though more things didn't help than did help. And I learned early on not to get my hopes up - it was too painful. But I kept trying because I couldn't stop - what if? what if this was the thing that helped? Most things didn't help but once in awhile I struck gold, or so it felt. Also I used muscle testing. I would have been lost without it. It was cheap compared to functional doctors and it helped me a lot.

But I haven't had any prescription drugs help me. I tried ldn, and it made me spacey and unable to function even at very low doses. So we're all different.

And I tried many amino acids until I found BCAAs which cut my PEM recovery by more than half (there are studies showing the benefits of BCAAs for ME/CFS)- this was in 2014, and this was huge for me. And they have kept helping me and the few times I've run out or did not take them for awhile, I started to backslide very quickly. And you have to take enough of them, and they have to be a good product too. Lots of variables.

And I agree - there isn't a cure (yet! - can't leave that off!)

 

[Osaca]

Hey, I haven't read through all the comments so please excuse that, but from what I've read I definitely agree with what you've been saying. Regarding Reddit the problem is basically that the cfsme sub is rubbish and run by a single person. The better one is the one called cfs. It's similar for the Long-Covid subs on Reddit. The covidlonghaulers is decent whilst the LongCovid sub is run by people that sell their own products via the sub. There aren't any subs that are great, but there's some that are absolutely awful.

 

[hapl808]

I've seen posts where people in the reddit subs were asking "mecfs but without pem??? anyone else?" and people were like "yeah I feel tired after doing stuff, that's it, so yah it can be mecfs" and it's like nooo it's so much more than that pls do your research

And vice versa - I have a few friends who never would consider ME/CFS, but they always 'slept badly last night' or have chronic pain issues. Only now do I notice - umm, you went to a concert two days ago and today you literally couldn't get out of bed? Oh, you had a long day at work yesterday and today you fell asleep in the afternoon and woke up at 10pm feeling awful. I know how easy it is to write these things off because I did it for years.

My guess is that ME/CFS is just a description of symptoms. If you look at fatigue descriptions in cancer, or MS, or HIV - it's the exact same with different language. Flares vs PEM vs crashes and so forth.

He was doing a survey of people who had recovered from long COVID and when he looked at the questionnaires, lots of people who said they were recovered were really still having symptoms. He didn't have any explanation about why people think they are recovered. Maybe some combo of desperately wanting it and becoming slightly less severe.

I saw this with the Gupta DNRS junk (sorry for anyone it's helped). The interviews of 'recovered' patients that you're required to watch are the most unhealthy group of people I've ever seen intentionally assembled. Weak voices, all seemingly suffering from generalized anxiety and looking like they'd have a heart attack if someone said boo.

Hi @RyeRyeBread - I only want to address this one sentence. I do feel the same way as you about people who basically claim to think themselves well. I tried Ashok Gupta's program in 2007 or 2008 - and of course just kept crashing when I ignored how I felt. It's like trying to force yourself to walk on a broken leg telling yourself the pain is all in your head and expecting it to heal!

Haha - read this after writing my critique above of Gupta. Yeah, for me it felt a lot like brainwashing. Like convincing people of something. You condemn the actions of your government in SE Asia. Say it again. Now write it down. (Brainwashing uses the technique of repeating or writing things - even if you don't believe them, they just want you to repeat because eventually…)

That started to change in 2010 and in various increments thereafter, often a few years later - these things made me start to feel like a human being again

Funny. Same onset time (1997 for me). Same time when I improved - 2010 with Chinese herbs, antibiotics, etc. Then tried to start a relationship and 'redoubled my efforts to get better' in 2015 and that led to a two year decline to severe. Haven't walked or really left the house since.

Anyways, I haven't found a single doctor with a treatment for ME/CFS.

Same, and that includes the 'specialists' whose recommendations were basically CoQ10, D-Ribose, and so forth. Like at least they tried, but if just one doctor from 1997-2015 could've said, "Listen to your body! Don't overdo it. Try to only work out light weights and don't push yourself - I know it seems like it'll help, but it'll just make things worse." Good advice would've done more than the zillions of doctors and herbs and supplements and medications and…

 

[wabi-sabi]

I found BCAAs which cut my PEM recovery by more than half (there are studies showing the benefits of BCAAs for ME/CFS)-

But why do they work? I mean, I eat enough protein and a generally healthy diet. I'm just scared to try and feel worse, or feel nothing which might be worse.

I tried a protein powder once and felt worse.

 

[hapl808]

BCAA is different than a full protein or healthy diet. As for why anything works in ME/CFS, I am skeptical of any explanation since the real answer is: we don't know.

I haven't seen many reports of BCAA making people feel worse. They're relatively cheap and easy to try, at least short term. I take them sometimes on bad days - but not sure if it helps me.

 

[Viala]

I've seen posts where people in the reddit subs were asking "mecfs but without pem??? anyone else?" and people were like "yeah I feel tired after doing stuff, that's it, so yah it can be mecfs" and it's like nooo it's so much more than that pls do your research

That should be the first question after writing a recovery story and by default a forum rule to help differentiate between CFS and other types of fatigue. Not having PEM practically excludes ME/CFS, which is a good news if someone doesn't have PEM.

 

[wabi-sabi]

it's the exact same with different language. Flares vs PEM vs crashes and so forth.

This is what I really wonder- are we all trying to describe the same thing that can't really be put into words? Or does the fatigue and payback with different illness really feel different?

This is where I think the biology research would be helpful. When the fibro person says a flare and I say a crash- what is happening on the inside? When I listen to my friends with chronic illness that aren't MECFS I really wonder. Sometimes it feels similar and sometimes not. For example, POTS comes with exercise intolerance and terrible fatigue, but how to differentiate from MECFS?

 

[Mary]

But why do they work? I mean, I eat enough protein and a generally healthy diet. I'm just scared to try and feel worse, or feel nothing which might be worse.

I tried a protein powder once and felt worse.

Take a look at this thread. the first post links to some articles which explain how BCAAs can help. I'd had Nutreval testing done which showed very low leucine levels (which was unusual) and then I googled leucine and ME/CFS and found this info and started taking the BCAAs and was amazed at how much they helped me.

I've eaten lots of protein for years and it never did what BCAAs have done for me. Protein powder didn't s do it either.

 

[linusbert]

I've seen posts where people in the reddit subs were asking "mecfs but without pem??? anyone else?" and people were like "yeah I feel tired after doing stuff, that's it, so yah it can be mecfs" and it's like nooo it's so much more than that pls do your research

and the people who confused (or their doctors confused) chronic fatigue with ME, and they refuse to acknowledge the difference or do their own research to see that they do not have this illness, but instead have a very valid symptom/condition that does often get cured/treated and goes away after a time... 6 months to a year... very often confused with this illness... sndhsjbdjshdjs

we need biomarkers LoL

thats a real problem, this takes away the credibility from the real cfs folks.
btw i dont think i have cfs, i just have PEM and untrainability and some symptoms people share here.

maybe they should make severity a criteria for cfs diagnosis. like you are not able to leave the house. just a idea.
so this filters out all those folks who are just feeling tired but have a 12h/day job, kids, dogs and go to the gym 3 times a week to pump the crap out of them.
(i was like this before i crashed as well, did all the things, but was tired and sleepy all the time... only after the first crash i got the cramping symptoms, thou muscular hardening and weekness slowly set in a few years before - now i see the signs, back then i didnt judge correctly because doctors told me that after being tired after lots of work and stress, i need to do MORE SPORT!!!!!! what morons!!!)

a friend of mine, entrepreneur, is telling me he feels so burned out, he just cant handle it anymore. but he is doing vacation and relaxation now, only having a 10hour work day for the next 2 month and is sleeping at home and not in workplace.
he always says, that he thinks of me and feels immediately better , in contrast... i always say jokingly that i want to be as tired as he is.
but everything is relative.

Maybe some combo of desperately wanting it and becoming slightly less severe.

maybe positive bias or something. idk.

And I tried many amino acids until I found BCAAs which cut my PEM recovery by more than half (there are studies showing the benefits of BCAAs for ME/CFS)

i think for me its not working or make things worse.
its complicated. i am diabetic now, and diabetics seam to have too much of those BCAAs in blood. same for Ribose.
so the metabolism for those seams to be as broken as for glucose and insulin.

 

[wabi-sabi]

I've eaten lots of protein for years and it never did what BCAAs have done for me.

since the real answer is: we don't know.

Darn it! Now you two are getting my hopes up again and I may have to try it. Can't I just use the cure by chocolate method?

Although I've had nutrition testing and nothing much showed up.

 

[Mary]

BCAA is different than a full protein or healthy diet. As for why anything works in ME/CFS, I am skeptical of any explanation since the real answer is: we don't know.

I haven't seen many reports of BCAA making people feel worse. They're relatively cheap and easy to try, at least short term. I take them sometimes on bad days - but not sure if it helps me.

@hapl808 - you might want to look at the articles linked in this post. They're what got me taking BCAAs in 2014 (and ever since) and one of the best things I've ever tried.

 

[L'engle]

We are absolutely barbarians trying to treat glioblastomas with leeches and mercury, but we think we're in an episode of Star Trek.

Best description!

 

[Mary]

Can't I just use the cure by chocolate method?

Hey, don't get your hopes up. Really, don't - I've learned not to do that. Just stay as neutral as possible. BCAAs don't help everyone, though I know several people on this forum who they have helped.

 

[L'engle]

also there seam to be some folks who are moderate sick and so tired of this shit that at some point they just say they are better or cured... but are not really better.
its some kind of lieing to themselves and therefore tell untrue stories.

Its very tempting to do this even with very small improvements. Or even since we've been so ill our idea of recovery has been changed to mean 'better than I was' which makes sense to sick people, but healthy people will read it as 'this person has a normal life again' and it contributes to that being the unrealistic standards we are all held to. Even improvement is an unrealistic standard, let alone full recovery.

 

[hapl808]

@hapl808 - you might want to look at the articles linked in this post. They're what got me taking BCAAs in 2014 (and ever since) and one of the best things I've ever tried.

That's interesting, but I'm always more interested in just results. I've tried BCAA - it's hard to tell if it improves my recovery time because everything crashes me to some degree, but to different degrees. Sometimes working on the computer takes half a day to recover, sometimes it takes three days. I haven't noticed a clear correlation with BCAA, but it's hard to judge if I never know how long it will take.

I have BCAA, lysine, ALCAR, l-carnosine, tryptophan, theanine, glycine, glutamine, etc. I'd say theanine is the most noticeable - if I take it before a phone call, it seems to mitigate the crash a bit (maybe). Maybe ALCAR is helpful. Lost the ability to walk seven years ago, so not that helpful.

I'm basically just trying to find stuff where the crash isn't as bad, where the headache isn't as bad, where the acid reflux isn't as bad, etc. Hard to judge when it's always bad, just a matter of degree.