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

[Zebra]

You clearly haven't used the right chocolate. I mean, I've been lab testing my chocolate and if it's not Swiss 85%, then what are you even doing?

LMAO!

Thank you for the belly laugh, and now my abdominal muscles will be sore tomorrow ...

 

[linusbert]

No, I've never tried that. What does it do for you?

I don't use the BCAAs for energy. I don't feel any different after taking them, at least not that I notice now. I think initially I noticed an energy boost after taking them. However, I keep taking them because of what they have done for my PEM - they have cut my PEM recovery time by more than half, which is huge for me. They've given me a piece of my life back. I don't think pure glucose would do this. It might give me an energy boost, I don't really know. But I don't think it would affect my PEM recovery.

for me change was dramatic, after a few minutes of drinking a coke or eating a mars bar i'd feel normal (muscle cramping and stiffness immediately resolved and well being and strength came back) . that was in the beginning. later it wore more and more off, but i still need it, if i dont take it i crash hard.
for me i discovered that it must be the insulin, because injecting insulin also gave me this.
i got this actually measured, i perform physically better with coke. i did a bicycle test without sugar PRE-crash... and a few years later when disease was much worse after crash, i did it again and drank coke while doing the test. and the results of that bike test were better than the test when i was "healthy".
clear sign for me that this did impact positively.

but in general people shouldnt do glucose for obvious reasons. only some metabolic sick people need this.
better to go with ketones or mct or short chain fats.

 

[Rufous McKinney]

Agreed, PR forums are a comfortable home, and reddit and elsewhere seems to be a rough motel off the side of a highway

lol

 

[Rufous McKinney]

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.

I felt like the BCAA's helped "slightly". But I stopped after some gastropersis event/stomach shut down.

I have considerable trouble consuming ANYTHING. Like try to get me to drink a glass of water. I will take one sip, come back later, take one more sip.

the chinese herbs help me the most of anything I've taken or tried out. I get them from an expert, and I think most folks can't find that level of expertise. My person writes books about it. Sees people who left all the other chinese medicine doctors.

Some yucky symptoms got better or went away.

But then other stuff happens. New things happen, related to the old thing that just found some new form of expression.

(yesterday, double vision happened) Today, not so much.

 

[Rufous McKinney]

Hard to judge when it's always bad, just a matter of degree.

yes, then add the cognitive issues....

I had a cognitive moment, inside the Audiology test.

I was supposed to click the button, if I heard a tone. But the tones went from real high to low tones, and my brain decided low tones were interesting to listen to so my brain Stopped pushing the button.

Oh, opps, THIS is a test...OPPS.

Later, next: the audiologist asked if I had fallen asleep inside the test box. yes, I could have totally fallen asleep. like narcolepsy.

 

[CSMLSM]

When the fibro person says a flare and I say a crash- what is happening on the inside?

Fibromyalgia flare is the neuropathic pain all over the body.

ME/CFS crash is extreme fatigue from PEM.

 

[CSMLSM]

No, I've never tried that. What does it do for you?

Insulin resistance and diabetes!

 

[Art Vandelay]

So, I'm on a few subreddits about ME or CFS on reddit. To be honest, avoid most of them, most of the time, because a good chunk of people on there have either gone down the rabbit hole of natural treatments (only talking about herbs, spices, vitamins, etc. and nothing else) or they are talking about recovery stories.

I haven't had a chance to read the other posts on this thread, but I thought I'd let you know that the subreddit r/cfsme as well as r/mecfs are run by a guy who claims he cured his CFS with positive thinking and exercise. He (of course) wrote and sells a book about it.

He also promotes the Lightning Process (a scam treatment). I wouldn't lose any sleep over being banned by him.

 

[CSMLSM]

I have read many but not all of the comments posted and I understand why all of you feel the way you do about everything you all mention.

It is unfortunate, I sit here unable to think of how to put this because I know and understand everything you all say and feel, I have been there myself.

Simply put I have been all over the scale of severity and range of symptoms, tried for many years to push through reluctant to believe I was so ill and bought into others for a period that it was all in my head.

Found things that helped and because it made unbearable bearable thought I was really well to only crash hard for a number of years at a time, I have done this repeatedly trying and trying again, working my way through finding what and why something was working and why it stopped. All while managing using cannabis and trying to understand why that helped.

All along the way I have focussed on understanding why, looking for evidence and proof of why something does this or that.

So I have been bedbound for years with eye sensitivity to light and intolerance to heat or cold and been able to sense the weather and even sensitive the electrical fields for a period and sensitivity to sound. Had constant flu like illness and times where I collapsed on the floor and had to stay there for along time until I regained enough energy to be able to move myself.

Not washed for weeks or months because I could only muster the energy to go to the toilet and eat a meal in a day or even just ate nothing simply because I did not have the energy available to make it worth it. Had muscles twitching in ways someone could not voluntarily do and been so mentally incapable that simply reading a word is a struggle and my comfort place is a dark quiet room and my only options for some level of comfort and symptom management meant sleeping all day and being up when everyone else was asleep so everything was quiet and not busy.

Had horrendous gastrointestinal issues that consume your day and been unable to eat much of anything, sensitive to foods once loved and restricted to a handful of things. Depression and suicide almost daily companions. Lacking balance and coordination walking into door frames instead of between them and a danger to myself when trying to make a meal for myself.

I get you all I really do.

It is a shame given what I have now achieved for my own health will unlikely help anyone else that it might because many feel the way they do about people who claim to be 100% better.

It seems like if you claim to be 100% better you are seen as never really having had the severe ME/CFS, I find this very offensive but I understand why people would think this but I also know in my case it is wrong.

Anyway I love you all, good luck on your journeys.

 

[linusbert]

Insulin resistance and diabetes!

i dont know about this. glucose doesnt cause or worsen diabetes, at least thats what modern endocrinology believes now.
what causes and worsens diabetes is fructose and trans fats though. (and also d-ribose can cause inflammation and glycosation).
silent inflammation is big driver for this. so everything which causes those is potential diabetes and other disease driver.

glucose can indirectly cause diabetes/insulin resistence when too much calories / more than the body can handle are supplied, then they are converted and stored as fat and later on body protects itself with insulin resistence.
remember, body builders are doing post workout shakes of like 50-100g carbohydrates in form of pure sugar or maltodextrin (which is even worse than normal glucose). and they are far away from insulin resistence, as long as they do not put in more than the body can use.

glucose supplementation or injection in situations of great stress can even help in regeneration and survival.

if there are metabolic diseases where fat metabolism doesnt work glucose is the only thing keeping you alive.

the actual problem is finding a good clean source of pure glucose, and so far i dont know one. there are signs that people do not tolerate the modern methods of producing glucose.

 

[L'engle]

@CSMLSM I wouldn't doubt that people can get back to 100% if they're fortunate and find treatments that work whether supplements or prescriptions. This is different from people claiming to be cured via positive thinking.

 

[CSMLSM]

i dont know about this. glucose doesnt cause or worsen diabetes, at least thats what modern endocrinology believes now.

Glucose is what all carbs, sugars, extra amino acids, free fatty acids are turned into when in excess.

Glucose triggers insulin, over production of insulin causes insulin resistance which leads to diabetes.

If you are suffering from ME/CFS and have not recovered you will not be exercising to burn extra calories in the muscle.

Sugar/carbs/glucose over consumption is driving ill health globally, leads to non-alcoholic fatty liver disease.
Approx 33% of UK/USA have fatty liver. Insulin resistance and diabetes is increasing year on year.

So I do not agree with your perspective, sorry.

 

[CSMLSM]

@CSMLSM I wouldn't doubt that people can get back to 100% if they're fortunate and find treatments that work whether supplements or prescriptions. This is different from people claiming to be cured via positive thinking.

I was responding to the comments as a whole not the thread, sorry I did not make that clear.

I just felt that what was said meant that I would be seen as not having gone through what I have because I am now fully well and recovering from the affect it has had on my body. Also it made me feel I was wasting my time trying to share this with others and it explained the response I have recieved when trying to do so.

I feel like I have been through hell while others believed it was all in my head and now I am well even those suffering from the same thing think thats all in my head and I never had the condition/s in the first place.

Just as well I am used to being on my own.

This is how I feel.

 

[linusbert]

Glucose is what all carbs, sugars, extra amino acids, free fatty acids are turned into when in excess.

Glucose triggers insulin, over production of insulin causes insulin resistance which leads to diabetes.

If you are suffering from ME/CFS and have not recovered you will not be exercising to burn extra calories in the muscle.

Sugar/carbs/glucose over consumption is driving ill health globally, leads to non-alcoholic fatty liver disease.
Approx 33% of UK/USA have fatty liver. Insulin resistance and diabetes is increasing year on year.

So I do not agree with your perspective, sorry.

thats not correct, some amino acids and fats can convert to sugar, but its a pretty expensive process converting proteints to sugar, often using up more energy then it actually brings. amino acids for energy use is the worst form for the body to utilize.

glucose triggers insulin. so does protein and other combinations of fat and proteins and or sugar.
a healthy body does not overproduce insulin. and an overproduction of insulin isnt equal to insulin resistence.
the problem is too much supply for the cells, if they cannot handle it, they will close up and lower insulin receptors = resistence.
i do not see any logic in this, for me its the total carb load. the body must get rid of it, if he gets more carbs than he can process there is a problem. if he can process it, there is not.

there is no proof that glucose is driving anything. there is proof that HCFS and fructose are driving diabetes which is pretty sure. also normal sugar which is a 50/50 combo of glucose and fructose can potentially make problems, but also the fructose is the problem here. its not the glucose molecule.

exercise has nothing to do if glucose causes diabetes or not. this is wrong argument!
exercise increases demands on energy and therefore improved utilization of glucose. but not just through insulin because moving muscles pick up glucose without need for insulin. its independent mechanism.
the only thing exercise does, is increase demand for energy and driving up calories need.
if you do not exercise and do not take too much calories this does not apply. its completely irrelevant.
a lot of sick people do not exercise and are underweight because metabolism is broken.

average american eats highly industrialized processed foods and a BIG FAT sur PLUS in calories, they consume too much. including trans fats and other things like HCFS which are proofen to cause diabetes and other disease.
american coka contains HCFS, european coke contains sugar... guess who is healthier.
the real driver for diabetes is inflammation caused by many things, but especially HCFS, trans fats and processed foods. inflammation causes insulin resistence.


you present old "knowledge" a lot of doctors still repeat, its wrong. glucose does not directly cause diabetes.
overconsumption of calories can!
so if one is too take glucose for any reason, its important to not go over daily calories demands unless trying to gain weight and to not take too much at once.
some people are hypersensitive to insulin, they can become hypoglycemic with taking sugar. so its important to know your own body.

 

[hapl808]

I just felt that what was said meant that I would be seen as not having gone through what I have because I am now fully well and recovering from the affect it has had on my body. Also it made me feel I was wasting my time trying to share this with others and it explained the response I have recieved when trying to do so.

I think some of that is a matter of perspective and individual health.

Many people have found things that work for them - from LDA to copaiba to cumin to carnivore to DNRS. Even DNRS (which seems silly to me, although I did try it). If that helps someone recover their life, then it really doesn't matter if it seems silly.

But stories of 'cures' are rare. Usually they involve: continuing therapy at the very least. Like insulin is not a cure for T1D, but it's a great treatment.

There's just nothing that works for everyone. That is a fundamental issues with ME/CFS, and I think as soon as veterans hear 'one size fits all', then we get a bit suspicious and frustrated having ourselves spent decades trying everything we came across, often with a similar promise from physicians and friends. If someone really discovered the unified field theory AND cure for every case of ME/CFS and Long Covid, then they will get a Nobel.

I know this is a sensitive subject but I'm trying to be genuine on where the feelings arise on all sides. Carnivore is a good example because it sounded great. It didn't work for me but it helps many people. It was a lot of effort (because I did all the things that were supposedly required to do it 'right'), and it didn't help. It actually seemed to negatively affect my ability to digest beef for the long term, but those are the risks we take.

I think the pushback comes from a feeling of victim blaming, which others perceive as us doubting them (which maybe some do, but I try not to).

It's a two way street.

I often use Wishful as an example as their ME/CFS seems unusual in symptoms and one of their most effective treatments (cumin) is also unusual. But they offer guidance on their treatment (what kind of cumin, etc), but state clearly that there's no evidence it's going to work for anyone else. Some have found benefit, but not to the same degree.

Sharing what worked for you is fantastic and incredibly valuable for not only participants here, but for the thousands of lurkers where it might be just the thing that works for them.

 

[CSMLSM]

glucose does not directly cause diabetes.
overconsumption of calories can!

Thats what I said and over consumption of anything leads to glucose increase and thus insulin. Insulin also stimulates the bodies production of cholesterol.

Pure glucose will spike insulin as it has no need to be converted before it stimulates insulin, bad glycemic index.

body builders are doing post workout shakes of like 50-100g carbohydrates in form of pure sugar or maltodextrin (which is even worse than normal glucose)

exercise has nothing to do if glucose causes diabetes or not. this is wrong argument!

You mentioned exercise as if it was relevant to you. I pointed out you were not likely to be doing exercise so it was not relevant to you.

Exercise would use up extra calories and thus glucose but insulin would still be spiked. I said nothing about exercises effect on diabetes.

you present old "knowledge" a lot of doctors still repeat, its wrong

LOL, I present latest knowledge about insulin resistance and metabolism that researchers discover who inform doctors on whats what.

Your right and all those people with qualifications are wrong and wasting there time working on all this.

When you develope diabetes and fatty liver if not already you will understand maybe.

Have a nice day!

 

[CSMLSM]

Thank you for your balanced response I appreciate it.

If someone really discovered the unified field theory AND cure for every case of ME/CFS and Long Covid, then they will get a Nobel.

If anybody listens. I am not claiming to have found a one size fits all just something that will work for at least some.
From my point of view no one is hearing me just saying oh thats great good for you. I suppose the trauma of what I have been through, my caring personality traits and empathy is making this hard for me.

Imagine your in my position and you finally nail it and all you think about is how all the others that could benefit need to know right now because you know exactly what they are going through. Only to be met with what seems akin to the same attitude about whether or not you had the condition in the first place by everyone that did not have the condition.

I will tell you this, getting over the ME/CFS is not the end of the problems, lots more problems come along to replace the old. Amittedly I would rather the problems now than before for certain to be clear.

Its not the lightning process, I have explained the reasons why what I do works and given evidence for this.

I guess I have reached my limit on trying now and hope someone benefits from something I have written, I just have lost motivation.

 

[linusbert]

You mentioned exercise as if it was relevant to you. I pointed out you were not likely to be doing exercise so it was not relevant to you.

Exercise would use up extra calories and thus glucose but insulin would still be spiked. I said nothing about exercises effect on diabetes.

i tried to say that exercise is irrelevant. bodybuilders where just a example. that the gross plus minus calories are important and not much else.

LOL, I present latest knowledge about insulin resistance and metabolism that researchers discover who inform doctors on whats what.

nope its not newest research. newest research is glucose does not cause diabetes, and thats what this debate is all about.

Your right and all those people with qualifications are wrong and wasting there time working on all this.

thats actually true. because those "qualified" people did not look into a medical book for like 20 years. the only book they continue to read are their "check books".
its not my fault that most doctors are uninformed churls. maybe if putting ego back a bit and starting to read studies and current lecture and listen to their patients, they wouldnt have put massive damage on half of this forums members.
so if i had to choose whats healthier, listening to those "experts" or gulping down a ton of sugar... i'd go with the sugar every day.

 

[Rufous McKinney]

If anybody listens. I am not claiming to have found a one size fits all just something that will work for at least some.

we will never know if the actions you took would work for other people, until those other people try it.

You shared what you did which was successful in your case, which is a very valuable thing.

I shared things too. Not quite as dramatic as you, but I got some symptoms to go away and improve. I was met with flat out hostility here. And I didn't like it, either. Over time, it becomes obvious certain folks are just going to respond this way, Thats their deal.

I had made a bargain, that I would SHARE any cure the universe cared to provide me. It's a deal one makes. And I can't exactly go back on my word, to the UNIVERSE.

I think it is sort of standard human nature 101, to believe what helped you, can be shared and then it will help everyone. But still, we share. Because it MIGHT.

I've still never tried the cumin. So that tells you how far some of us could go. (thats due to my hating cumin, and smelling it really bothers me, and therefore putting that in my mouth is contra-indicated)

I've still never consumed the One Drop of Copaiba sublingually, And maybe I never will. For fear it will become cumin.

Only to be met with what seems akin to the same attitude about whether or not you had the condition in the first place by everyone that did not have the condition.

yeah that sucks.

 

[hapl808]

I shared things too. Not quite as dramatic as you, but I got some symptoms to go away and improve. I was met with flat out hostility here. And I didn't like it, either. Over time, it becomes obvious certain folks are just going to respond this way, Thats their deal.

I possibly missed that hostility, but sorry that happened. I feel like there's a lot of open discussion here in general. Hip has listed things that worked for him but didn't help me, as have many others. I don't know if Hip felt he was met with hostility, but we should be able to disagree politely on many things.

But I do think it's good to share stuff that worked for you, in the simplest way possible so others browsing these forums can try. I lurked here for many years before opening an account, and I noticed zero social dynamics because I wasn't a poster. I was just searching for specific compounds and patient experiences.

I guess sometimes my confusion is when people say no one listened, but plenty of people have tried similar things but just didn't get similar results.

I think the main thing that meets with hostility here are versions of DNRS. I don't have the same feeling, but I understand the hostility a bit. Even if someone presents it as: hey, it worked for me but may not work for others. But the programs themselves often promise miracles if only you believe. So if it didn't work, you didn't believe hard enough.

So I dislike protocols that blame patient for failure, or ones that have incredible complexity and possible worsening with little real-world evidence - because then there's never an 'acceptable' time to say it didn't work. (I have friends who swear by jaw cavitations or long term IV antibiotics, but the side effects seem horrific to me and they always seem to have 'other' problems afterward.)

Anyways, I think everyone here just wants to get better. TBH I'm sometimes confused at what people are saying others won't listen to - I've been pretty open to trying stuff after research. LDN, guanfacine, propranolol, huperzine, CoQ10, methylene blue, CBD or THC, various B1 protocols, magnesium protocols, various methylation support, NAC, cromolyn, ketotifen, antibiotics, probiotics, Buhner herbs, TCM treatment from a trained practitioner, and on and on.

We're all frustrated - as much as we may enjoy the community, no one wants to be here. So I'd say just try to have some patience and understanding because none of this is easy for anyone.