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

[L'engle]

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

I think so. All the cultural pressure to 'get better' is enough to convince people they are recovered, when they clearly still suffer and have to make many compromises. If it's assumed that we are imagining we're sick, falling into imagining we're well is an inevitable trap for anyone functioning above a certain level.

 

[hapl808]

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

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? You're one of those people getting tested in unsaged labs. Sorry to say, all your labs AND your chocolate isn't doing anything.

 

[linusbert]

@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.

did you try pure glucose?
whey protein helped me in the beginning, but i discovered it was due to insulin push... and actually insuline did the helping.

i switched to pure glucose monohydrate because whey was beginning to make problems , bcaa seamed to not do good either and glucose is easier on the metabolism then converting the proteins to sugar first.

glucose and whey are fast energy. ketones and mct are too - but those do not work for me at all. i need the insuline rush.

 

[wabi-sabi]

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,

I think I do this myself. Maybe it's a coping mechanism to deal with it. If I really thought about being sick it would be much too scary. I remember Whitney had a blog about the world being there and not there that sort of describes it. I'm stuck in bed most all the time and my parents bring me food. But hey, I can type today, so everything is fine.

 

[wabi-sabi]

You clearly haven't used the right chocolate.

Oh @hapl808 you make me laugh. Thanks friend.

 

[Viala]

This is part of why chronic illness is so hard to treat. We are absolutely barbarians trying to treat glioblastomas with leeches and mercury, but we think we're in an episode of Star Trek. Even the well meaning physicians are stumbling around in the dark on a good day, and there aren't too many of them.

It definitely feels that way, oftentimes doctors are throwing pills at us saying let's see if this will work. Well that's not real science, meanwhile these pills can have real side effects. We're still in medical dark ages but with technology.

 

[hapl808]

did you try pure glucose?

It's funny, only in this world can someone suggest something kinda crazy and my first thought is, "Really?" And then my second thought is, "Oh, right. I did try that, too." Actually I tried dextrose which is kind of the same. Maybe I'll revisit - brain fog is much worse in recent years, and occasionally something with more sugar seems to help me slightly. Although I'd say five years ago the sugar thing was more noticeable - I used to drink Coca Cola sometimes, but only the version with cane sugar because the other made me sick.

 

[Mary]

@hapl808 - You're quite a bit more severe than I am. I'm really sorry to hear that. My crashes for so many years have been like clockwork so it's easy for me to see what is doing what to me. I can do x amount of exertion (mental, emotional or physical), generally 4 hours a day or less of light exertion (with rest periods Thrown in), and I'll be okay the next day. And If I exceed it, I'm in bed the next day. And the length of my crashes were like clockwork 2 to 3 days, until I started the BCAAs, and now I generally recover in one day. Like frigging clockwork.

I am a mild case though I haven't been able to work since 2001 and really shouldn't have been working then but I was pushing myself back then.

 

[hapl808]

We're still in medical dark ages but with technology.

We're in the medical dark ages, but we've become more efficient at the culture of personality and the religion of medicine. Your lawyer: first name. Your realtor: first name. Your banker: first name. We only give grandiose titles to those that hold life and death power over us. Doctor, Your Honor, Warden. Pretty much the only honorifics we use as adults.

This will sound reactionary, but I've been wondering about modern medicine in general. For every story of someone where their cancer was put in remission, I have another story of someone where their chemo and radiation just seemed to make their last months or years miserable. And then for less acute illnesses, it feels like medicine often does more harm than good.

For me, I'm pretty sure if I never saw a single doctor in my life, my health would be far better. The incompetent rheumatologist that dug into my knees crippled me permanently, yet he was actually a chronic illness specialist.

That's a sad statement for me, with multiple respected physicians in my family (some with high positions in academia). Yet I'm starting to wonder if we've lost the Hippocratic Oath, and starting to understand why that Oath was so durable.

 

[Viala]

I think so. All the cultural pressure to 'get better' is enough to convince people they are recovered, when they clearly still suffer and have to make many compromises. If it's assumed that we are imagining we're sick, falling into imagining we're well is an inevitable trap for anyone functioning above a certain level.

A lot of these people can have temporary remissions which can happen with trying different things, that often work only once and for a while. They shouldn't publish any ME/CFS research claiming that someone has recovered, without giving their subjects enough time to make sure that they remain cured.

I imagine a lot of these folks can have adrenaline rush. This should go into NICE guideline as well, if they claim someone has recovered, there should be an obligatory check up on this people a few months later.

 

[hapl808]

My crashes for so many years have been like clockwork so it's easy for me to see what is doing what to me. I can do x amount of exertion (mental, emotional or physical), generally 4 hours a day or less of light exertion (with rest periods Thrown in), and I'll be okay the next day. And If I exceed it, I'm in bed the next day. And the length of my crashes were like clockwork 2 to 3 days, until I started the BCAAs, and now I generally recover in one day. Like frigging clockwork.

That's where I was in 2014-2015, but I didn't understand it fully. I kept crashing, but then recovering within days or at worst a couple weeks.

Then a minor ankle injury during a crash derailed me, with doctors encouraging me to keep walking on it, saying that ankle sprains should be walked on after a brief initial period if I wanted it to heal properly. So I developed a bad limp because I was constantly in pain, which then caused both knees to eventually give out. I slowly recovered, until a doctor's 'examination' of my knees crippled me permanently - never was able to walk again.

 

[wabi-sabi]

This will sound reactionary, but I've been wondering about modern medicine in general.

I don't wonder about modern medicine- I love the stuff- but I do wonder about med school.

I'm quite happy to call an MD doctor, but I'm going to call the PhDs, PharmDs, PsyDs, etc doctor too. I've seen far too many MDs online line saying the other Ds don't deserve the honorific. Coming from an academic family, that makes me mad.

I mean, Dr. McCoy never says that Dr. Scientist of the Week doesn't get to be called Dr. because she's a scientist instead of a physician. I think it's the giant fragile ego that's the problem, not modern medicine.

 

[wabi-sabi]

dug into my knees crippled me permanently

Do you have a connective tissue problem?

Not really my business, so you don't need to answer, but just wondering if you'd had that checked.

 

[Viala]

This will sound reactionary, but I've been wondering about modern medicine in general. For every story of someone where their cancer was put in remission, I have another story of someone where their chemo and radiation just seemed to make their last months or years miserable. And then for less acute illnesses, it feels like medicine often does more harm than good.

I totally agree, we just don't know for sure how many people get injured during a treatment, because that wouldn't sell that treatment. The facts are churned up by statistics, politics and private interests. I was actually thinking about it today, we can have all the good research we want but what we get and what gets into a doctor's office and into mass media, is a decision made by some guys in suits.

It is obvious with recent NICE guidelines changes. They just decided that GET is good for us and that's it, and it seems that DSM was made in a similar way where they literally voted what to put in there. Someone posted a link here recently where it was explained how DSM was created, it's mindblowing. The premise of every business is to have clients that come back or never go away and medicine is a business.

For me, I'm pretty sure if I never saw a single doctor in my life, my health would be far better. The incompetent rheumatologist that dug into my knees crippled me permanently, yet he was actually a chronic illness specialist.

This.

 

[Mary]

did you try pure glucose?

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.

 

[hapl808]

Do you have a connective tissue problem?

Not really my business, so you don't need to answer, but just wondering if you'd had that checked.

Probably. Checked how? I'm all out of sage.

In all seriousness, I don't have the typical hypermobility of EDS, but my serious injuries never heal. If I pick up a shopping bag, I pull muscles in my arms that take days to recover. Had a Whole Exome panel done, but it just came back with a shrug emoji (unimpressed with how little info they give you from a 'real' genetic test.)

So yeah, but not sure how to check for it or treat it. I even tried HGH, testosterone, anabolics, SARMs, etc. Didn't seem to help at all, although I only tried once I was already severe.

 

[hapl808]

seems that DSM was made in a similar way where they literally voted what to put in there. Someone posted a link here recently where it was explained how DSM was created, it's mindblowing. The premise of every business is to have clients that come back or never go away and medicine is a business.

Yep. Don't forget they voted that homosexuality was a defined mental illness and included it in their DSM. Until it became politically inconvenient, and then suddenly it was no longer a scientifically defined mental illness. They're charlatans, just ones with a super cool classification system and lexicon (which I'll admit I like). Makes it easier to discuss mental problems, but totally arbitrary for treatment.

 

[Viala]

They're charlatans, just ones with a super cool classification system and lexicon (which I'll admit I like). Makes it easier to discuss mental problems, but totally arbitrary for treatment.

They packaged their products really well

 

[wabi-sabi]

In all seriousness, I don't have the typical hypermobility of EDS

That's what I was thinking of. I'm not sure what else would be going on, but it just seems to me that's an usual reaction that must mean something-must be a clue to what's going on. Sorry I can't think of anything more helpful.

Conserve the sage!

 

[hapl808]

That's what I was thinking of. I'm not sure what else would be going on, but it just seems to me that's an usual reaction that must mean something-must be a clue to what's going on. Sorry I can't think of anything more helpful.

Conserve the sage!

Yep. I always think that - so many 'unusual' symptoms or responses that I would think mean something, but doctors just glaze over when I ask them.

I feel like every time I ask them about a weird thing like an injury that won't heal or acid reflux after a phone call, they really want to say, "Weird, you should see someone about that!" Until they realize they're that someone, and they have no damn clue.