[RD] Ask a Person with ME/CFS

[Valka D'Ur]

When I want to make normal people uncomfortable, I call myself a cripple, because according to their textbooks, such a word is strictly verboten.

1. There are many definitions and perceptions of 'normal'. As someone who belongs to this forum and the wider gaming and SF/F communities (yes, we are a community and have been for decades), you are perfectly normal.

I know your situation is not normal when it comes to health or the ability to do the things you want to do (or have to do), and to be able to take for granted that you'll have a pain-free day (and any pain you do get can be easily remedied with a couple of pills).

I never understood the idea of "I can't make promises because I have no idea if I'm going to have the energy to do that on such-and-such a day" until I was in that situation myself. It drives healthy people up the wall because most of them don't get it.

I haven't been pain-free for decades., and don't remember what a pain-free day feels like.


2. I'm not fond of the word "cripple" either.

None that I'm aware of. I've seen depictions of fibromyalgia, and they're always portrayed as lazy, good-for-nothing malingerers, so I have no real desire to see anyone attempt representation for ME/CFS. Technically, representation would lead to better exposure, but the only people with the funding necessary for it are the same people who think so little of us.

That was my own doctor's opinion, until she finally sent me to a specialist in Calgary. He diagnosed me with fibromyalgia, and I sat in his office and cried with relief that after so many years of being told I was "lazy" or to "snap out of it", a doctor finally believed me.

There are a few documentaries. I've only watched two, Unrest and... something else. I kind of purged the second from my memory because it was an edited hit job (which connects to my point above). Unrest is decent for a layperson, but eventually the creator got diagnosed with craniocervical instability (CCI) and has been somewhat in remission since getting invasive surgery to fix it.

Looking it up, there's this:



Oh, actually, I do remember one depiction. We were in House M.D. and we were diagnosed with a pyschosomatic mental illness (fancy term for "you're making it up") and subsequently cured with mints. Kind of funny that even in the "We'll never rest until we cure you" show, we're still nothing more than a joke.

So that show doesn't actually use a medical advisor or research company? Or if they did, they must have chosen to ignore them.

 

[aimeeandbeatles]

What symptom of ME/CFS is the most "wtf, how can it affect that"?

 

[Synobun]

What symptom of ME/CFS is the most "wtf, how can it affect that"?

Since the mechanism of ME/CFS is dysfunction on the mitochondrial level, pretty much any symptom ultimately "makes sense."

But the one that vexes me is the kind of anxiety it gives you during a crash. Comorbid mental illness is extremely common (obviously), but ME/CFS itself can give you feelings of anxiety when you've overexerted and now facing the consequences. It's an extremely acute sense of despair: you feel like the entire world is collapsing around you. You're irredeemable, there's no point, you're hurting others by being near them, your life is over, everything is hopeless, and so on, all at once, and you're feeling this when you're at your most trapped. When you're meant to be taking it easy and recovering, when you're at your least capable, that's when it hits, and it is... brutal.

I have horrible anxiety, partly because I am just an anxious person in general and partly due to a severe reaction to an antidepressant years ago. But that anxiety pales in comparison to the anxiety that hits when in a crash. It's completely separate, and the crash-induced anxiety is incredibly potent.

I've never quite understood why. ME/CFS has neurological effects, of course, and it weakens you mentally with brain fog and general slowness and inefficiency in how your mind thinks and remembers. But that immediate drop into agonizing despair is an unnecessary cherry on top. It's a significant part of what demolished my relationship and I've yet to figure out a way to blunt it or work around it.

 

[Hygro]

Oh my god the overextension paranoia.

 

[E.man]

Having 'comedians ' think it's funny because 'they get tired too ' really sh1ts me. Arseholes.

 

[aimeeandbeatles]

I'm having trouble phrasing this one: In general, do you think there's any resentment of pre-COVID ME/CFS sufferers towards all the interest in long COVID, or is it generally positive?

 

[Synobun]

I'm having trouble phrasing this one: In general, do you think there's any resentment of pre-COVID ME/CFS sufferers towards all the interest in long COVID, or is it generally positive?

Yes and no. Research into post-viral illness is good for us. Resentment comes in when people with Long COVID set themselves apart from ME/CFS, or when research studies specifically exclude us. There's also resentment when people with long COVID think they're special, suffering an unknown malady that's taken the world by complete surprise. There's often a general air of "We're not like those fakers with ME/CFS, we have Long COVID, which is real and terrible." Many with Long COVID also deliberately avoid reading material from us, because they think our issues couldn't possibly compare to theirs and thus our experiences, treatments, tests, etc. are irrelevant to them.

There are also some who deny they could have ME/CFS, because they're somewhat educated and know what it means to have it, whereas the unknown of Long COVID could mean there's a light at the end of the tunnel.

 

[AdamCrock]

Now do not get me wrong. You are absolutely healthy.

Moderator Action: Not really an appropriate post for this thread. Birdjaguar

 

[Synobun]

Now do not get me wrong. You are absolutely healthy.

No.

 

[AdamCrock]

I wish . Sorry to hear that, I was trying to raise Your spirit but I couldn't. Be well than. Good to see Aimee here HI I remember Aimee, she is awesome !!

 

[Valka D'Ur]

Now do not get me wrong. You are absolutely healthy.

This is exactly what doesn't help, even if you have good intentions. The only person who knows how Synobun feels is Synobun himself. He is the only person who knows what he's capable of doing at any given moment.

 

[aimeeandbeatles]

I'm going to guess it's the onions, but what's the most ridiculous pseudoscientific "cure" you've seen?

 

[Lexicus]

Do you consider this thing to be more of an illness or like a very bad injury, or are those not mutually exclusive? (sorry if you've answered this before - I know you referred to it as post-viral injury in a previous post)

 

[Synobun]

I'm going to guess it's the onions, but what's the most ridiculous pseudoscientific "cure" you've seen?

Pretty much all of them are equal in illogical fantasy. I probably look down on prayer more than the rest since it's so pervasive.

 

[Synobun]

Do you consider this thing to be more of an illness or like a very bad injury, or are those not mutually exclusive? (sorry if you've answered this before - I know you referred to it as post-viral injury in a previous post)

Both, I guess. Something goes wrong in the immune response and your life falls apart likely permanently after that point. "Something goes wrong" would qualify as an injury, since it wouldn't happen without that original harm being done. But the effect feels more like a disease. And the government seems to agree with that assessment, since while they mock us and isolate us, we're banned from donating blood and organs.

I'm not sure if there's a genetic component to it. I suppose it is possible. Long COVID has shown how susceptible anyone is to it, given the frequent reinfections. You can watch people go through infections fine, and then suddenly lose the gamble on the third go. It requires some kind of trauma to the immune system to happen.

 

[aimeeandbeatles]

Does ME/CFS affect the immune system?

Are you at higher risk when getting an infectious/contagious disease such as a cold or RSV? If so, does it increase the chance of catching it, or just the severity of symptoms and recovery from them?

 

[Synobun]

Does ME/CFS affect the immune system?

Are you at higher risk when getting an infectious/contagious disease such as a cold or RSV? If so, does it increase the chance of catching it, or just the severity of symptoms and recovery from them?

This varies. I haven't gotten a cold in fourteen years (since getting this). But when I do get sick, I get sick badly, and it usually sets me back months. COVID, for example, had me flirting with the reaper. From 18 to 20, I invested everything I had into reaching a part-time employable level of capability, reached it only just, and then had it all wiped out instantaneously by a workplace laryngitis infection and have never recovered to that level since.

We're not officially recognized as immunocompromised, but we have a vested interest in not getting sick. It's far more likely to permanently knock us down a few pegs. There is precedent for severe shocks to the body to spur on remission or easing of symptoms (like what happened to me 2.5 years ago), but the likelihood is slim enough that you'd be a fool to gamble with it. It's far more likely you'll just get worse.

So the simplest answer to your question is that we're not more susceptible, but the severity and recovery is worse.

 

[E.man]

Have to agree that it's frustrating that Long COVID is seen as this strange new thing and ME ppl been suffering pretty much the same for bloody ages.
Then at least sometimes it brings them both into view.
This new research with MRI shows the same brain stem damage.

Long COVID has left Sue too tired to return to work. Researchers may have unlocked a reason why

World-first research being conducted in Queensland has identified a link between chronic fatigue syndrome and long COVID.

www.abc.net.au

 

[aimeeandbeatles]

How good at you at predicting what level of activity to avoid getting PEM? Have you ever done something that triggered PEM and then go "oh come on..."?

 

[E.man]

How good at you at predicting what level of activity to avoid getting PEM? Have you ever done something that triggered PEM and then go "oh come on..."?

After 23 years I can tell that anything will hit me somehow because *everything* uses energy.
There's a skill to doing *less* than you think you can to minimize the hit.