[RD] Ask a Person with ME/CFS

[Synobun]

There's been a lot of publicity lately regarding Long COVID, a series of post-COVID conditions. Many long-haulers will end up, or have ended up, with an ME/CFS diagnosis.

Seth MacFarlane recently tweeted about it, with over three million impressions. A popular YouTuber, PhysicsGirl, was diagnosed with Long COVID/ME/CFS and is currently severe, with a video from her best friend about it reaching over 2.8 million views.

A week ago, the government of Canada announced a dedicated research effort toward Long COVID, investing $29 million.

People with ME/CFS have the lowest quality of life out of chronic conditions.

Given the surge of exposure, I felt it might be appropriate and a good time to open up a dialogue about ME/CFS, how Long COVID relates to it, and so on. There is an extreme amount of misinformation regarding the condition, and it is actively repressed in medical school and openly derided by the medical establishment. Research into the condition is highly specialized and underfunded, with other conditions like multiple sclerosis receiving significantly more funding for research despite affecting far fewer people (£800 per patient, compared to ME/CFS's £40).

I'm willing to answer any question asked in good faith about the condition, how it works, how it relates to other things, what it's like living with it, etc. I was bedbound for several years but have currently recovered to housebound. I've had ME/CFS since I was 15 years old, so nearly 14 years now.

Myalgic encephalomyelitis (ME), or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a complex chronic disease that presents with symptoms in multiple body systems. ME is a neurological disease according to the World Health Organization.

Susceptibility may be genetic, but the disease is triggered by infection in the majority of patients. ME may be severe: 75% of those affected are unable to work and 25% are homebound or bedridden. ME is a common chronic consequence of viruses, with 10-12% of those with serious infection going on to develop the disease. An estimated 15-30 million people live with the disease worldwide.

The cardinal symptom of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting ~24 hours after the triggering event. While PEM is often studied in relation to physical activity, cognitive overexertion or sensory overload may also initiate PEM.

People with ME experience a substantial loss of physical and/or cognitive function. The average person with ME scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer. Someone with mild ME may be able to work full-time with accommodations; someone with very severe ME may be bedbound and have trouble communicating.

ME is a relapsing-remitting condition. Individual patients experience significant fluctuations in their well-being from day to day, week to week, and month to month.

 

[emzie]

Nearly 14 years ago was the H1N1 outbreak. Do you think that's related?

 

[Hygro]

What mental game do you maintain to maximize your health?

 

[Synobun]

Nearly 14 years ago was the H1N1 outbreak. Do you think that's related?

That's my assumption. I got H1N1 right at the start of the school year (we had an outbreak immediately) and never got better. I got sick September 2009.

For a long time I actually suspected it was toxic exposure, because a week before school started, my friend and I trespassed on a dig site where the company was accused to be dumping untreated biosolids before the proper storage containers were built. Someone even did their thesis about it. Interestingly, I can't find any articles from 2009/2010 about it anymore, except a throwaway mention in this 2013 article about the municipality sneaking in a zoning change in 2009 to let Lystek build and operate. There were a few petitions and movements back then because people said their kids were getting sick. There was a lawsuit, but as far as I remember, it failed and never went anywhere.

Maybe it was a little column A, little column B. I'm not sure. I've come around to the post-viral assumption since that's how it is for the vast majority of sufferers and, to be honest, it's just a waste of energy to speculate over. I used to think that figuring out the cause would also lead to figuring out the solution. It doesn't work that way, unfortunately.

 

[Synobun]

What mental game do you maintain to maximize your health?

I don't understand the question, sorry. Rephrase, please?

 

[Hygro]

I guess like what reinforcing beliefs to maintain productive behaviors, regardless of the “truth” in those beliefs, have you employed/had/rode/drove etc to go from more bed bound to more active?

Like; I’m sure it’s a mix and not always conscious. But I know I’ve had to be at times hard, at times soft, at times “chosen one” and at times “shut up you’re nothing” for like, extended periods to maintain enough consistently to get from point a to point b. Sometimes it’s really deliberate when the goal is a stretch, like I couldn’t entertain any negativity for like a whole year of my life, reality by damned. But it worked for that goal, but not others.

Just to jog your mind ;p

More like, do you maintain beliefs for their positive impact on your wellness? Do you have to be consistently extra positive or negative, hard or soft, a belief you are special or anti special in your mindset in order to have more good hours every day?

 

[Synobun]

I guess like what reinforcing beliefs to maintain productive behaviors, regardless of the “truth” in those beliefs, have you employed/had/rode/drove etc to go from more bed bound to more active?

Ah, okay.

This will make the "mind over matter" crowd unhappy, but my transition from bedbound to housebound was purely physical and not because I thought myself into recovery. I received treatment during an extended hospital stay in 2020 that addressed severe deficiencies and a signaling error between my digestive system and brain (which the internist suggested was a result of the CFS). A month after discharge, my roommate infected me with COVID, which I only barely got through.

By summer of 2020, I was spending something like 21 hours in bed per day. August 2020, I couldn't eat anymore and I lasted until the end of September 2020 before I landed in the ER. I was discharged the first week of October, and then infected with COVID the first week of November. There's precedence for massive shocks to the immune system making ME/CFS better (though it's a low percentage chance; it's more likely to make it worse), and I was fortunate in that getting the prior problem fixed + getting through COVID gave me the physical jump I needed to get out of bed and stay out of bed.

From there, it was mostly being careful to not overexert myself (it took two years, for example, to go from being able to do one squat to three) and maintaining a healthy lifestyle to reduce the chance of slipping. The aforementioned cause for the hospital stay wrecked my liver and gallbladder, and so I had to radically alter my diet to hopefully heal the liver and not make the gallbladder worse. The gallbladder, unfortunately, was a loss, and I had to get it removed via emergency surgery in October 2022. The liver is good now.

I've experienced a major reduction in capability since October 2022. Being broken up with, major surgery, poor recovery, and having my future upended all at the same time was too much. The process of preparing for my ex's stay here, as well, was a massive undertaking that required me to overexert. I crashed and burned pretty hard, and the last few months have been spent trying to salvage the progress I made from Q4 2020 -> Q3 2022. I think it's a loss though, and I just need to readjust to the new baseline and go from there.

I'm not going to lie and say that how I emotionally feel does not affect how I physically feel, but I would say that my mindset has never really had a significant impact on what my symptoms actually are and how they limit me. I was over-the-moon happy when I had a partner and things were going well, and I was still severely boxed in and no more capable than when I was acutely suicidal from March -> May 2022. I will say that being happier made it easier to live with. But it's never changed the simple truth of being less.

 

[Lexicus]

How accurate do you consider the information on this condition found on the website of the US CDC?

 

[Synobun]

How accurate do you consider the information on this condition found on the website of the US CDC?

It's an alright layperson's description. It downplays the severity and impact, IMO. "Can last for years" is technically true, except the reality is that if you don't get better within two years of onset, you're likely to have it for the rest of your life. Remission after that point is extremely rare, and most often you'll see it happen with people who had a different condition (like mold sensitivity or a vertebrae instability). A lot of people with ME/CFS tend to stay in the "mild" region where they can at least hold a job and maybe do a few social things if they're careful.

One problem with severity is that overexerting yourself has a nonzero chance of permanently worsening your symptoms. People who engage in "crash cycles," where they continuously overexert, crash, recover, and then overexert again, tend to end up housebound or bedbound. It's a condition where trying to remain involved with society and the workplace could be what makes it impossible for you to do so. Severity can also be cyclic, with no known trigger: you might be mild for years and then suddenly severe, and then suddenly moderate.

Another thing the CDC page doesn't go into is how it feels. Imagine your worst sickness, and then imagine feeling that way every day for the rest of your life, with no relief. Imagine going for a walk, or going out for the night, or putting in a shift at work, and then being severely punished for it for days afterward. It's insidious. You can feel yourself waste away and there is largely nothing you can do about it. We're colloquially called the Millions Missing because after a certain point, we disappear. Our baseline gets so low that simply existing in the presence of others is impossible. We can't rally, we can't protest, we can't fundraise, we can't do anything. Simple things like showering or making one meal a day can be the extent of your energy envelope, and there's no "rest up a bit and keep going." The truly insidious part is that mental and emotional exertion counts toward this as well. Laughing too hard could set you back. Being really excited can hurt you. Studying a lot of complex material can make it impossible for you to clean or cook. It's any kind of exertion.

ME/CFS is unique, and it's how modern diagnostic criteria can determine if it's ME/CFS, because exertion is specifically harmful. Exercise is a good treatment for a whole host of conditions, and is good for you in general. With ME/CFS, mitochondrial dysfunction means that our cells aren't producing energy like they're supposed to. We're physiologically less capable of the basic mechanisms of energy conversion. The more we exert, the worse we make it. No other condition has this, even those that give sufferers chronic fatigue. If I spontaneously want to go somewhere, I need to ask myself if I can even make it there, and then if I can, if I'm willing to accept the consequences. This is why for most of my 20s, I did one thing per year and nothing else. And this one thing was usually just going to the movies or going for a longer walk in a park. In my 20s, I usually only left the house to go for a walk around the block or to a medical professional/hospital. Social outings haven't been a thing except the times I go down to Seattle to stay with a friend, and then I'd stay with them for weeks and just sit on their couch the whole time.

Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM). People with ME/CFS often describe this experience as a “crash,” “relapse,” or “collapse.” During PEM, any ME/CFS symptoms may get worse or first appear, including difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe tiredness. It may take days, weeks, or longer to recover from a crash. Sometimes patients may be house-bound or even completely bed-bound during crashes. People with ME/CFS may not be able to predict what will cause a crash or how long it will last. As examples:

- Attending a child’s school event may leave someone house-bound for a couple of days and not able to do needed tasks, like laundry.
- Shopping at the grocery store may cause a physical crash that requires a nap in the car before driving home or a call for a ride home.
- Taking a shower may leave someone with ME/CFS bed-bound and unable to do anything for days.
- Keeping up with work may lead to spending evenings and weekends recovering from the effort.

 

[emzie]

My wife has fibromyalgia, which seems to have a lot of overlap with ME/CFS. Do you think this is the case?

MAiD (Canadian law regulating Medical Assistance in Death) is supposed to expand this year to cover non-terminal conditions. Do you think that right should exist?

 

[E.man]

I've got it too.

23 years.

Viral onset.

Mostly housebound.

I'm in Australia, where the official medical treatment is still 20 yrs out of date and says the solution is to exercise, which has been proven to make it worse.

Long COVID is reckoned to have doubled the numbers here. Something that we saw coming, but no one listens to us.

It was recognised as a nuero inflammatory disease by the WHO in 1969!!

 

[Synobun]

My wife has fibromyalgia, which seems to have a lot of overlap with ME/CFS. Do you think this is the case?

Comorbidity is really common, yeah. I technically am diagnosed with fibro as well but I don't really identify with it. To some extent, I haven't put much thought into differentiating between "what is ME/CFS" and "what is fibro." I have the pressure point sensitivity of fibro, but I have overall sensitivity from the CFS, so it could just be from that. I have the horrible all-body pain of fibro, but this could be from CFS as well.

MAiD (Canadian law regulating Medical Assistance in Death) is supposed to expand this year to cover non-terminal conditions. Do you think that right should exist?

I'm actually already eligible for MAiD! I flirted with applying for it between 2021-2022. I eventually chose not to. Despite frequent suicide ideation, I'm terrified of what comes after death.

I think it's designed to reduce the financial, societal burden of disabled people on the country. Dignity in death and all that, but there isn't much dignity in being forced to commit suicide because your government has abandoned you.

 

[Synobun]

I've got it too.

23 years.

Viral onset.

Mostly housebound.

I'm in Australia, where the official medical treatment is still 20 yrs out of date and says the solution is to exercise, which has been proven to make it worse.

Long COVID is reckoned to have doubled the numbers here. Something that we saw coming, but no one listens to us.

It was recognised as a nuero inflammatory disease by the WHO in 1969!!

The Canadian diagnostic criteria is considered one of the best, but even our system totally rejects all treatment and education about it. CFS is openly mocked here still, and I live in the only city in the country which has dedicated professionals for treating it. (I could complain about that too, for probably an obnoxious amount of time.)

Sorry to hear someone else here has it! You are of course welcome to answer questions too. It's not just my thread.

 

[E.man]

The Canadian diagnostic criteria is considered one of the best, but even our system totally rejects all treatment and education about it. CFS is openly mocked here still, and I live in the only city in the country which has dedicated professionals for treating it. (I could complain about that too, for probably an obnoxious amount of time.)

Sorry to hear someone else here has it! You are of course welcome to answer questions too. It's not just my thread.

Doing a good job.

In short, it's a systemic inability to produce energy at the cellular level so it effects every single bodily function.
Not only does stuff not work but it bloody hurts too.

 

[Hygro]

This will make the "mind over matter" crowd unhappy, but ...

Preach, brother. This brings back so many memories. I dipped into bedbound a couple of years, never really worse than 17-18 hours a day on average. 21 is insane. But I remember it being so far beyond mindsets. Like the worst flu fatigue days, all you can do is rest it out. But for months of a down spell. The up spell not much better. There's no waiting it out, just waiting. But I guess I was thinking more of how you've navigated a bit of your time post recovery. When I was going from the "tiny outside the house schedule" level to "I can carve out a little thing and do some things, carefully" level, sometimes to make the gap I really had to adopt certain beliefs and personality traits to keep energy composure.

But bedbound to housebound, it was amazing how people couldn't understand that's not even a thing. Like you have 10 minutes of energy to decide to shower, brush teeth, and microwave some food, 30 minutes to rough through it, that's it. All those stories of overcoming the odds never mention the over-comer used exhaustible willpower, they never suffer a lack of that critical energy resource that is the primary part of the disability.

 

[Synobun]

Preach, brother. This brings back so many memories. I dipped into bedbound a couple of years, never really worse than 17-18 hours a day on average. 21 is insane. But I remember it being so far beyond mindsets. Like the worst flu fatigue days, all you can do is rest it out. But for months of a down spell. The up spell not much better. There's no waiting it out, just waiting. But I guess I was thinking more of how you've navigated a bit of your time post recovery. When I was going from the "tiny outside the house schedule" level to "I can carve out a little thing and do some things, carefully" level, sometimes to make the gap I really had to adopt certain beliefs and personality traits to keep energy composure.

I guess it was important to not overextend myself, but I can't really say that with a straight face since I ended up doing exactly that when it was love on the line.

To some extent, I am fortunate in that I've already gone through the whole "Am I actually faking it? Can I just push myself through it?" phase. I still think sometimes "Maybe it isn't real and I can just be better if I decide that I am," but these thoughts are getting less as the years go by. But for the most part, my approach to these changes is from the perspective of how to make current life a little more tolerable. Big changes scare me now and I avoid them because I know the cost they have. I try to be slow and incremental when possible.

There's a trap here with the functional difference between bedbound and housebound. My mind is still a shell of what it was long ago. I can be upright for most of the day now, but my ability to do things is still mostly nonexistent. My work takes up all of my energy, and I am only barely managing it. This leaves me nothing for pursuing things I want to do or things that might lead to different, better work later.

A lot of my time, despite no longer being trapped in a bed, is still being trapped. I just look at the wall (or more commonly, a TV show) from a chair instead of from a bed. This of course feels big to me, because there's a horrible feeling when you can't even get out of bed anymore, but the functional difference is slim.

 

[aimeeandbeatles]

Have you ever had a doctor try to get you to do graded exercise therapy? The CDC stopped recommending it a few years ago.

 

[Synobun]

Have you ever had a doctor try to get you to do graded exercise therapy? The CDC stopped recommending it a few years ago.

Yes, this is still the go-to recommendation by most medical professionals despite every single legitimate study and the entire population body saying it's irreparably harmful. My current GP still regularly suggests treatment plans that I cannot do or suggests that I only feel the way I do because of personal failures.

 

[aimeeandbeatles]

On the same subject, what piece of unsolicted advice makes you most "fgfdsjfgdjgfgdfigfdijgfijgfijogfijgfd"?

 

[Synobun]

On the same subject, what piece of unsolicted advice makes you most "fgfdsjfgdjgfgdfigfdijgfijgfijogfijgfd"?

A client last year told me I would be cured if I put slices of onion in my shoes.

I also occasionally get targeted by self-help hawks who say buying their "system" will cure me. It's usually some variation of quack diet and yassified spirituality.

People, in general, have no idea what they're talking about but like pretending they're geniuses with a secret no one else knows.