[RD] Ask a Person with ME/CFS

[Synobun]

I just had my first appointment with a new specialist. While it wasn't great to read six pages documenting my health, and hearing that I rank as one of his worst patients health-wise, I am walking away with a new treatment plan that will hopefully make life more livable. I'm starting a new medication next week, have a referral for injections, and also have other medications lined up for when I reach my target dosage for the first. We also figured out a workaround for the medication so that it's covered by the government instead of me shelling out over a hundred dollars for it every month, which will let me continue taking CBD.

Well, it's been a year since this happened.

Results have been modest but good. Starting low-dose naltrexone has helped me tolerate exertion better and helps me avoid inducing post-exertional malaise. My crashes are less frequent and less severe. It has allowed me to do (very, very basic and simplistic) physical rehab, which I simply could not do before. I started at 0.5 mg and titrated up by .5 mg every two weeks until I reached 4.5 mg. Last month I moved up to 9.0 mg to see if I would receive more benefit from it. I'm not sure that I have, but there's no harm in staying at this dose, so I'll stick with it. If naltrexone sounds familiar, it's because it neutralizes the effect of opiates at its normal dose of 50 mg. At a low dose, it instead reduces brain inflammation. CFS causes inflammation in your body to skyrocket, and it seems that reducing inflammation in the brain specifically helps a lot with symptoms.

I did stop taking CBD shortly after starting LDN. They did not really synergize well, so I invested the money from the CBD into starting palmitoylethanolamide (PEA) after reaching my target dose for LDN. Availability of this drug is abysmal in Canada so I had to import it from America at a hefty premium. It helped while I was taking it, but when my income cratered, it was the first thing I stopped investing in. Besides that, I haven't started any other drugs from the specialist as none of them are covered by disability. Low-dose Abilify would be nice to try out, but I'd need to save up a few hundred dollars first so that I could get through the entire trial period.

I went to a single injection appointment and then never went back. The distance was problematic, and the specialist in charge of it was... strange. Very infantilizing and very bad at listening. All that happened at my first appointment was dry needling (pointless, yet she claimed that often helped people, which is a lie/purely placebo) that made me bleed and then a promise that she'd use actual steroids and Botox the following appointment. I never bothered. I wanted to get these done to jumpstart rehabbing my hips and back, but I managed to achieve this myself after starting LDN. They aren't in great shape yet, but since last year, they are much less of a wreck.

I did however start taking clonidine, prescribed by my GP. With my weight loss and improved health, I was hoping that my temperature dysregulation and sweating would get better. My tolerances have improved, but the sweating has not. I still get drenched within a few minutes of any basic exertion, so now that I can theoretically spend time around other human beings, I'm still very limited. By the time I get to where they are, I am a wet, overwhelmed mess that can't be touched because I am soaked. Clonidine was a drug recommended to me by my GP and it is thankfully covered by disability. I would say it helps some of the time, very inconsistently and without a pattern. 20% of the time it helps a lot, 40% of the time a little, and then the remaining 40% it does nothing. I might need to look into doubling the dose and seeing what happens then.

I need to take medication to neutralize bile acids but there's a shortage and there won't be any more available until at least July this year. I can eat pretty much anything since my gallbladder removal (excepting stuff restricted by MCAS), but my body's gastrocolic reflex is very sudden the first time I eat every day, and it causes pretty bad, urgent bathroom visits 3-5 times over the course of two hours after eating. Once it's done, I'm fine the rest of the day. I've tried to manage it with diet, timing, serving size, etc., but the reflex just won't cut it out. It's pure bile and almost no actual digested content, so I want to get a resin powder that binds to the bile itself and then see if that calms it down. But I can't, so I'm at a bit of a loss. Pepto-Bismol works great for general IBS distress, but it does nothing for this. The only other option, according to my GP, is Imodium, which is super expensive. And I'm also skeptical, since it's similar to Pepto-Bismol. Granted, it functions differently, but I'm still skeptical that it'll help.

All in all, I'm glad I got into the clinic and started LDN. Over the year, my specialist has said unusual things that make alarm bells ring in my head, but I guess it comes with the territory, and I wouldn't have been able to get it prescribed elsewhere by anyone else. In fact, I first asked for a referral to the clinic because my GP refused to research my disability and prescribe medication for it. I just have to double-check everything he sends through the patient portal, because it's happened more than once that he's recommended pseudoscience. Surprisingly, hypnosis is not an effective treatment for a physical disability, and yet he'll promote webinars about it. Really annoying, and I know it's misleading lots of patients who don't have the knowledge necessary to know better. It makes it difficult to advocate for these conditions when the specialists are almost universally so adjacent to quack science.

 

[Quintillus]

Why do you think it is that even many doctors don't take ME/CFS seriously? I can understand not being familiar with uncommon conditions, but the dismissiveness described strikes me as... unprofessional?

It reminds me of much of what one of my friends has told me about his as-yet-undiagnosed condition, which matches up with at least several of the diagnostic criteria you shared on the previous page, including persistent fatigue that left him essentially bed-bound for a good part of the past four years, and still homebound. He's mentioned multiple times on calls something to the effect of "I know you're not going to believe me" which always left me thinking, "why wouldn't I believe him, I've known him for more than half my life, and I know this wasn't in his plans", but his own family has fallen into the thinking-he's-just-making-it-up camp at times, including his dad who is an MD, so I can see why he has the concern.

How did you wind up being diagnosed after moving to the West Coast? Or put another way, how did you find someone who did take you seriously and had the proper background to make the diagnosis?

 

[Synobun]

Why do you think it is that even many doctors don't take ME/CFS seriously? I can understand not being familiar with uncommon conditions, but the dismissiveness described strikes me as... unprofessional?

Partly misogyny, partly just a product of the times. Post-viral illnesses affect women far more than they do men, likely due to how the immune system functions in women, and we have a long storied history of dismissing them. Endometriosis is a good go-to example of this primarily because it's so obviously physical, in a really plainly noticeable way with basic medical technology, and it still took until the 40s for something, anything, to be done about it, and until the 90s for better medication to be approved. Even now, diagnosis for endometriosis takes 7-12 years. My point, basically, is that we have 2000+ years of history of doctors dismissing physical conditions as the workings of an addled brain, and they've always had a special focus on doing that to women.

Another possible reason, in my opinion, is simply the nature of the condition. By the time it becomes severe enough to be undeniable/noticeable, you've already disappeared from public life. In the distant past, you would have simply died after losing a certain amount of capability or been labelled the family leech as you suck up all the resources while contributing nothing. You're a malingerer, not sick. You're touched in the head, not disabled.

While you're still mild, you can do a pretty good job hiding it from people. You can go out, make an appearance, and then disappear for a few days afterward in the privacy of your home recovering from the ordeal. To the people who saw you, they saw a perfectly capable individual. They don't see the consequences once you're out of the public eye.

It's also somewhat localized. Most publicized cases in the 1900s were as a result of epidemics. A large, sudden surge of viral illness will strike a population and then a certain percentage of them will never get better. But then you run into the issue where up until the past 20-40 years, we didn't have the technology necessary to look deep enough to see the changes in our cells, our metabolic/mitochondrial function, and so on. For a long time, and even now, basic testing doesn't show anything until you get severe enough for the deficiencies and breakdowns to start happening. You have to study reactions, chronic effects, and in a lab setting, use specialized equipment to specifically look for a very exact thing. Financially, the costs don't make sense, and they also don't know what to look for. We're still in the baby stages of research*. Funding for CFS research is one of the lowest, especially when considering patient numbers. Globalization/ease of transportation definitely increases the likelihood of developing post-viral illness simply because you have access to so many more viruses, and every time you get infected you roll the dice on whether or not it'll cause chronic issues.

Another big reason why it's not taken seriously is because of a paper released by a couple British psychiatrists in the 70s. They argued that it was simply mass hysteria and malingering. It was almost immediately refuted, and later in the 70s the Royal Society of Medicine officially recognized CFS as a neurological condition. The WHO, meanwhile, already considered it that since the 60s. The hit job stuck though, and it became the default approach: anyone exhibiting symptoms of CFS was merely a ne'er-do-well, prime real estate for a psychologist to work their magic. It's completely ignored in medical school curricula. Any education on the subject is at the professor's discretion, and they simply exhibit their personal bias: they're fakers, they're lazy, they're head-cases. Students are taught from the minute they enter the doors of med school that we're physically capable people intent on being useless. In general, though, doctors aren't known for being compassionate, open-minded people. The culture surrounding medicine welcomes binary, unforgiving opinions.

*Every nation holds blame in this, but one particular figure that most in the CFS community look down on is Fauci. Yes, that Fauci. He shut down every single ME/CFS research program in the US over 20 years ago when he was in charge of funding. As the NIH expanded, funding for CFS research plummeted. Total funds across the entire US were enough to maybe fund one or two barebones studies a year, if the team was lucky. Given the structure of the funding environment for researchers, that also discouraged new teams from trying to submit proposals for CFS research. What was the point if there was no money to get? There's no money anywhere for taking a closer look at the condition, and so nothing gets investigated. That's changing now due to long COVID, but the anti-CFS bias still exists, and most studies specifically preclude us from participation despite 50+% of long COVID cases meeting the diagnostic criteria for CFS. (It doesn't help that long COVID is an umbrella term that covers both ME/CFS and organ damage.)

 

[Synobun]

How did you wind up being diagnosed after moving to the West Coast? Or put another way, how did you find someone who did take you seriously and had the proper background to make the diagnosis?

Access, mostly. I grew up in rural Ontario where there was a single doctor for everyone. He did a basic blood panel and told my parents I was just anxious. Problem solved. (Problem not solved.) Where I live now is the only place in the entire country that has a medical program for people like me. They did not diagnose me, but a rheumatologist did, and with that diagnosis I got accepted to that program long, long ago. It did not help me back then, but I hear it helps others nowadays, so that's nice. It was a year-long slog of going to a new GP, then an internist, then a neurologist, then a rheumatologist, then another internist... Thankfully, the road to getting a diagnosis was pretty simple once I had the ability to see those doctors. Not that it offered any solace or comfort, given that this diagnosis is exactly what my first internist said to me at the time: "We know there is something wrong, it's measurable, but there is nothing we can do about it."

I'd recommend your friend see a rheumatologist, at least. Their state society/support group for ME/CFS probably has a list somewhere of specialists who have education in these sorts of conditions. I wouldn't go to just any random one. Unfortunately, it's the case where you need to find a professional that is, er, "sympathetic." Same as when you're a PoC or trans. You can't really blanket-trust someone because they went to med school. The doctor needs to have sought further education in this space. I was lucky, but a lot of other people aren't. A rheumatologist will check them for everything autoimmune and, if they're a good one, go through the diagnostic criteria for fibromyalgia and CFS.

 

[Quintillus]

Thank you for the detailed answers to both of my questions. Both make sense, even as the causes of the lack of taking it seriously are unfortunate. It makes me curious what my med-school-attending friends are aware of with regards to ME/CFS. Are they aware of it at all, even?

I will forward the rheumatologist suggestion to my friend. He has seen a lot of types of doctors over the years, but I can't recall him ever mentioning a rheumatologist. Prior to when things got really bad in 2020, he was also in the Seattle area, and he's been trying to get well enough to fly back there ever since.

Thinking about this thread this morning, I was also reminded of another student from my college. She was well-known, energetic, always upbeat, and some time around spring break of 2008? or 2009? she got really sick, with chronic and deep fatigue being the main symptom. I knew her at a "catch up at the library or the cafeteria" level, not a close friend but somewhat more than just having shared a class. From what I remember hearing back then, she saw a lot of doctors while staying with her family, may have visited campus once, but had to suspend her studies and never re-enrolled on campus. But it was somewhat as you describe - lots of people inquiring about her after she didn't return post-spring-break, and gradually fewer and fewer often over time, and with less to share from those who did know her well.

Looking her up on LinkedIn now, she appears to have found a successful career (at least by the outward appearance), and it makes me curious - in post #9 you wrote, "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)". Is there a ballpark estimate for how many people get better within two years? Or is it low enough that it's more likely that someone with chronic fatigue over a period of months, but who later recovered, had a different condition to start with?

 

[Synobun]

Looking her up on LinkedIn now, she appears to have found a successful career (at least by the outward appearance), and it makes me curious - in post #9 you wrote, "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)". Is there a ballpark estimate for how many people get better within two years? Or is it low enough that it's more likely that someone with chronic fatigue over a period of months, but who later recovered, had a different condition to start with?

Fatigue after illness is very, very common. It's why they don't even start considering CFS until the fatigue has been chronic for at least six months, and even then, a good doctor will inquire if you have any sort of post-exertional malaise. This is the unique identifier of CFS, as no other condition has it. There are conditions that are antagonized when you're active, but with CFS specifically—most noticeable at early to mid onset—there is a delay effect. You'll be active, be fine during it, and then 12-48 hours later you're hit with crushing consequences that take days if not weeks to recover from. As you get worse/less active, the delay effect shortens as your body is weaker, but even now as bad as I am, there's a still distinct delay when I exert, although the exertion itself is now a significant challenge. The sensation of PEM is somewhat of a spectrum, but the most common descriptor is that it feels like there's poison in your veins. Your brain is slow, murky, your muscles are weak, shaky, and you generally feel like you're at the peak of a severe flu. That quasi-delirium and suffocating weakness both hit during PEM, and as you grow more severe, you'll feel that way more and more at baseline. Most stimuli makes you worse during a crash, so you're effectively trapped in a dark room trying your best to not be a person until it lifts. There are other symptoms, but they become almost footnotes compared to that all-encompassing obliteration of any sort of functioning.

I do not know if there are any in-depth estimates for recovery within two years. Probably somewhere, I imagine. It's the range that all the specialists and immunologists/rheumatologists use. If you're suffering from post-viral effects, the best recommendation given is to immediately de-stress your life as much as possible, drastically cut back physical activity, and optimize your diet for two years in order to maximize your chances of getting through to the other side. The physical mechanisms behind this aren't well known, as far as I know. I couldn't even begin to guess as to why. I mean, the logic of a calm, healthy life is sound, but I'm not sure why it might help stave off the chances of a permanent, disabling condition after a viral infection. There is a theory that CFS is caused by viral persistence deeper in the body's cells, but it's not proven, and I'm not sure how likely it could be. There's been a couple long COVID studies where they're finding COVID spike proteins in sensitive tests in people who were last infected 6+ months ago. Maybe there's something to it? I have no clue.

There was this assessment done on recovery/improvement rates: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9600584/ An analysis of a series of studies put improvement rates between 17-64% (the latter figure here seems overly optimistic IMO) and recovery rates between 0-8%. I don't have the energy at the moment to read in-depth for the timelines involved for recovery, though a quick scroll showed me a chart where most of those recovered within 6-10 months.

 

[Quintillus]

That is very interesting, I hadn't realized until now that the post-exertional malaise could kick in that long after the activity. It makes more sense now how it is possible to make an appearance where the chronic fatigue is not noticeable to others. Although I can see how that delay could complicate others understanding the condition.

0-8% is indeed a ballpark - not unheard of but not pretty unlikely. Combine that with the theories about the mechanisms and the possibility that stem cell treatments could make a difference, and it sounds like it could be an interesting condition for a researcher to study.

 

[Valka D'Ur]

While you're still mild, you can do a pretty good job hiding it from people. You can go out, make an appearance, and then disappear for a few days afterward in the privacy of your home recovering from the ordeal. To the people who saw you, they saw a perfectly capable individual. They don't see the consequences once you're out of the public eye.

This is something I've had to explain to the manager here over and over. He keeps insisting that yes, I can do this, that, and the other, since I was "fine" when we had our last chat in his office.

I told him, "You see me on my good days, when I've got energy to actually leave the apartment."

I think he got the point on the day when I had an appointment that I couldn't miss. He said, "You looked like you were about to pass out."

I told him that's exactly how I felt. But I had to try to keep that appointment (with the eye specialist; they do an annual follow-up for diabetics who have had cataract surgery, and appointments there don't grow on trees).

 

[E.man]

We're getting nowhere trying to get better recognition , let alone research for treatment, here in Australia even with Long Covid doubling numbers.

Peak body for GPs the RACGP still holds to their 2002 policy of exercise as treatment, which is like suggesting trampoline for a broken leg.

My GP is supportive but won't give me Low dose naltrexone beccause I take Tramadol for the pain. Yes, nothing works and it hurts.

As above; the worse we get the less we're seen. It's an invisible epidemic.

 

[Snerk]

I often refer to my health situation as ME. It's started at around age 17 without any obvious explanation. Although I feel it's a bit of a lack of a better term. Even though ME is somewhat of an umbrella term it's usually mostly associated with chronic fatigue which isn't my main issue, though often part of it. Abdominal symptoms are usually much more predominant in my case but disorders like IBS are also not a very accurate fit for my situation. Wish I had a precise health label to put on my situation but that's the case for many people.

 

[aimeeandbeatles]

Out of curiosity, can specific weather set off the post-exertional malaise without any 'exertion' from the person themselves?

 

[Valka D'Ur]

Weather can have a profound effect on how we feel. Some people get energized by the summer sunlight, for instance. But summer is a season I dread (along with spring). Summer is too hot. It slows my thinking, and when the heat is really getting to me... well, it's a good thing I have a cat. There have been days that if not for the necessity of making sure she has food and water, I wouldn't even get up. The energy just isn't there.

 

[Synobun]

Out of curiosity, can specific weather set off the post-exertional malaise without any 'exertion' from the person themselves?

As a direct A -> B, I'd say no, but weather definitely can dictate what my energy envelope is, and my ability to discern that isn't reliable. So indirectly yes? If I do my normal level of activity on a day when the weather has reduced my tolerances, then I'm going to be overdoing it and suffering the consequences.

I've invested significant effort into trying to tolerate the heat and sun better the past couple years, to some success, but I still need to be more careful than I usually am during the summer months.

 

[Comrade Ceasefire]

Thank you for your remarkable answers to so many questions.
I understand that not everyone's symptoms will be identical, but your lucid, well-written answers begs the question, since (to quote the CDC page) one of the symptoms is "trouble thinking".

Does answering questions in this thread take a substantial effort, one that takes a toll and requires a prolonged rest afterwards?

I hope you find a remedy soon. I am very impressed with the thread and I am sure some people I know with symptoms milder than what you have endured find it useful.

 

[Synobun]

Thank you for your remarkable answers to so many questions.
I understand that not everyone's symptoms will be identical, but your lucid, well-written answers begs the question, since (to quote the CDC page) one of the symptoms is "trouble thinking".

Does answering questions in this thread take a substantial effort, one that takes a toll and requires a prolonged rest afterwards?

I hope you find a remedy soon. I am very impressed with the thread and I am sure some people I know with symptoms milder than what you have endured find it useful.

Takes a toll, yes. I generally don't start typing any answers if it'll lead to the latter, though. There's also lower cognitive load involved when I'm typing off the cuff about something I already know that doesn't require complex thinking.

When it comes to work, or learning new things, or thinking through complicated problems, I am basically useless. The hustle required to be successful in my field is something I'm incapable of, so years later I'm still toiling at sub-minimum wage and perpetually on the verge of homelessness/having no work. I've been learning Swedish and French for two years and have only the barest of skill in either, with almost nothing to show for it. I don't participate in any hobbies that require cognitive load (like writing) since all I have goes into work, and even that's not enough.

I'm good at what I do and have the mind for it, but I don't have the energy for it. Most of the time, my brain is soup and I only have a fork.

 

[E.man]

Out of curiosity, can specific weather set off the post-exertional malaise without any 'exertion' from the person themselves?

If the weather requires energy to deal with it then it will impact because body is exerting itself.
It takes energy just to stay alive.

 

[E.man]

You won't hear from ppl who are really sick with this.

It's also not just physical. My mental health very fragile cos I'm slowly dieing and left alone to rot.