Part 2 of 2: Your treatment options should always be YOUR choice.

What makes me even more motivated to do all of this is a situation I’m in with my pain management doctor. Words can’t express how thankful I am for his help, but the office is crowded, and sometimes they are more interested in swiftness than quality time. And generally, you’d think adequate communication to be fairly important when discussing things such as burning your nerves as a type of “treatment”?

The conversation has always been, We’ll try to numb the nerve, then if it works, we’ll burn it. Never once was I asked how I’d feel about this, or if I wanted to do it. So much so, that I nearly forgot to contemplate it, myself! And because of the side effects I got from just their “trial” shot, it would probably result in the same bizarre side effects: Never being able to recognize myself in the mirror, and never being able to keep my balance even with my eyes OPEN.

Does that sound at ALL how I want to spend what could be my last stretch of life able to truly function? NO. (I still don’t know why those odd side-effects accompanied my injection, but that’s what happened.)


They were very willing to work with me when I discussed how I ABSOLUTELY CANNOT have the steroids which usually accompany the nerve block/make it last longer, but I’ve had a lot of anxiety about discussing with them how I can’t take the risk of burning the nerve, mainly because I don’t want to seem like I’m not wanting to help myself. I don’t want to come across as just wanting pills and get some unwanted reputation as a pill-seeker, which, as much as pain management advocacy groups make it seem like everyone has the right to pain control, I’m sorry, but being mislabeled still happens.

Part of the reason it took me so long to seek pain management is because in the past I was always denied it at the ER. They didn’t believe me and thought I was just there for drugs because my conditions (Fibromyalgia as well, at the time) were (and still are) poorly understood. So my anxiety has stemmed from this, because what if my current doctors also don’t understand? But, I’m at the point now where I’m too frustrated with the fact that my opinion over what I want to do with my body was never even contemplated, so they will either understand, or I’ll find a new clinic.  We have to talk about how I do not want to do that to my body.


My point in this two-part entry, is this:

You don’t have to do what’s “expected” of you, when it comes to your health. Whether that concerns end of life care, medical treatments, or prescription options: If you want them, and you think they’re worth the risk–and they all have risks–then try to get them. But don’t feel pressured to get them just because someone else thinks it’s right, because your doctor thinks it’s right, or because other people wish they could have it, if it’s not really what YOU want for YOUR body and YOUR life.

For a long time I even felt guilt over turning down my treatment because there are people who want to get treatment, that can’t… But that doesn’t do anyone any good at all. It doesn’t make sense to kill myself with antibiotics just because someone else wishes they had any antibiotics at all.

And don’t forget to consider what it means in the long run.

Many people want to stay around for as long as possible, no matter what the cost; for their children, spouse, best friend, others who need them, without stopping to think of how those emotionally-charged decisions are actually going to affect their life. It’s worth the extra thought. Are they still getting “you” if your attempts to just stay alive rob you of your body and mind? Is it in the best interest of your values and morals? And are your morals and values in your best interest?

At what point is prolonging your being alive with the aid of modern medicine, only going to promote your suffering?

Cellphone photo #10
“I will live. we all one day will. but where’s the difference between life and living?” (Photo and text credit: Leni Tuchsen)

a rainbow at night

This is an entirely new way of formatting, but…

…it’s the only way for me to get this entry published. I’m basically forcing myself to update. I won’t be making a habit of this, but for now… Purple things about life, black things about health updates (read as: Purple for things that are semi-interesting, black for things that I need to write down lest I forget). Also, some random quotes by me, because, why not.

  • June 5th: I started reading American Gods. (So far I’ve made it to chapter four, I think.)
  • June 6th: I got my bloodwork back, showing that my liver enzymes are perfectly normal, back in their 20s and 30s, thanks to the Liver Chi my LLMD put me on! I’m enthralled. If anyone is having trouble with their liver enzymes, and milk thistle isn’t enough, try this stuff! I’ve been on 2 capsules 2-3 times a day, as per doctors orders.

~*~ Life is like Music. If you combine a few key, simple
elements in the right way, you get beauty.

  • June 8th: Spent the day listening to music and watching the rain. If you want to know what it sounded like (AND YOU DO), open and play this and this at the same time. Also, decided that one day I will own a professional camera.
  • June 9th: Shaking for most of the day with very visible tremors.

~*~ Acceptance doesn’t mean we sit back, stop fighting, and
give up hope. It means we acknowledge truthfully
where we are and how we feel about it.

  • June 10th-11th: Muscle fatigue (via M.E.) due to a lot of arm usage in talking/typing to a bunch of amazing people. (It was worth it. ♥) Also very, very sore, with a “I feel like I’ve been run over” type of pain, reminiscent of my fibromyalgia days, but not as severe. I had ordered some very soft clothes that finally arrived, which really helps the burst of peripheral neuropathy I’ve gotten lately. I’m assuming my nerves are trying to heal from whenever these infections had spread to my arms several months back. Fioricet is a HUGE help for neuropathic pain!
  • June 11th: I realized that, over the past.. well, a long time, I can’t remember anymore, but I’ve developed oromandibular dystonia that’s mostly triggered by eating. I hope it is worsening now because of herxing, like my other forms of dystonia did when I began treating bartonella last year, and not because it’s something that’s going to hang around. I have quirks, yes, but it is mainly triggered by me trying to eat and chew, etc. Perhaps there is some kind of sensory trick I can learn to tame it? I have some information about when it may have started thanks to my wonderful tagging system, but I’ll have to sort through that, later.
  • June 12th: My niece made me an acronym poem, something awesome about me for each letter, and left it out for a surprise. Aha. I love being the aunt. ♥ Also, I needed my glasses this day. Most days I am fine and don’t need them indoors, but it was a “blurry-can’t-see-the-tv” day. Does anyone else get that? You just wake up with poor eyesight?
  • June 13th: I felt great, it being a Wednesday and the furthest day from my Thurs-Sun Flagyl pulse. And for the record “great” means being able to breathe when I stand up, and able to walk around. I did some minor cleaning, and even did some laundry!

Yesterday I had my cardiologist appointment. He agrees that the palpitations are probably from the Liver Chi, said to be careful with the ibuprofen since it is also processed by the liver, and to continue getting regular labwork to make sure things stay stable. If anything continues to flare, I should go see him again, but as of now I am good for another five months and I don’t need to repeat any heart function tests until next year. :) He’s sending me to get a urinalysis because I have nocturia that has been worse the past several months. During the day I think I urinate a normal amount, but during the night it gets worse, and we’re not sure why. I also told him about this cough that’s gotten worse the past several weeks, but I forgot what he said! Also, I had the beginnings/continuation of further eye problems, which I want to talk about, more.

My eyes continue to be a bother for me. As I mentioned previously, I’ve been staying in the dark since beginning treatment because it is too painful to be in normal light. Some random days I am okay (like the day it rained, and I was able ot have the window open!) but for the most part, it is me in my dark room with my dim lamp.

As for this recent “episode,” I assume it started on the 12th when I woke up and needed my glasses. Then yesterday, as I was lying on the exam table waiting for the doctor, every time I opened my eyes, the walls were a different colour. Yesteday night, the photophobia started. (I need to make a photophobia tag…) The light from my cellphone, on its lowest setting, was excrutiating. Today it was just as bad.

I have my one window covered completely with layered curtains, and thumbtacks around the edges to keep them completely shut–the only light that enters my room is through the top of them, and I even have a towel over that. Just the few flecks of light that managed to escape through the top of the towel this morning were enough to make me roll back under the blankets in pain. I eventually got up and threw two more towels on it. After several hours in the dark, some ibuprofen, and some coffee, I am much better, hence the typing. According to my tags I’ve had this exact set of symptoms in April of last year (cough included!), and it was when I was (1) on Zithro (read as: Biaxin’s cousin) and (2) having one of my “these are strange symptoms what is going on” phases. So I’m going to assume this is Lyme or Mycoplasma, and just be glad I am on antibiotics to kill both of these beasts. :\ At my next LLMD appointment I want to start A-MYCO from Byron White formulas, too.

…And there we have it!

a rainbow at night

Guest blogger: “It is healthy to talk about what you are going through.”

I’m here to make another installment to my Life Lessons section, but this time, with the words of a very special guest blogger. And I don’t say very special because they are well-known, famous, or something like that. But they are, in my opinion, one of the most amazing people to exist. My dear friend–who has a birthday today, no less!–who has impacted my life in more ways than I could count, wrote this several days ago, and I thought it was way too important not to share (especially since they agreed to write something for you all sometime this year!).

I’m really tired of “not talking about your illness” equaling “being a stronger person.”  No.  It is healthy to talk about what you are going through. 

Illness is not something to be shoved away and ignored like it is dirty and shameful.  No.  Illness, disability, old age, and dying are a part of life.  It is natural.  It has been with us forever. 

Every single human being that has ever lived has dealt with it in some fashion.  Every single human being has died, or will die.  If they live long enough, those still among us will will watch a loved one die.  They will get older.  They will encounter disability in themselves or others.  They or somebody they love will get sick. 

For me, it would be unhealthy not to talk about something so inevitable and universal. 

I talk about my illness.  I am sure it makes some people uncomfortable and has driven some people away.  But it affects nearly all of my life right now, and I see no reason to pretend like it does not.

— the author of Black Cat Saturdays


No one should be made to feel like they have to deny a part of themselves or a crucial part of their life in order to win the affection and/or acceptance of another. As with anything in life, it’s all about balance. We have to find a middle ground between talking about what we are going through, honestly, and yet not being consumed by it. I know people on both extremes–those who never talk about it, and those who talk about absolutely nothing else. It is detrimental either way. The person who never talks about it–perhaps to keep people around, not make others uncomfortable, or stay in denial about their own circumstances–ends up feeling cheated, abandoned, and can lose self-respect. The person who talks about nothing else, forgets who they are entirely, and sees themselves only as “the person with such-and-such disease.”

But we are more than sick, or disabled, or terminally ill. We still exist, and we still have purpose and love to share. But in order to get to that place, we have to realize–and hopefully be accompanied by people who realize this, too–that we are also people who have to grieve in a healthy manner, who have to express ourselves as we go through this part of life, and it’s not our job to make sure everyone else stays comfortable while we do it.

As written above, we will all go through these things at some point. It’s just that we, who are already going through it, simply don’t have the time or extra energy to spend worrying about someone else’s opinion of how much we’re “allowed” to share before they feel inconvenienced…

a rainbow at night & black cat saturdays

I feel the need to share again: “The Silence of the Dying,” by the Sara Douglas.

Remission from Fibromyalgia?

humboldt redwoods state park
© a rainbow at night

Fibromyalgia (FM, FMS) is a pain syndrome that is usually triggered by a physically stressful event, such as a car crash, surgery, accident, severe infection, or another illness worsening/starting; more or less, it’s the consequence of something else. The pain is primarily in the muscles as well as the tendons that support the joints, lending to severe, widespread pain and joint stiffness, but without actual inflammation. The syndrome does not damage the joints, muscles, or any organs–it just feels like it! There is an extreme sensitivity to pressure (allodynia): Things that would not normally hurt–such as receiving a gentle hug–become extremely and lingeringly painful. The pain never stops, is absolutely everywhere, all the time, and may particularly revolve around the tender point locations necessary for diagnosis.* Someone with fibromyalgia will be hurting when they are sitting, standing, walking, or lying down.

Temporomandibular joint disorder (TMJ) is very common, and a major contributor to headaches. Irritable bowel syndrome is also extremely common. Sleep problems may include an inability to fall asleep, but particularly revolve around problems staying asleep. Someone with fibromyalgia may wake up every single hour at night due to the brain’s inability to conduct normal sleep waves, in this case known as an alpha-wave intrusion, which causes bursts of brain activity during what should otherwise be restorative sleep. Partly because of this, fibromyalgia is accompanied by a great deal of fatigue that may or may not be manageable. Cognitive problems are multiple and very prominent, including things like severely impaired short-term memory, working memory, any ability to recall the names of everyday items, and silly things like placing the television remote in the freezer and the popsicles on the coffee table. (Or pouring your cup of tea into the sink instead of your cup… I may or may not be speaking from personal experience…)

Other symptoms include tingling and numbness of the extremities (your arms and legs), muscle spasms, sensitivity to weather changes (instead of turning on the local news, ask your Local Person with FM if there’s rain or snow coming), and a high rate of restless legs syndrome.

Stress is NOT the cause of fibromyalgia, but stress exacerbates any chronic illness, so proper management of stress is essential to keeping your pain, fatigue, and sleep problems as mild as possible.

Fibromyalgia is not an inflammatory disease. It is also not a progressive disease, though symptoms wax and wane over the course of several months, and can be disabling. If you are experiencing inflammation and/or illness progression, see another doctor for other illness possibilities besides fibromyalgia, which may only be a symptom of another, more serious disease process or underlying infection.

It is known that fibromyalgia can disappear on its own when it’s associated with myalgic encephalomyelitis (ME).** But what about otherwise? Does treating the disease that triggered FM always make the fibromyalgia go away? That certainly wasn’t the case when I fell ill: Although myalgic encephalomyelitis triggered my fibromyalgia, when the M.E. went into remission, the FM remained to torment me…until it, too, slowly abated a year or so later, ironically right as the M.E. returned/relapsed. I expected that additional neurological trauma might reawaken the fibromyalgia, but even throughout the Lyme disease ordeal that followed, the FM never returned (although I am now left with permanent, disabling pain).

So, does fibromyalgia ever naturally remit on its own in other circumstances? We may never know, because the consistent over-diagnosis of fibromyalgia has severely muddied scientific research. For instance, there may be thousands of people diagnosed with FM who also have M.E., who’ve just had the unfortunate circumstance of being diagnosed with fibromyalgia first then stopped looking for additional explanations. Also, nearly everyone I know battling Lyme disease–I am not exaggerating–initially had a diagnosis of either Chronic Fatigue Syndrome, fibromyalgia, or both. It was only their persistent digging that eventually afforded them the actual cause of their progressing pain, fatigue, brainfog, and neurological disturbance. If you do need to be properly evaluated for Lyme disease–and unless you’ve specifically seen a Lyme Literate medical specialist, you probably do–you can read this and call IGeneX to order a test kit for your doctor, as they test for all possible bands (NOT just the most common thirteen available on standard testing). Additionally you may watch Under Our Skin, am excellent documentary film containing people with fibromyalgia (as well as other diseases like Multiple Sclerosis and Parkinson’s) who found out Lyme disease was the cause of their symptoms.

I don’t claim any of the tips below to be a cure–I think my fibromyalgia most likely remitted naturally of its own accord–but I can at least share how I treated the syndrome while I endured it, in case that might be of help to others. I could always, always tell when I was forgetting one of them.

  1. Magnesium

    You’ve probably read about this all over the internet, right? Sure you have. Well, it’s not just hype. I’m not going to pretend to know the mechanics behind why it helped, but daily supplementation with magnesium not only reduced my Migraine attacks (a condition I was born with) from twice a month to twice a year, but greatly reduced my muscle pain. I’ve read many an article over-analyzing the right “type” of magnesium to take for Fibromyalgia, but I can only tell you this: I bought the plain old Magnesium oxide with chelated Zinc from Walmart and it worked without fail. (I currently use magnesium l-threonate, however.) One important thing to note before you dismiss this one: I’ve always had normal serum magnesium in blood tests. The amount in your blood is not an accurate way to determine the actual amount of magnesium in your body.

  2. Foam mattress topper

    Actually, this might ought to be number one… It’s that important. Fibromyalgia is made worse by pressure on the 18 tender points…which are practically everywhere. It should be easy to grasp, then, why relieving this pressure whilst sleeping is essential to easing your symptoms: You’re pressing on them for eight hours at once! Invest in this, no matter what. You will not regret it. Personally I couldn’t sleep on anything that didn’t have two inches of bed foam for even one night. When I would try to visit friends and family and sleep there, I would awaken after just a couple of hours in excruciating pain, all from the pressure on these tender points. Also, sleeping better will help improve your cognitive abilities (memory and mental functions) and fatigue.

    ♦   For TMJ-related pain and/or head pressure, invest in an amazing pillow. You deserve it, and you need it! It’s all about support and relieving pressure on a body that interprets pressure as pain. I’ve personally been using Simmons Latex Foam Pillow (I cannot stand memory foam) and mine lasted 7 years before needing replacement–you will get your money’s worth!

  3. Protein

    You know what honestly made me start increasing my amount of protein? It was back in the day when Montel Williams still had Sylvia Browne (a world renown psychic) on his show on Wednesdays. Every time someone mentioned having fibromyalgia (which was largely unheard of back then), she’d tell them to eat more protein (and less sugar). I figured, it couldn’t hurt me one bit to try it, so I did. And I’ve been doing it ever since. (I’m not vouching for her abilities one way or the other, but that information helped me. I now also know that people with infections requires 50% more protein in their diet than those without, so that’s another reason for me to continue.) I made a pact with myself to get an adequate source of protein every single day for two weeks to see if it made a difference. Obviously, it did! I noticed I had more energy and wasn’t as weak. I highly recommend you try the same test.

    ♦   For me, it was chicken, and luckily there are hundreds of ways to prepare it so I didn’t get bored. For vegetarians or vegans it might be soy, or something similarly protein-rich that contains all essential amino acids but without soy, like this delicious chocolate protein shake that I also use.

    ♦   We all know too much sugar is bad for us. I switched to honey instead of sugar in my coffee, and cut down on my intake of white-flour, empty-calorie foods (which admittedly wasn’t very difficult since I didn’t eat a lot of that stuff to begin with). Honey is structurally different from sugar, containing mostly fructose and glucose (instead of sucrose), which is fancy language for: Your body can use more of it for energy instead of donating it to your fat reserves.

  4. Aloe vera

    If I had a dime for every person who told me “thank you” for telling them about this one! Fibromyalgia is, without fail, associated with some degree of irritable bowel syndrome; if ever a case existed without IBS, I’ve never heard of it. This stuff will help if your digestion is too slow or too fast (and many IBS sufferers cycle back and forth between loose and hard stools, sometimes even within the same day). I’ve had people tell me they’ve been able to start eating foods they previously couldn’t touch! Hopefully, if you try this, you’ll have the same reaction.

       ♦   I can’t stomach the drinkable form so I’ve been taking them daily in capsules for eleven years. While aloe vera has many other health benefits, it’s mostly to protect the intestinal tract and help keep things from acting out, whether to one extreme or the other. Note that it’s very important to consume the inner aloe vera leaf gel, not just ground up aloe vera leaf like you may accidentally purchase if you’re not paying attention…or having a healthy dose of brain fog. You can get the same relief from drinking it, but these aloe vera juice softgels are much simpler, if you ask me.

  5. Flexeril

    This is a muscle relaxant that used to be one of the only things your doctor could give you for Fibromyalgia, before Lyrica and all the others came around. People with fibromyalgia do not enter the restorative stage of sleep as often as they need, so the next best thing is to make it count whenever you do. Flexeril makes it to where your muscles relax during those rare restorative sleep stages, allowing your body to heal more than if you hadn’t taken anything. The difference is noticeable, particularly when you’re in one of those “waking up every hour” phases that leave you a zombie during the day (which contributes substantially to the “fibro fog” part of the illness). If sleeping aids cannot keep you from from awakening fifty times a night, at least you’ll get the most rest out of whatever REM sleep you do get. I personally had to switch to Robaxin (methocarbamol, another muscle relaxant), but just be sure to try something.

  6. Exercise daily

    If you’ve made it this far down the list, I hope you’ll stick with me through this section! I cannot stress enough how essential exercise is for fibromyalgia…nor how difficult it is to get started. But second to none does it improve fatigue and stamina, and second only to perhaps the mattress topper did it so quickly improve my pain. I.e., it helps a lot...and you probably want to start with all the others first (except the aloe vera, which is just for intestinal troubles), to give your body the best chance of recovering from the exercise. I could always feel my symptoms worsen when I hadn’t exercised for a day or two. The type of exercise I’m talking about is, for all intents and purposes, graded exercise therapy. This is the type of exercise that studies claim helps chronic fatigue syndrome, but do not mistake this for being a treatment for M.E. (which is not the same as CFS). I absolutely could not exercise until the M.E. began to go into remission. Only then was I able to very slowly start doing exercise, gradually adding on more and more activity.

    The first goal is to have fifteen minutes of activity a day. In the beginning I could only walk around my house for three minutes at a time, five times a day. Next, I moved up to five minutes at a time, but just three times a day, so still fifteen minutes total but more activity at once. When I felt comfortable with that level of activity, every morning I began rotating my joints across their range of motion; it was practically the only way I could fight the terrible morning stiffness, especially in the colder months. Feeling less stiff, I finally started adding in very gentle stretching exercises, similar to the ones you’d do before a run. First, just five minutes a day of very slow stretching, only as far as my muscles could go without feeling a strain. Eventually I was able to work this up to a full fifteen minutes straight of stretching, using my favourite music to make it more enjoyable.

    DO NOT try to do it all at once and DO NOT force yourself to exercise like a completely able-bodied person would. Right now you have an illness to manage. Just because you can’t do things the way you used to, doesn’t mean you can’t do them at all–you just have to do it differently, and that is okay.

    Even with this graded approach, it was still unbelievably painful. The first two weeks will be absolute hell. Probably not the best motivation, I know, but I want you to be prepared. Plan in advance to take care of yourself extra well. With fibromyalgia, you can’t stop just because it hurts the next day: If you do, it’s the same as stopping a new medicine, and you will lose whatever progress your body has accomplished. When I started this, I was exhausted and beyond sore the next day, then more-so the next day, then even more-so the day after that and so forth…until the breakthrough happened. “The pain stage” finally passed, I started to reap the benefits of my exquisitely difficult labor, and from then on? My symptoms were actually worse if I didn’t exercise! There *is* a light after the tunnel. I wouldn’t recommend this for any other reason.

    • Important: This is the exact opposite of treating myalgic encephalomyelitis, and part of the biggest proof that M.E., CFS, and FM are not the same entities. If your muscles begin to slow down the next day and are accompanied by burning muscle pain only upon movement, and these symptoms become worse every additional day until you are experiencing paralysis, you have more going on than “just” Fibromyalgia. If you’re suspected of the viral-induced neuromuscular disease myalgic encephalomyelitis, exercise will only cause symptom progression and irreparable damage, so STOP immediately. Other illnesses that cause different types of progressive muscle weakness in response to exertion are: Lyme disease, babesiosis, chronic viral infections such as CMV, EBV, and HHV-6, hyperthyroidism, and myasthenia gravis (which also results in paralysis). However, this is NOT AT ALL the same as experiencing more pain, more soreness, and more fatigue like you would with Fibromyalgia, because let me restate the obvious: You are going to hurt, be more exhausted, and not want to continue. But I can also tell you on behalf of myself and everyone else who’s ever successfully initiated an exercise routine with Fibromyalgia: It will help you.
    • ETA: I thought this much was obvious, but just in case: Please work closely with your doctor while attempting an exercise regimen so you don’t hurt yourself and so they can do any further testing that might be required based upon your response to exertion. These days you may even be able to find rehabilitation services specifically designed for fibromyalgia.

Am I cured forever? Maybe. I have days where something strange will happen–a herx while treating Lyme disease, a day of severe stress, a strong storm passing through–where I will get a rush of pain that feels just like fibromyalgia, and this leads me to think maybe the mechanisms behind it are not actually gone as much as they’re just not currently active… But I no longer suffer from its trademark symptoms. I no longer have a dull, gnawing, all-encompassing ache in my entire body that never quits and doesn’t respond to any painkiller, that makes it difficult to move any joint from the stiffness, that makes it impossible to sit or stand in one place too long because of the pressure causing a flare around the tender points; I no longer have irritable bowel syndrome; I no longer wake up 10-20 times per night; and I no longer have the specific sleep-deprivation-like brain fog that accompanies it.

Granted, I am still very much disabled, in constant pain, and live with cognitive impairments that sometimes make forming a sentence impossible…along with dozens of other symptoms. But at least it’s not fibromyalgia. I can only keep hoping that it never gets re-triggered, especially since there is practically no information out there about the recurrence of fibromyalgia-like pain syndromes in myalgic encephalomyelitis… But I have the feeling, with all I’ve been through the past eight years, if it were going to reappear wouldn’t it have already done so?

a rainbow at night

* Well, not anymore. The criteria for being diagnosed with FM no longer require you to have any tender points. Wow.
** You can read The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.) to read about the various pain syndromes that accompany the disease; an FM syndrome is known to occur then slowly abate after several years, which is what happened to me, even though I still experience severe, incapacitating pain as a result of M.E. + damage from neuroborreliosis.

Why I Think the New Myalgic Encephalomyelitis International Consensus Criteria are Not Much Better

I’m not one of those people who tries to find something wrong with everything. I just wanted one thing, and I didn’t find it.

First, none of this will make sense if you don’t understand this fact: Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (M.E.) are two distinct entities. If you look on my site’s sidebar, you’ll find this, which I’ll repost:

“Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings.

The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist.

Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare.

However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.” (United States Centers for Disease Control and Prevention, 2010)

This brings us two points:

  1. CFS has an internationally accepted case definition. This definition is based upon the symptom of fatigue without a known cause. All other neuroimmune symptoms are secondary and non-essential for diagnosis. So, if you have unexplained fatigue with sore throat and lymph nodes, headache, and post-exertional exhaustion, while another person has unexplained fatigue with poor sleep and memory, with muscle and joint pain, you both have the same illness as far as “CFS” is concerned, despite fatigue being the only thing you have in common.
  2. Myalgic encephalomyelitis also has a distinct case definition, accompanied by neurologic and muscular signs, and distinct from that of CFS. The best definition for M.E. is Ramsay’s definition, which describes the key feature being “muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis.” He goes on to write, “Without it, I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME of mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise” (Ramsay, A. [1988]. Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free Disease. [2nd ed.]. London).

After several outbreaks of what was undoubtedly M.E., the CDC did a mediocre investigation (if you can call sending one person to collect a few blood samples then announcing “mass hysteria” an investigation) and invented this “new” syndrome of chronic fatigue. Over the past 30 years, it’s become a catch-all group for anyone suffering from fatigue for which no cause can be found, which includes anyone with undiagnosed cancer, hypothyroidism, depression, Lyme disease, myalgic encephalomyelitis, and various other physical and psychiatric disorders that have chronic fatigue as a symptom. The only thing any of these people have in common, is that they are very tired, and are very sick; some of them are dying due to misdiagnosis.

“In a study of the Reeves empirical criteria [for CFS], Jason et al. reported that 38% of patients diagnosed with Major Depressive Disorder were misclassified as having CFS and only 10% of patients identified as having CFS actually had ME” (Jason, L., Najar, N., Porter, N., & Reh, C. [2009]. Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. Journal of Disability Policy Studies, 20[2], 93-100. doi:10.1177/1044207308325995).

Needless to say, it’s a very, very poor category to fall into when you’re sick and trying to cling to life. I’ll leave the conspiracy theories out of this, though nearly everyone has an opinion about how it came to happen that a deadly neuroimmune disease got classified as the same thing as a syndrome with “general unwellness and fatigue” as the main symptom. There’s much debate over if other pathogens can trigger M.E., but it’s usually described as having a viral onset and is classified as such by the World Health Organization under “post-viral fatigue syndrome”; it is known to be contagious in the beginning stages. Cort Johnson wrote that Dr. Byron Hyde, a world authority on M.E. and contributor to the ICC, mentioned having “reports of over sixty” M.E. outbreaks from just 1988 to 2003, which were “no longer figured in the literature” and “were not given any mention in the ICC”. Additionally, these criteria have completely left out the main symptom, which is an abnormally delayed muscle recovery after doing trivial things.

The core symptom of M.E. is in the muscles. How is this new international definition any better, if this main symptom is not the focus?

I strongly believe people with chronic Lyme disease are still going to be misdiagnosed with this new definition, which still focuses on “physical and/or cognitive fatiguability in response to exertion.” It includes “neuroimmune exhaustion,” now, but did you know that Lyme disease also causes an immune system dysfunction 24-48 hours after activity? “…[T-cell function] will depress for 12 to 24+ hours after exercise, but then rebound” (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses, Joseph J. Burrascano Jr, MD. September 2008). I’d imagine other chronic infections can do this, too.

In this new paper, they source the recent CFS study about spinal proteins which claims to distinguish CFS patients from “Post-treatment Lyme disease,” but the fact that they are even mentioning the phrase “Post-treatment Lyme disease” is horrifying, as such a category doesn’t exist: Ongoing infection–which has been proven--is the cause of so-called “post treatment” Lyme symptoms, and to not acknowledge this represents a greatly detrimental misunderstanding on their part, and to their efforts. You cannot afford to not understand something an entity that shares so many symptoms with the disease you are studying. Also:

How can you possibly quote a study that uses the same flawed definition of CFS you’re trying to protest, as a support for your paper?? That is a circular argument, and completely unsound.

Thanks to a link at THE NICEGUIDELINES BLOG, I’ve been able to view the full paper that was ultimately published in the Journal of Internal Medicine. I recommend you visit there and read the paper for yourself, but here is the proposed new definition, via photo:

(ETA: Click here for link to paper/proposed criteria.)

All of that said, I really do think this new definition is a huge step in the right direction. We’ve all been begging for a new definition for years. I’m a big fan of the Nightingale definition, but it’s not commonly used. I believe the Canadian Consensus Criteria were developed in 2002? It’s been almost a decade since we’ve seen any new definition, and if it had to be anything, I’d surely choose this one over the mockery of “CFS/ME” definitions that exist in other countries, and “CFS” definition we have here in the United States. It will help eliminate some of the other misdiagnoses, especially of psychiatric origin. If this becomes the new “CFS,” it will make sense to use terms like “CFS/ME” and “ME/CFS”; while, as of right now, that makes as much sense as saying “lung cancer/chronic cough sydnrome” or “HIV/chronic sinus infections.” In other words, none at all, and it’s extremely offensive to those who have it.

At least the definition does focus more on the rapid loss of energy that occurs, physically, which does include the muscles… I just highly, highly dislike the “and/or cognitive fatiguability” part, which means you can still be included even if you don’t experience rapid muscle fatigue. Your brain experiencing cognitive dysfunction in response to continued use isn’t the same as your muscles becoming weakened and eventually paralyzed with continued use.

I don’t know of many chronic illnesses in which you wouldn’t become more exhausted and ill after strenuous mental activity. But there isn’t a single other disease entity with the specific pattern of muscle fatigue exhibited by people with myalgic encephalomyelitis.

In addition to the obvious overlap with Lyme disease: In my own family I have people with ill-defined chronic disease who become extremely mentally fatigued as the evening wears on, and if someone used these new international criteria, they would qualify as having M.E. (or this new term of “atypical M.E”) despite absolutely not actually having it. I see first-hand where these criteria will be a problem in the future. But it’s at least a step, right? Comments are welcome.

a rainbow at night