The Parts of ME: What If It Were You?

Throughout this series, but especially in this part, I only ask you to remain open. But what does that mean? To quote Thich Nhat Hanh: “Usually when we hear or read something new, we just compare it to our own ideas. If it is the same, we accept it and say it is correct; if it is not, we say it is incorrect. In either case, we learn nothing.” So by being open, we agree to allow the information in and integrate it with the use of our intelligence instead of thoughtless reaction.


So much of the M.E. vs CFS debate is clearly a matter of perspective.

If you’ve been offhandedly diagnosed with myalgic encephalomyelitis (M.E.) or diagnosed with chronic fatigue syndrome (CFS), there’s a good chance you tend to to speak with those in the community who also have your symptoms. It’s easy to reinforce your own version of things when there’s nothing to challenge it; if everyone around is just like you, who wouldn’t feel right? You generally support research efforts into “ME/CFS” because you feel confident this research will actually help you and others, so your main advocacy cry is “More funding!”

But hold on…

Would you still feel just as confident that research being done on your illness was ACTUALLY being done on YOUR illness if all the people you talked to didn’t have your symptoms? Or would that make you wonder which disease researchers were ACTUALLY studying/what group of people the studies were ACTUALLY helping?

To quote a friend: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”

What if everyone you talked to with your illness said they actually weren’t very fatigued and could exercise five times a week? Your thoughts are probably the same as what an M.E. patient thinks when we hear of someone getting an M.E. diagnosis (1) without getting sick after a virus, (2) without having any neurological damage, and (3) without experiencing any exertion-induced muscular fatigue and/or pain (with subsequent exertion-induced paralysis): How can they have a disease without any of the core manifestations of that disease?

Or, what if your version of CFS were suddenly renamed to “idiopathic rash disease” just because a lot of people with CFS get rashes? Over time, your disabling fatigue, post-exertional malaise, pain–none of it is required anymore for this new diagnosis, BUT! It’s now called “CFS/Idiopathic Rash Disease.” You might ask, but Kit, if none of the symptoms for CFS are required for Idiopathic Rash Disease, why on earth was it ever combined? Well, because the Idiopathic Rash group advocated so strongly that the illnesses should be combined–after all, even though they have little in common now, it did originally start as a type of CFS, right?–that it ultimately becomes known internationally as “CFS/Idiopathic Rash Disease.” This looked like a good thing to the thousands of people who had no idea what “real CFS” was, so there wasn’t much protest from society at large…even though this combination further muddled everything (especially research!) by combining what used to be called CFS–your disabling fatigue, pain, sleep problems, etc.–with a new category that the government invented to study unexplained rashes.

Meanwhile, CFS advocates are feeling increasingly helpless that the majority of their patient group is being replaced with something that only barely describes their condition–your condition!–pleading, “This rash disease used to be called CFS, because we all had excruciating fatigue and post-exertional sickness! What is left to study our illness if all research is going towards unexplained rashes that could be caused by a million different things? Some of us are dying!” Incredulously, the people diagnosed with Idiopathic Rash Disease truly think they have the same illness as you, as classic CFS, even though they didn’t need nor have any of your symptoms for diagnosis.

How do you suppose research on “CFS/Idiopathic Rash Disease” will actually study people like you, now, when classic CFS is being buried year after year by more and more people who just want answers to their rashes…? And truly, they deserve those answers, don’t you think? You wouldn’t want to deny them their own research just because the government made a nonsensical decision to replace CFS with a focus on this new rash disease. But nonetheless, both groups are synonymous with each other, now, and across the globe people are starting to forget that CFS was once its own category, with its own symptoms that had nothing to do with idiopathic rash.

One day, you realize thirty years have passed, and all the new patients being diagnosed with “CFS/Idiopathic Rash Disease” don’t even remember when CFS was its own illness anymore. Funny thing is, everyone is quick to remember the part where Idiopathic Rash Disease started because of some CFS patients with rashes, but no one seems to remember that that’s where their similarities ended. You’re no closer to science figuring out what’s wrong with you, nor is anyone with Idiopathic Rash Disease any closer to finding out what’s really causing their symptoms. In fact, these new, uninformed patients are now yelling at you, an original CFS patient, claiming none of this even matters. Why are you so caught up on a name? Idiopathic Rash Disease is the same as CFS because it was created from CFS patients. And if no one likes the name of “idiopathic rash disease” maybe we’ll just petition the government to call this “CFS” again–that would help everyone, right, if we just took all these random rash patients and said they have CFS?

Hopefully that scenario upset you. Hopefully it made your head spin to think that anything so nonsensical and unscientific could ever happen. Maybe you’re even outraged and ready to end this hypothetical situation…

But this is exactly what happened to people with classic M.E. when CFS was invented. CFS was created to study “chronic fatigue of undetermined cause” and as the years have passed it’s morphed into a hybrid that still doesn’t describe any one condition. And it is not the fault of the CFS patient (or “ME/CFS” patient) that they’ve been so misinformed by the people they thought they could trust, or that those in power leave out major details when discussing ME and CFS history. But if it were you, if you REALLY WERE being replaced and forgotten in favor of a new illness that doesn’t describe your disease, wouldn’t you want someone to speak up for you?

So why do people look at us like we’re doing something wrong by reminding everyone that chronic fatigue syndrome is not M.E.? I quote again: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”


Luckily, the illness defined by Ramsay et al. called myalgic encephalomyelitis is not that easy to get. But

  • we all got sick after a virus;
  • we all have measurable neurological damage; and
  • we all have a very distinctive muscle pathology, a sign that was described by multiple doctors who all came to the same conclusion without having any communication with each other: “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. 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.” (Quote by Dr. Melvin Ramsay, although all M.E. experts explain this same phenomenon in their own way)

ME CFS SEID criteria-only

And finally, none of us are being studied at all unless we piggyback into research with other illnesses. People with classic M.E. have been forgotten, and this has been worsened irrevocably by (1) fighting to have ME and CFS combined into “ME/CFS” without fully understanding what this does to us or how much it further harms everyone, as well as (2) efforts to rename CFS to M.E., which is entirely illogical. Several recent polls have revealed that patients prefer the name M.E. because it sounds more legitimate, even though most people diagnosed with CFS–and even people diagnosed with ME without thorough inspection–do not actually have classic ME.

It makes no sense to rename CFS (and SEID) to “M.E.” without also changing the diagnostic criteria to actually reflect M.E.This is not 1988, the CFS bucket no longer contains just people with my illness, or just people with your illness, but dozens of misdiagnoses combined under one label. So why on earth would we rename one condition to another condition that it isn’t? I think the only thing these poll results prove is just how misinformed our community really is about our history, which is a major reason I’m writing this series. (I also left a comment to that post.)


So what’s my point in all this?

People who do get this infectious neurological disease–classic M.E. as it was defined before being unduly influenced by CFS and psychiatry–deserve to be and should be studied on their own, NOT forced to share the diagnosis and subsequently the research opportunities with other illnesses, all because a mistake was made thirty years ago. It’s not about the name itself as much as what the name used to stand for: I don’t care if we start calling it Egg Disease, as long as it actually describes and studies us, and only us! Until we consistently group people like us together and study them, we will never know what is causing this illness or how to relieve the suffering of people who move into the chronic, incurable, relapse-remitting or progressive forms.

All of these outbreaks didn’t just just magically stop occurring when CFS was invented. M.E. outbreaks are still happening even though the epidemics are no longer being recorded or studied. Cort Johnson wrote that Dr. Byron Hyde 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” (International Consensus Criteria). This should horrify people, and yet…

So please tell me how people with classic M.E. are supposed to be okay with what’s happened. Please tell me how research on people who became gradually fatigued is supposed to help people who all got sick after a virus. Please tell me how research on people who are chronically fatigued is supposed to help people whose breathing muscles are so weak many must sleep propped up or suffer from hypoxia; who exhibit clinical heart failure after exertion; who can’t write without risking arm paralysis; who can’t get up from the lying position using their back and abdominal muscles (which used to be such a prominent feature at the onset it was almost a diagnostic sign). And please tell me how giving people a diagnosis of M.E. without requiring the core manifestations, without checking for bacterial infections like Lyme disease, or even without giving them an MRI, is supposed to result in anything other than continued disaster (for us and the integrity of research).

If you want to pretend none of this is true–that you didn’t read any of this, that infectious M.E. doesn’t still exist–you won’t run into any shortages of other places to go. There are countless patient groups for you to join that will say none of this matters because it’s not THEIR symptoms that are being ignored. You’ll still have those options… But I ask you to contemplate having your disabling condition replaced by idiopathic rashes, like we’ve had our disabling condition replaced by idiopathic fatigue. After reading this, you are aware that we still exist and that M.E. epidemics are still quietly occurring. Don’t forget us.

All of that said, I do think we’re too far gone to erase CFS or SEID, despite some claiming it is the only way forward. I do not think it is the only way, nor do I think it’s even plausible. In reality, while we’re fighting for change, people are going to be misdiagnosed with CFS (and SEID, if it’s implemented)…including thousands of people with M.E. This is terrible because it diagnoses us too late for intervention, doesn’t give us the treatment advice we need in time, and doesn’t allow us to partake in research that applies specifically to us. But not all “ME/CFS” research has been fruitless. Some researchers select specific subsets–such as focusing on post-viral acute-onset cases while at the same time selecting patients who meet the Canadian Consensus Criteria, the only criteria that specifically require muscle fatigue–and we do get somewhere. That is exactly how the recent “robust evidence” paper selected their patient group, and it most likely included many patients with actual M.E. because of it; to that effect, the results actually match historical knowledge about ME in several ways. I also personally hypothesize that if SEID inadvertently catches a greater number of people with M.E., coupled with increased funding, this may one day force science to separate us into our own group yet again, if we repeatedly show abnormalities that others CFS subsets cannot reproduce… But I’ll have to explain all that in a later post, as this one is getting uncomfortably long.


Lastly, consider this:

There are thousands of rare diseases that will never be studied or researched. I think sometimes we get lost in the idea that it’s others’ jobs to fix us instead of our job to continue living our lives as best as possible. It’s wonderful that we’ve created a system to study diseases and relieve suffering, even if those systems get it very, very wrong sometimes. But M.E. has existed for centuries and will continue to do so, no matter what people call it, no matter how many people try to say we don’t exist. So listen to me:

I believe you. I’m sorry we’re on this particular journey together. And it is my most sincere wish that you not only discover the truth about this disease to the extent that it will help you (the books by our experts are some of the most validating things you’ll ever read) but that you’ll also do everything you can to increase your quality of life while you’re here, because you do matter. Dare to find enjoyment in your life, even if it’s difficult, because your life isn’t over just because you or a loved one got sick. In the mean time, we have to help each other, and I hope to do my part by not letting the truth die out. If you are also a person with classic M.E. or their carer, I invite you to share your story with the world, as well.

“If you destroy the record, you destroy the truth.

I’ve learned in my adult life that the will to silence the truth is always and everywhere as strong as the truth itself. So it is a necessary fight we will always be in: those of us who struggle to understand our common truths, and those who try to erase them. …

All so precious and fragile. Don’t let anyone tell you that the truth can’t disappear. If I believe in anything, rather than God, it’s that I am part of something that goes all the way back to Antigone, and that whatever speaks the truth of our hearts can only make us stronger. Can only give us the power to counter the hate and bigotry and heal this addled world.

Just remember: You are not alone.”

(Paul Monette, “Last Watch of the Night: Essays Too Personal and Otherwise.”)

Until next time…

a rainbow at night


See also:

Books and Materials on Myalgic Encephalomyelitis:
  • Missed diagnoses: Myalgic Encephalomyelitis & chronic fatigue syndrome (2nd ed.), by: Byron M. Hyde, M.D. with a foreword by Professor Malcolm Hooper. (2011)
  • The Clinical and scientific basis of myalgic encephalomyelitis/chronic fatigue syndrome, by: Jay A. Goldstein, M.D. and Byron M. Hyde, M.D. (1992)
  • Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free disease (2nd ed.), by: Melvin A. Ramsay, M.D. (1988)
  • Click here for more Resources on M.E. and CFS
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14 thoughts on “The Parts of ME: What If It Were You?

  1. Wow, Kit. I don’t know how you have the energy and focus to write so well and clearly. Brava! I admire your mission. I’m so sorry for your poor health. I’m sorry for my poor health too, for which I’m still — 13 years later — trying to figure out the cause of. I just want to say just as you reassure your reader that we matter, what you’re writing matters too. A lot! Keep at it.

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    1. Well, 95% of the time I DON’T have the energy or focus, that’s why it takes me weeks to compile a single article. There were times I only posted a handful of things per year. I like to say, this disease didn’t make me stupid, it made me slower, haha! You learn to catch your good brain moments just like you learn to go do something fun if you wake up with a little energy at random. :)

      Thank you so much for your words, Sheana, and I look forward to your next post on your new site!

      xoxo Kit

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    2. Hello there. I am a journalist, or at least I was. Into Year 4 of postviral malaise. Found out last week that I am still testing positive for glandular fever, which I contracted while on assignment in Spain in August, 2011. Been crap pretty much ever since. Somehow managed to hit only two stars as my rating. Sorry about that. Great article. I wanted to reply to the lady who wondered how you write so well, being so ill and all. Well, like me I suspect, Kit, it’s our way of screaming, I mean, expressing the essesnce of the thing or things that have made a lifelong home in our once incredibly capable bodies – and minds. The only real clarity I have is when I’m writing – even an email. I don’t know if you can access mindfood.com, but is so, I have a story in the upcoming May issue, on sale and online next week. It chronicles what happened to me from the get-go until now. I’ll post link here (if my addled brain remembers!). Best wishes … it’s soooo important that those who can, do – so keep writing. How else are we to be heard, whatever it is we have wrong wuth us? Kxx

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      1. Hi Kathryn, I can tell you and I agree about a lot of things. If you are still testing positive for active EBV, are your doctors looking into antivirals? I hope you and your team have considered that as a potential treatment if your symptoms are being caused by persistent viral infection, especially when EBV is a known cause of post-exertional fatigue and symptom worsening. You’re right, writing has always been a form of expression for me, along with artwork and more recently, photography.

        No amount of needing to write is going to magically give me that ability when my body says no, but when I’m able–like right now!–I can tell it means something more to me than it does for other people. When I hear things like “how do you do this when you’re so sick,” what I really hear is “I can’t believe you haven’t given up the things you love because of your illness/I can’t believe you found a way to still participate in what makes you happy”–which is something I hope more and more people realize is always an option for anyone whose life has changed, whether it’s due to illness, loss, a new job, having children, etc. We should never give up on what helps bring us joy just because we have to learn how to engage with it differently.

        Kit

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  2. Thanks so much for this, Kit! I really like your approach to these issues – you’ve given some good food for thought.

    I remember when I first found online groups for CFS and how confused I was that no one in those groups was anything like me. It did make me question how what I had could be the same and I didn’t find any answers until years later when I finally learned about ME.

    I have often thought about telling my story but don’t quite know how or where. And right now I feel like how can I even think about it when there are so many things to do just for my own survival and when I get to the place where I have everything in order and some security for my future, then I could think about things like writing my story.

    I’m working on being in the present but it’s tough when my situation is so precarious. But I’m hardly the only one in a difficult situation with an uncertain future and I do need to live now too. Going to keep working!

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    1. I’m glad to hear you think so, Jan!

      I know exactly what you mean about the CFS groups. I actually had a few lines in my rough draft about only talking to maybe three people in the first five years of being ill–within ALLLL my support groups–who had actual ME, who could identify at all with what my journey was and had been. It was just as you say: Extremely frustrating, because they couldn’t relate to us and we couldn’t relate to them. They were tired all the time but they didn’t become paralyzed, most of them could still work, no one got sick after a virus, seldom did anyone have neurological damage, half of everyone got better after going gluten free or vegan or exercising more or getting on antidepressants or treating Lyme or treating hypothyroidism because they were just misdiagnosed… A real mess, that still exists today.

      You’re right, neither of these situations are even possible: “when I get to the place where I have everything in order and some security for my future.” Nothing will ever be in order, and any security we think we have for our future is merely an illusion of control. The fact that we got so ill so suddenly is testament to both of those. If we want to do anything, we cannot wait until things are perfect before we begin, or we shall never begin. That said, I don’t think anyone expects those with severe illness like yourself to throw themselves into advocacy unless it’s on their hearts to do so, because at a certain level of illness it becomes a sacrifice that might not be worth it. It becomes choosing between a day of rare respite or a day of writing resulting in a week of flared pain; a paragraph or being able to eat; an hour of concentration or being able to wash up. I left advocacy for many years and as my health worsens I’m sure I’ll do so again. If you decide to start writing it down in whatever way you can, there will always be people who need to hear it. ♥

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  3. Hi there, I was just wondering if you’ve started IVIG yet and if so, is it helping? Sorry if you’ve said this already in your post, I don’t have to brain power to read a post right now.

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