I’ve had MECFS (myalgic encephalomyelitis/chronic fatigue syndrome) for more than six years. In that time, I have struggled with the chronic disease, meaning my mentality has followed a meandering path from terror to confusion to denial to acceptance to advocacy. Now, however, I find myself in a different frame of mind that is a result of new developments in my own health as well as theories of patients and top researchers in the MECFS community.
As I wrote a few weeks ago, I was diagnosed with Lyme disease in January 2017. It wasn’t long before this that I finally accepted (and understood) my diagnosis of MECFS and decided to get more involved in the community, even advocate for more government research funding. So there I was, just settling in with the singular focus of MECFS, then I had to try to understand a whole new disease. It was like studying for an algebra exam, only to find out the test was on geometry as well.
After the Lyme disease diagnosis I had to share my focus and energy between it and MECFS, which admittedly I haven’t done very well. I’ve yet to give Lyme disease nearly as much effort as I’ve given to MECFS. But for legitimate reasons: (1) I was diagnosed with MECFS first, (2) I’ve had it longer (I think), (3) I’m not entirely convinced my Lyme diagnosis is accurate, and (4) MECFS is more misunderstood and trivialized than probably any other disease, including Lyme disease.
But in addition to Lyme I have other conditions like POTS (postural orthostatic intolerance syndrome) and diabetes insipidous. So basically I’m a chronic illness collector, however involuntarily, who specializes in the misunderstood diseases. I’m scared to even consider that I might have other diseases that fit the mold, like fibromyalgia.
All of these diseases have come together in my body to thoroughly confuse me. They have created a disease identity crisis in my mind. Which one do I associate with? All of them? Just MECFS?
If my collection of chronic illnesses wasn’t enough, I’ve noticed that there is a theory within the MECFS community becoming more prevalent, and it has served to only further my identity crisis. The theory mentioned by both patients and MECFS researchers is that the disease might actually be multiple diseases, not one mysterious illness.
Chronic Disease Meaning: An Identity Crisis
Everyone who claims to suffer from MECFS obviously suffers from something, probably something horrible, regardless of whether it’s the same thing other people with the disease suffer from. There are differences in our conditions, however, and it remains to be seen whether these differences split up MECFS into different diseases, or if it’s just varying symptoms which every disease has.
For example, if I compare myself to people with ME/CFS who are sicker than me, patients like Whitney Dafoe and Tom Camenzind, it makes me wonder if we all suffer from the same disease. For two years I was just as sick as them, but even when I was, there were differences between us. Whitney, for example, has severe stomach problems, and Tom too has trouble orally consuming food. They both have to be fed through a tube connected to their stomachs. Thankfully I never had to endure that. I never lost my ability to swallow food, but I did lose my ability to chew solid food and I had to drink liquefied meals through straws.
Another example of varying forms of ME/CFS is found in Julie Rehmeyer’s memoir, Through the Shadowlands. In the book, Julie has a case of MECFS that is spurred by a severe reaction to mold, but through trial and error she manages to make her condition manageable, or at least bearable, through mold avoidance.
On the other hand, I don’t have a severe sensitivity to mold. Of course if you rub mold all over my face I would surely have a reaction, as I think most people would. So perhaps I’m sensitive to mold, but not nearly as much as Julie. And while Julie seems to be able to function at a higher level than me, it is important to note that we have some different symptoms. She experiences paralysis at times when exposed to mold, I haven’t had that issue. I don’t know many specifics about her condition, but in the book she does mention that her NK cell function tested very low as did her cortisol levels. These aren’t always present in MECFS, but they are two of the most noticeable issues in my blood work.
Although there certainly are differences in our conditions, there are just as many, if not more, similarities, making it hard to say for sure if we have the same disease. Shortly, I will share my opinion on the abnormalities I see in the chronic disease, meaning the differences I notice.
Same Symptoms, Different Diseases?
When you look at the millions of people with chronic fatigue syndrome, are all these people suffering from the same disorder; do they have the same underlying pathology? Or is one group of them suffering from one problem and in the second group maybe there is something completely different wrong…
While I’ve heard the theory that MECFS could be multiple diseases, or subsets, albeit with similar symptoms, the first time I came across it mentioned with any scientific backing (although I’m sure there are earlier examples) was in a YouTube video by Dr. Jarred Younger at the University of Alabama at Birmingham.
In the video Younger discusses a study he is doing and how the preliminary results suggest that MECFS could be made up of subsets. He mentions that scientific literature has already discussed how there may be differences in the acute and chronic phases of MECFS, as well as the symptoms, whether inflammatory, neurological, etc.
I realize, as Younger points out in the video, that this is a question which has been asked for decades. And it’s vitally important because, if there are in fact different subsets of MECFS, they will need to be treated with different protocols. For instance, an anti-inflammatory treatment might do wonders for one subset of MECFS, while an anti-viral treatment might help a different subset.
Shortly after Younger uploaded the video on YouTube back in June, I asked him a question on Facebook. I can’t remember my question verbatim, but it was basically: Is it possible for there to be different subsets of the same disease or would MECFS be split into entirely different diseases? And I got this response:
It’s not that I don’t agree with the answer I got; I’m just skeptical. It’s difficult understanding a chronic disease meaning. And admittedly, I know little about the science behind MECFS, but it seems too coincidental that millions of people across the world have such similar symptoms but different diseases.
Take myself, Whitney Dafoe, and Tom Camenzind. Each of us were young, active men who eventually lost our ability to speak and eat, and couldn’t tolerate lights or sounds. That, in my opinion, has to be the same disease. But okay, I’ll play along: Maybe we’re all part of one subset.
Now, let’s compare myself with Julie Rehmeyer; we both have experienced post exertion malaise (PEM) and exercise intolerance. We have felt better after saline infusions. And we have a low NK cell function, as well as low cortisol. Maybe these similarities are a bit broader, but I think it’s still very likely that we have the same disease.
I think there are people who say they have MECFS, but don’t have most of the same symptoms people with the disease suffer from, and are therefore unlikely to have it. Whether it’s someone who is severely depressed and experiences fatigue from the depression, or someone who was misdiagnosed by an ignorant doctor, these people definitely don’t have MECFS, but they still suffer from something. A diagnostic test would (hopefully) confirm that they have a different condition. But I get the sense that Dr. Younger isn’t just talking about this example of people when he theorizes the presences of subsets in ME/CFS. I imagine that (and I could be wrong) he believes there are undiscovered conditions within the subsets, not just common conditions like people with severe depression. In other words, there may be several mysterious diseases yet to be discovered that are all clumped together in the umbrella term MECFS.
Nevertheless I hope the extent to which MECFS is broken into subsets, merely separates the people who solely have depression and other established (or yet to be diagnosed) conditions from those of us who actually have MECFS. Otherwise it’s hard to imagine those of us who have had to deal with so many of the same symptoms and health issues being separated into different diseases, although Younger seems to suggest that even this is possible.
When considering the unraveling of the mystery of MECFS and its origins, I think anything is possible. At this point, if definitive scientific proof comes out resulting in MECFS being broken into separate diseases, I wouldn’t be surprised. But I would be a little heartbroken. I think it would feel like growing up with a sibling only to realize, at some point in adulthood, that the two of you aren’t actually related. This feeling I get pertains both to how I would feel about parting with a disease I have come to so intimately associate myself with (only to have to adopt another) and how I would feel having to uncoil myself from people of whom I have bonded with over having the same disease. The latter would probably be the hardest part.
Some of my best friends have MECFS; these are people who have helped me both financially and emotionally through extremely tough times and I have tried to return the favor. If MECFS were split into different diseases, just like losing family ties to a sibling, I would surely still consider my MECFS friends as meaningful in my present life as they were in the past. But undoubtedly, it would be an emotional blow.
The MECFS community has given me so much, and for such a long time the only answers patients have had while suffering from a disease riddled by mystery, is what we’ve discovered from each other. We don’t know for sure what disease we have; we’ve all just been looking for glimpses of our own condition in each other. That’s how we know what treatments to try, or what doctors to see, or what wheelchair to buy, or when to rest and when to use what little energy we have.
There is finally some scientific answers coming our way about the chronic disease, meaning we might actually have the luxury of not using each other as guinea pigs. But we may also be faced with being separated by the very answers we have sought for such an incredibly long time. And, regardless of its impact on our relationships, we may be more different than we originally thought.
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36 thoughts on “A Disease Identity Crisis”
ME/CFS is like cancer or diabetes an umbrella term for many types? They all have a trigger, can be linked and no one gets left behind?
Hi Tina. You might be right. Hopefully they figure it out.
Yet again a brilliant read 😊 I totally get what you mean.
I too, unfortunately, have unwittingly become a collector of various chronic illnesses over my 22 year journey. Consultants seem to want to diagnose me with their ‘specialist subject’ only to confuse my local doctor further. All I know is that symptoms have just kept increasing, the list gets longer each year and I have no idea which disease is creating which symptom now!
M.E. (CFS), hypothyroidism, fibromyalgia, lupus, sjorgrens syndrome, Hughes syndrome, classic migraine, ocular migraine, vestibular migraine, bursitis, UCTD (undifferentiated connective tissue disease), osteo arthritis and most recently (after a spontaneous spinal fracture – ouch!) osteopenia/osteoporosis.
I of course would be delighted to know if these all come as a package, like a mega jamboree bag full of surprises, or if they are distant cousins of the same disease, or if I’ve just been unlucky and they are all stand alone diseases.
The research continues, thank goodness, and I just pray that one day we will all be able to have definitive test results and most importantly, some form of cure (at best) or ‘something’ (anything!) which can improve our well being.
Whatever the outcome, my chronically ill friends, with whichever disease they have, I am sure, will continue to support one another through the ups and downs we all go through with whatever crazy disease we might have.
Thanks Tishlyn! I think you’re right we’ll always be here to support each other. Thank you for reading!
I feel the same way you do. There has been an amazing kind of comaradery forged through this scary process of not knowing and yet the comfort of knowing we are not alone as we reach out to others. I think we have all helped each other more than the doctors have over the years just by communicating through social media. I don’t think I could have made it this far without you all who share in this horrid illness. Whatever happens I think we should try to stick together somehow and continue the fight under the umbrella of ME/CFS.
I know I spelled comradery wrong. This may be wrong too. 🙂
Haha I’m not even gonna attempt it.
Hi Gloria. It is such a great bond isn’t it? Unlike many others.
I was also recently diagnosed with Lyme disease after growing increasingly sicker and sicker with a mysterious ailment with marked PEM that was variously diagnosed as migraines, IBS, fibromyalgia, post-viral syndrome, and of course a whole host of mental problems that boiled down to “stress.” If I would stop lying around moping and get back to exercising like I used to, I would get better quickly! Only instead I got worse.
I was originally convinced I had Lyme disease, spent months trying to get tested, got an “equivocal” result back, and spent a year and a half being told I definitely, definitely didn’t have Lyme disease, only to finally get retested, and what do you know? A hard positive! So I understand about the weird identity crisis and you ally yourself with one disease or another.
For what it’s worth, I believe that The symptoms of MECFS can be triggered by any form of “stress”–infections, exposure to toxins, etc. I guess they’re now thinking that Gulf War Syndrome is a subset of ME/CFS/FM, for example.
May we all fight the spirochetes successfully!
Wow. So you collect the chronic illnesses too. I’m so sorry!
Some people collect dolls and trains. And some of us collect chronic illnesses. The important thing is to have a hobby!
Haha well said!
Thank you for shedding light on an issue we CFS patients grapple with. The human body is so unique, all of us experiencing life and illness in our own way. I’d read, this year I think, that one researcher believes CFS sits on different parts of the CNS in different people. This explains the symptoms varying so greatly amongst us. This same person explained his theory on PEM and it resonated perfectly with me.
At the end of the day, month, year, or hopefully not decade this illness will be explained. It will become treatable. We will become patients that doctors don’t cast aside. It will happen. And much like a grief support group it won’t matter what illness you’ve actually had along the journey of life it will only matter that you were able to connect with others to share in your experience. That connection IMO won’t fade because of a name change.
My pleasure! Thank you for reading and sharing your experience! We’ll get some answers eventually. I hope.
Another great, wise post Jamison. I’m in a similar position to you, & what I feel bonds all of us goes beyond the definitions that science will eventually come up with & the sub groups we may then find ourselves in, it’s the suffering we can all relate to & the support & kindness that’s shared & the strong bonds & connections that have formed in the face of it all.
Thanks Katy! I’m very grateful for those connections too.
Having just the one – CFS – isn’t a whole lot better. It will be 28 years later this year. And it’s been basically the same set of symptoms all that time, and learning to live with them. This year I added some stents to that, but expect it is just lack of much mobility for most of that time: it’s hard to stay any degree of fit when you have no energy.
I have a much better return on investment using my time now to write fiction – about a woman living with CFS and still manage a life. She isn’t me, at all, but that seems a better use of my time.
But if I don’t have it, I’d sure like to know what I do have. Every new primary physician thinks they will solve it with routine blood tests. I go to them for the rest of maintenance, because their profound ignorance hasn’t helped all these years. I’ve never seen a specialist – just getting to one is a huge effort, and there’ve never been any in NJ with good reports from other patients; the reports were of the huge cost, not covered by insurance, of the tests – and the expensive protocols, ditto – and the inability of the patient over time to afford the cost, so the ‘treatment’ stopped, without me seeing that my friends were any better off.
We’ll see if they even figure out anything in my remaining time on Earth.
Thanks Alicia. I’m still working on reading your fiction.
Sweet of you to even consider it. That said, I would really love your opinion, if mainstream fiction is one of your things.
And if I know you read, it means you might be feeling a bit better – also good.
Jamison, Thank you for your brave and on target thoughts. I read these comments from both the perspective of the Mother of an adult daughter suffering from CFS and a Nurse Psychotherapist with 40 years in healthcare. Amanda developed CFS 20+ years ago and was very ill for 1 year. She made a full recovery until 3 years ago when the illness returned. I did extensive research during her initial episode of CFS and am outraged that in the intervening decades there has been no substantive progress in the diagnosis or treatment of this devastating illness. I agree that this appears to be one complex illness with core symptoms in the presence of individual differences as each person brings unique neurological biology to any illness. I have worked with clinically depressed individuals both in the hospital and outpatient setting. There are differences in the profound fatigue that I have observed in the clinically depressed population and my daughter’s CFS fatigue.
I am grateful that you chose to use your precious and limited energy in sharing your thoughts and ideas. Again, thank you!!
Thanks Susan, I’m sorry Amanda has had such a long battle. And thanks for sharing your thoughts on the illness.
Everything Susan said ! My greatest fear is that the medical community excludes people once again because they don’t know or think they know … one thing I have learned in “the community” is now similarly we describe this disease even within the subsets of our differences …
Thanks Heather! That is interesting. I’ve noticed that too.
Jamison, I’m always amazed by your posts. Always interesting and informative. Sometimes I find it hard to just string words together to express someting. Of all the things I miss, I miss my brain the most.
It took several years to discover that there was
a CFS support group in my area; in fact just up the street from me. The first meeting was an eye opener. While I knew I wasn’t the only one with this illness, I had no idea there were so many of us. We had a guess speaker that day, Dr. Kolgelnic. There must have been around 30 people. While checking out the group, I discovered there were people much sicker than me. One was in a wheel chair. There was a girl, curled fetal position, in the chair next to me. Her boyfriend had drove her, from Oakland, to be there.
Before Dr. Kolgelnic spoke, we went around the room, introducing ourselves and telling how we became ill. Many could trace it to an event that they never recovered from. Some were like me, gradual onset. Some felt theirs were bacterial. Others, like me, we’re viral.
Over the years I have found it interesting that we have this illness and each of us present it differntly. Each of us have a story to tell. Each of us have been on a journey of discovery of trying to heal ourselves . Two of group members have taken their lives. Whitney, is the most severe. It breaks my heart just thinking of his and his parents struggle to find answers. Most of us have an invisible illness that makes each day uncertain.
It is pretty heartbreaking. And interesting. So many variations it seems.
Yep I agree with Tina, it is an umbrella term that many if us fit under with a whole bunch of varying symptoms and potential causes that drive these symptoms. But the core experience remains the same, the physical, psychological and social impacts that we all experience are what bonds us together and provides shared understanding and a sense of knowing what each of us are going through. It extends into the lyme and fibro comunity also, I have not got a lyme diagnosis (suspect it could be a problem as had a tick bite years ago but am in Australia where it is denied) but when I hear peoples lyme stories or fibro stories etc I can still relate to the experiences they are having. I also understand your feelings about this illness and your identity, we lose so much and are challenged so much on every level that I think it is psychologically normal to question how it impacts you if the parameters change.
Hi Lisa. Definitely an umbrella term, but I feel that for those who have it’s much more specific. Which is good and bad I guess. Thanks for reading!
Jamison thank you for you posts.
October 15th will be one full year I have been officially been “missing” from my career as a paramedic fire captain. It feels like a million years have passed since I was given the duel diagnosis of chronic fatigue syndrome and fibromyalgia (the pituitary brain tumor would come later). It started with crushing fatigue after back to back viruses followed by migraines and vertigo. All over muscle pain was next and then all the joints joined in too. Soon after the pain, I noticed I couldn’t think normally… couldn’t spell simple words, or add, reading was difficult….what the heck happened? I felt like I must have had a stroke or something. I did not have a stroke. “This is not uncommon” I have been told by my rheumatologist. Will I be able to read again? All the Dr. would say was; “I sure hope so”. I wanted to know what to blame. Dr. Rheumatologist told me all about something called fibro fog. He said some people with MECFS may also have difficulty. So here comes my confusion with the identity crisis about which you also wrote – Did the fatigue (ME/CFS) cause the pain (FMS) or am in so much pain it has caused the fatigue or are they simply two completely seperate entities? I posed that question to my Dr. He drew me one of those ven diagrams… two big circles that overlap… one circle is fibromyalgia one is MECFS. He told me that some people just have FMS and some only have MECFS and I am one of the people that have both where the circles blend so it is hard to know which is causing what problem. So I guess I have to blame both when I can’t read or move or lift my arms?
Ok so at the same visit with the same Dr. I asked a question about… well I don’t remember what my question was but I clearly remember what the answer was because it completely blew my mind – it was just about opposite of the ven drawing he so cleverly drew right there on the exam table paper. Sorry I can’t remember the question but it really doesn’t matter. Check out the answer and please tell me if this makes the identity crisis even more of a crisis?!
He said this; “Everyone with Fybromyalgia has Chronic Fatigue Syndrome but not everyone with Chronic Fatigue Syndrome has Fybromalgia and that’s why there are some CFS patients who do not have pain”. That just made me more conflicted and confused!
I am trying to figure out my personal identity in this strange new world of not being able to do what I used to less than two years ago. I don’t know anyone with MECFSFMS. So reading your posts definitely help! 😀 Keep writing! Love, Nikki
Hi Nikki. Those are good questions. I was actually just in a study done at Arizona State that tested a similar idea with some people overlapping Mecfs and Fibro but most were either one or the other. Thanks for your kind words!
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your story sounds incredibly frustrating. Have you read my posts about my health issues? This is the first one https://lorieb.com/2012/01/15/sick-and-tired/
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