Archive | March 2015

Pyrexic Disease (or, Why The Creation of SEID Should Concern Us All)

Since the recent release of the Institue of Medicine’s report recommending the creation of a disease called Systemic Exertion Intolerance Disease, there has been a lot of confusion over what exactly the report says, and whether it is a good thing for patients. Some are claiming the report itself is about something called “ME/CFS” and not ME, and therefore doesn’t apply to ME at all (if you’re confused about the distinct differences between ME and CFS, please read this post). These people tend to see the report as a good thing. Others see the report as further muddying the waters and creating yet another diagnosis where people with varying diagnoses will be thrown together inappropriately. Even the committee members themselves, who claim to have unanimously approved the report’s contents, give varying answers on whether the report concerns ME patients or not. And while some (not all) of these committee members have said they aren’t aware of anything in the report which would keep ME patients from being diagnosed with ME, I believe it is what the report itself says that matters, not what uncertain and horribly inconsistent committee members say after the fact. The report is what the HHS and others will base their decisions on, and the report is what we need to understand if we are to fight for what we believe is right.

After reading the report myself, it is my unwavering opinion that the report does, in fact, intend to replace *both* ME and CFS with the new diagnosis of SEID. There is a lot that goes into my seeing it this way, but here are a few key quotes from the report that back this up:

“Over a period of decades, clinicians and researchers developed separate case definitions and diagnostic criteria for ME and CFS, although the terms denote conditions with similar symptoms. The literature analysis conducted in support of this study took into consideration the variability in the definitions used in the studies reviewed. For the purposes of this report, the umbrella term “ME/CFS” is used to refer to both conditions.” – IOM report, page 1 (emphasis mine)

This quote, taken from the very beginning of the report, clearly recognizes that ME and CFS are distinct diagnostic entities. It also clearly explains what the term “ME/CFS” as used in the rest of the report refers to – that is, both ME and CFS. Not CFS alone, not some new disease creation called “ME/CFS,” but ME *and* CFS, with their recognized differences. On to quote number two:

“Historically, however, the diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic criteria for CFS; thus, a diagnosis of CFS is not equivalent to a diagnosis of ME.” – IOM report, page 60

Again, the committee is showing that they do understand and believe that ME and CFS are different, distinct entities. Some people are taking this quote to mean that the committee and this report were not referring to ME as distinct from CFS. That is not what it says, and that interpretation is directly counter to the first quote I shared, which again, was on page one of the report and sets the stage for everything that follows. From these two quotes, it is clear that 1) The committee recognizes that ME and CFS are two distinct entities, and that a diagnosis of CFS is not the same as a diagnosis of ME, and 2) Whenever the term “ME/CFS” is used in the report, it refers to *both* distinct conditions.

Side note: Some people believe that the inclusion of “Post Exertional Malaise” in the SEID criteria will ensure only people with true, classic ME (or at least people suffering from just one condition) will get diagnosed with this. This is based on a partial understanding of what ME is, along with partial ignorance of what PEM actually means. Does post exertional malaise exist in ME? Yes. Is it unique to ME? By no means! PEM simply refers to a general feeling of malaise or worsening of symptoms after exertion. *Many* conditions include this in their list of symptoms. Even the IOM recognizes this in its report (pages 80-81) when it mentions that studies that compared “ME/CFS” with other diseases found PEM was experienced by 19-20% of subjects with major depressive disorder and 52% of patients with multiple sclerosis. I would add that PEM is also found in other diseases, from Parkinson’s to Lyme to AIDS and more. So PEM in and of itself is nowhere near unique to ME. What *is* unique is a specific, testable type of muscle response to exertion. In practice this type of muscle response plays out as burning muscles that can quickly become paralyzed with continued use, often in response to what should be trivial exertion (such as typing on a keyboard or brushing one’s teeth). The inclusion of the broader term PEM will not diagnose any distinct illness group, but will continue allowing the inclusion of a long list of illnesses being misdiagnosed as SEID.

Moving on, here’s quote number three:

“The committee recommends that this disorder be renamed ‘systemic exertion intolerance disease’ (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.” -IOM report, Page 11 (again, emphasis mine)

This is the clincher, in my opinion. This is not only a quote from the report, it is the IOM’s official recommendation number four, set forth in its own little box and bolded in the report itself. Combine this with the evidence above, and I can’t see any interpretation other than that the official recommendation of the IOM committee is for SEID to “replace” both ME and CFS diagnoses in patients who meet SEID criteria. This is a horrible, catastrophic recommendation that will ultimately harm hundreds of thousands of people, but just because it’s horrible and shows a lack of understanding of the ramifications doesn’t make it untrue as far as being the correct interpretation of the report. Just because we don’t want it to be true doesn’t mean it isn’t.

I thought about making the next part of this post into a separate blog entry, but it is so important that people who read the above also read what is below that I decided to put them together as one post. If you need to take a break, now is a good time to do so, but *please* come back and read what I’ve written below, because the facts need to get out there. Now, more than ever, we must make sure everyone understands the truth so that we can fight for it, and for what each of us deserve.

When CFS was initially created in 1988, it was done “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.” This is a direct quote from the release paper as archived on Pubmed. The fact that CFS was never intended to be viewed as a distinct disease of its own has been lost on most of the individuals diagnosed with it today. Patients (and many doctors) have taken a definition designed to create a category for researching unexplained fatigue and turned it into its own disease, demanding funds to research a cure and completely ignoring the fact that the group of patients diagnosed with CFS do not have a single disease entity, but a mashup of every fatigue producing illness under the sun. The following is an analogy that I hope will clarify the situation we are in and inspire both those diagnosed with ME and those living with a diagnosis of CFS to fight together for appropriate change.

When I first became ill, one of my symptoms was a constant, low grade fever. Because my doctors weren’t sure what was causing it, they wrote in my file that I had a “fever of unknown origin.” This wording is very similar to that found in the official description of CFS where it says it is for people with “chronic fatigue of undetermined cause.” Imagine if, instead of continuing to seek the true cause of my fever, my doctors and I had settled for the label of “fever of unknown origin.” Imagine that this became the norm any time anybody visited their doctor with a fever. Soon, insurance companies begin to realize the money they can save on expensive tests by convincing doctors and patients to not bother searching for the cause of each person’s fever. At the same time, doctors realize they can save valuable time and thus see more patients if they simply label everybody with an abnormally high temperature as having “fever of unknown origin.” Pretty soon, people with this diagnosis begin talking to each other. They’re ill, and because they all have a fever, some of their symptoms (such as chills and muscle aching) are almost universal among this patient group. They begin talking as though they all have the same condition. Several decades go by, and now nearly everybody – some doctors included – are treating “fever of unknown origin” as its own distinct disease.

But there’s a problem. Just before it became commonplace to immediately diagnose anyone with a fever as having “fever of unknown origin,” an outbreak of Polio hit the US. Initially, some of the doctors and researchers who knew better insisted that what a portion of these people had was Polio, but over time more and more Polio patients were simply labeled with “fever of unknown origin” and sent on their way. Because of the (correct) protestations and education attempts of Polio experts, many people began to associate the term “fever of unknown origin” with Polio. Now, decades later, the two are nearly always thrown together, and Polio as a distinct disease has been all but forgotten. Patients who come down with Polio are almost never diagnosed with it. Instead, they’re thrown together with everybody else who has a fever of any type, both in research and in day to day conversations and media articles. Because the two terms are frequently heard together, many people insist they are the same thing. Patients diagnosed with “fever of unknown origin” often prefer to say they have Polio, simply because the name sounds better and they believe them to be the same condition. Some people get very ill and die for lack of treatment, but because the majority of people diagnosed with “fever of unknown origin” don’t die of their condition, the ones that do tend to be seen as unfortunate, infrequent cases (though their stories are often used to raise funds to research “fever of unknown origin” patients – despite the fact that results are highly inconsistent due to having too many patient groups thrown together).

One day, the government decides to spend a million dollars to convene a panel to reassess “fever of unknown origin / Polio” and decide if a new name and criteria are needed. This panel considers using the name Polio, but because there is no evidence of classic, old fashioned Polio in the vast majority of “fever of unknown origin” patients, they reject the name as being unscientific. Instead, they decide to rename this diagnosis to “Pyrexic Disease.” Patients are thrilled. They feel the new name lends a sense of legitimacy to their (very real) suffering. Also, the continued lumping together of everybody with a fever saves insurance companies money. It also saves time in busy doctors’ schedules, while simplifying their jobs overall and keeping patients happier. Nobody gets accurately diagnosed with any of the true causes of fever anymore, but nobody seems to care. And Polio has all but disappeared as a distinct diagnosis.

It’s hard to imagine this happening, isn’t it? But this is exactly what has happened and is happening with Myalgic Encephalomyelitis (represented by Polio in this story) and Chronic Fatige Syndrome (represented by “fever of unknown origin”). The government is now attempting to rename so-called ME/CFS as Systemic Exertion Intolerance Disease (“Pyrexic Disease” above). And many people are happy with this. But ME isn’t CFS any more than Polio is equivalent to a fever of unknown origin. ME is a distinct neurological disease, with fairly well understood underlying pathology. It can be diagnosed with a high degree of accuracy using a specific series of medical tests. And it has a long standing history of its own, starting long before the fatigue category CFS was created. CFS, by definition, has always been a diagnosis of exclusion, a placeholder category for patients with “chronic fatige of undetermined cause.”

By treating CFS as its own distinct illness, the powers that be keep people from getting an accurate picture of what’s happening in their bodies through correct diagnosis. By settling for CFS as a final answer, patients are unable to benefit from the research and treatments available for their own, specific condition (conditions frequently misdiagnosed as CFS include Multiple Sclerosis, Lyme Disease, certain types of cancer, Major Depression, and more – most of which are clearly diagnosable with appropriate tests and have their own specific research and treatments available). By combining the category of CFS with the neurological disease ME, we risk burying a very serious disease underneath a larger majority of patients who do not have the condition. Not only does this cause unnecessary, severe suffering, it also kills. People on both sides of this issue are dying – those with ME who fail to get the early diagnosis and treatment so essential to give them their best chance at a decent life, and also those MISdiagnosed with CFS, some of whom have potentially deadly conditions of their own.

So before you jump on the bandwagon and decide that this is just a silly name war, consider the implications. Consider the fact that it is in everyone’s best interests for each person to get properly diagnosed. And consider the fact that the only way this can happen is to get rid of the falsely used category diagnosis of Chronic Fatigue Syndrome / SEID, consistently recognize and correctly diagnose Myalgic Encephalomyelitis as the distinct neurological illness it is (characterized by Central Nervous System dysfunction and a unique, testable type of muscle response to exertion), and ensure that those who don’t have the disease ME get properly diagnosed with whatever is going on in their bodies.

One last note: You may think this has nothing to do with you. You may be living a fairly healthy life. But consider the last time you felt fatigued in any way (whether it was generalized physical, cellular, mental, emotional, or some other form of fatigue). Consider the chances that at some point you will feel that way again. There’s a good chance if things continue down the path they are now your illness, whatever it may be, will not be properly diagnosed. Instead, you will be given a diagnosis of CFS/SEID and thrown in together with millions of people who don’t even have the same condition. This does apply to you. It applies to us all. Please help us spread the truth. Thank you.


The Past Few Months

Hello, everyone. It has been eight months since my last update, and I figure it’s high time I post another. My health has significantly deteriorated, and I have spent months, literally, trying to get this written. I hope it makes sense and does the job of explaining what has happened and where I am right now. I also want to take a moment to express my extreme gratitude for all of the support that’s been given – both here on this blog and elsewhere. Those of you reading this are some of the strongest, most amazing people on the planet, and I am blessed to have gotten to know you.

So what’s happened since my last update? The first thing you probably want an update on is the food situation. Due to extreme nausea, gastroparesis, and the inability to keep food down, I went more than 30 days without a single bite of food. I don’t know exactly how many days I went without – I lost count at thirty something. As expected, my nausea levels went down a bit once I was no longer trying to force food into a body that couldn’t process it. In fact, after the thirty- or forty-something days went by, my nausea – while still a constant presence – had improved to the level that I felt perhaps I could keep a bite of food down. There were several foods I wished I’d been able to have one more time, so I began trying a single bite at a time on my better days. Sometimes I kept it down, sometimes not. This pattern has continued, although now I can sometimes keep a small succession of bites down in one go. Even when I do keep the food down initially, because of the gastroparesis, I will sometimes throw it back up later that day, or even the next day. Basically, if I throw up at any point within approximately 48 hours of eating, I lose the food I’ve fought so hard to keep down. The process of eating is also difficult for my body in other ways. Among other things, the work involved causes my heart rate to skyrocket, and often my jaw muscles fatigue so quickly it takes all of my concentration and willpower just to chew enough so that I can swallow. Sometimes my jaw becomes paralyzed. Some days I eat a bit, some days I cannot. It all depends on what my body’s doing that day.

Overall, I am not getting anywhere near the amount of calories the average bedbound person needs to survive. Yes, I’ve tried liquid forms of nourishment, but those are often more difficult to keep down than a plain form of solid food. I have lost weight, but I am still here. I’m not sure how many calories I’m keeping down, but I can remember even as far back as several years ago gaining weight on less than 200 calories a day (some people with ME have this issue, while some have just the opposite). The running theory in my case regarding how I am surviving on so little food each day is that because my digestive issues came about so slowly, progressing over the course of years rather than hitting all at once, my body somehow trained itself to survive on less food than the average person needs. If, as a healthy person, I had suddenly gone from 2,000 calories a day to less than 200, I would likely have starved to death. But the body is amazing in its ability to adapt, given enough time, to survive in even the craziest situations. We (my medical team and myself) believe this is the situation for me.

That said, my condition is still listed as terminal (though not because of the nausea). Due to Medicare changes, many people who would formerly have had hospice care until they died are going without, and I am one of those individuals at this point. I have been in hospice, but right now I am not. I am, however, receiving medical care from home as needed through my primary doctor. He has taken the time to learn about M.E. and has truly gone the extra mile to ensure I am not left without care – even going so far as to give me his personal promise that I will never again be left without access to the medical care I need. This makes me one of the lucky ones. Many severe M.E. patients are left without access to any care at all. I’ve been there, done that, and have no desire to go there again. My doctor and I may not always agree on everything (ie, the best use of the only medication we’ve found to even touch my pain), but he is a rarity and an absolute godsend, and I would be in a world of hurt (okay, much worse hurt) without him!

The same would be true without my husband, who among other things has had to manually deliver shots to me every two hours for the past six months (long story, but it’s our only option right now). He is a hero in every sense of the word. My mom also continues to be heavily involved in my care, staying for hours at a time each week (along with the occasional overnight stay) to give my exhausted husband a chance to rest and/or get out and do some of the things he enjoys. My dad and brother have also been amazing in providing various forms of essential support. I understand not all ME patients’ familes are so understanding, and consider myself truly blessed to have people like this in my life.

I want to write more, but it has taken me far too long just to get this much out. Please know that I appreciate the comments that have continued to come, and I do read each of them personally as I am able. Unfortunately, I cannot respond to all of them, but I do read them. I would like to get a post up on some of the more recent happenings in the ME world, and have been working on one in bits and pieces for several weeks now. Hopefully I will manage to get that up soon. In the meanwhile, feel free to follow me on Twitter – I often find it easier to communicate in the bite sized format found there (plus I can retweet awesome posts from other users that I may not have the ability to write about myself, lol). My username is @aroundwthehound. Also, if you haven’t already, please check out my friend Kit’s posts over at A Rainbow At Night. I’ve gotten to know Kit quite well, and she occasionally includes a one or two sentence update about me in her blog posts (although she also has ME, so please don’t inundate her with requests for info about me). She has also started a new series on ME – its history, etiology, information on the various criteria, etc. – that is highly worth the time it takes to read and share with others.

Last but not least, please continue to help us get the truth out about true, classic ME. There is some terrific, accurate information about this disease on Kit’s blog, as well as in some of my older posts here (including the most important post I’ve ever written). And don’t forget the best resource on the web for ME-related information – Now more than ever we must do all that we can to educate both the public and our fellow patients so that, in moving forward, we can ensure everybody gets properly diagnosed with whatever condition they have, whether that be ME or something else. Thank you.