Tag Archive | chronic fatigue syndrome

ME vs CFS – What’s Up With The Name War?

(Note: The following is an excerpt from my longer post, “Pyrexic Disease (or, Why The Creation of SEID Should Concern Us All),” written soon after the release of the recent IOM report. That said, I felt the analogy/explanation below deserved to be in its own post, separate from the SEID/IOM debate, so that people interested in more general ME and CFS topics can easily access it. If you are interested in my interpretation of the IOM report and how it will affect us, feel free to click the article’s name at the start of this paragraph. Otherwise, enjoy the post, and please feel free to share with as many people as possible! Thank you!)

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.

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.

ME vs. CFS – They’re Not The Same!

Heads up, folks! This is probably the most important post I will ever write. It’s certainly one I feel very passionate about. It’s also a bit daunting, because I really want to get it right, to write this post in such a way that people will understand the truth in what I’m saying and pass it on. So, here it goes.

ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as “MECFS,” “CFS/ME,” etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.

Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. One of the hallmark symptoms of ME is heightened muscle fatiguability after minimal exertion with extended recovery time. This means our muscles fatigue very quickly while performing even trivial tasks – often to the point of paralysis – and can take multiple days to fully recover, often with significant, difficult to treat pain. The name Myalgic Encephalomyelitis means “muscle pain and inflammation of the brain and spinal cord.” It’s a perfect fit. In 1969, the World Health Organization recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease (located in the ICD at G93.3).

Then the US got involved. In 1984 there was an outbreak of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. They scanned a couple files, then spent the rest of their trip skiing and relaxing. They returned to their jobs with the official conclusion that there was nothing to worry about. Three years later, the US formed a committee to discuss the illness that had caused both this outbreak and several similar ones across the US and Canada. Out of the approximately 25 people at that meeting, only three had extensive experience researching this disease and working with ME patients themselves. All three of these ME experts walked out mid-meeting when it became clear the other, non-expert members were determined to create a definition that had nothing at all to do with ME and everything to do with a combination of symptoms from Epstein Barr and infectious mononucleosis (glandular fever), which many at the time mistakenly insisted were the cause of these outbreaks (theories which made no sense at the time and have since been disproven time and again). Rather than listen to the experts and define/call the illness by the well researched name already recognized by the World Health Organization, these non-experts came up with the name Chronic Fatigue Syndrome. This is where the two names became linked.

However, the diagnostic criteria the US chose to diagnose CFS is very simple and absolutely cannot be used to correctly diagnose ME. In order to be diagnosed with CFS, a person must have fatigue lasting 6 months or longer which worsens after exertion and is unexplained by any other illness (technically this alone should rule out everyone with ME, whose fatigue is explained by a WHO/ICD recognized illness). Also note that CFS is a syndrome, meaning a collection of similar symptoms, as opposed to a specific disease process. It is not and was never intended to be seen or treated as one specific illness, having been created simply as a category for researching unexplained fatigue (don’t believe me? Read the last sentence of the abstract of the paper that officially created/defined CFS back in 1988). For a doctor to look at someone and say “You have CFS, and there is no treatment for it” is wrong. You cannot treat CFS because it is not a single illness, but a whole collection of illnesses not yet diagnosed in the people carrying the label. Think of all the illnesses out there that cause some level of fatigue. People from all of those illnesses are being misdiagnosed with CFS every day. This is why researching CFS is a waste of money. You cannot define it or find a single cause or treatment for it because there is no single “it” to research. That is CFS. “It” is fatigue from every cause under the sun, not yet diagnosed, often because doctors are under pressure not to order the expensive tests necessary to find each person’s illness.

ME, on the other hand, is a distinct, clearly diagnosable neurological illness, similar to MS (for a list of similarities between the two, click here). It is not a diagnosis of exclusion like CFS (ie, “you can only have this if nothing else explains your symptoms”). Just like other neurological diseases, it is possible to have both ME and other illnesses, even those with similar symptoms, as long as you test positive for all conditions present. And yes, there are specific tests which can diagnose ME with a high degree of accuracy – higher, in fact, than for many other neurological illnesses, such as MS. Furthermore, studies have shown that less than 1 in 10 people diagnosed with CFS actually have ME. That means 90% of CFS patients have something completely different from ME. This makes combining the two terms not only highly inaccurate, but also extremely harmful to both patient groups involved. By taking media attention and the precious few research dollars intended for ME and spending it instead on CFS, it leaves those of us living with this horrendous disease with literally no voice and no hope for a better future. All our research dollars are being spent on people who don’t even have our disease! What hope for a better future does that leave us? What hope for a cure or decrease in our suffering could we possibly have when researchers aren’t researching our disease at all, using our valuable resources instead to chase the mirage of conditions included under the CFS umbrella?

For CFS patients, linking their illness to one they do not have keeps them from finding out the true cause of their symptoms. Most fatigue producing illnesses have at least some treatment available. CFS patients are being denied appropriate treatment by doctors who are content leaving their patients with a label which basically says “I don’t know what’s wrong with you, and I’m not going to search any further.” One study found that a whopping 30% of individuals suffering from Major Depression are misdiagnosed with CFS. 30%!!! That’s unforgivable! Especially considering Major Depression is a highly treatable condition. There have also been people with cancer, MS, Lupus, Lyme disease, AIDS, and many more illnesses, all misdiagnosed with CFS and left to suffer (and many times, worsen) on their own. If you are living with a diagnosis of CFS, I cannot urge you strongly enough to keep pushing for the real answer behind your symptoms. Keep seeing doctors until you find one as determined as you are to find your true diagnosis. Don’t give up! You’ll never find out what treatments are available to you until you first discover what is truly behind your symptoms. Do not, by any means, accept the non-answer of CFS. Every diagnosis of CFS is a misdiagnosis.

If you think you might have true ME, I recommend using the International Consensus Criteria as a starting point towards making that determination. It’s not perfect, as the authors unfortunately used many mixed diagnosis “ME/CFS” papers while doing their research, but it does include many typical ME symptoms in its criteria and can help rule out many of the illnesses frequently misdiagnosed as ME. To truly define ME (and only ME), the ICC would need to add the requirements for viral onset and specific, testable muscle fatigue that together truly define and differentiate ME from other, similar conditions. If you’d like to know more about what specific tests can be used to give a concrete diagnosis of ME, check out the page “ME tests.” If you’d like to read more about the difference between ME and CFS, as well as the politics which led to the current mess we are in, I highly recommend reading “The Misdiagnosis of CFS.” I’ll write more a about what, specifically, ME is in a later post, but if you want to get a head start, I recommend visiting The Hummingbirds’ Foundation for ME, which is one of the very few websites with accurate information about this disease. There is also a truly terrific series on all things ME – its history, symptoms, and what needs to happen now – going on over at A Rainbow At Night. Click here to read the first installment.

I promise to write more later, especially about how this illness has played out in my life, but for now I’d like to end this post with a plea. Please, don’t ever combine the terms ME and CFS in any way, and take time to educate those you see doing so. To combine those two terms is to assist in the propagation of a myth that hurts hundreds of thousands, if not millions, of people around the world every single day. None of us can get help until this myth disappears. Please help me spread the truth. Thank you.