Chronic Fatigue Syndrome gets a Make-Over
Article dated February, 2015
Last week, the Institute of Medicine re-named Chronic Fatigue Syndrome, also known as ME, now renamed SEID (Systemic Exertion Intolerance Disease). CFS is the name most commonly used in the United States while Myalgic Encephalomyelitis (ME) is the more common name used internationally. As of last week, there is a third name to distinguish this already mysterious condition: SEID.
For many, Chronic Fatigue Syndrome onsets after a virus. Imagine being a perfectly healthy adult, child or teen and after a bout with a feverish flu, you find yourself feeling worse and worse. The appropriate time for the virus lapses, but as much as you fight to get well, your body and mind feel as though they are in shut down mode. No amount of rest or sleep is enough anymore. Just chewing your food makes you feel as though you need a nap. Your thoughts become so blurry and confused- you begin to fear Alzheimer’s or dementia. Migraines, loss of appetite, body pain, hypersensitivity to smells, sounds, lights- these symptoms are the tip of the CFS/ME/SEID iceberg. Imagine feeling like you are moving through quick sand- and there is no end to the breakdown. You are sure it will pass in time, but as time passes, you only become more weak, frail, and may even struggle to stand and walk. Doctors help you by telling you to “get more rest” and send you home. This is what many with Chronic Fatigue Syndrome experience.
The name, Chronic Fatigue Syndrome has been a problem since its origin. Can you imagine suddenly finding yourself confined to a bed, unable to raise your arms from sheer fatigue only to be told by other medical professionals and family members: “Sure, aren’t we all ‘chronically fatigued?” That has been the overwhelming problem with the original name. Doctors without enough education of the disorder have been brushing their patients off, leaving them incapacitated and searching for answers on their own limited energy supply. It’s estimated that as many as 91% of those with CFS/ME have yet to be diagnosed because physicians are still unsure whether or not it is psychological or “all in their [patient’s] heads”.
Over one year ago, the Institute of Medicine began running studies and tests to narrow down specific symptoms and markers in individuals who develop Chronic Fatigue Syndrome/ME. An independent panel of 15 physicians then met to narrow down a few diagnostic criteria and to decide on a new name for CFS/ME. They believe that each word in “Systemic Exertion Intolerance Disease” is more specific and clear as to how the condition affects the body.
Systemic Exertion- indicating the extreme fatigue or malaise all over the entire body.
Intolerance- implies impairment from any sort of activity. ‘Orthostatic Intolerance’ is an example of a common type of intolerance found in those with CFS (cited in the IOM study).
Like other conditions, those with CFS/SEID experience a long list of symptoms which are not all included in the short diagnostic list; keeping the diagnostic criteria short is meant to help doctors understand and treat patients with this disorder better. Here is the list of symptoms the Institute of Medicine’s special panel narrowed down after one year of testing those with Chronic Fatigue Syndrome:
-Profound fatigue lasting at least six months
-Complete exhaustion even after minor physical or cognitive exertion
-Cognitive impairment or “brain fog”
-Worsening of symptoms upon standing or Orthostatic Intolerance
There is a feeling in the CFS/ME community that the re-naming is confusing and sets struggling patients back further. Many in the CFS/ME community are disappointed that the new name is not “Myalgic Encephalomyelitis” to make the name cohesive, finally. Even though Chronic Fatigue Syndrome was the official name in the United States, the international name, “ME” has been largely adopted by CFS sufferers here in the US. However, the IOM argue that there is not significant research showing that patients with SEID have brain inflammation or muscle pain as the core symptoms (the meaning of ME). Some CFS specialists and patients with CFS/ME feel the updated name and new marker symptoms overlook critical issues of the disease like chronic pain, headaches, sensitivities, cardiac disturbances, and gastro-intestinal disruption. This isn’t the first time this disorder has had a make-over, however. Epidemic Neuromyasthenia, Myalgia Nervosa, Epstein Barre, and Royal Free Disease are a few of the names that have been given to those with CFS, now called Systemic Exertion Intolerance Disease. Researchers say in the next 5 years, it may be re-named again, as new research will likely continue to emerge.
Even though there is still uncertainty regarding the new name, many believe there is reason to be positive. The 235-page report released by the IOM is expected to lead to more research for the disease, better funding, and more appropriate treatments for Systemic Exertion Intolerance Disease. Those who at one point may have called up to 2.5 million Americans “complainers” or “lazy” will have more information and education to help the ignorant understand this debilitating condition. Doctors who may have once brushed off their patients’ symptoms because there were unclear guidelines, now have clarity on which criteria specify SEID. And lastly, it is now called a “disease” which shows there is progress in understanding how it affects the brain and body. For such a complex condition that is so debilitating, more understanding and more awareness is paramount!
Read the IOM report for yourself here: http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf
Posted on February 16, 2015, in CFS/ME/SEID, Medical Research/ Treatments and tagged autoimmune, Bed bound, brain, CFS, cfs awareness, CFS/ME, CFS/ME/SEID, CFS/SEID, Chronic Fatigue Syndrome, Chronic Illness, Dysautonomia, Fatigue, fibromyalgia, health, Health in America, Health in the news, Lyme, ME, ME/CFS, Medical Research, multiple sensitivities, Myalgic Encephalomylyetitis, POTS, Rare diseases, SEID, Spoonie, Systemic Exertion Intolerance Disease, world awareness day. Bookmark the permalink. 10 Comments.
I am so glad you tackled this one, and of course you did an excellent job, as usual! Thank you so much! You had extra information I had not read yet, and links to some good stuff for me to poke around on, which is always a huge bonus as well! ❤ you dear, so very much! The research bug caught me after I read this, and I ended up on PubMed reading, reading, reading. Making notes with links and pictures on Trello and ToDosist for later posts I would like to write. (future-overwhelming myself, lol!)
Now those of us diagnosed will wait, and we will see how this trickles down into individual practices, or is implemented by the CDC, etc.
Personally, anything is better than CFS, and having the word "disease" in its title is a giant win for patients!!! But there are a lot of questions remaining. Time will tell. And if nothing else, in five years we will revisit the issues and hopefully then have the evidence needed to give this disease a shared name internationally, which I also hadn't read until you posted this!
I love how in depth you go on the name change, not just the obvious stuff, and have to thank you from the bottom of my heart for writing about an issue that is both extremely dear to me, and also something I didn't have the…. I dunno, but I don't have it…. to write about myself this week.
Always in sync. What would I do without you? 😀
❤ ❤ ❤
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I’m so glad this inspired you to spend time researching. I don’t have SEID, but something about the name change made me want to write about what the CFS/ME community felt right now in regard to it.
I know that would be a dream for all with SEID… to have that international name, like you said… and a concrete list of symptoms that don’t leave so much out.
I’m so grateful you enjoyed this post. Thank you for saying so.
Lots of love back at ya!
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Reblogged this on Finding Out Fibro and commented:
This is a win, although maybe not the resounding victory to appease each and every CFS/ME/SEID patient (wow, typing that’s going to get old, real quick!), it does make a lot better case for disability claims that have been denied in the past, and for our doctors to try to understand our condition from a different perspective than the one they have been employing for so long.
I’m glad they took the number of requirements for diagnosis and lowered them to include only things that are common to almost every CFS patient, and a short, short list at that, including PEM or post-exertional malaise! Hopefully this name and criteria change will also help primary care physicians make an accurate, much more timely diagnosis, instead of forcing us to languish unacknowledged, in misery, blaming ourselves for our reactions to movement and exercise and thinking it’s all in our heads.
Though only time will tell, I think this is a jump forward for patients and advocates of CFS/ME/SEID, and one that will propel more research, more understanding, and more accurate and less harmful treatments.
A resounding thanks to aBodyofHope for writing this one, I tired myself out just reading all the mini reports and interviews and advocate responses, and wouldn’t have been able to compile this much information in any kind of way, much-less this organized, for at least a week. You are awesome girl! A seriously inspiration, and not just to myself by any means!!! Thank you for spreading knowledge and compassion. I hope that more and more of that knowledge and compassion begins to be reflected back your way from those around you, particularly in the medical field since I know your family is supportive and warm. ❤
Thank you so much for re-blogging this Jess! What a great surprise and honor that you would share it on your own page. I hope I shared the appropriate information that those with CFS/ME/SEID would have wanted to know regarding the changes both on the medical side and in the Spoonie community. Yes, you are so right, that is already old, isn’t it?
I hope you personally see positive effects from this change in the future from treatments and more compassionate, knowledgeable physicians. Time will tell…
Thank you again for sharing and for the very kind well-wishes. I hope the same for you; that your health improves and that you feel supported in your life.
Spoonie hugs ❤
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What a gorgeous photograph! Absolutely stunning.
The problem with labels is, as you know, that they all carry baggage – and each label change has new implications that end up being reflected in how people experiencing the problems are treated. Diagnosis is a social exchange, validating and lumping a bunch of symptoms together, and giving the recipients something to use to develop expectations for the future, and so that other people will understand something of what they’re going through.
I’m glad the old labels are being relinquished: it’s not helpful to call the problem “ME” when there’s no inflammation, and when it’s not always experienced in the muscles. Chronic fatigue is probably a better term but carries that “syndrome” label that means to some doctors that it’s not “real”. I’m not sure that SEID will provide people with a better experience, but like you I think it might help validate the problem as a disease rather than a collection of symptoms.
In the end though, the way these symptoms affects an individual in the context of his or her own life will be different from person to person. The meaning of ongoing fatigue will be different depending on what’s important to the person, how they respond to these limitations, the important tasks they want to do, the people around them, and their pre-existing other health problems.
I hope that one day medical practitioners in particular will go beyond trying to “lump” people together and instead consider that each person they are working with has their own unique experience of what it is like to live with their symptoms – and hopefully treatments will focus on helping the person do what’s important in their life.
Thanks for the link to the report, and your summary.
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Thank you so much for commenting.
This wasn’t an opinion piece, but I was amazed at how much they shortened the list of diagnostic criteria. Like you, I think it’s impossible to find the same exact symptoms among every person with an expected condition.
For instance, I have POTS. I could have just as easily been diagnosed with SEID if a cardiologist hadn’t focused on my heart.
I agree that there is a scale in which people suffer from SEID, but I don’t necessarily feel that scale is behavioral.
Until the medical community sees patients as individuals, each of us will have to continue seeking out our own treatments. I hope more become available due to this report.
I think the medical community still needs to go much further to see that people with health problems are people first, we experience illness, and yet all they treat are diseases. It takes work to see the person inside the disease.
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I agree with you on that. Most physicians are so far from that now, however, it’s difficult to imagine a system like that, unfortunately. Maybe someday medicine will be more integrated like some cancer centers are now. It seems like certain Cancer hospitals are using a more individualized approach. Maybe that will begin to influence other doctors.
I don’t know how I feel about the new name, as I think “exertion intolerance” sounds like something a smartass would say to mean “lazy.” Still, it’s hard to get a accurate name for such a complex disease, and I think that by talking about it and getting it out there, researchers and doctors will get it taken more seriously by the general community, as it’s very serious to those who suffer from it!
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Wow, yes, maybe it does sound a bit like a smartass version of “lazy.” That’s no good.
Thank you for sharing how you feel about the new name. I know people with the disease are worried about the changes- hopefully, like you said, it will be taken seriously.
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