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 acute viral onset and specific, testable muscle fatigue that together truly define and differentiate ME from other, similar conditionsa. If you meet the ICC criteria, I highly recommend reading Dr. Hyde’s Nightingale Definition of ME, which can be downloaded here. This is the best ME-specific definition currently available. 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 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.
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.
Documenting M.E. 
I had not thought about it this way, I’m glad you wrote this blog. I read Dr Byron Hyde’s book a few weeks ago in the hope that there were more tests that could be done to figure out what was wrong with me and how I could improve my health and was pretty disheartened when I came to the end and discovered that because my illness began with a bad case of an enterovirus, I have ME and there is no further medical advice that can help me.
I promise not to call it chronic fatigue syndrome any more.
Hi! Thanks for the comment. I’m glad the post helped clarify some things for you. I’m not sure what about the book you read gave you the impression that there’s nothing you can do to lessen your symptoms. Depending on where you’re at in the illness and how severe it is, pacing can be a big help, or just plain resting a lot and limiting sensory input, as well as physical and cognitive exertion. It’s true there’s no cure yet, but we can definitely make things easier or harder on ourselves symptom wise. There are also some diet changes that some people benefit from, although what helps who seems to vary from person to person, and for me nothing dietary made any difference. I recommend spending as much time as possible at the Hummingbird site linked to above. There are some pages on how best to manage ME that you may find really helpful. They also sell a book from that site that is basically a collection of the best/most important articles from the site. I and my carers have found that to be extremely beneficial as well, since the sheer magnitude of information on the website itself can be overwhelming at times (I bought the Kindle version for myself and the print version for others). Hang in there. ME can be an extremely difficult illness to live with, but know that you’re not alone… Hugs…
Thank you for the hug and advice, I really appreciate it.
I didn’t really explain myself properly, I did find lots of advice but nothing further to the advice I had already received or researched (and I have found lots of things that have helped) but I do feel silly that it has been two years and the difference between CFS and ME hadn’t clicked for me before. I’m off to edit the CFS out of my blog!
When I was diagnosed the doctor wrote down a whole list of names: M.E., myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia so I think that confusion stuck with me and to explain to people I would call it post-viral chronic fatigue syndrome.
Ah, that makes sense. I went through the same process, so don’t feel silly. It took doctors over a decade to diagnose me with “CFS” and Fibromyalgia. Turned out I had neither, but it started us down the road to learning about ME. Once I understood the difference between ME and CFS (and that ME was probably solely responsible for my pain, not fibro, which many of docs automatically diagnose with CFS, even though unlike CFS it is a real thing all its own), I was lucky enough to find a doctor willing to do the research himself and eventually change my diagnosis based on my history, symptoms, and meeting the International Consensus Criteria. Several local doctors have now learned about true ME, which really helps. 🙂
I’m thrilled to hear you’re editing the CFS out of your blog! The more of us who start being clear to the public on this, the sooner we can finally get some help! You rock!
Reblogged this on someone's idea of luxury and commented:
I read Dr Byron Hyde’s book recently – read it if you haven’t already, there might be a gem in there for you and your condition – and then reading this blog post made a lot of sense to me. What do you think? I’m interested in everyone’s thoughts.
Thanks for reblogging! I’ll definitely be checking your blog out as well. I appreciate you helping spread the word about the differences between ME and CFS, and the harm we do by combining the two terms. Thanks again!
Such an important distinction. It took years to work out the distinction myself as I dealt with so many different doctors who told me so many different things. I’ve spoken to patients with a CFS diagnosis whose illness bore absolutely no relation to the neurological symptoms I have lived with for the last eleven years yet doctors try to treat us all the same way.
Thank you, and you’re absolutely right. I feel badly for those individuals stuck with a CFS diagnosis. Every sick person deserves an accurate diagnosis. Unfortunately, by its very existence, CFS gives doctors and insurance companies a way to avoid giving people what they deserve, creating an “accepted” way to tell people they’re giving up early on finding any real answers (and in most cases, fooling people into thinking they have an answer, that is, a single diagnosis that can be researched and someday cured). It’s a sad situation for everyone involved.
Thanks for the comment! Love your blog, btw!
Ditto
YES! The core feature of M.E. is muscle fatigue following minimal exertion that takes anywhere from 3-5 days to recover. Without this, there cannot be an M.E. diagnosis.
That’s definitely part of it! Although the primary defining feature of ME is damage to the Central Nervous System, which causes all that other stuff, and of course is indicated in the disease name itself. Most, but not all, talk about experiencing muscle fatigue, but all seem to have muscle pain (also included in the disease name) which comes in part from a buildup of lactic acid. And of course there’s the more talked about generalized extreme fatigue after exertion, although it may not begin for 24-72 hours after the exertion occurs, and can take days, weeks, months, or even years to recover from, depending on the severity of the person’s illness and the type of exertion performed.
None of it’s any fun, that’s for sure! Thanks for stopping by and taking time to comment!
Hello!
That is a more recent explanation. The loss of muscle power that begins 24-72 hrs after the exertion is diagnostic because, when it occurs, it doesn’t happen in any other illness, but simple worsening fatigue or even worsened neurological symptoms are not diagnostic on their own because this also happens in viral diseases and bacterial diseases such as Lyme disease because of the immune system component. This was actually my main complaint of the new international criteria. (I made a write up about it when they came out.) I know people who have that symptom but in NO WAY have M.E., so it definitely irked me when they were released! Muscle fatiguability as part of the core is known as the Ramsay definition (from the 80s, before CFS was invented), if you want to look it up! He only said he’d be very unwilling to dx someone without it, but made point to note that people with mild or even moderate forms of the disease might not exhibit it until after exercise, and it was a feature of the chronic phase. Also I’m not sure if you’re on Twitter, but I did RT this post to my followers.
Kit
This is a really great post, well done you for finding the energy to write it, and to write it so well. The CFS or ME arguement is one that is always cropping up on my twitter timeline, and a lot of the people I interact with, and me personally, say that their doctors refuse to ever refer to it as ME, it’s ALWAYS CFS, even if it isn’t CFS if that makes sense? It is annoying, and definitely undermines the severity especially to people who don’t know much about the illness or the symptoms, and it just screams ‘you are just tired get over it’ It’s a topic many of us are passionate about, and I can tell you certainly are. Thanks for sharing the links too, I’m too tired to have a look now but I will save them for later hayley from http://www.hayleyeszti.blogspot,com
Hi Hayley! Thanks for stopping by (and nice blog)! I agree with you, getting doctors in the US to change a CFS diagnosis to ME (when it fits) can be a real challenge. Most docs don’t know the difference, and many aren’t willing to do the research necessary to learn. I got lucky, but not without a fight to educate. I wish all ME patients could get the correct diagnosis written down on paper. Maybe someday things will change. I hope so, anyway! Thanks again for the comment and for sending me your blog link. I’ll definitely check it out more once my brain rests up a bit! Take care!
I stumbled upon this as I am doing research for a lifestyle blog I am setting up – a lifestyle blog about those of us with, what I like to call, the triple axis powers – HMS, Fibro, CFS/ME <<< this is how doctors explained the illnesses to me before. As if on a sliding scale, with ME/CFS being the ultimate bad kaiser of pain. I was blatantly told ME/CFS were synonymous terms.
I feel so enlightened by your post I feel like crying. Thank you so, so much for all of this information. I return home from University to see my doctor this week. This is the first thing I am raising, do I have ME? If not, what is really wrong with me and how do I find out? I am especially passionate to join and contribute to the community of people dealing with unrecognized/vague chronic illnesses. I was twelve years old when my issues started, and there was only one hospital in the country that recognized and treated my HMS symptoms. The rest said nothing was wrong with me, and one even dislocated my shoulder twelve times to show her medical students. Because surely it wasn't hurting me that badly. What if, because I didn't educate myself and speak out, this happens again?
I am twenty now, and struggling to complete a degree. Medical problems worsen daily and I am often bed bound for days in a row. I'm ill – this isn't me and I'm tired of not talking about what is going on, the failings and inadequacies of the system. You are a total inspiration. You have lifted a small but vital cloud of ignorance from my understanding.
If I can soften the blow for the next twelve year old who will be diagnosed/misdiagnosed, that makes everything happening beyond worthwhile, it makes it valuable. I will most certainly blog about this. It is too important not to shout from the rooftops.
All of my love, and I mean that sincerely,
Harriet
Dear Harriet – Wow! You have put a huge grin on my face – along with some color from blushing, I’m afraid! Thank you for taking the time to comment and tell me what this post means to you. There is so much persistent misinformation out there I often feel like a drop of water in an ocean of mud, trying to clarify the cloud of lies put into place by the current medical system. Hearing that something I wrote actually made a difference – even if just for one person – absolutely made my week. Thank you!
I wish you all the best as you talk to your doctor about these issues. Unfortunately, most doctors will tell you ME and CFS are the same, because that’s what they’ve been taught as well. Getting them to take a step back and look at the actual facts can be extremely challenging. Your best bet may be to print off something like the International Consensus Criteria, explain that this is ME as it has been since before the invention of CFS, and ask if, by those criteria, you would qualify for a diagnosis of ME. If there are aspects you’re not sure about, the Hummingbird site’s page on testing and diagnosis can give your doctor some specific tests to either confirm or deny the diagnosis. The most challenging part in all of this will probably be finding a doctor who’s willing to learn the facts and help you find answers, rather than expecting you to be content with the non-answer of CFS.
I love the passion you clearly have for helping to educate others so that someone else can be prevented from facing some of the challenges you have had to overcome. We need more people like you in the chronic illness community. If you think of it, be sure to let me know the address once you start posting to your new blog. I’d love to read it!
Thanks again so much for making my day today. I hope your visit with the doctor goes as well as it possibly can, and sets you on the path to finally finding some accurate answers. Take care!
“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.”
People sometimes comment on my blog, asking why I refuse to continue with doctors who want to diagnose me with CFS to account for the symptoms that can’t be explained by POTS (and now EDS). You explain why perfectly. It’s a garbage can diagnosis that prevents the doctors from continuing to search for an answer.
Thanks for all of the information on why ME is different than CFS. I will share this information with others and hopefully it will make a difference! Sorry some of my fellow Americans screwed everything up by creating “CFS”…
Hi Jackie! Thanks for the comment! I applaud you for standing up for your health and refusing to continue with doctors who are content leaving you with a non-answer. It’s difficult to care about yourself enough to be that firm about who you allow to treat you. Way to go!
I’m actually a “fellow American” too, and like you I often feel like apologizing for our doctors/government messing things up so badly. It’s embarrassing and frustrating. What’s worse, I’m almost positive they’re about to do it again with this new panel they’ve created! Oh well. We can only do what we can do, and it seems we’re both doing it! Thanks for stopping by! Oh, and nice blog, btw! I had to follow. 🙂
Thanks for this good piece. You wrote ‘In order to be diagnosed with CFS, a person must have fatigue lasting 6 months or longer which worsens after exertion’. If this is referring to the Fukuda criteria the fatigue doesn’t even have to worsen after exertion to get a diagnosis. Post exertional malaise is listed in the secondary symptoms which I think are about eight and as you only need four of them PEM is not even needed. So one of the hallmark features of ME a global worsening of symptoms after minor exertion is not even needed to get a diagnosis of CFS
It is of course good to note that there will be people diagnosed with CFS (especially in America where I believe almost everyone gets the diagnosis of CFS though I think they are using the term ME/CFS more frequently now, also not a helpful term) who do have classic ME so I am glad you have referred people to the ICC criteria to establish whether they feel their illness fits that criteria.
Hello Annie – You’re absolutely right about the Fukuda criteria. Thanks for making that distinction. You’re also right that a small percentage (studies show less than 10%) of those diagnosed with CFS may actually have true ME. In fact, I myself (an American) was initially given the misdiagnosis of CFS. It took a lot of research and talking with doctors to get the correct diagnosis of ME. The ICC aren’t perfect, but I feel they’re by far the best option we have for a set of criteria to distinguish ME from other conditions. Thanks for the comment!
Thank you. Sorry it was only after writing the comment did I realise you were American and so are only too aware that many Americans struggle to get a ME diagnosis even when that is what they have. Do you have a link/reference to the study that claims only less than 10% of people diagnosed with CFS have ME? I am British and believe a Professor looking at autonomic dysfunction in people with ME did one study showing about 48% of people referred to her with ME didn’t have it but had solely fatigue for a variety of reasons. Although I actually think she refers to it as CFS but she does use the Canadian criteria to diagnose which though are not perfect are better than the way too broad Fukuda. I do think the criteria used to make the diagnosis is key. I wasn’t aware of the study you refer to. Many thanks
Hi Annie. I am running a bit low on energy today (tons of comments coming in – yay!), so I will link you to one place I read about this. I’ve read about it in several places. Some say 10%, some say less than 10%. The International Consensus Criteria paper itself actually refers to the study with a link. If you go to the ICC paper ( http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full) and scroll down past the criteria to the section titled “Criteria Are Supported By Research,” you’ll find the following statement (with footnote links), “In a study of the Reeves empirical criteria, Jason et al. reported that 38% of patients diagnosed with major depressive disorder were misclassified as having CFS and only 10% of patients identified as having CFS actually had ME.” Hopefully that information will help you find the actual study referred to. Good luck! And kudos to you on checking your facts! I love it when people do that! 😀
I’m sorry you are running a bit low on energy today so it is very kind of you to reply so quickly. Thank you for the link which was very helpful. I read the Leonard Jason paper mentioned I though I can see it says that 38% diagnosed as having CFS actually had MDD I couldn’t see where it said only 10% of those who have CFS have ME. I can only conclude that that assertion was from the statement in the Leonard paper that said ‘With the Reeves et al. empiric case definition criteria, the estimated rates of CFS in the US have increased to 2.54% (Reeves et al., 2007), rates that are about ten times higher than prior CDC prevalence estimates (Reyes et al., 2003)’. Anyway, very interesting and not at all surprising that people diagnosed with CFS using criteria such as Reeves, Fukuda or Oxford would not get a diagnosis of ME with say Ramsey or ICC criteria. No reply necessary. Reserve your very limited energy. Hope you don’t get too much or long lasting payback from a busy day of comments
I think the criteria are important. Although there are without a doubt many people who have been diagnosed with CFS who then wrongly conflate it with ME, I do believe there are people who are diagnosed with CFS but do have the classic Ramsey defined ME, which as said focuses on the damage to the central nervous system. There are people who although fit Ramsey defined ME do not get ME as their official diagnosis but CFS. Likewise some are diagnosed with CFS who don’t have the illness ME but do then believe that CFS is the same as ME, when we know it isn’t, and say they have ME when they haven’t. They have some kind of fatigue but not the distinct illness ME which is so much more than fatigue. I agree it’s a right mess
I have had ME for 16 years, severely for the last nine years ranging from very severe to top end of severe. I have been completely bedridden for the last year but can still get online and read. At my worse I had to be in a darkened room, unable to be online, read, watch tv, in terrible pain and could only manage to speak a few words daily.
I prefer the ICC criteria to the CCC and I agree the Ramsey criteria which first documented the illness are also very good. I have read the reason some are pushing the Canadian criteria, especially in light of the dodgy IOM contract, rather than the ICC which are better is because they have been used in research and will act as a starting point which definitely need to be improved on. They believe having CCC as a starting point which though far from perfect, would still be better than what the IOM may come up with
I agree that fibro seems to be wrongly conflated with ME more and more too. Classic ME too includes a lot of pain and I sometimes wonder when someone says they have ME and fibro whether the fibro bit is just the pain aspect of ME. And of course solely fibromylgia is different to ME and definitely not the same
To add, I can only speak with knowledge about the UK where I live and though some people fit the criteria of Ramsey ME there are few, if any, doctors who are familiar with it and so give them a diagnosis of CFS when they if they had the right tests – which are not offered or available to UK patients on the NHS – such as spect scans, tilt table, immune tests would show to have the illness Ramsey documented.Sadly, doctors also give other patients a diagnosis of CFS which definitely isn’t ME. I just think it is important to remember that some with the official diagnosis of CFS do have ME, though many don’t.
I also appreciate that though in America people can be diagnosed with ICD 9 viral associated encaphalomyletis (excuse spelling) Americans I spoke to say it is very hard to get this diagnosis. I am not disagreeing that there are far too many people diagnosed with CFS who definitely don’t have the illness ME but it cannot be ignored that some diagnosed with CFS do have the illness ME. It is certainly the case here in the UK
Annie – I agree. I don’t think anyone is saying that none of the CFS patients have ME, just that it’s an extremely small percentage. Basically, take the percentage of the population that has ME vs all other fatigue producing illnesses put together, and it’s probably similar to the percentage of CFS patients who actually have ME.
As an American, I was initially misdiagnosed with CFS myself. Actually, I was misdiagnosed with Fibromyalgia, too. Eventually we got to the root of things and it turns out I do, in fact, have true ME, but I do not believe my pain is from Fibromyalgia, since all of it is very commonly caused by ME alone and fits in perfectly with that diagnosis. Because CFS has become an umbrella term given to anyone who complains of fatigue, obviously some ME patients will be given that misdiagnosis, even though fatigue is not our primary or most concerning symptom. It’s just that the vast majority of CFS patients have something else. And most other fatigue producing conditions have treatments available. People with CFS are doing themselves a huge disservice by simply claiming the name ME because it sounds better, when chances are *extremely* high they have something else instead. And people with ME do everyone a disservice by combining the terms CFS and ME. It would be like Cystic Fibrosis patients saying everyone who has ever felt out of breath, coughed, or had asthma could claim to have CF because it sounds better than saying “I’m out of breath.” It’s just insane.
As mentioned above, those misdiagnosed with CFS absolutely must push for an accurate diagnosis. Chances are very slim they have ME, but that’s a good thing (for them)! The world needs to stop treating CFS as though it were a single, researchable, treatable disease. The term CFS needs to be abandoned completely, and doctors need to once again do their jobs by finding real answers for each patient. I think all of us here are in agreement that separating CFS from ME is essential, and finding the right diagnosis for each CFS patient (whether ME or, most often, something else) is also something that needs to happen. The sooner, the better!
Thank you. As you said it is clear we agree that blending CFS with ME is incorrect. I am glad though it is acknowledged that there will be a few people with the diagnosis CFS due to ignorant doctors who do have the illness ME as documented by Ramsey. Yes, they should try to get re diagnosed as ME if this is what they have but it is not always easy, especially if the persons is bedbound and cannot leave their home.
I agree the ME/CFS label is not helpful and just perpetuates the idea that they are the same. I also think that CFS isn’t a distinct illness and is just an umbrella term for various fatiguing conditions including psychiatric and ME needs to be separated from CFS and then the term CFS should be dropped. Thanks for writing this piece
No problem! Thank you for adding what you have as well! Always great to meet others who understand and are passionate about spreading the truth. 🙂
Very well said. You are excellent at really getting your point across. I agree with you 100%. I have now read 2 of your blogs & loved both of them. And I’m keen to read all you have to say. You’re an inspiration. I have had severe M.E For over 7 years and people are completely clueless about how horrendous this illness is because we’re bedbound and never leave our rooms. So people never see us. I’m so sorry to hear that you are in a hospice but I truly hope those caring for you are very understanding and compassionate. Thank you for sharing your wealth of knowledge on M.E with everyone. The only way we’ll ever get any further with scientific M.E research, is by distinguishing those that meet the strict M.E criteria and removing those that don’t meet it from this research altogether. Then progress can finally be made. But what’s scary is it seems they are trying to do the opposite. Dumping M.E, CFS, Fibromyalgia, Gulf War, PMS, IBS and others under an even bigger dump category. It’s madness, and it all seems very underhanded. Sorry for the essay! I wish you the greatest comfort possible Rich & I’ll keep you in my prayers, Rosie 🙏
Hi Rosie. Thank you for your kind words. I’m sorry to hear you also suffer from severe ME. Getting to know other severe ME sufferers is great, but it’s a mixed blessing. I hate knowing do many people are suffering this way.
I’m getting great care from hospice, so no need to worry there. They actually treat me at home, which is terrific since being in a facility would equate to sheer torture. They also keep visits to a minimum – usually once or twice a week – knowing how difficult it is for me to get through each visit. And all the nurses (and the doctor) have instructions on how to best avoid making my symptoms worse (as much as that is possible, anyway). I really am incredibly blessed to be receiving care from such a wonderful team. I only wish all ME patients had the same level of care!
Thank you again for reading and commenting here. Seeing comments like yours always brightens up my day. 🙂 Take care!
wow. i just discovered this post… but must thank you for writing it. i’ve suspected something along these lines for a while as i educate myself about CEBV, but this is the first time i’ve seen the topic spoken about. i haven’t seen it discussed anywhere and i’ve been reading a lot for quite a while. it’s all so crazy. your writing – all posts – is beautiful, clear, concise, articulate, admirable. thank you for sharing your life and your knowledge with us all, and sending warm wishes your way.
Aww, you’re making me blush! Lol. Seriously, thank you. I’m really glad the post helped you in some way. There’s definitely a *ton* of misinformation out there, but the truth is there, you just have to sort through all the lies to find it! The hfme.org site is excellent and has loads of accurate info on true ME, as well as information about what CFS really is and how it came to exist. Most of the articles have lots of direct quotes from experts, as well as direct references to studies, etc at the bottom, which helps back up what is written there. It’s definitely the number one resource I recommend.
Thanks again for your kind words! Take care!
The term ME is new to me. I’ve had chronic fatigue for 30 years. Unfortunately my concentration is shot, it’s hard to read a. Lot of material. I suspect I have ME, mainly because I’m practically bedridden, get sick for days after activity. I’ve never been diagnosed with anything yet. I’ll have to think about this.
I’m glad my post was able to share some new information with you! I definitely recommend spending as much time as possible on the hfme.org site. It is hands down the best source of accurate information on ME, including how to know whether you have it or not. Keep in mind that the vast majority of people diagnosed with CFS do not have ME, but a small group do, so it’s certainly possible this could be the case for you. In any case, I wish you the best of luck in figuring out the true cause of your symptoms, getting an accurate, real diagnosis, and finding successful treatment!
I think the most meaningful think I’ve learned is that the most painful day of fatigue following activity is not necessarily the next day, it could strike 48 hrs later, something that always puzzled me. If I go shopping on Monday, I collapse in bed when I get home. I know for sure I’ll be sick in bed Tues. what confused me was that I seemed to be even sicker on Wednesday. I though it must be me somehow. Now I’m studying ME, it all makes sense.
Until we all realize that they’re not the same – and dump the “CFS” – we will, in my view, never cure Myalgic Encephalomyelitis. I agree about the http://www.hfme.org/ site being the best source of information on this illness (warning: it’s very, very detailed – take it slow!).
Brooke, I’ve added a link to your article on my twitter profile. I hope lots & lots of people read it!
Great title too “ME vs. CFS – They’re Not The Same!” – that should be up on billboards all over the country, EVERY country, until M.E. is finally researched and treated as M.E.
How shocking that we even have to say this!
Aww, thank you! I agree with everything you said, as you know from this post and our discussions on Twitter. I really appreciate the tireless effort you put into spreading this message day in, day out on social media. I hope more people learn the truth and become just as passionate about sharing it. Really, the truth is so simple once you learn it, it’s hard to believe more people aren’t aware of it! Let’s hope that changes, very soon! Keep up the good work!
Thank you for this brilliant post. I am hoping to reblog it on my blog http://cheeringfromsidelines.blogspot.co.uk *if* that’s ok wth you? I’m very new to this blogging malarkey so not sure if there’s a proper way to do it; what I’m planning to do is do a quick intro about why I think people should read your post, make it clear where it’s from (and give the link), quote some (not all) of your post but in a different colour to my part of the post, and do a ‘read more at…’ link at the end. Is that ok with you? Please say if you’re not happy with me reblogging or if you want me to do it differently.
Regardless of the above, thank you for this really important, clear, succinct and well-written post. xx
Hi Rachel,
Thank you for your kind words! I really appreciate them. Thank you also for asking to share this post on your blog. Different people reblog different ways, and the way you mentioned sounds great! Generally, the rule of thumb is to ask permission and to provide a link back to the original post in what you write. The rest is up to you. 🙂
I checked out your blog, and I really, really like it! I am so glad you decided to begin blogging. The internet could use more people like you who are passionate about spreading the truth about this disease. Keep up the great work!
Awww, thank you for your permission, and for your kind words about my blog! I’ve been meaning to start a blog for a long time, and I’m so glad I finally did; it’s been great to have a ‘space’ to process my thoughts in. I’ve got loads of posts in the pipeline because I keep thinking about different issues; without the blog, many of those thoughts would remain unprocessed and un-dealt-with. So it’s a very unaltruistic thing, I’m afraid! However, it has moved me to tears and made me feel useful again when I hear that something I wrote has helped someone.
My reblogging of your post is the next post I will publish, hopefully sometime in the next week. I have to be careful to pace myself and not expend too much energy on the blog – I can get carried away sometimes! So no promises on timescale but it’s definitely coming soon 🙂
Thank you again xx
No problem! I totally hear you when it comes to how beneficial blogging is to sort out thoughts and emotions. It really is a double blessing, helping both the writer and readers. 🙂
Pacing is definitely super important (and sometimes difficult!) in blogging, as in everything else. I tend to do okay when it comes to pacing posts, but occasionally overdo it trying to answer comments when they come flooding in on a particular post. I’m trying to force myself to be better about that.
I can’t wait to read future posts on your blog. I’m sooo happy you’ve decided to do this! Hugs!
OK I finally managed to reblog your post 🙂
Btw are you the Brooke who has commented on my blog? I only just realised it might be you – if it is, I am truly honoured, THANK YOU xx
Aww, thank you! The post looks great, and I appreciate you helping get the word out about the tremendous differences between ME and CFS.
Yep, I’m the Brooke who commented on your blog. Unless there are two of us commenting! You never know! Lol. But seriously, no need to feel honored. I really love your blog! And this blog is actually relatively new as well – we have that in common!
Thanks again for the reblog! I hope your week is going as well as possible!
This is SO important. If one can’t even get the name right, what hope do ME sufferers have of a) being taken seriously, b) being diagnosed properly, and c) coming to terms with their very serious condition. It is an absolute scandal that the name has been diluted over the last 28 years to now encompass people who are just a bit tired.
Thank you for your comment! I couldn’t agree more. Soooo many people (both those with true ME and “CFS”) are being hurt every single day by the confusion brought by combining two very different diagnoses – one of which (CFS) is a complete mirage! My hope is that more doctors will realize the truth about both diagnoses and begin performing all necessary tests and referrals to find the true cause for every patient’s symptoms.
That’s absolutely correct. ME is not “CFS” . “CFS” a make-believe made up syndrome by Dr Stephen Straus who in his own words (verified here: http://www.cfidsreport.com/images/Straus_001.jpg
) said :
“”I would predict that fatigue itself will remain the subject of considerable interest, but the notion of a discrete form of fatigueing illness will evaporate, We would then be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder, I consider this the desirable outcome.”- Dr Stephen Straus
He did that because he was a failed researcher.
Stephen Straus’s brother did the same thing. His brother was an oncology researcher for the NCI and had 2 sets of books and in the books where he had the falsified data that he used to collect the research money, he actually invented a tumor in a patient. He said he was achieving a 93% remission rate or a Lung Cancer that people usually died in 6 months and are still dying in 6 months. That was in 1978.
It was a high profile case, you can find it online, his name is Dr Marc Straus.
The apple doesn’t fall far from the tree!
Stephen Straus had no business practicing medicine.
He was a disgrace to the medical profession!
ME is definitely not CFS!
Do any of you know what “Malaise” really means?
I have been a Registered Nurse since 1985, unfortunately cut short the end of 1994 because of this illness. When I received a copy of the 1994 Fukuda Def for “CFS” from my doctor in New York and I saw that symptom, I thought it was a typing error or mistake, I thought, what the heck is malaise doing there, there is no malaise here.
Well if you knew what that word “Malaise” really meant, you would see why doctors have ignored the patients for 20 years since that 1994 Fukuda Defintion was published, with the last symptom on the list at that time being “Post-Exertional Malaise lasting more than 24 hours”
If you do a google and look up Websters dictionary or The Medical-Dictionary Free Dictionary and see what the word “Malaise” means, you decide if that symptom you suffer after any type of activity is really “Malaise”.
Im actually doing a survey and taking feedback from everyone on my blog so I can send it to the NIH Director because this nonsense and insanity of this “CFS” thing has to end!
Brooke here in the UK, ME and CFS are the same illness, they are defined as you say by a weaker defintion ( Oxford Criteria) but now all diagnosis by Doctors is always CFS and never ME. My understanding is that terminology CFS is now used worldwide and has confined ME to history as a diagnostic name.
Hi Ron – Someone else tried to tell me that awhile back, so I looked up the actual current facts. What you say simply is not true. Number one, ME and CFS will *never* be the same diagnosis, regardless of how often they are used together. CFS is no more the same as ME than it is cancer, lupus, AIDS, or MS. Number two, ME still has a distinct classification in the ICD. It is not combined with CFS there. Just like in the US, almost all doctors prefer to diagnose CFS rather than ME. Most don’t even know what true ME is. But they *can* diagose ME – *not* CFS – in both locations. It’s just a matter of finding a doctor who is educated and willing enough to do so. Not an easy feat, but not impossible, either. Best of luck to you…
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When I walked out the door after agreeing to become a prototype for this new syndrome of CFS, an illness that the ME literate doctors, Hyde, Parish and Shelokov identified as “similar to Royal Free Disease”… I was a bit worried.
I knew the CDC intended to confuse everyone with the bad name and ambiguous definition. This was bound to create confusion, as the CDC wanted.
But I stopped just outside the front door of Cheney/Peterson’s Alder street office. “Doctors aren’t stupid. They will immediately see the definition doesn’t match the abnormalities that were described in the newspapers. When they see there is a problem, they will come and ask us.”
Much relieved, I walked on, knowing that doctors couldn’t possibly be so stupid as to be misled by such a transparent trick.
A HITCH HIKER’S GUIDE TO THE HISTORY OF MYALGIC ENCEPHALOMYELITIS & CHRONIC FATIGUE SYNDROME
(This section may be seen in full by visiting the Nightingale Foundation’s site at http://www.nightingale.ca)
If we consider the Lake Tahoe epidemic alone we have the primary definitional determinant of Myalgic Encephalomyelitis.
The Lake Tahoe Epidemic represented an illness
a. With an acute onset,
b. With an incubation period of 4-7 days
c. Occurring in both students and adults,
d. Involving the central nervous system in a diffuse, non focal manner,
e. The onset of a Raynaud’s disease with a peripheral coldness, blanching and pain syndrome of fingers, hands and feet or significant postural hypotension or instability. A non-traumatic, acute onset of these two syndromes is consistent with an injury or a significant diffuse change in the autonomic physiology of the sub cortical brain.
f. rapidly developing flaccid muscle weakness with minimal effort or activity, (The Lake Tahoe epidemic was initially called Raggedy Anne Syndrome due to this finding.)
g. There were two illnesses, an acute viral like illness and a secondary persisting illnesses that in the more severe cases left permanent persisting sequelae
h. With peripheral pain symptoms that have variable features resembling in some cases, a radiculopathy, is some cases a vasculitis, and even a very low grade Guillam Barre Syndrome,
Although the final terminology of conclusion “h” is subject to debate, are features “a to g” a very difficult set of conclusions to come to? I don’t thinks so. There is a consistent similarity of the Lake Tahoe epidemic patients to all of the previous epidemics mentioned in this short history and the many others that are documented in our textbook, The Clinical and Scientific Basis of Mvalgic Encephalomyelitis / Chronic Fatigue Syndrome.
Yet retain these above Lake Tahoe features in mind when we come to the first CDC definition that was largely based upon this very same Lake Tahoe epidemic illness.
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I started a group on facebook for M.E. as defined by Ramsay because I’m tired of reading posts on M.E. groups, saying things like “not everyone with M.E. has pain, everyone experiences the disease differently” “I have M.E. and I’ve never had any pain”. It is very frustrating to see people who don’t have M.E. make false statements about it and then insist their illness is the same thing as M.E. The group is called M.E. not CFS.
On the test link it has this list:
SPECT and xenon SPECT scans of the brain.
MRI scans of the brain.
PET scans of the brain.
EEG/QEEG brain maps.
Neurological examination. Neuropsychological testing.
The Romberg test.
Immune system tests.
Insulin levels and glucose tolerance tests.
Erythrocyte Sedimentation Rate (ESR) tests.
Circulating blood volume tests.
24 hour Holter monitor testing.
Tilt table examination and standing/sitting/reclining blood pressure tests.
Exercise testing and chemical stress tests.
Physical exam.
Is there anywhere to find out what the results would look like, on any of these tests, if you have ME?
Sure. On that same page, under the section titled “More Information,” is a link to a page with details on what each of those tests shows in ME patients. Here’s a direct link to that page: http://www.hfme.org/testingforme.htm
Great, thanks.