As someone currently receiving hospice care due solely to the effects of ME, it irks me when people claim ME is not a fatal disease. Many, many ME-related deaths have shown that, at the very least, this disease can be fatal. I’ve seen people throw around a statistic which claims the death rate for this disease is 3%. What they don’t realize is most ME experts agree this number is grossly underestimated. Let me explain why.
ME is most similar in nature to another neurological illness, Multiple Sclerosis. Like MS, most ME experts agree there are certain subtypes which exist within the same illness name. The most commonly suggested categories (and those I personally see) are stable (illness remains the same or improves slightly with careful energy planning), relapsing/remitting (illness cycles through better and worse phases), and progressive/deteriorating (illness consistently deteriorates over time, regardless of planning and treatment). Of these three, the second category, relapsing/remitting, seems most common, while the last, progressive/deteriorating, is least frequently seen. Short of a miracle, no one ever fully recovers from ME. If you hear someone who claims to have had ME and is now functioning at 100% normal again, chances are extremely high they never had ME to begin with. Unfortunately, due to the high level of miseducation about this disease, thousands and thousands of people diagnosed with CFS believe they have ME when what they truly have is something completely different. Read my post on ME vs CFS for more on that.
That said, anyone who spends any significant amount of time studying the true nature of this illness will see the tremendous amount of damage it does to multiple body systems. It makes sense that this damage would have a shortening effect on most ME patients’ lives. For example, Dr. Elizabeth Dowsett says of ME patients, “20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.” Dr. Dowsett goes on to explain that the vast majority of these deaths are recorded as general heart failure rather than being officially linked to ME.
Herein lies the problem. Education and general knowledge of ME are so uncommon that for most of us, cause of death will be recorded as a secondary condition, even if that condition wouldn’t have developed without ME. This brings to mind another illness where sufferers nearly always die of secondary conditions: AIDS. People with AIDS generally die of secondary infections which their bodies are unable to fight off due to the effect of the AIDS virus on their system. Yet everyone knows AIDS is a terminal condition. We don’t deny its severity or its life-ending effect just because the final straw is nearly always a secondary condition. The same should be understood about ME.
ME is extremely hard on the body. One survey found people with ME most often die of heart failure, but we die from it on average over 20 years earlier than people without ME who die of heart failure. Cancer is another frequent killer of ME patients, but again, we tend to die from it decades earlier than non-ME cancer patients. Again, this makes sense, taking into account the strain ME places on nearly every body system, including our organs. It’s time for the world to wake up and realize the seriousness of this disease, but how can we expect others to recognize these facts if we ourselves refuse to face up to them?
Not everyone with this disease will die as a direct result of it. Other things can happen. But it is unrealistic and goes against what information we do have to believe that the tremendous strain placed on our bodies by this level of ongoing illness will have no effect whatsoever on the length of life we are allowed. Smoking shortens life. Overeating shortens life. Cancer and AIDS and kidney failure shorten life, despite allowing a much higher overall quality of life than ME. It only makes sense that ME shortens life as well, for some more than others. As someone whom doctors agree is currently dying from this disease, I beg you, don’t minimize its effects when speaking to the public. Don’t ignore people like me. Don’t let our deaths be in vain. Spread the word – ME does kill.
Documenting M.E. 
What you say makes a lot of sense. Yet somehow even though I have ME (moderate) I find this hard to think about. My loved ones want to talk about my recovery – and “when I’m better” – and I quite understand this approach. It is how I prefer to think too. Even just maintaining my current level without relapsing further could be an achievement I guess.
I agree though with what you say. ME can kill, even if the final straw ends up being something else. Yet there is so little known about the illness trajectory with ME. I so wish that research funds would be pumped into finding us real answers to help give us hope for the future.
Hugs to you and your DeeDee…. from me and Finn and Patsy! xx
Thanks for the comment – and the hugs! As for wanting to continue hoping, there’s nothing wrong with that. My next post actually deals with that topic. I agree with you, though, we need research funds, and we need those funds to be spent on actual ME patients (rather than CFS patients), so that we have more hope for a cure or a treatment or at least more understanding in the future. Hang in there! Hugs back at ya!
You are teaching me so much. Thank you!
It’s so true that education is important, because it leads to proper treatment, better medical care, insurance companies that don’t blow you off, bosses that take you seriously, and on and on. If a woman’s organ is damaged by lupus, it’s caused by lupus, not spontaneous liver failure. When my mom’s heart was failing they knew it was from a combination of diabetes and cancer treatments, they understood the diseases enough to know where the root of the problems lay. They were able to change her cancer treatments to try to mitigate the problem, instead of just assuming it was because she was fat or whatever. Knowing the causes and potential treatments and the potential outcomes is critical, and being treated respectfully by knowledgeable people should be your right.
Hi Cathy! You’re so right. I myself am very blessed to have a medical team who have taken the time to learn about my illness and all it entails, but I long for the day when this information is taught in medical schools and becomes much more common knowledge. I long for the day when more research is done properly into this disease so that hope for a proper treatment or even a cure becomes more realistic. Things are so muddled right now with all the misdiagnosed illnesses which fall under the CFS label being mistakenly thrown together with the distinct neurological condition of ME that I sometimes wonder if we’re beyond hope of ever getting the medical field to pay attention to us. But, as you said, that’s why education is so important! All we can do is our part in spreading the truth. Perhaps if everyone who hears the truth gets busy spreading it, things will get better sooner than anyone imagines!
Thank you for stopping by and takkng time to comment! Always great to hear from you.
In the early years of my illness, I was repeatedly assured by doctors that its impossible to die of ME. Through the various charities and support groups I’ve had dealings with however, I’ve personally known three people who died prolonged and agonising deaths as a dirrect result of. The oldest was only thirty-two and in all three cases the cause of death was attributed to muliple organ failure with no mention of the fact it was caused by ME. I imagine their deaths are only the tip of the iceberg so it angers me when ME is dismissed as fatigue and patients are told they’re lucky that its ‘only ME’ and ‘not something worse’.
Unfortunately, I relate all too well to what you wrote. Seems like at least once a month I hear about someone else who died after spending many agonizing years with severe ME. Most of these people seem to be in their early 30s, give or take five years. Like you mentioned, most of their deaths are recorded as some form of organ failure, despite the obvious role ME played in their demise. For most of these individuals, ME was the only serious diagnosis they had – people don’t just drop dead in their 30s of organ failure without something causing it, and there’s already plenty of research out there showing the effect ME has on blood flow to the organs, among other things, to lay the blame there. Unfortunately, most coroners know nothing about ME, so why would they write it as the cause of death? Not to mention most people don’t end up getting the thorough autopsy every ME patient should have – families usually have to push for it (and pay for it) in order for that to happen. It’s all very sad. Sad that people are dying of this disease, and sad that their deaths are going to waste, being ignored by the medical community at large. I hope this changes someday soon… Thanks for stopping by and sharing your perspective on this!
I’ve just found your blog and it seems excellent. Thanks for writing this. I find it frightening as I have ME that has progressed through childhood to the age I am now – 38 – and I have been bedbound for about 10 years and continue to get worse. But it’s also something I mustn’t ignore.
May I ask you a couple of questions (which you don’t have to answer)? Firstly, where in the world do you live, and secondly, what is happening with you medically which means that your doctors know that you’re dying? I’m obviously just curious.
My heart goes out to you.
Hi Amy. I’m so sorry to hear you’ve been bedbound with ME for so long. ME is such a cruel illness. My heart breaks for everyone struggling with it, but especially others who are bedbound for so long. I appreciate you taking the time and effort to read and comment on my post. I always enjoy hearing from others who understand life with this disease.
To answer your questions, I live in the United States (in the Midwest). As far as the dying bit, the answer would take more energy than I have to write out today, but basically my doctors looked at a combination of the damage that’s already been done and is evident in me through tests and symptoms, plus their knowledge of the disease, plus my history, and together it painted a clear enough picture for them to see what is happening. Two separate doctors actually had to agree on this in order for me to be admitted to hospice care, and they have to re-evaluate it every so often for insurance/legal purposes. They do not know exactly how long I have. They don’t have as much experience with this disease as other terminal illnesses, so it’s difficult to predict the time line. They both agree it could happen within six months (the standard to receive hospice care), but it could also be longer. Honestly, I pray it’s not too much longer, because eventually I may run the risk of losing care. ME is a tricky beast to tame, for sure…
Thanks again for your comments! I hope you have the best week possible.
This is such a well-written and helpful article. I am so tired of people (medical professionals especially) telling me, ‘everyone gets better from this’. It’s just not true. It’s much better to know the truth, even if that truth is less positive. Otherwise you end up thinking, ‘why am I the only one who is not getting better?’
Tanya – That’s so true! Not only are people left wondering why they’re not getting better, but often the doctors themselves, who believe their own lies, begin to blame their patients for not responding to treatment. It’s a bad situation all around when people are misinformed or choosing to ignore the facts. Thanks for adding that point in your comment!
I totally agree with what you have written here! ME can be fatal. I have had this disease since a very severe bout of influenza in 1995. I am now 57. On 31st August 2013 I suffered a heart attack. Thankfully it was not fatal, and I was put on bucket-loads of medication, after they found I had one artery blocked about 60%. Less than two weeks later I was getting more heart pains, so was re-hospitalised. This time the angiogram showed the blockage at about 80% so a stent was put into my Left Anterior Descending artery. All my other arteries were fine. I was told by two cardiologist, and many of the nurses, that if they saw me in the street they would NEVER think I would be a heart attack candidate. There is no history of heart disease in my family, I eat a healthy diet, cholesterol was not too bad, don’t smoke, etc. etc. The only thing I could be accused of would be not getting enough exercise, but who with ME does? I was told I was just unlucky. I am convinced this heart disease was brought on by the ME. Continual inflammation and oxidisation in the body MUST have an effect! I fear I will die earlier than I would have had I not got this disease. A horrible prospect, but one I must face. I truly feel for all of you out there who are battling life with ME, and send my very best wishes to you. And especially to the writer of this blog.
Hello Jacquie! I’m so very sorry to hear about your heart condition. I, too, have some heart issues, although nothing as severe as yours. I definitely agree with you that it sounds like the ME is what led to your heart problems. Especially considering your history and what we know about how ME affects the heart. I am glad you were able to get your heart issues addressed, even if the doctors aren’t admitting what caused them. Hopefully their awareness and treatment of the issue will help prevent future heart problems from developing. I wish you the very best… Thanks for the comment!
Hi I have had ME for 17yrs now & over that time my health has deteriorated so bad that I am now in a wheelchair….I have said for years about ME being similar to MS…I have a nephew with ms he found out 3 years ago. …at first they told him it was ME….I am now having breathing problems it is very hard to breath….the doctor said it was the CFS / FIBROMYALGIA causing it but I know my body & know its not ….I started having Black Outs over the Years….Doctor put it Down to Fatigue. …last year my body stated shaking very bad & I could not control it ….I use to always shake on the inside of my body if I tried to do too much. ..but then it started on the out side….in December 13.. I started waking up in the mornings but I was paralysed and I could not move any part of my body. ..or speak or see I could hear only a little ss I have continues tinnitus & my hearingis becoming worse…I try make low sounds to get attention. ..I have had 8 up to now & each time it has taken my hubby & daughter 3 to 4 hours to bring be around. …I have had a brain scan and go back to see Neurologist in March…thank you for sharing your post I found it very interesting. ..as I feel like my body has been giving up on me over the years. ..& I have been diagnosed with many other illnesses…I told the neurologist I feel like my brain forgrts to tell my body what it has to do. ….I hope they do more research on ME & doctors start to believe what their patients with ME ate telling them…my ME Is server now & I cannot do much for myself I rely on my daughter & Grandaughter who our my carer’s as my hubby has just become wheelchair bound. …we are both only 57 & this is not how we planed our life to be…we have always worked from being 14 …..always were fit & healthy & even ran our own business for 7 years before I became ill..
I hope funds are pumped in to more research of ME as we need answers now Thank you for your post {{{{hugs}}}}
Hi Philomena! Welcome to my blog! Unfortunately, the experiences you’ve shared are all too common among ME patients. I, too, was initially misdiagnosed with Fibromyalgia. Many ME patients are. In reality, I believe in most of these cases it is the ME alone causing the pain. ME is known to cause soreness in the trigger points typically used to diagnose Fibromyalgia, plus other locations. And it absolutely causes muscle pain – so much so it’s in the name of the disease itself (Myalgic = muscle pain)!
ME also commonly causes the other symptoms you mentioned: difficulty breathing, paralysis (especially upon awakening, but also at other times), blackouts (sometimes due to sudden drops in sugar/hypoglycemia), shaking (my entire body shakes, jerks, seizes, and trembles horrendously bad when I overexert – it tends to scare people watching and makes it nearly impossible to talk as my head and jaw muscles are also involved), tinnitus, etc. Most people do not realize the severity of symptoms that go along with ME, and the fact that “fatigue” is nowhere near being our worst or most defining symptom.
I am glad you were able to get a brain scan. There are several abnormalities that frequently show up in the brain scans of ME patients. Hopefully your doctor will see them and they will explain some of your symptoms. Thank you for commenting. I wish you the best from here on out… Hugs back at ya! 🙂
Do you have a link to Dr. Dowsett’s comment about M.E. being fatal?
I don’t doubt the statement’s veracity, as I’ve had this illness for 27 years and have deteriorated at a slow but steady pace, with many systems being affected.
Hello, Kathryn! I originally got the quote from a page on the hfme.org website (a terrific and well-documented source of information!), but wanted to find a more direct source for you. After some searching, I found a paper written by Dr. Dowsett herself which states this statistic. You can read it online at http://www.25megroup.org/infomedical_dow_Mobility_problems_in_ME.html (you can also download it as the original document she wrote from that same page). I also found another page using this same information at http://www.investinme.org/Article-416%20Twenty-five%20years%20of%20the%20Barts%20Fatigue%20Service.htm. I found lots of other places using this same quote, but these were the most original. Hope that helps!
Thank you so much! I want to post that on my FB timeline, but I do like original quotes when possible.
On your blog topic: give yourself a pat on the back and a soft hug for raising awareness and being a light for others.
No problem, and thank you!
Reblogged this on kraftycatcreations and commented:
This is a call to the medical community and others who deny ME is a real disease.
See the Memorial List kept by the National CFIDS Foundation at http://www.ncf-net.org. There was a medical journal article on it years ago.
Hi Victoria – Thank you for sharing that link. One reason I didn’t share it is that it includes people diagnosed with “CFS” which is a totally different thing than ME (as my recent post explains). A better list is the one at http://www.hfme.org/mememoriallist.htm. That site includes a separate list for those unfortunate enough to have died with a CFS misdiagnosis, who in the vast majority of cases did not have ME, but who deserve to be remembered as well. Thanks again for stopping by!
I totally agree with you. ME is misdiagnosed so often. I help organise a Support Group and it’s amazing how many people think they have ME when they don’t. Also, what you said about telling people is good but I’ve found that most people just don’t want to know, aren’t interested or don’t believe me so I’ve stopped trying to publicise the illness and educate people. I have to live with it on a daily basis but am not good at telling people about my illness and how bad it is and can be for others. Maybe I’m just battle-fatigued!
Hi Karen – Thanks for the comment! You’re right about how many people believe they have ME when really, they have something completely different. It must be difficult to keep the support group down to people who truly have ME. Kudos to you for helping organize such an important group!
As for educating others, I totally get what you’re saying. We all have severely limited energy, and sometimes we have to choose to spend it on, say, brushing our teeth, rather than educating someone. This especially applies if we feel like the person doesn’t *really* want to know and won’t really listen to what we say. I don’t always educate others, either. Sometimes I’m just too tired. Sometimes it just doesn’t feel worth it. Thankfully, I have several people in my life who are more than willing to answer questions for me, so sometimes I’ll refer others to them, knowing if they really want to know they’ll follow through with my friends, and if not, it’s no huge loss. Don’t feel bad for the times you choose not to educate. We all make decisions on energy expenditure one moment at a time. Hugs…
Unfortunately, I don’t keep the group just for those with ME as they’re the ones who are often too ill to come along! We have Fibromylgia sufferers and those with Medically Unexplained Symptoms but none are as bad as ME sufferers.
I wish I had friends who understood – none do – so I tend to keep myself to myself. It robs you of confidence along with physical energy to cope.
Thank you for your blog.
Karen
That makes sense. It would be difficult to run an in-person ME group due to the nature of the illness itself. I’m glad your group is able to offer support to people who have at least a few similar symptoms, even if they’re nowhere as severe as the average ME patient’s. I really hope you’re able to find some friends who understand. I only have one local friend who truly gets it, but I have many online friends. The support I receive from all of them makes such a difference in my life! Everyone deserves friends like that. Especially people suffering from the level of isolation ME tends to bring. Hugs!
I have ME I had a virus last month my temp was 39 neuropathy every where chest hugs I really thought I was dying still do but slowly people look at me and say but you look good you must be getting better I am far from better my walking has deacreced my balance is bad doctors need to really get a grasp on this disease 4 years I have been inflicted with ME and the attacks are getting worse no remitt for 6 months I feel sorry that you are dying and the way I think if I die or when I die hope they tell it like it is ME killed me x
Carol – I’m sorry to hear you’re so ill. I hope those around you will begin to understand your illness better. It’s difficult when no one understands. Hang in there!
Reblogged this on Linda Williams Stirling and commented:
If you or a loved one has ever been touched by a life-threatening illness, you understand the fear, the grief, the hope, and finally the acceptance that goes along with it. But what if you had a disease that doctors and studies and articles claimed was NOT life-threatening, and yet you are dying from it? The truth is, ME ( Myalgic Encephalomyelitis), often referred to by the innocuous name of CFS, is very hard on the body and many people do die from it. We need more and better research, plus actual treatments, not denial. This blog post, from a woman I greatly respect, provides an honest look at this issue. She can speak with authority on the subject as she is a woman with end-stage ME. We need to pay attention.
Thank you and Take Care,
Linda Williams Stirling
My doctor told me it will kill me eventually
I always thought I had CFS, but it keeps getting worse and I became convinced I would die from it some years ago. I was puzzled how someone could die from CF. ME might hold some answers for me.
ME could definitely hold some answers for you. Even if you don’t have ME, there is no way to know with just a CFS diagnosis if what you have can be fatal, since CFS is not one condition, but an umbrella term for every single condition that causes fatigue that a doctor hasn’t taken the time to diagnose in his/her patients. There have even been people with cancer, AIDS, and other conditions who were initially misdiagnosed with CFS. I strongly believe every diagnosis of CFS is a misdiagnosis. It was never intended to be viewed by doctors or patients as a single illness entity, but has become that way due to the laziness of doctors and pressure from insurance companies to write off everyone complaining of fatigue as having CFS, rather than pay for expensive tests needed to find the true cause of each person’s symptoms. Most of the conditions people misdiagnosed with CFS have are treatable. Some can be fatal without treatment, some can be fatal even with treatment. And of course some aren’t fatal at all, but often have treatments available to greatly improve quality of life.
I sincerely hope you are able to finally get some real answers. You will have to push your doctors to keep looking. We all do. That’s unfortunately the nature of the medical industry right now. But nothing is as important as your health, and it is essential that you refuse to accept the non-answer of CFS for your very real symptoms. Best of luck to you as you continue pursuing your answers! Hang in there!
I’m still listing fatigue as primary symptom. This seems to partially match M.E.
But perhaps importantly, no low grade fever, headaches, other viral type symptoms.
Moderate to severe chronic fatigue, constant since 1983
Getting worse
Extreme fatigue for several days after activity
Mostly housebound
Peripheral Neuropathy, getting worse
Stinging feet and legs, sometimes muscle weakness, getting worse
Heart arrhythmias, (mitral valve, PVCs)
Insomnia, since 1998
Sleep apnea, since 2006
Bradycardia
Low thyroid
Severe constipation
Gastritis
Hypoglycemia (low 44)
Shortness of breath
Dry mouth, eyes
Difficulty remembering words, names
Tinnitus
Food allergies, since 1970,
Celiac disease, since 1977
Earaches if I get ANY water in ears
Can’t tolerate hot sun, get heatstroke
Can’t tolerate cold, can’t warm up
Somewhat sensitive to bright light
Difficulty reading, concentrating
Never get a temperature when I’m sick, even with severe flu
Poor appetite, poor digestion
Hair loss, body hair loss
some mood swings
UTI’s, incontinence
But I do feel like I’m going to die!
Obviously it’s not fun.
At this point I can’t discount CFIDS.
Is this auto immune or viral?
ME researchers would fare well in studying autopsies of deceased ME patients. I wish we could set up a data bank for this. I would gladly donate.