Welcome to Lives Interrupted – a project by Health Rising designed to make clear on a personal level, the economic and other costs of having diseases like chronic fatigue syndrome (ME/CFS), fibromyalgia, postural orthostatic tachycardia syndrome (POTS), and long COVID.
The project was borne out of the recognition that ME/CFS and its sister diseases still get little respect. For decades, both ME/CFS and fibromyalgia have ranked, for instance, among the poorest funded diseases at the National Institutes of Health (NIH). Even the appearance of what appears to be millions of long COVID patients in the U.S. has failed to get the National Institutes of Health (NIH) to provide more support for ME/CFS
Hence the “Lives Interrupted” program’s attempt to clearly demonstrate how dramatically and often irrevocably the lives of formerly healthy, productive people from all walks of life have been impacted by these diseases.
The program contrasts your income, occupation, job responsibilities, functionality, etc. when you first became ill with the present date. It calculates, using an inflation index, a rough estimate of what we believe is probably a person’s minimum loss of income due to these diseases over time. Questions designed to illuminate other costs as well as the option to tell your story are also included.
Lives Interrupted is also the first part of our “Big Map” project and provides the opportunity to add your location and put yourself on the map. You can include your complete address or simply use the city you live in as your address. (You must add something). The project is currently open to people in the U.S. the U.K., Canada, Australia
You can use your real name or make up a name. The map also makes it possible for you to communicate with others on the map via a private messaging system included in our Forum package. We need your email address in order to knock out spammers and bots and if we need to get in touch with you, but all communications between you and the other members of the project will take place using this system; i.e. only Health Rising will have access to your email address. (You can turn off the private messaging system if you wish.)
Add Your Story
We hope you will be willing to add your particular story to the Lives Interrupted project. In order to do that you must register in the Health Rising Forums in order to use their private messaging service.
Registering in the Health Rising Forums
Go to this page and click on the Register tab on the right-hand side of the main menu bar. When you register you’ll get a confirmation email. Please respond to that and then
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- View the Lives Interrupted stories here
- Add Your Story here.
- Your account – you can find your account here
This is the first time we’re letting our baby out of the box and we’re sure changes are in store. We request that you provide your feedback on ways we can make this project more impactful.
Cort Johnson conceived this project and Stavya Grover created it on the web and greatly assisted with the calculations and all aspects of it. Thanks also to Art Mirin, Wired, and Lenny Jason for their suggestions.
No one talks about people who have suffered continuous losses over twenty five years of living with this disease
I am alive because I have fought continuously for help, even though there is no reason for Hope or relief in my lifetime
I do it because my kids have already suffered and been harmed enough , and because there are occasional moments when life is worthwhile
Who cares ? A handful of still young cripples and a government that actively threatens the children, the poor and sick, the very air we breathe
I may be naive but I actually believe that if the politicians and bureaucrats really “got” ME/CFS – if they really understood the devastation it can cause – they would find ways to fund it. (I think that’s what happened to Francis Collins) They would have to – or they would have trouble sleeping at night…
Thank you for all of your work. I was diagnosed in 2015 with FM (after 4 years of alleged malingering) and about to be diagnosed with ME/CFS after research and self-advocacy. I hail from a family of doctors. I believe doctors suspected all along there is a viral and inflammatory component to these serious illnesses, but since testing and treatment protocols weren’t written up, they couldn’t do much. I’m a lawyer (what’s left of me) and liability is a huge issue. As long as they’re complying with the standard of care, few doctors dare overreach. I’m encouraged the next generation of approved medications will have anti-inflammantory and anti-viral properties. Given the toxicity of our environment and unprecedented stress of our times, it makes sense FM and ME/CFS and other chronic illnesses are reaching epidemic levels.
After years of CFS symptoms and no real diagnosis given when seeing doctors in Florida, my daughter, now in Washington D.C., has gotten diagnoses of narcolepsy, cataplexy, sleep apnea, POTS, and Ehler Danlos syndrome(genetic). She also had a prolonged case of “Mono” many years ago that her cardiologist says has been the probable cause of arhythmias.
CFS sufferers need to be able to see doctors in a metropolitan area who are good diagnosticians.
Work related health insurance companies do not want to consider CFS anything other than a “malingerer’s” malady as anyone who has applied for ERISA disability knows.
Insurance companies pay doctors in their employ to malign any illness that is not visible and has a cost in terms of payouts to those no longer able to work. Politicians are lobbied by these same insurance companies.
With genetic and lab tests becoming more sophisticated I believe this will change in the future. Symptoms that can be proven by testing for POTS (fainting or near fainting) and Ehler Danlos (pain, weakness, trouble breathing) will be helpful for CFS patients to validate their symptoms.
This would be difficult for me to answer as I have probably had moderate ME since hepatitis at the age of 7. I know I can recognise symptoms, looking back, in my high school years. I managed to work until I was 53. Yes, there has been a drop in income but not significantly.
Where I see the big problem is in value added to my life. I’m single. During my teenage and early adult years I would be sitting at home on a Saturday night rather than going out meeting people. Because of no diagnosis I put a lot of effort into ‘fixing’ what was wrong with me (diagnosed as emotional), and this effort was ‘work’ and made me more tired. I’m sure I alienated friends back then with my angst. I mourn the loss of a life partner, children, grandchildren. Of course, I can’t know for sure that I would have had them without this illness, but I know I didn’t do the right things to find a partner at the right stage of my life.
Loss of a potential partner Diane. It makes perfect sense. You didn’t have the energy to date – and you didn’t get help from the medical community with understanding what you had….That ultimately lead to you experiencing some alienation from your peers.
Given your sense of loss over it I fully expect you would have had a partner and a family.
I was afraid to date because I was too wiped out plus I would have to explain that I had both ME/CFS and MCS (try explaining that!). I did it occasionally but then just stopped for decades…
I am 54 and divorced seven years. Just diagnosed with Sjogrens. Have dated and my health has not been an issue until recently, amazingly. I met a wonderful guy last spring. He has been very worried about my poor health and financial problems. It looks like that is going to cost me the relationship. I really feel hopeless about finding a partner. I’m not desperate, but would love to be in a healthy relationship.
This is me too, Diane. I’m 38, had ME since 33. Lost a relationship (mind you, I think that was on the way out anyway) and not been able to date since. Everyone says ‘You’re so lovely, you’ll find someone’. But really, who wants to willingly sign up for this? I desperately wanted children (used to be a Primary School Teacher, I love kids that much). I’d made my mind up that by a certain age, if I still didn’t have a partner, I’d go through AI so I didn’t miss out on my window of opportunity to have kids. Then…ME. Now, I’m almost 5 years of swinging between moderate to moderate-severe ME + POTS. I struggle to look after myself with basics like sleep, shopping, cooking (or should I say ‘heating up food’). If I struggle to look after myself, there’s no way I could look after a little one. I’m too scared to take on a dog, let alone a baby. Love doesn’t feed, clothe and wash them (ah, the thought of lactic acid pain in trying to wash them!!!). So yes, I think I’ve pretty much resigned myself to the fact that having children has been taken away from me by ME. And maybe a partner too.
“Cut into” savings/retirement is great, but I would also like to see “emptied” or “depleted” savings/retirement/401k/etc. with tax penalties. I wish we just “Cut into” our future, LOL, that would mean there was something left. 🙂
Emptied / depleted savings/retirement accounts…That’s an eye-catcher.
For me – almost 40 years of ME/CFS has left me with no retirement accounts at all; No 401K’s, no stock, nothing put away… A bit of social security to look forward to plus whatever my father will leave. A huge contrast to all my siblings who own houses or businesses, have investments, have been planning for retirement…It’s really quite a loss!
I know would have started putting away money early as well.I think I would have built up that bank pretty good….
Yep, my husband and I were good little squirrels. It’s all gone now. He’s going to be bagging groceries in his eighties, glob willing. Hopefully I’ll be well enough by then to join him! Always hope… always.
So what do we do Cort, just answer the sample questions and email you?
Please either leave ideas here or email me at email@example.com or use the contact form – whatever you feel comfortable with.
Nicely done and with a little humor too 🙂
Consider “have or have ever had” to rely on outside support ie: I needed groceries delivered and someone to do my cooking and cleaning for a period of time, though I no longer need that; it would still count as being due to my ME/CFS however
Also what about cost of care? I’ve spent thousands of dollars a year outside of health insurance because none of it has been covered. For 20 years so far. Other disease shave costs too – but it’s worth considering.
Might have considered having children had I had energy even if I had a chronic illness of some (other) kind.
Prior to becoming severely damaged by ME/CFS, I had my own business,I a private practice in psychology. I specialized in bereavement, child sexual abuse and victims of closed head injury. My income averaged about 10 thousand a month. I currently live on social security disability.
To get treatment, I flew from my home city to where I could be in a clinical trial. I made the round trip twice a week. After two and a half years of this grueling schedule I had to relocate. We sold our home as the trips and the treatments drained our savings and currently is costing a significant amount of our monthly income. My spouse retired early and is my full time caregiver. We rely on our son for extra expenses. Our budget does not allow for much other than living expenses. I’m now house bound, not even able to attend Church. I can’t live by myself. I lost my independence, home, friendships, church community and can no longer drive. Most awful to me was having to move away from our children and grand children. This year I’m not able to spend the holidays with them.
Honestly Lynda – I can probably get almost everything needed from your story.
Loss of a substantial income
Had to relocate to be near doctor
Have to rely on outside family for financial support (I know that hurts!)
Lost ability to drive
Lost ability to care for yourself
Unable to be near family
I feel kind of sorry for bringing all this up for you! It’s a tremendous amount.
I’m always so grateful for any opportunity to help our community.
I’m home bound too, I really only go out for doctors appointments. I was really missing the loss of being able to go to church, and the community of the church family. But this past summer I discovered a church that broadcasts its services online. A lot of churches record their services and post them online but this one broadcasts live and has a live chat room where you can get to know the other people who “attend” as well as the pastor, and have private chats where you can pray with one of the chat hosts. The church happens to be located fairly close to me, but we have regular attendees from all across the world! I’ve gotten really involved over the last 6 months and have met some wonderful new friends. It has made a tremendously positive difference in my life.
I’m not sure what your religious beliefs are Lynda but it would be a joy to have you join us in one of our services. I attend Fairhaven Church, which is a member of the Christian Missionary Alliance. Go to Fairhaven.churchonline.org to see service times and learn more about the church’s beliefs. And if this church isn’t right for you, you may be able to find a similar form of worship by googling “(name of your religion/denomination) online church services”. Sending love and prayers!
Hi all, I am the parent of a girl who became ill at 13.
My intention had been to resume employment when she commenced year 8 school. That was sadly the year she became ill. (Nine years ago!)
I spent 5 years of her schooling driving her to and from the school a few times a day to attend core subject lessons so she could maintain contact with peers and complete her schooling. AND SLEEP BETWEEN LESSONS!
She has lost a large degree of independence but she is now semi-functional, doing part time University….but that is all she can cope with. No social life really. I cannot see her in full time employment at this stage!
Then of course is the financial side of practitioners, supplements etc. which you all know about.
On a more personal note….my husband does not want to retire as I cannot see it as reasonable to leave my daughter alone for weeks on end while we go off travelling . So…He continues to travel for work. I am stuck as carer, housekeeper, etc.
so, it has affected all of us.
Forgive me for poor interpretation regarding this excellent and necessary data gathering, but I was wondering if you could clarify, if, with suitable funding in place, the questions asked of what we have lost will be something we can partake in.
Is this a project that could potentially widen out so we, readers and ME/CFS sufferers can get to answer the Basic Questions and Possible Additions listed at the end of the piece?
If suggestions are being asked regarding possible additional questions might I propose the loss of love and for women the loss of potentially ever bearing children.
By love, I specifically mean that for those struck by this illness in childhood, teens, and twenties in particular, but at any age whilst they were single, and making the assumption that a majority of people want to find a loving life partner, if ME/CFS took you out of life completely where one is housebound and bedridden back living with a parent or parents/guardians and never able to see friends again let alone meet new people to potentially form romantic and lifetime partnerships with, one loses the potential for what almost every song ever written is about: a loving romantic relationship.
Likewise, for single women who were struck down at any age pre-menopause who always wanted children – an illness that robs you of the potential to ever be a mother by dint of how many decades it can last. The theft of the potential to become a mother is one incalculable loss.
(In terms of the losses of this illness, for me it has been everything that makes life life. I reverence the sanctity of life so much that I do not insult its sanctity by calling what I have life – it is an existence – an existence of 24/7 endurance of frequent agonising pain and suffering).
I agree with Lucy and as far as income, I had to withdraw from college two times because of illness, so there was the potential for making a six figure income. For people who were diagnosed at an early age, it’s hard to tell what kind of impact they could have had. Going to vocational rehab was useless because you have to be able to SHOW UP to work every day. I have had guys dump me because they didn’t want to be ‘tied down’ to someone with a little understood illness and my social life has suffered because many people lose patience with someone who has to often cancel an outing.
I do have some other health problems besides this, but CFS and Fibromyalgia just decimates your life.
People who never really entered the workforce in a meaningful way (I am one of them) pose different problems for this survey. I plan to put questions regarding ability to go to University or complete school or to maximize employment opportunities.
Passed LSAT in 5th percentile. 2 years in maintained grades to keep scholarship. 1/2 way to graduation got FMS/CFS with severe brain fog & terrible pains. Lost my future, lost being accountant/tax preparer finally got disability & recently family grocery help. Still tears me apart because I agree “a brain is a terrible thing to waste” & instead of being a helper I’m needy. Ps
Started law school at age 50 – after my kids grown & after mostly raising 1st grandchild
What about the daunting task of putting children through college when you can no longer work or work at a fraction of before. The effect on and sufferings of our children, (like loosing the ability to just “live” with this disease) is impossible to put a number to. I see it in their faces every time they ever so quietly come into the bedroom to say hello after returning from high school, ask if friends can come over when they well know the answer is “sorry, not today”, or when they put me to bed at 7:30 pm every night because I simply cannot keep my blazing hot and burning eyes open another second. Our children loose their parent, our husbands loose their spouse – and on and on. My hope is that they somehow learn to be more compassionate and generous to others in their life instead of turning resentful and angry…fingers crossed.
For me it’s still having that zest for life but being unable to do anything about it. Wanting to travel, exercise, go out after 3pm, golf, visit, shovel snow, anything but just lie in bed. That and also the feeling I am watching the world through a window, this feeling like I don’t belong on this very active planet.
I feel like this applies to me, yet I technically never lost anything because I never had it. I think I developed ME/CFS in 6th grade but it didn’t really start hindering things until high school/college. I have been on disability now for about 15 years (which has been difficult having to prove my illness). I was never able to even finish freshman year of college, and have literally only had one job in my life (cashier). I had many ambitions, including playing in a band. All of this is devastating to me. But at this point in my life, I am afraid I will not be better enough to ever have kids. I never dreamed, 10, or even 20 years ago that I would not only want kids but become too old to even be able to have them. I’m 39, but don’t feel confident in a cure anytime soon.
Cort, thank you for your service to this community. I agree with others, HR has been a lifeline to me many times. Things that ME/CFS and FMS have cost me: well goodness, what haven’t they cost? They reach into every crevice of a life and erode…everything. Every piece of my identity has been affected. And it’s not just what is lost, it’s also what is missed out on – life.
I lost (and cannot now start) serious relationships because I could not be a complete partner. I became ill in my 30s and lost the chance to have a baby and the family that I dreamt of. I lost feeling vital and vibrant in my body. I lost rock climbing, swimming, hiking, yoga. Dancing. I lost travel. Community service work. I’ve lost friendships that I couldn’t maintain and missed plenty of opportunities to make new friends since I cannot reliably stay in contact. I lost my 40s and now people are telling me I’m just old (at 50) and should get used to feeling this way. I lost reading – reading!
And like so many others, I lost my career that I thrived in for 17 years before becoming ill and stayed in for 13 years even with serious illness. So I have no income, no likelihood of working again, no way to build retirement. I lost respect of colleagues (and a CEO) who didn’t understand. I’ve lost joy and hope and enthusiasm and sense of possibility. I lost God.
Thank you for speaking for a group whose voice is so tough to raise.
You didn’t lose God – that is an impossibility until the moment you’re standing in front of Him at Judgment,
If anything, God is heartsick for your saying that, but He died for you – suffered indescribably for you – and it’s never too late?✝️
you may feel you lost God, but he has never lost you. He suffered for us. Give your suffering to Him.
I think I am seeing from the comments is that the loss of income, opportunity, and savings are meaningless to most of the people here who really just want a chance to live even a shadow of a normal existence. However, how do you make someone understand who has never experienced it. But, if we have to quantify it, then we need to also convey the missed opportunities that a fully functional person might enjoy. I know I have struggled working for the last 12 years and I have been lucky that I have been able to work from bed at times, but even that is exhausting. What might I or others who have gotten sick accomplished if we never lost our energy.
Thanks for doing this. This is much needed and brings an urgency to solving the mystery of this illness and bringing us a cure.
In addition to the above input, cumulative cost out of pocket for medical care, cutrent monthly cost for medical care, plus cumulative and current monthly cost for other assistance.
Current insurance – Medicare, Medicaid, employer, spouse’s or parents employer, Obama exchange. Cost per month for insurance.
On employer long term disability, SSDI, social Security, or tried but denied.
Pre illness annual income. Current annual income. Currently working full time, part time, not at all at pre-illness or reduced profession due to illness.
Age. Number of years ill.
I think that the general idea is excellent, but there is so very much, much more that many of us have lost that, honestly, the questions don’t even begin to give the full picture. Also, many were not old enough to be working, or were still in college so they were working low-paying jobs, but not their future careers….so earning potential should be a part of it when you are talking about that aspect….but this illness is so all-encompassing, that there is not a part of life that isn’t affected, and the losses for many of us are ongoing, as some just keep getting sicker.
My initial response to “what have you lost?” is pretty much everything that makes life worth living, except my faith, but I am so sick & exhausted rt now that I can’t even begin to do justice to all I’d like to say. I will mention a few things other than just the financial ones, in case I don’t have the energy or cognitive ability to get back to it. Cognitive ability is one, the ability to make plans & actually expect our bodies & brains will have the ability to carry them out is another, as are: the possibility of a career which is about more than just the financial loss, the possibility of a spouse & kids (this was the number one thing I always wanted aside from my faith & this illness took that possibility away), the ability to attend church, to participate in sports, hobbies, entertainment, other things we used to enjoy, being able to regularly leave the home, having any kind of social life or human connections aside from online, having a sense of purpose, having anything to look forward to other than trying to survive another day, etc, etc, etc….heck simply waking up actually feeling rested & not in pain is another.
Oh, also when you talk about financial aspects of it, not only are so many of the things we need to do, supplements we take, & the specialists we need to see not covered by insurance (if we can even find them in the first place!), but for those who are on disability, many are not even meeting their most basic needs, and the so-called cost of living increases are not remotely close to what our real cost of living increases amount to….
..and for those who had to go on disability young, they not only did not have a chance to earn enough to save much (if anything), but they have a lot of yrs in which the gap between what their disability pays & the true costs of living are goign to keep increasing before they die. There is so much concern for the elderly on fixed incomes (& rightfully so), but at least they have had yrs to earn & save & they don’t have a lot of yrs to manage to get by on that fixed income. For many who became disabled young, the situation is way more dire & no one cares.
My disability already does not even cover my rent (& I live in one of the least expensive places around & have had to deal with leaking & mold issues as a result). I am fortunate in that my dad is helping some with my rent, but I still pay the bulk of it, & don’t have enough left to cover all my basic needs, let alone emergencies. And, he is 70 yrs old, so he’s not goign to be able to keep helping a lot longer. I am 45, so how exactly am I supposed to even have a home once my dad is unable to help? (I’ve looked into applying for the various section 8 types of assistance, but in the 13 1/2 yrs I have been sick, they have not even been adding names to the waiting list here.)
In the last 3 yrs my rent has gone up $120 a month, yet over those three yrs the total “cost of living increases” I have received are $17. (& other living expenses, like groceries, electricity, healthcare, costs for contact lenses – I have extremely poor vision so I can’t get by w/o them, etc, have also gone up). The stress of the very real future possibility of homelessness while so sick, & of also knowing that where I am currently living, I could very likely wind up having more leaking & mold because they refuse to properly fix the roof are HUGE HUGE stresses (I’ve already been thru that w/ leaking & mold & the associated affects on my health & the major financial impact of all the things that I own that were destroyed twice now.) Yes, that is indirectly related to this illness, but if I were healthy & working I would be living somewhere much better.
I hope that this is at least mostly coherent, because I am incredibly brain fogged right now & sick on top of sick.
I’m very soon heading for loss of my home due to inability to pay my mortgage.
Loss of my business as a successful salesman
Loss of my hobby renovating my house, so it will now never be finished (i.e. a half finished house is a devalued house, meaning I’ll probably end up still owing the bank after they take it)
Loss of the ability to have children when I realised I was too sick to look after them. I had a vasectomy and had the semen stored for a rainy day however the cost of storage has doubled so they will soon be destroyed.
I also lost 2 previous partners due to explaining the vasectomy and my inability to raise kids being “a deal breaker”
Just as bad the illness has worsened to reduce the ability to have good sex, meaning the loss of another partner.
Also loss of the ability to write a film script I had started, but now can’t concentrate on.
Loss of my dignity when hearing a group of friends saying it was all in my head, I argued with them the facts and got a reply “well it’s half in your head”
Loss of my dream to travel overseas
Loss of the ability to simply keep my garden from over growing, it now looks like a jungle
Loss of the ability to afford keep cool in summer and warm in winter.
Loss of freedom, being house bound is actually also a judicial punishment used here in New Zealand called ‘Home Detention’ for lower risk offenders.
Loss of being invited to events by friends
Loss of the ability to have enough energy to cook at times meaning those days I either go hungry or have to eat straight from the can (that is quite disheartening)
I could write more but now need to rest. The only good thing is I haven’t got depression, just the odd bout of despair from this vile cruel illness.
Oh I’ve gained an anger at it all, especially at those that mock and leave us to rot
While the temptation is to quantitatively capture the effects of our illness, please don’t forget the qualitative aspects. A story goes a long way in capturing the hearts and minds of those who control the purse strings in federal agencies.
After 25 years, I am patiently waiting (and hoping, my only hope) to die. What I lost? My job (vice-president corporate job), my hobbies (hiking, camping, softball), my network of friends, the city in which I lived for 47 years (can’t afford it), my home (had to sell and buy somewhere dirt cheap), my intellect (brain fog), my savings, my self-respect. What my community lost: a sports coach, political activist, neighborhood organizer, participant in many social causes and TAXPAYER.
Also, there are the many, many everyday losses of things that most people take for granted….things like: being able to take a shower without being completely wiped out; being able to stand up for awhile without passing out; being able to talk on the phone; being able to get groceries, come home, & put them away all w/o resting in between; or being able to prep for, cook a meal, & clean up after again w/o resting in between….or for that matter for many of us being able to actually eat a meal at all is impossible as we have so many GI issues most foods are off limits (or some are even on feeding tubes)…being able to go somewhere without the fear of being stranded because we have no physical ability to make it back home safely…and so on…..the list of just these types of losses is lengthy, to say the least.
I’m not sure if it’s possible to fully describe all the losses patients with ME experience. It would be a flood of information. I think most of us would agree on the financial losses. I got ME at 14, so I never “lost” an income, but I did lose the ability to have one, and all the normal things in life an income brings. There’s also the costs, meds, doctors, carers, etc, that we would all be familiar with.
There are the social losses, which again we all know too well. Loss of friends, and interpersonal contact. I’m married to a super guy who has stuck with me through thick and thin. But I’m one the lucky few.
Fortunately I was able to have children, but the loss of my ability to parent them is huge. They will be both getting married soon, and there’s a good chance I won’t be able to attend their weddings. I can add that to the list of things I haven’t been able to do for them. One parenting loss that sticks out to me is not being able to feed my kids. About eight years ago I was still trying to cook family meals. Often I’d be too sick, and my kids would content themselves with a bowl of rice or fruit. I was too ill to question if they were getting enough to eat. They weren’t. My son was sent to a dietitian with the words “if he doesn’t gain weight, he’s at risk of organ damage”. Another doctor threatened to send my daughter to an anorexia clinic if she didn’t gain weight.
I could go on and on with a list of losses, but I think the greatest loss is the loss of self. The person you used to be is gone. Nobody knows the real me, the person who loved being active, independent, adventurous, a dreamer, a writer, a lover of life. They know the person in bed or a wheelchair. The woman who needs help showering and constant supervision.
I’m thankful you are creating this program, but I don’t think there is any way a program can truly cover all that this disease takes from us. ME is a tornado that rips through our lives and destroys everything it touches. Nothing escapes its devastation.
So true! My husby & I have put off having kids cos of this. I can hardly look after myself, and I can only handle watching my 3-year-old nephew for like half an hour before I need a long rest. I’ve helped my mom look after first my younger siblings (she was a single parent) and then her foster kids, so I know just how much you’ve gotta be “on” for parenting. We’re hoping I’ll improve over time, and that he’ll make enough to hire a caregiver for the kid/housekeeper, & that maybe that’d work. But the thought that I couldn’t be a full-on parent is pretty disappointing.
That’s really tough, Sheila. For a while we thought we wouldn’t be able to have kids. Becoming well enough to do so meant a great deal to me.
I relate to so many of the heartbreaking things everyone has shared, but one thing you said sums up my life since I’ve been sick. My oldest daughter knew me as a vibrant, active, ambitious person. After I got sick I had my second daughter who only knew me as someone with very limited strength, in bed a great deal of the time, and unable to do any but the most urgent activities with long crashes afterwards. It’s just what you said. The person I was is gone. People I’ve met after being sick never got to meet that person. My younger daughter never got to have an active, involved mom.
I’m sorry your young daughter never got to meet that active, involved mum, Julie. I was fortunate I was in remission and fairly high functioning while my kids were young and was able to be involved in a lot of their activities. They were in their early teens when I relapsed. My husband was unwell too, so the kids had to learn a lot for themselves. It’s not a good situation, but good has come from it. They are 23 and 21 now, and are both independent, they’ve learnt to make decisions for themselves and be responsible for their own lives. They are caring, compassionate people too. So that’s a silver lining to my parenting cloud that I hope can be true for you and your daughter too.
I FIRST BECAME VERY ILL AFTER A RESPIRATORY VIRAL ILLNESS WITH MULTIPLE SECONDARY BACTERIAL INFECTIONS THE SPRING OF 1986 .
AT THAT TIME ,I HAD A FULL TIME JOB AND I WORKED AS A MEDICAL TECHNOLOGIST (MT/ASCP )- MICROBIOLOGIST IN A HOSPITAL’S CLINICAL LAB.
AT THAT TIME , I WAS EARNING AROUND $25,OOO / YR .
I NEVER FULLY RECOVERED FROM THAT INITIAL VIRAL INFECTION .
I WOULD DRAG MYSELF INTO WORK AND LEAVE EACH DAY FEELING LIKE I HAD RAN INTO A BRICK WALL OF EXHAUSTION.
I STRUGGLED ALONG FOR A YEAR , VISITING DIFFERENT MEDICAL SPECIALISTS TRYING TO FIND OUT WHY I WAS STILL SICK .
THE SPRING OF 1987 , I WENT TO SEE AN ALLERGIST IN HOPES THAT IF I GOT MY ALLERGIES UNDER CONTROL , MY HEALTH WOULD IMPROVE .
INSTEAD ” THE SHOTS ” PUT ME BACK INTO A FULL VIRAL RELAPSE AND MY HEALTH QUICKLY SPIRALED DOWNHILL.
I WAS COMPLETLY DISABLED BY THE FALL OF 1987 .
MY EMPLOYER COULD NO LONGER OFFER ME ANYMORE FLEXIBILITY IN MY WORK SCHEDULE , MY VACATION / ILLNESS DAYS WERE ALL USED UP AND MY SMALL SAVINGS WERE WIPED OUT .
I HAD 2 OPTIONS , BECOME HOMELESS OR MORE BACK HOME WITH MY PARENTS.
MY LIFE AS A FULLY FUNCTIONAL ADULT WITH A GOOD JOB CAME TO AN END.
IN 1989 , I WAS APPROVED FOR SOCIAL SECURITY DISABILITY .
A VERY HOLLOW VICTORY . I AM NOT CERTAIN ABOUT THE MONTHLY AWARD .
PERHAPS AROUND $12,000 / YR .
THE MOST IMPORTANT THING THAT I LOST WAS “THE POSSIBILITIES” OF
WHAT LIFE COULD HAVE BEEN .
ALL THAT WAS STOLEN FROM ME .
NOW AT 65 , I AM FACING MY “GOLDEN” YEARS WITH LIMITED INCOME .
NO SAVINGS FOR RETIREMENT , AND MEDICAL EXPENSES EXCEEDING MY INCOME .
I CAN NO LONGER AFFORD “TO LIVE ” ….I JUST EXIST.
OTHER THAN MY IMMEDIATE FAMILY , I HAVE NO SOCIAL CONTACTS .
THERE ARE VARIOUS OTHER THOUGHTS THAT I COULD EXPAND ON .
BUT MY BRAIN HAS COME TO THE END OF IT’S FUNCTIONALITY
TO THINK CLEARLY .
I STILL FIND IT APPALLING THAT 30 YEARS LATER , THAT THE VARIOUS DOCTORS I SEE ARE STILL “CLUELESS” ABOUT THE ILLNESS AND HOW TO TREAT IT.
AS I AGE , I AM HAVING OTHER MEDICAL ISSUES BESIDE CFS SYMPTOMS.
INSTEAD OF BEING MET WITH UNDERSTANDING ABOUT MY ILLNESS,
I AM MET WITH ARROGANCE AND IGNORANCE.
MY FEAR OF WHAT HARM THEY MAY DO TO ME IS MORE CONCERNING TO ME THAN THE POTENTIAL OF ANY OTHER ILLNESS DEVELOPING .
“THE END “
You told my story for me, except I got sick in 1989 instead of 1987, and am 59, not 65. But it has decimated all portions of my former life, and now I have to find a way to live on 1/3 of what I did. I challenge those making the decisions to lose 2/3 of their income for 3 decades while not being able to get out of the house. And, where many young people use an inheritance to get into the housing market, my kids will not have that choice. They have already suffered enough growing up with, essentially, no father. If this turns out to be caused by some corporation’s product, I hope there’s a hell of a class action suit. Of course, by then, I’ll probably be dead, so my kids will be ineligible to collect the decades of lost income.
All of these stories break my heart.
I’ll submit mine tomorrow.
Having had ME/CFS for over 20 years and its severity increased over that time, I would have to say filling out these surveys is pretty strenuous for me (it wouldn’t have been, pre-illness).
If somehow some of this could be quantified (pick one, A thru G) would make things simpler.
I would add the most important is the stress that comes with the fear of “how will I manage the rest of my life?” That happened to me when I had to quit working. I have no family support; medical support has been difficult. Not to mention the dating difficulty already mentioned. The financial angle is yet another story. All these factors need to be addressed fully.
I’ve agreed with all everyone mentions, the lack of a real medical path ahead is at the top of what we need I think. I’ve been sick, lost job, bed bound etc for 25 years but how much easier it would have been if a doctor had known what was wrong and what to do about it. The money spent searching for the cure, pills taken, family financial loss need not happen. I see they say they know what to do for HD. Money for research has poured into MS and HD, but not ME/CFS. It just isn’t fair!!
I took a stab at replying to your list of items, by copying them into the Contact form. Hard to give yes now answers! See if it is useful. I marked Category Other. I have no idea how my life and career would have gone had I not been felled by this disease, but I do know what I was doing when I had to stop working after stopping the rest of my life in the early years of the disease.
Hi my life fell apart at age 33 after the birth of my daughter (25 years ago) when I abruptly went down with ME/CFS and Fibromyalgia. I had been running the family manufacturing business and competing in Horse Trials at the weekends which was my passion. My husband left me and I had to sell my horses and exist on social security as all my savings went into buying out the otherhalf of my house otherwise I would have become homeless. I lost many friends and had to rely on family for food etc, as I was housebound. I lost my hobby, my job, my animals, my life as I knew it!
As a mother of a child (now young women) with ME I have not worked for 5 years as I am her carer. My husband has to stick with his job, despite wanting to leave.
Due to the limitations of the NHS/research/treatments we have to pay for expensive therapies, supplements, etc.
Due to government cutbacks and lack of understanding of ME, benefits have been stopped for my daughter.
Your work is much appreciated, Cort.
Thanks for mentioning have to stop working to become a caregiver. I had not thought of that.
Twenty odd years ago I woke one morning when nothing on my body moved. it was similar to paralysis. So twenty yeaars of life drained away, always hoping that tomorow I will become stronger ….. enough to wash up … reach the front door …. small things.
Now I am a little stronger .. but who is that in the mirror ? An older face. Clothes and interests that no longer can happen for me. Twenty odd years vanished and yet my aging did not slow down.
I was eventually diagnosed with CFS/ME after being unwell for over 4 years. All my life I have been very active and had used exercise and activity to rehabilitate after three bouts of depressive illness. I was in a good position to see how differently my body was responding, it was confusing and I just kept trying to up my activity believing I was being lazy and that I needed to toughen up and take responsibility for my health. That didn’t go well and, as you would expect, just increased my symptoms. As I had previously suffered from depression this is the diagnosis and medication I was expected to agree, I knew how different it was so I resisted both diagnosis and medication. Fast forward to 12+ years after CFS/ME diagnosis – my drive was to stay in work, I managed this by dropping several levels of seniority, working part time, having regular Occupational Health reports to support my position, exhausting in itself. I have spent all my savings, lived frugally on a much reduced income, reduced my pension contribution, given up work at 60 by virtue of an inheritance when my mother died, this is now spent and I’m currently housed and have income from my family, waiting for my pensions at 65+ which will help but not be sufficient to live on without continuing support. I have always been a strong independent person, have 46 years recorded work record, bought up 3 children and housed and supported them after my divorce. I live live as fully as I am able taking every window of opportunity, I help to care for a close friend, do volunteer work but also live a very controlled life in order to manage my symptoms, as I live alone I am often lonely. How come I am still made to feel that I am a complainer, a slacker and a hypochondriac?
“Dr. Koroshetz, in 2017 stated that he felt it took an “act of courage” for the head of the NIH, Francis Collins, to stand up publicly for ME/CFS and devote funding for it”
For DECADES the patients, researchers, Congress Critters, even President Obama have been shouting, “Show me the money!”. So how does it take “an act of courage” to do what *everyone* agrees needs to be done?
Exactly WHO is Collins afraid of?
Until that question is asked, and answered, the Policy of No Research will continue indefinitely. I sure hope someone starts asking, and soon…
Actually while the patients have been shouting I don’t believe that Congress, researchers and even President Obama shouted “Show me the money” for decades. Congress is the one with the purse strings – if they had shouted we would have the money. The problem is that they haven’t been shouting. They’ve hardly been paying attention at all until recently.
President Obama did send someone over to check out the situation but there’s no evidence that he made getting more funding a priority or that he did any real shouting…
Only recently has Congress asked the NIH for more money for ME/CFS and it’s probably more like a squeak at this point than a shout. (It’ll be a shout when a lot of Senators and House members sign on.)
The patients have been passionate but its amounted to more of a squeak than a shout as well.Until Emily Taylor showed up we’ve had intermittent email drives but no no overarching strategy. Compared to other major diseases our advocacy efforts have been tiny and how could they not be when we – people who were sick – were trying to advocate for ourselves?
We’ve only had a professional advocate advocating for us for a year or so – something Emily Taylor – the advocate – found astonishing for a disease this size. Emily noted that the last advocacy organization she worked for – which supported autism patients in Los Angeles, as I remember, had as big a budget as our only NATIONAL organization – the SMCI.
So it’s not true that we’ve ever really been able to muster a strong voice or even a moderately strong voice on the Hill or at the NIH. Until Collins stood up and publicly supported this disease our research funding had actually been declining for 15 years. (It had not even kept up with inflation.) We had lost three research centers and were centered in a small office which could provide no funding for us.
That all indicated there was essentially no support for us there, that the NIH considered us a nothing disease akin to a yuppie flu, a psychosomatic illness, a waste-basket illness – what have you. In short there was nobody there speaking for us. The fact that it took a year to get the small amount of funding we did indicated the Institutes are still very reluctant to give us money.
The fact that both Collins and Koroshetz have been very public in their support for ME/CFS and we STILL don’t have much money suggests to me that they are probably quite alone in their support.
Koroshetz believes and I believe that in that environment it did take some courage for Collins to stand up and say this is a real and serious disease. I imagine his peers – his fellow scientists – are in strong disagreement with him.
“I imagine his peers – his fellow scientists – are in strong disagreement with him.”
I think his peers – professional health care providers such as MDs and surgeons – are very afraid of being confronted so badly by their limitations.
Imagine being a surgeon, have the life of ten people a day in your hands. You are up to the job. You studied hard, work hard, earn well and live well. You have a big responsibility and you have proven time and again you can manage the job. You make peoples life longer, better and healthier. Once in a while there may be a medical error or misjudgment that might tar that image.
Knowing that medical science is advanced enough to not risk the life of many patients and that you are good at your medical job must be a critical asset for many surgeons to keep their mental health and keep the confidence they need in their job to diagnose and treat patients.
Now suppose there does come along this disease like ME/CFS that according to most textbooks, basic medical teachings and advances should not be able to even exist. An enigma that questions the foundations where medical science was build upon. A disease that seems to make a mockery of medical science and laugh in the face of doctors. A disease that seems to toy with researchers by wiping out the scarce breakthroughs they make in this disease time and again.
How would many react? Bravely challenge this mythical illness time and again? With nothing to show for personally? Losing time and credibility that could have been used for more rewarding work? While this illness silently whispers “If I were to be real, what do you know? Do you know what you are doing or are you just guessing a lot of times? How many people could have died by you guessing wrong? 10? 100? 1000? How do you sleep now in your cosy bed?”
I can imagine not being confident you can and do make good choices when it comes to life and death is not an easy weight to carry. Many soldiers who had less innocent lives in their hands come back totally terrified and traumatized after but a year of being on the front lines. Could this be any easier for MDs, surgeons,… who seek to help those in need but start to realize they had large losses of life and life quality over all these years? Having very few support in their education to learn to deal with it? Having no network to rely upon when in doubt? Looking at it like this, does it wonder that there are so many burn-outs amongst doctors?
So no, I don’t think they don’t care. When it comes to many other supposed mental illnesses doctors often are either empathic or feel pity. When it comes to ME/CFS I experienced many of them becoming angry, irrational, harsh… That is not the same reaction as towards other supposed mental illnesses. They don’t mock at someone with anorexia. They don’t make fun with someone having a split personality. A persistent angry, irrational, harsh and mocking attitude towards something often is the signature of fear, deep fear.
So yes, I do find Collins to be a brave men. If I were right, being rational providing cost of the disease and counting on kindness by showing the pain and distress the disease causes could win the minds of those willing and daring to doubt and entrench those most resilient even deeper. Allowing the idea of this disease to be real is questioning there faith and role in life. They may not be willing to give that up too easily.
For those people, in my opinion it may be helpful to add another part to the advocating. The “what are the needs for these patients in the mean time?” Showing examples of how small non-medical changes can improve patients lives for now. Things like providing healthy meal services. Or giving patients parking cards that allow them to park on parking lots for disabled people. That would have helped me a lot. It’s not because I can use my legs for a short time that I could reach the townhouse if I have to park 300 meters further :-(.
While those things may not be our deepest desires (a real cure), they are helpful. They also help to make our disease a more visible and accepted part of life. But above anything else it allows some of those entrenched doctors to see a changing attitude towards ME/CFS as an opportunity to immediately help patients in their daily needs whilst allowing themselves to leave the “is this disease real” question open.
As such, they can more easily agree on a combined program of day to day improvements, exploratory research and non-dangerous treatments. This fits their role as health-caring people rather than it opposes it. They’ll probably stay far away from it but not blocking progress would be a boon. Who know after many years they even send patients to doctors more specialized in it…?
By the way, you are doing such a great job in everything you do Cort! My slightly different view on this matter is nothing more than an opinion on what might help change attitude towards our dreadful disease.
I reject the idea that over the past 30 years patient advocates have not tried hard enough – that is the ultimate in patient-blaming.
“I imagine his peers – his fellow scientists – are in strong disagreement with him.”
So Collins is afraid of his own employees? If he can’t control his own agency, then he needs to retire NOW. Bureaucracies are hierarchical, not some kind of ruled-by-consensus food co-op.
If it takes courage for him to issue directives and implement policy, i.e., to act as NIH Director, then obviously he is the wrong person for the job.
Or perhaps you are suggesting he is afraid of such esteemed peers as Regius Professor Sir Simon Wessely and the rest of his “School”, who all “just happen” to be paid by disability insurers to promote the lie that ME is psychological and and can be cured with therapy and exercise. That seems unlikely.
Exactly WHO is controlling the NIH Policy of No Research? Until that question is properly investigated, the policy will not change, no matter how many horror stories are collected.
Yes it would take courage for Collins to stand up and expose the disability insurers and their role in the Policy of No Research. They are immensely powerful and will retaliate against anyone who exposes them. Perhaps that is what Koroshetz was referring to. Perhaps someday a journalist will ask him.
I recall the “good ole days” when the tobacco companies were at the top of the heap and paid doctors boatloads of money to promote their poison. I also recall that they are not quite so powerful anymore, and no doctor today would tell patients to light up a cigarette to cure illness.
That is an example we need to examine very closely. A congressional inquiry of disability insurers and civil litigation could be “just what the Doctor ordered”.
I was a government admin assistant who had been promoted just before I got ill. I wasn’t making a massive amount of money, but it was enough that I was comfortable and able to pay my bills while putting some into savings (which is something I’m so thankful for!). After taxes, I think it was around 2300/month CAD. I have a milder form of it, so at first we tried taking me down to 4 days from 5, and while it helped it was still getting worse… then my husband moved back to Australia to finish & submit his PhD. He had been handling basically all the housework, including making me lunch & supper, since my days pretty much looked like this: struggling to get out of bed, barely getting out the door on time, barely making it through work, and then I’d crash on the couch all evening. So when he left and I had to handle the housework on top of working? I think I lasted all of 2 weeks before I crashed hard, and I never really bounced back.
I had to quit working. I spent the first month or so off basically sleeping most of the day, and when I tried to exercise, it was like 5 mins on the treadmill at a snail’s pace. but I was really blessed – my work had good benefits so I had some income still, and my apartment was small and easy to care for. There was a small grocer, medicentre, post office and drug store literally around the corner from my building, and it was near a busy bus route downtown so if I had to bus somewhere, I never had to wait long, and I could easily get to doctor & counselor appointments. Nearly everything I could need was within a 10 min walk of my home. There was a gym in the building, which was handy in the winter – I didnt’ have to bundle up or deal with the cold to go for a walk, and I could do it even for just a few minutes if that’s all I could handle. It had a balcony so I could go outside & enjoy nature, without needing to actually go anywhere. I don’t have any kids, so I just had to look after myself. My family would help me out with bigger things (like doing a big grocery shop). It was really a great place to rest.
I had to move out of our apartment when my hubby was offered a job in Australia, since we couldn’t afford it with him living elsewhere. I had to move in with my mom, which has been a struggle since she’s a foster parent with behavioural kids, so it’s constant chaos & conflict around here. It’s also in a suburb where everything is a 15 min bus ride or 20 min walk from the house, minimum. I had to give up driving cos even when I thought I was up to it, I’d often get hit with a wall of fatigue while driving, or sometimes I’d find that my focus was shot before I even left and I hadn’t realized it. So it’d be hard to focus, and I’d miss little things like red lights & pedestrians. Once I suddenly forgot where I was in a neighbourhood I was very familiar with, like my whole mental map was just gone. So no more driving for me 😛 So in this neighbourhood, I really feel a massive loss of independence. Anything I need to do depends on the schedule of the people I live with, whether it works with how I’m feeling at the time or not. I end up pushing myself a lot more cos of that, and cos I’m sometimes treated like a live-in caregiver for the kids, or have to help with physical things for my mom, who has disabilities of her own. I don’t really have a choice to say no to many of these things if I want to keep the peace, even if I feel poorly :/ So yeah, I end up pushing myself more than I normally would.
It’s not exactly a healing environment, but I’m still grateful cos my benefits ran out, my EI ran out, and I had to start living off my savings – if I weren’t with my mom, I’d probably be broke by now. Also, my dad often cooks for me, which is great cos at this point I’ve gone from making meals from scratch to struggling to do anything harder than putting a pizza in the oven.
So yeah, I currently have no income. I have put in an insurance claim, but they’ve denied me 3 times in the last year & a bit, always for really flimsy reasons, & generally ignoring my doctor’s advice & thoughts on my condition. I’m stuck in Canada dealing with it while my husband is working overseas, and that really sucks.
As for functionality then & now? I was super conscientious and hard-working. I’d work a full day, do my very best every day, I was always learning new skills at work and improving things in my area. I’d walk 20 min to work, there & back, every day, and go to the gym 3x a week. I’d often go on outings with my friends, go dancing & to karaoke & go for walks in the valley. When my husband got his work permit, we had to drive to the US border to get it from border services, and I personally drove the entire thing in one day – it was over 14 hours round-trip, with no issues at all.
Now, most of the time it’s a rollercoaster. I can’t predict what kind of day I’ll have very well, it’s very inconsistent. On my worst days, I sleep 11-12 hours, might manage to drag myself from my bed to eat, and then drag myself onto the couch to doze & watch TV. I don’t shower or get dressed some days… or I might be able to, at like 3 or 4 in the afternoon, after I’ve rested all day. I get this weird deep diffuse pain in my hands and forearms that makes it hard to hold a glass of water or send a text.
Sometimes I can read and do something productive online, sometimes I can’t even handle reading a sentence without getting a headache and losing focus. I still try to learn new things, but often it doesn’t stick or I can’t focus on it well enough (especially if it involves reading). I do better if it’s retreading something familiar to me, rather than truly learning something new or figuring out a solution to a new problem. At times, I lose track of what I’m saying in the middle of my own sentence. I often get noise sensitivity, which is a lot of fun in a house with 7 people in it.
On my average days, I need around 10 hours of sleep, and can get a little light work done (eg. dishwasher, paying bills, showering, reading the news, that kind of thing), maybe take a small 10 min walk around the neighbourhood, but I need lots of long rests and have to keep an eye on how I’m feeling so I don’t push it. I try to stop & rest as soon as I start feeling tired. I can usually only handle activity for about 60-90 min at a time, & then I need a rest for at least half an hour. (Even now, my arms are getting that pain I mentioned, from typing). For example, I had lunch at my sister’s place recently, and around the 60 min mark I was feeling quite rough, insisted my dad take me home (he was reluctant to leave), and then I needed to lie down for about 2 hours before I felt up to coming out of my room again. I know I’m in the danger zone if I start to feel like a ghost or a zombie. I once collapsed in a supermarket from trying too hard to get things done, and there’s been times that I’ve gone with my sister to buy groceries & ended up in tears by the end of the trip, just cos of exhaustion. My tolerance for stress is extremely low. I’ve had to give up many of my favourite hobbies – physical things like dancing & hiking, and even things like playing Dungeons & Dragons (cos the games usually last a minimum of 4 hours, and making characters or learning house rules is actually pretty intensive). I’m crafty & took up crocheting on one of my better stretches, but what might take me 3 hours to crochet if I weren’t sick sometimes will stretch on for a couple of weeks, since I’m not always up to it and/or if I have energy, I have to spend it on necessary tasks & then have nothing left for hobbies.
On my better days, I might be able to go out to see a friend for a whole afternoon, or take an easy stroll through a mall or botanical garden or some such thing. That’s always very nice! But lately I haven’t had too many of those days. I’ve been out out to see my friends only once in about 2 months at this point. On my best days, which are very rare, I actually feel normal again, like I how I felt before I got sick. If I do too much on those days though, I crash hard the next day, sometimes for 2 or 3 days. The last day I had like that was in September.
Luckily I haven’t lost any relationships from it. It’s definitely put some distance there though, since I can’t do as much with them, and there’s been a lot of adapting from friends and family, which I appreciate. It’s weird though, cos people react differently to you… sometimes they look at you with pity all the time, sometimes they act like you’re giving up on life & try to push you to do stuff. That can be kind of tough. My husband, though, is awesome & is really understanding and supportive.
What jimells said.
The impact of my ME and Fibromyalgia on my grown children needs to be recognized. Most grown children that have there own children, can call up Mom and say “Hey Mom, could you watch the kids because….. we need a break, or take Johnny to a doc appointment, or bake Mary a birthday cake,” and on and on. When I can’t do those things my children try to cope which means they must take time off work, or worse yet get run down and sick themselves because they have no support. The domino effect of my incapacitation is huge, and needs to be counted.
Cort, when I was first dx’ed with Me/CFS it was in 93. I had been ill with Fibromyalgia since 77,but managed to function, work full time etc. I had to change my job from a computer programmer to a staff job, where I was unable to simply plug numbers in to an existing spreadsheet. I was targeted for a force reduction and my pension was bought out for the princely sum of $42,000,$2000 for every year I worked. I was earning $50,000 a year and while we had always planned to retire early, the plan was not to be unable to do anything at the age of 44. I lost out on at least 10 or 15 years of annually increased salary, matched 401 k plus a guaranteed pension. When tested for ssdi which I was finally granted for Fibromyalgia and me/CFS my IQ was 20 points below what it was the year I graduated high school. My short and long-term memory continue to decline seriously. I miss all the activities I used to do, hiking, yard work, motorcycle riding, traveling, etc. My relationship with my husband has been affected as he is my sole caregiver and the entire responsibility for everything is on his shoulders. We choose not to have kids mostly due to health reasons. I had always wanted to finish my college degree by my 50th birthday but did not succeed until I was 54 and the only way I could do it was using CLEP tests and 1 on line course. I had 3 years of college so it took me 10 years to finish 1 year of college, costing me annual fees. I saw Dr Paul Cheney in order to help get ssdi and paid out about $10,000 out of pocket for fees and tests. My medical costs annually are relatively low considering we have fairly good union coverage through my husband, but they are covering less annually and we are paying a bigger percentage. We had to move from a 7 room brand new house in the Boston area to a 2 bedroom, 1 bath condo my mother left me in Atlanta constructed in 1949.We had planned to buy a big RV and travel the country in it, but we unable to afford it. Currently I am in my 3rd or 4th flare that has me house bound and I have a wheelchair which I need to use during these flares. I no longer drive and my husband has to drive me to all doctors appointments and anywhere we go.
Back to the requested comments about how having CFS/ME has influenced one’s life.
So many have explained this so well, but I will add my summary;
I became affected in college and I realized then that I could not pursue my desired pre-med or any other high intensity scientific degree because of lack of energy, so I fell back on art, for which I had a natural propensity.
I had such unreliable energy, I freelanced when I had the energy, and had a subsistence life when I didn’t, living in a series of single room ‘dive’ accommodations. I did manage to get married, but lost my husband to my illness. Having children? Impossible! I could barely take care of myself.
Now at 65, I have next to no Social Security because of how little I made over my lifetime. I do barely get by, but if one could calculate the financial loss only, it would probably, conservatively, be in the low millions if I had been able to pursue the career of my choice.
Now I am more or less housebound, single, and struggling. The loss of income is just one aspect of this terrible affliction. If all these effects are multiplied by the number of people who suffer from CFS/ME, the financial statistics alone SHOULD turn a few heads (and earn some attention and research dollars) in Congress and the NIH–never mind the lifelong suffering which one cannot place a value upon!
I can provide my story if numbers are helpful, but I feel like it’s variations on a theme. I wonder if it would help to reframe it to also tell the stories of how this country has lost out on so much. The contributions we haven’t made in our respective fields, the contributions we haven’t made to taxes, consumer spending, or local economies. There are so many other ways that others have lost because of what we couldn’t do because we couldn’t continue with our previous lives. I’m not sure how to word all this exactly, but maybe whoever is putting this all together can come up with something appropriate.
Thank you, Cort, for ALL the work you do to keep us informed month after month of the progress or lack of progress that’s occurring with these illnesses. It was heartbreaking to read how about the things that you have lost and do without. You very rarely share personal things about yourself, and I appreciate your openness. Reading all of these comments is heartbreaking. I think if people could give their permission, all of these comments should be submitted or put into a book to inform the medical world and Congress of the realities of this disease.
I could not find the form to answer the questions or transfer the questions, so I’ll try to answer the ones I can. I got sick suddenly in 1993. After 2 months of continuing symptoms I was diagnosed with fibromyalgia but I also knew I had chronic fatigue. After the research I’ve done in the past 3 years, I’ve self-diagnosed as having ME, not FM, and I’m changing my diagnosis with my doctors.
When I got sick, I had an 11 year-old daughter from my previous marriage and had recently got married. I knew I could only have one child in the condition I was in. It took the whole family to raise my second daughter, and she never got to see me fully active, fully involved, fully able to do the things I had done before. For any family outing we rented a wheelchair. Then I would spend a week or two in bed. I had to stop driving on holidays to see my family that were in different areas and our state because the days were simply too long to be out of bed. We would just celebrate at home. I used to cook for holidays but gave that up. I continued to work part-time but eventually had to give that up.
My second marriage also failed, but I had to stay married but separated because there was no way I could provide for myself. So we have an uncomfortable marriage on paper.
As empty-nesters I decided we’d move to a smaller house to lower my workload, but the move made my illness so much worse that now I’m almost completely bed-bound, with all-day excruciating total body pain. I don’t cook. I rarely shower. I always had long hair but had it cut very short so I could wash it in the sink. I have a hard time walking my dogs and wish I could afford a golf cart. I’d use my tractor mower but it’s too loud to take out in the evening.
My younger daughter now lives an hour away, but I don’t get to see her very often. Occasionally she drives down for overnight visits on her days off. My oldest daughter, son-in-law, and only grandson live 800 miles away. I’m very fortunate if I get to see them twice a year. Sometimes I can walk a little bit to take my grandson to a playground if it’s close by. Most of the time we make funny videos and watch videos on the sofa or on my daughter’s bed. He’s almost 7 and feels tremendously sad that I’m sick all the time. His other grandmother has rheumatoid arthritis and can travel more often, cook with my son-in-law who is a chef, and move around more than I can.
I never see any of my other family because they’re spread out all over the country. At 60 years old I’m more disabled than my parents were in their 80s before they died. They lived to see me get this illness and were heartbroken.
I rarely leave the house and had to give up all of my hobbies, including Church. I have a support groups online but it’s not the same as seeing people face to face. Still, it’s my faith that keeps me going and helping people with a wide variety of chronic illnesses. Some of them dealing with cancer. Some of already died.
So I lost the ability to work, all of my hobbies, all of my friends in my town, visits with my siblings, and am isolated and in pain everyday. The quality of my life is far below average.
I am no longer the athletic, busy, productive, involved person I used to be.
I am a 44 year survivor. It started with a Staphylococcus infection that was not treated for two weeks since I was not “allowed” to be sick. Had to be perfect. Is it vector-borne, chronic fatigue, ME, or something else? I would like to know but probably will never know. The cost financially (out of pocket) would be over $250,000.00 Probably more. Loss of income and investment would probably be over $500,000.00 or more. I was 13 when it hit and thought I would never date and certainly never have children of my own. I would not wish one day of this on anyone. I did marry and my poor husband has suffered but never gave up. The cost emotionally?: Teachers/community members/family turning on me at the age of 13. Professors/doctors/etc. treating me like dirt. I was such a good kid and society is cruel to people with health problems. I currently have to live in a very dangerous and threatening community. I would move out in a minute if we could afford to. Good luck to everyone and I am so grateful to the people who have pushed research, etc. on while those of us who are too weak could not do.
There are many comments, these may have already been presented, but I think are worth repeating in case not…
Measuring loss of medical care due to lack of knowledge on every level-
*Uniformed/biased providers (I lost access to housing & services because of this)
*Moderately informed providers- but still not enough knowledge to treat effectively or know of any specialist, let alone nearest (current situation).
*Lack of services covered that meet the cognitive needs specific with the disease (I had a social worker looking), such as help with phone calls, the copious amounts of paperwork inherent with poordom, or orchestrating a move when/if housing becomes available. I am at the top of some lists, but lack the cognitive & physical resource to do this & fear becoming completely bedridden by the process. After 1.5 years of preparing for a move, I have lost what took 7 years to gain back due to the stress of it.
*Alternative therapies insurance does not cover (acupuncture, neurofeedback, supplements etc). Due to medication sensitivity (severely limiting covered options) & income loss I’m not able to afford otherwise helpful therapies.
There is a social cost as well as financial.
mental health costs
loss of social contact
used to be able to do x,y,z – can no longer mentally/physically do them.
strains on relationships
Small number of GPs who understand the illness(es)
Lack of specialists (partly because CFS covers so many systems)
Increased costs – food, supplements, non-standard tests that don’t get government subsidies. Services that you have to pay for because you can no longer do them yourself – but don’t qualify for assistance.
Income at time of Illness onset – $110,000 AU
Income now – $85,000 AU
Occupation at illness onset – IT sys admin
Occupation now – same
Job Responsibilities at time of illness onset – high end Windows/Exchange tech
Job Responsibilities now – mid range, with flashes of high end when my brain works
Functionality then and now – have moved from full time in the office to part time almost entirely from home. Can no longer – walk or show my dogs, contribute to breed club (used to edit the club journal and manage the website), have an active social life (tired and brain dead), garden, sew, do more than basic housework, work on cars (husband and I are street machiners and currently building a hot rod), any substantial reading (which is devastating for an obsessive reader)
I have had to move to a smaller dwelling – no
I have had to cut into my savings/retirement accounts early – no – but will be retiring early
I am reliant on outside support – yes
I can no longer afford to do XXXX? Well – quite a lot of things. Most of my income is earmarked for mortgage, household expenses and oh yes, all those supplements which keep me vaguely human. But something as simple as going shopping for food is a marathon effort each week.
Six-figure income gone. 0 earnings. Previously speech-language pathologist- -no longer able to work. Previously identified, evaluated, diagnosed, and treated individuals of various ages displaying communicative, cognitive and eating/swallowing difficulties. Didn’t move through the grace of God. Savings, 401k gone. Totally financially dependent on partner. Cannot afford appropriate healthcare/meds. Divorced. Lost education, self-reliance, previous personality, social life, cognitive abilities, recreational enjoyment, friends, skills, lifestyle, pride, respect for our society, and oh, yeah- – health.
Started being ill at about 40, now 56. Previously annoyingly healthy and active.
Highly paid IT job, system design, project management – gone
Ability to earn a living – gone
Ability to sustain any kind of activity (eg working on community event) over time – gone
Ability to pick myself up, sort my life out, start anew – gone
Romance & sex – gone
Dancing, hiking, weight-training – gone
Friends & family – almost entirely gone
Savings, house – gone
Mental/physical creativity – almost entirely gone
Studying – gone
Sense of freedom – gone
Ability to carry out household and personal tasks – greatly impaired
Ability to grow my own food – severely impaired
Sense of living, rather than existing – gone
Respect from others – almost entirely gone
Emotions – pretty much gone
It might be interesting to compile all the things we say, then get people in power/celebrities to compile a similar list – and strike them off one by one and ask them how they’re feeling as the strike-off go along. Would make a great video, eg ‘The Rock’ Johnson watching his life disappear bit by bit.
I am so sorry for all you have had to go through and I wish you the best.
Thank you very much Cort for this survey, and your long-standing, and valuable service to our community!I have had ME for 33 years – gradual onset – mostly housebound for decades. My personal losses – boatloads.
Everyone’s stories here are heartbreaking for someone also living in the same trenches. But, as you say, the trick is to convey this in a meaningful way to people not involved. It is truly amazing that those in power seem impermeable to these stories and even hard facts such as income loss, and cost to our economies do not convince.
Recently, a story about the Canadian Minister for Disability hit the news. His comments to a group of Thalidomide victims may be instructional for us, but also puzzling and concerning, as to how to overcome:
I don’t know if these comments also reflect the Canadian government’s attitude and policy on ME, but given the intransigence of our government to do much of anything about ME for decades, I could hazard a guess this is the case.
So, what makes people believe in ME? What made Dr. Collins change his mind? And, Dr. Koroshetz?
I agree with the earlier statements that testing will provide evidence, and may convince others. And, we have that testing now!!! Not the magic bullet testing – the aha, you have ME, but certainly testing that proves dysfunction. The medical mantra, “I can’t find anything wrong”, might be dispelled with results from some of the testing we do have available. And, I want to add that there is no magic bullet test for MS. Why do we have to wait for a magic bullet test for ME? It’s just more government stalling!
Dr. Lily Chu, has an excellent article about ME testing, which includes a patient survey she did in 2013. If some people can afford some of this testing, this may at least convince their own physicians there are physiological problems. For those with extended health benefits, insurers may cover some of this testing (ironic!). Holistic, or naturopathic doctors’ fees for this testing may be partly covered by extended health coverage. Insurance companies usually want objective proof of disability. There may be some people who already have testing that proves dysfunction.
Here is Dr. Chu’s article:
I would add impedance cardiograph testing to the list, which may demonstrate orthostatic intolerance. The late Dr. Bruce Carruthers, lead author for the Canadian Consensus Criteria, used to refer people for this testing: http://iacfsme.org/portals/0/pdf/FDA-AugustFinalReportforUS-Version2.pdf The Cardiovascular Rehabilitation Lab at the University of British Columbia in Vancouver, has one of these machines. Most likely there are several other facilities with this testing.
As well, the Canadian Consensus Overview, page 18 has a list of tests that may provide results that demonstrate dysfunction: http://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf
On page 18 of the CCC Overview, under ” Chronic orthostatic intolerance” it suggests” monitoring the pulse and blood pressure while standing. Note this monitoring must be done with caution and someone standing beside the patient.” From experience, I can say this simple in office test can be very demonstrative of abnormalities. There are a few other lower cost (in office) tests listed in the Overview, including the Romberg test. I found the eyes closed version of this test produced results. If people try this test, they must make sure they have at least a couple people watching, and making sure they don’t fall, and injure themselves!
In my own experience, many people don’t believe me until they see testing that proves dysfunction. Nothing else suffices. Not tons of info, or discussion of loss, or even seeing me at my worst. Unfortunately it’s test results that matter. Practitioners seeing me chipper in their office, don’t believe I am sick. They don’t see me crawl into bed for days after. Nor do they see me rest up for days before a foray to see them. We may be damned if we do express loss, and are not chipper when we see practitioners. The immediate diagnosis could be depression, and not something physiological.
Of course providing one’s test results to all and sundry is extremely invasive, and breaches one’s own confidentiality. But, it’s the only way others who have been very skeptical have believed me.
Perhaps a central registry that collects this type of testing might be an idea. It could be anonymous, e.g. Person with ME #1, #2 etc. This info could be forwarded to governments. Buckets of work, I know!
The other point I can think of right now, is to promote the heck out of the documentary”Unrest”. This wonderful documentary will be aired on Independent Lens/PBS on January 8th, and as I understand, free viewing of this film starts on PBS on January 9th. If able, our community members could send out the “Unrest” Independent Lens info to their network: http://www.pbs.org/independentlens/films/unrest/
Thanks, Cort for your hard work, dedication, this survey, and this conversation.
I wanted so badly to purchase the DVD documentary, UNREST, for everyone on my Christmas list. Unfortunately, it isn’t available. So now I have to wait – stricken with pain and mostly bedbound by this brutal thief-of-life disease – another year before I can get the opportunity to provide awareness to the people that could change their minds and realize I’m not just a great faker of illness.
Apologies if this has already been said. My brain is headed for shut down, so I’m not going to be able to read all of the above, before I get the chance to add my thoughts. I’ve also lost my ability to contribute effectively, in a non-financial sense, to society. Sure I’ve lost the ability to generate income tax and have had to wind down my business so I can’t employ staff anymore. But I mean through things like volunteering time to help others.
I was a volunteer Ski Patroller for 17 years. I’d attained a high level of skill in advanced, emergency care first aid. Looking after patients with everything from cuts and bumps to stabilising fractures, spinal injuries and managing an unconscious patient; CPR & defib if necessary. I also volunteered in Alpine Search and Rescue and Bush Search and Rescue. Again, a high level of skills required in remote first aid, search techniques and rescue/retrieval methods. All skills I’d built through my own interest and desire to make a difference to others when in trouble. Made me pretty effective at also helping at car accidents and other mishaps people had around town, waithing for paramedics to turn up. My point is, I used my interests in a way that could bring purpose and fulfilment to my life and brought help to many others, strangers in our general society, who benefitted from this over the years. Now, I can’t do this anymore because of ME. And I’m sure there are others who feel the same. Maybe they used to walk their neighbours dog or visit people at an aged care home or pop into the local school as a reading helper to children. All things that form the backbone of a supportive, functional society. Lost to ME.
I would be happy to answer these questions in a confidential format. I bet many more would answer these, providing a quantifiable number to help “the powers that be” understand.
I worked as a professional, but in a reduced capacity, for the majority of this illness. I’ve had it since 1992, but became completely disabled 3 yrs. ago. I lost my income, a relationship, my house, and sense of self worth as a contributing member of society. I’ve had to spend my savings on the legal battle with disability insurance, as well as on seeing a specialist and getting treatment that’s not recognized by insurance companies. I’ve had to give up activities I once enjoyed, as well as socializing with friends. Please put these questions in a confidential survey so the data can be collected (surveychimp?).
It started when I got mono when I was 17 and coming into the prime of my life. I was struck down with a 41.c fever while overseas on exchange and found myself hospitalized in a country where I couldn’t speak the language. I couldn’t complete my school program there. I returned to my home country a different person. I could hardly finish my final year of school. I didn’t get my car license because my brain fog scared me to drive. I was lucky enough to meet my boyfriend now husband while in exchange and he stuck by me. It has taken a huge toll on our finances over the 18 years I have been sick and I’m sure he gives up a lot so that I can continue looking for proper treatment. Ironically I now live in the country I first got sick in and work as a freelance translator. I could never work full time. I’m having to give up teaching ESL part time as it’s too draining. It’s not the sole reason but it plays a major part in why we don’t have kids. I could never be the runner, or explorer that I yearn to be. I lost a lot of self esteem from all the missed opportunities and cancelled plans. We’ve all taken a blow from having a debilitating illness that faces scorn or at least little respect from most GPs.
Wont resolve until they eradicate cell defence mechanism.
So many toxins nowadays no wonder we shut down.
Stiff cell membranes through autoimmunity blight us througg CDR.
Suramin our greatest hope now.
6 year sufferer.
How many health care specialists have you seen?
How many medications are you taking?
What therapies or other medical treatments do you have to pay for on a regular basis.
These all add to the cost and the burden on each person with ME/CFS and their family and health insurance.
I would be willing to answer this questionair privately.
I have had CFS since 1994. Back then no one really acknowledged CFS. I had no idea what had happened to my life. It seemed like everything was taken away. Before CFS I was a very high energy person with an active social life. The disease has effected me financially, socially, and mentally.
I had to quit my teacher career in 1994 and was able to make a little income here and there for ten years. Eventually, I began to teach again part time more as a consultant with a home school program for eight years. I had to retire early in 2010. As a result my retirement income is minimal. Having a career as a “Public Servant” I do not get to collect my social security. I make about one fourth of what my peers make with their teacher’s retirement. I wish I had to energy and focus to be able to work and earn something on the side, but I don’t.
In the last 10 years pain, stiffness and joint problems have become a big issue also inhibiting my functioning.
I am usually too tired for much socialization as even conversation is generally tiring.
Additionally, it is increasingly diffiuclt to focus and complete tasks.
I always try to look on the bright side, but it is getting to be more of a struggle the last few years.
I probably should add this to my comment. This is what has been helpful to me:
Before the onset of CFS I had a car accident and near death experience which was so beautiful. There is so very much love on the “other side”.
I was paralyzed except for my right forearm and had fractured my pelvis in seven places, cracked a rib and my spine. None of this mattered in comparison to the gift of experiencing that love.
Many miracles happened around me at that time. The doctors felt I could be in the hospital for months, yet I was out in 2 weeks and soon learned to walk again.
My nurse in the hospital was there only those 2 weeks and I was his only patient. He never took my blood pressure, pulse, temp, etc. He only came and talked to me about the meaning of the human life. He explained that we are here to love and to love so thoroughly that we realized we are that love.
When I returned to the hosptial with a gift for him I was told he left the day I left. Everyone remembered him, but no one knew where he went.
So what gets me through the ordeal with CFS and Fibro is remembering those days. I try to look at everything as an opportunity to love and be grateful.
I don’t say that to degate the difficulties of anyone’s experience or of mine. I share this as a hope that it is helpful to someone.
My daughter has had ME/CIFDS since she was 15 years old. She’s now 54. She introduced me to your blogs. We both deeply appreciate everything that you do and have done for the patient community.
I’ve read and spent time with each story shared on this thread because I believe that every patient’s story, every caregiver’s story should be heard and taken to heart. I understand why institutions and researchers believe that they need so-called “data” to “prove” that our illness has “measurable” effects. But as each one of the comments above makes clear – No one suffering from an intractable, life-destroying illness wants to be seen as a statistic, as a pinpoint on a graph. “On a scale of 1 to 10, how much have you suffered from living without a life partner?” “What number would you like to choose to represent your loss of career, of friends, of community?”
As a patient volunteer in a research project dealing with another disease, every 3 months I play for half an hour at quantifying my symptoms in the online form, ending up exhausted and frustrated because there is no way for me to communicate what the experience of living this illness is like, day by day. There is no space, no place, no respect for the “anecdotal.”
I wish you well in gathering “data” that may help to raise money. Funding for research is critically needed. I appreciate that here you’ve given us a forum to listen to one another’s real stories and to wish one another well. I am grateful for this.
Thanks Mariah, 39 years is a long, long time. I’m heartened, though, by the continuing uptick in media coverage for ME/CFS. Who knows ultimately what impact Unrest will have on people’s opinions. The amount of publicity it’s gotten has certainly exceeded by expectations…
Income at time of Illness onset: neglible. I was a university student.
Income now: none. I’m currently out of work, recovering from a flare-up caused by working a job that was too stressful for me to handle.
Occupation at illness onset: traditional student
Occupation now: currently working on an online IT degree
I have had to move to a smaller dwelling: yes
I have had to cut into my savings/retirement accounts early: yes, and I’ve missed out on many years of gainful, full time employment during which I could have been saving for retirement.
I have had move back into my parents house: yes, multiple times
I am reliant on outside family support: no, but I am currently being supported by my wife
I graduated high school in the top 5% of my class, was a member of the National Honor Society, and I was looking forward to continuing my education and becoming the first in my family to graduate from college. I was intellectually active and curious, and enjoyed mental challenge. I did well in both the verbal and math portions of the SAT, and was admitted directly from high school into North Carolina State University’s challenging BS of Electrical Engineering program. It seemed that a bright, lucrative, successful career was in my future.
After my first year at NCSU, I took a break from school to work as a missionary for my church for two years. During my service as a missionary, I first began to recognize that I was suffering from depression and anxiety. I began taking antidepressants during this time. I also had chronic low back pain, and noticed that I didn’t quite have the physical energy and resilience that most of peers had, but I wasn’t yet disabled.
After returning home from missionary service, I worked for several months, then returned to school to resume my program. Unfortunately, I didn’t have the energy, resilience, or mental focus needed to continue in the program, so I changed majors a few times, ultimately settling for the much less demanding (and much less lucrative) psychology program offered by the university. I eventually was able to graduate with a BA of Psychology (still the first in my family), but not without dropping out of school to return home and recover a few times along the way, as well as needing to drop below a full-time course load for several semesters. Between dropping out and attending part-time, my degree took an extra three years to complete, for which I incurred a great deal more student loan debt than I would have had if I’d completed my program in a timely manner.
My first big, acute CFS crash came over the summer when I was 25. I was working at the school bookstore. In hindsight, I’m certain that the paper dust I was constantly breathing there was the trigger for the crash, as I have multiple chemical sensitivities, and paper dust is loaded with toxic chemicals. I was barely able to scrape together the energy to continue school that fall, but I never fully recovered from that crash. The doctors I saw tested me for the Epstein-Barr virus, but the tests were negative. They were stumped.
After limping through my degree and finally graduating, I took a job doing pension calculations for a large financial company. I felt like I was in over my head from the start, but I stuck it out for several months. Then I came in one day, sat down and logged into my computer, and had no idea what I was was supposed to be doing. My brain simply refused to work. Months of poor sleep and being overwhelmed by the complexity of my work had finally come to a head. I talked to my manager, saw the doctor again, and went on short-term disability. I basically slept for the next two weeks. At the end of the six-month disability, I was still in no shape to return to work, so I resigned, and eventually had to cash out my 401k savings I’d earned there to get by. The building in which I’d worked was quite old, and I suspect that I had again been zapped by chemical sensitivities, or perhaps by mold.
I moved to Virginia the following year, hoping that a change of scenery would renew me. It did, briefly. I took a job at a lumber retailer, but was in another crash within two months. Fortunately, I was let go, and qualified for unemployment benefits which got me by for several months.
Since then, I’ve been in and out of relatively low-paying jobs. I’m now in my 40s, and if I’d been able to stick with the electrical engineering program, as I should have been able to do, I’m sure I’d be making a six-figure annual salary by now. I’d most likely have married much sooner, and had children. I’d own a home, rather than renting an apartment. I’d have money saved for retirement. I would be able to contribute more to my church, my community, and the economy, both in money and in work. As it is now, I’m mostly just existing, trying different things to maintain and improve my health and capacity to function.
While I feel hopeful that the supplements I take and dietary changes I’ve made will help me to heal, I’m still starting over. Nothing can give me back the nearly 20 years of income and life experiences I’ve lost to being chronically ill, not knowing what’s wrong with me, or not knowing what to do to get better.