Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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The Work Poll

Discussion in 'Finances, Work, and Disability' started by Cort, Jul 1, 2009.


The Work Poll

  1. I'm working full-time - I feel like crap but I'm still bringing the money in. Hope I can keep it up.

    36 vote(s)
  2. I'm working from 20-40 hours a week; still bringing some dough in (but alot less than before); cutti

    18 vote(s)
  3. I'm working 0-20 hours a week; I'm working somewhat but have taken a big, big hit financially.

    33 vote(s)
  4. Not working at all - but luckily I had other resources (family, assets), I'm maintaining; I'm not ha

    42 vote(s)
  5. Not working at all - dependent on family to keep my head above water financially

    92 vote(s)
  6. Not working at all - no family support - trying to keep my head above water with government support

    54 vote(s)
  1. Cort

    Cort Phoenix Rising Founder

    Studies suggest that a significant percentage of patients are either out of the workplace or are, or how shall we put it, being limited financially by this disease. The CDC estimates that the average economic costs per family of this disease are about $25,000 a year and that this disease costs the US economy about $25 billion (yes that's billion) dollars a year.

    Take this poll and let's see how we're all doing with regards work.

    (All answers are of course anonymous)
  2. Knackered

    Knackered Guest

    Edit, never mind.
  3. kurt

    kurt Senior Member

    The funny thing about this Work Poll is that many PWC, like myself, slide through all of those. Literally I can track how I went from working full time with CFS and suffering through that, through working less and less, then relying on family support when I could not longer work and was trying to get disability, and eventually ending up on disability. The worst was relying on family support, not because they did not want to help, but because I felt that I was pulling people down with me financially, it was a strain on the relationships. CFS really hurts more people than just the PWC. But the real question is, can we slide back up?
  4. Julia Rachel

    Julia Rachel

    25K per year? Try about 80K per year for my son and me, per the costs of our family for this disease. This does NOT include loss of earnable income. That would be at least 500K for the past years I have been afflicted.
  5. muffin

    muffin Senior Member

    Cort: My husband and I were trying to come up with better numbers for the total loss of income from CFIDS and the cost of SSA/Medicare to get a truer picture of the real costs to the US economy. First, the $25K is too low, in our opinion. I need to see what the national averages are but I thought it was higher than $25K. The loss of my husband's and my income is more than $25K, that's for sure and I expect that is the case with many folks.

    We don't know the real numbers of CFIDS sick but I would bet the numbers are higher than 4 Million sick - and I mean REAL CFIDS Sick and NOT the Reeves "I am very tired" fagitue criteria. Then we played around with SSA Disability and picked about $13K/year on average. Though I would love to know the real SSA numbers for CFIDS people. Does anyone know for a fact IF the SSA keeps data on the breakout for diseases/physical disability for SSA disability?

    My husband did a bunch of differnt numbers for the above factors and came up with a HUGE number, being conservative in his guess-estimates. But even being more conservative in his assumptions the numbers were still far higher than what the CDC came up with. Have to get his data/assumptions and see what others think to come up with a more accurate number than CDC's numbers. I think if we all play with the numbers we will fall off our chairs at how high the true numbers are and how OFF the mark the CDC is.
  6. Cort

    Cort Phoenix Rising Founder

    I agree Muffin. I was ready to do some pretty good stuff when I got sick. Since then I've never made more than $12,000 a year and mostly quite a bit less. My twin brother, on the other hand, probably makes hundred thousand dollars a year, my sister and younger brother are middle-class earners. I have no retirement, just a bit of social security....I imagine I would probably be making somewhere near what my brother does; (I make about $5,000 a year now). So this 's diseases has probably cost me well over a million dollars in income over the 30 years I've had this illness.

    25,000 a year is crazy low.
    CatNap and belize44 like this.
  7. vdt33


    If I were still working at the job I had when I became disabled, I would probably be making about $100,000 a year by now. I have probably lost one and a half million dollars in wages as a result of not being able to work. I don't know how much I have spent on treatments not covered by insurance, but it is a lot, not to mention how much I helped my mother with her ME/CFS medical expenses in the last years of her life.

    I am fortunate to have a husband who has a good job, but our standard of living is a lower than that of his colleagues. They laugh at him because he drives a 15 year old car.

    This illness takes its toll.

    belize44, Frank1918 and roxie60 like this.
  8. muffin

    muffin Senior Member

    At this point in what would have been my career, I should be at the $200K+ level. I was just about to be made VP/Marketing and had killed myself getting a long list of degrees and working my butt off like crazy in an ugly field. I made it a point to move from analysis to marketing to make that level of money --- and then I got sick. By now the amount of money I should have made over the last 16 years would be well into the millions. And never mind the huge amount of money I spent on fake doctors, medications, potions, creams, every sort of back/neck virbrating machine, etc. etc. Over a 7 year period, the drug store printed out that I had spent over $100K on meds and I had to pay 20% of that. Those 7 years were the least expensive of the medication years since they were early on and I was not on the really expensive meds. Now I am forced to do mail order since I can not pay my 20% on the meds - that would kick my 90 day supply up to around $2k. We don't have that.

    I, like all other CFIDS people, worked so damn hard to get to a good point in my career and make good money so that that constant fear of not having enough money (to eat, live, etc) would leave me alone. Well, here I sleep, with that constant fear. And my husband got sick 6 years ago and his income is gone. We do have a Fed pension for him, but it is NOT what both he and should have been making the last 16 years for me and the last 6 years for him. Pisses me off - all of it.

    Sadly, I actually am not upset about the "average age of death" for CFIDS people being around 55 years old. Where they get that number is beyond me, but it doesn't bother me since the money issue gets worse as we move along. If my husband dies before me, then I am really screwed. Thanks CDC. Great work on our behalf.
    belize44 and Webdog like this.
  9. muffin

    muffin Senior Member

    Actually Cort, given your gifts I would expect that you would be making a lot more money than your siblings. You still have a fantastic brain and if you were not sick, someone(s) would grab you and you would be outpacing the majority of the US. I think everyone on this site can see how gifted you are and that you would be making a large amount of money were you not so sick. Pisses me off about that too.
    CatNap and belize44 like this.
  10. LazyLizard

    LazyLizard 11yrs with ME

    Financially my story is similar to Cort.
    As a telecoms engineer I didn't have to worry about money before CFS/ME hit me.
    (80-90k pa)
    Now I am at 5-10k pa fixing PCs in the neighborhood when I have a good
    Massive expenses on tests, treatments and potions on top of that.

    If we ever have kids I will probably have to ask for a disability pension.
    If I would get it is not certain.
    belize44 likes this.
  11. Mya Symons

    Mya Symons Mya Symons

    Whoops, brain fart. I should have chose the second option, not the first. Is there a way to change it?
  12. ahimsa

    ahimsa Rarely on PR now

    Kurt, this is so true. Since I first got sick in 1990 I have been in *every single one of these categories* other than the very last one.

    When I first got sick, I had to take complete rest. There was no question about it because I was having trouble just walking across the room. I went on full time medical leave, no working at all.

    Then I cycled through different periods of resting (full medical leave), working part time (part time medical leave), and working full time. Because I was so sure that I would eventually get better, I repeated this pattern of resting-working quite a few times. But it was slowly lowering my baseline without my even realizing it. Then in 2000, after I had surgery (for endometriosis, not for ME/CFS), I finally I got too sick to go back to work and had to file for long term disability.

    As far as the last category of the poll, the only reason I'm not there is because my husband is able to work. If something ever happened to him then I would have to learn how to live on SSDI alone.

    As Kurt said, how many of us are able to slide back up the categories after sliding down? I know it happens sometimes but not sure how often.

    Just some random thoughts....not sure how useful they are!
  13. maryb

    maryb iherb code TAK122

    This thread is a very good idea.
    Maybe the lurkers on here (ie - not people sick with ME/CFS) connected to the policy makers will read this it, look at this poll and realise what a massive loss to any society us continuing to be sick is. Many of us were high earning professionals with many years of work ahead of us, how can any government not look at this and think, we need to get these people well and back to work, whatever it takes.
    On a personal level I was on a 38000 salary when I fell sick and never went back to work, my job was kept open for 2 years, and I tried so hard to get well. My husband took early retirement, no private pension, from a salary of 50000, as I was so ill and needed someone with me. So even over just 6 years still a lot of money. When you include the 1000,s of people becoming sick daily it becomes a staggering figure. Following the psychs theories has cost many governments millions, never mind the cost of suffering to us, those who went before and those who have yet to come.
  14. LilacGardenia


    I'm a student, so I'm basically working so I can one day work in a career that pays me to work instead of me paying tuition to do work. :D My tuition payment is like $16,000 a year with about $700 additional costs for lab materials and textbooks. I resell my books, so that $700 really ends up only being about $400 which my grandparents pay for (they're really into reading and education and always bought the grand kids some sort of books, so now that I'm in college they buy my textbooks). This really helps a lot. In addition, my parents pay my tuition, but I chip in with my scholarships. I take a pretty hefty course load, so I don't work at the moment, but I do work when I'm not in school. I used to tutor people in high school, and I still eBay. I'm very conservative and have always been -- I cut coupons and head for the sales when I shop. My family will get like $250 worth of groceries for $100 just by clipping coupons, and checking when the sales are. As for clothes and other necessities, I also use coupons, head for the sales and season clearance sales, I also get a lot of amazing deals at thrift stores (they really aren't as shabby as the sound, I get gently used or like new name brand stuff for 10-20% of the original price). So in the end, I end up getting the same things as other students that work while going to school, I just don't actually work, I'm simply really smart with my spending. I have friends that work 15 hours a week just so they can keep up with the latest expensive clothes and go to concerts, I think it's insane... errr, not my cup of tea. I definitely recommend being conservative with your dollar and looking for sales and coupons, it really makes a difference.

    It bugs me that so many amazing people (including myself) could be offering the world so much more if it weren't for this disease. I especially feel bad for those worse off than myself, while my life has been significantly impacted by this, I have the pleasure of getting out of bed everyday and going to class even if it does mean taking an 80% over a 100% and dedicating most of my time to it, I'll still get my degree. I feel like this is also a lesson in what's really important. getting all A's seems more ego beneficial than in favor of academic and career benefits (you still can be just as good or better as a B student than the A student). If I got on to research treat brain damage (as i wish to do), all have the ability to actually feel with the patient what it's like to experience it. Having this empathy helps tie you closer to the cause. Imagine if the CFS researchers had some form of CFS that still allowed them to somehow manage to do what they do, or had a close friend or loved one with it, I think they'd be more driven to find a viable treatment and better understand what it's really like for the patient.

    Also, Cort has put together an amazing site that has touched a lot of people and helped them cope while we wait for better medical intervention to develop. Sure he could be working for a major company and making a lot of money, but where would we be (swimming from dead message board to dead message board or without any)? :D I hope he is able to pursue his career without CFS getting in the way, but I like to think what is God thinking about out motives and what we've done? Yes, we need money to pay for necessities, but once we pass on to our after life, those luxuries and piles of money will be left behind, but who we are and the people we've touched will always be there. It's something to think about, especially in a world so driven by money (a big issue that is also presented in research and healthcare, and ties back to the lack of intervention for CFS).

    I wish a solution will come upon us ASAP. It's so hard hearing about the hardships people with CFS, their family and friends go through just because of this one disease. In the meantime, we just have to make do with what we have and hope and pray for a better tomorrow.
    CatNap and allyb like this.
  15. loayachil


    New York
    Thanks for putting this up Cort,

    I kinda fall in the first category, although I feel a lot worse than garbage.
    I was going to write a longer thread, but never got the energy.

    I had gotten CFS in high school, and having no support, and having no idea what happened (I didn't know I had cfs, just that my head was on fire, I had difficulty seeing or reading, I could barely remember any of my friends or any memories not to mention studying or thinking, and had difficulty breathing and muscle pains) I just continued day in and day out.
    I eventually fought through college and got a job, although I am deeply regretting it.

    During my first month I spoke publically at graduation, only to fall asleep standing and black out, forgetting what I was doing.
    Many teachers thought that I was either not caring or held something against them as I would say something intelligent one minute and not understand something simple the next (a few phoned my parents).

    I just push myself minute to minute just to continue and to hold my head up. I struggle reading simple things and I have to read "real documents". I often have to skim it several times (as reading it regularly and thinking is impossible) and hope that I haven't messed it up. I used to often wake up early (8ish) get out of bed and get to the living room just to fall on the floor and be woken up later by my roommate who would step over me with an "again". I remember once falling asleep at my computer when my supervisor came in and asked me "are you alive?". (He was actually really helpful, not getting angry when I came late and telling me "the next time you fall asleep close the door").

    Every minute is a nightmare with my head on fire. I recently had major stomach pain (with blood) and took two days off where I spent the time not moving in bed. I realized that if I stay bed bound I have less headaches and muscle pain, and am wondering why in the world I ever got out of bed to start with. I could stand up and move around and work (kinda) but the pain is unbelievable. I was raised with a mentality of always pushing through, which has destroyed me. (It's like lifting a 500 pound barbell. People can push to do it but only an idiot will since if they do they will likely pull their sockets out and tear their tendons. I realize that I have been that idiot.) (Which also leads to less credibility even from fellow phoenix'ers.)

    Dr. Batemen often mentions pacing, and I wonder if I had done that at the beginning if I would have gotten better. I know for sure that I would have suffered less.

    I am thinking of leaving work and going on a government program. I have gotten to the point that I cannot keep up with the pain, and at this point being productive means nothing to me. I just want less pain and hell.

    Sorry for unloading, and hope that it was okay here,
  16. Azrael


    I hear you, I get rather upset just thinking about it. So many people with potential and then everything in life just stops. It sickens me that no one really helps us. I have been too many different doctors with a fresh mind coming in. Im different now, not as naive as I was before and have become a bit cynical too. I take control of the discussion but they don't like that. That also means there's no point going to a doctor any more apart if you break a leg or something with ones organs. Now I diagnose myself and prescribe whatever vitamins or supplements I need. I would love if I could operate on myself too then I probably never have to see an arrogant doctor ever again.

    Anyway as you were saying, governments aren't especially effective. The only time a goverment is really effective is when there's a threat against the state. But everyone with CFS is low priority plus many other chronic diseases. An illness like CFS needs to be discussed and shown more in media, eventually leaders eyes will open. I guess the last doctors that open their eyes is probably those that were the most arrogant and negative when we look back. Things will change eventually, just takes time.

    The only time I got better myself was when I stopped listening to doctors and went my own way, but by then a good 10 years have passed. Sad, much bitterness in me today. Since treating myself im up from perhabst 5% to 35% of my full potential. So much better than before but still far away.

    That's also the reason I signed up for this forum today, this is my first post and im going to take the last steps to a healthier me.

    To all of you working little or not working at all, I hope you get much better and eventually can take on life from a different perspective with more energy and confident.

    I hope to be talking more with some of you soon. Tired now.
  17. roxie60

    roxie60 Senior Member

    Central Illinois, USA
    now not working so my answer wud change if took poll now
  18. surethom


    13 months unwell coped for 5 months then 2 months off I'll now back to work 6 months Still unwell but still working, I am told I have to go on a 5 day I. T. Trying course or I will not be fulfilling my job & it's been 6 months back in work are you not better yet! , which soundly like do the course & get better or lose your job but just about coping with getting to work never mind 5 days of learning & testing.

    But if I lost my job it would be hard for someone to hire me with my mild ish current condition.

    Live in Wales UK so medical bills to pay luckily but also not much help from Dr's.
  19. RogerBlack

    RogerBlack Senior Member

    Got ill at age 10 or 11. Was I ever well? I sort of remember running, but it seems like a dream.

    Sort-of attended through university, but fell off about the fourth semester after some repeats.
    Tried to do self-education, and now know a reasonable amount of electronics/computing/physics - to the point I'm actually at times able to advise professional engineers.
    I would expect to be at the peak of my career at this point, before perhaps branching out and doing something with my savings.
    Perhaps in IC design, or MEMS.

    However, instead of earning on the order of a million by now, instead I reduced my parents earnings by at least 100K (being unable to take work, and eventually giving up work to care), and likely to cost society around 500K at least over my lifetime, instead of contributing perhaps 500K of tax.

    The cost of me, alone, assuming I do not need further services such as worsening and requiring residential care, could have paid for a large clinical trial.
    (FITNET, for example cost around this).
    Little Bluestem, *GG* and Webdog like this.

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