How do you all stay alive without enough finances or help/care from others?

[actup]

Hit send before I got other links up ; (

http://www.workwellfoundation.org/
http://solvecfs.org/ss-ruling-rescinded-and-replaced-for-mecfs/
http://www.shoutoutaboutme.com/testing/the-2-day-cpet-a-gold-standard-test-for-mecfs/
http://www.ncbi.nlm.nih.gov/pubmed/24755065

I believe ME/CFS M.D.s, Enlander in Manhattan(Mt Sinai), Daniel Peterson in Incline, Nevada, Charles Lapp in Charlotteville, North Carolina and Betsy Keller at Ithaca College, Ithaca, NY do 2 day CPET in the U.S. also.
Dr Ruud Vermeulen is in the Netherlands: http://www.cvsmemc.nl/our-doctors/dr-ruud-vermeulen/

How to Crowdfund : http://www.cnbc.com/2015/09/15/how-to-crowdfund-successfully-tips-from-experts.html

 

[MEPatient345]

I did the 2 day CPET last June, and have not been approved for social security benefits, although I expect I will once I get a hearing. More importantly to know, the CPET caused me to lose about 10% of function. I went from being able to cook, and occasionally leave house to being unable to care for myself. I must be horizontal most of the day, cannot prepare meals for myself and am much too ill to leave house. I thought at first it was a crash and that I would recover to prior baseline, but this is my new baseline. Anyone doing the 2 day CPET needs to carefully consider if it is worth the risk, especially if you don't have family to help look after you. I am lucky in that regard. It did help me win private insurance benefits, but I can't say it was worth it to be this ill.

 

[actup]

I did the 2 day CPET last June, and have not been approved for social security benefits, although I expect I will once I get a hearing. More importantly to know, the CPET caused me to lose about 10% of function. I went from being able to cook, and occasionally leave house to being unable to care for myself. I must be horizontal most of the day, cannot prepare meals for myself and am much too ill to leave house. I thought at first it was a crash and that I would recover to prior baseline, but this is my new baseline. Anyone doing the 2 day CPET needs to carefully consider if it is worth the risk, especially if you don't have family to help look after you. I am lucky in that regard. It did help me win private insurance benefits, but I can't say it was worth it to be this ill.

I appreciate your story. In retrospect I realize I was very unstable prior to test and actually became mostly bedridden the year after testing. Probably the stress of travel and testing was a contributing factor. I seemed to come back to pre test function after several weeks but did subsequently slowly decline. I was so relieved to have SSDI I did not think beyond that. What I'm trying to say is I was a mess and may be best not to trust my self evaluation at that time.

 

[MEPatient345]

@actup I hear you.. I also thought I was ok in the first week after the test, it wasn't immediately obvious that I had regressed so much as I had planned to rest up after the test in Ithaca for several days. I actually thought i had managed the test ok. But I got worse and worse in the following weeks once I tried to look after myself, and do this that were manageable prior.

It's a tough choice, I wish I had known how bad I could get before doing it.

 

[KitCat]

Hi everyone,

I am new here and really appreciating all the information in this thread.

I'm so intrigued to read this information about CPET. I honestly had never heard about this test. Thank you for writing about it.

I have read the SSA listing for CFS and I did not see CPET exam listed as a test they recognize as evidence. I'm really interested to learn more.

Actup, I would love to hear more about your ssdi application story if you are willing to share. You were so smart to do this, I'd just love to know more about how it worked... You mentioned that you were approved within 2 weeks of submitting test results. I have never heard of a decision coming this quickly for a SSDI case. I guess I am wondering if it is possible that this was just a coincidence --- they had already processed your claim and were planning to approve it by that point? I'm curious anything you would be willing to share about this - were you at the initial application level or reconsideration or a hearing? How long after you submitted your initial application did the decision come in? Did you see a copy of your file with any info on how the decision was made in your case? Do you know if you were approved for meeting a listing or for a medical vocational allowance? Sorry, these questions are technical, I don't expect you to answer them all Just anything you can remember I would love to know.

I tried googling ssdi and cpet but almost nothing came up. I'd love to hear more about anyone's experiences.

 

[KitCat]

elles,

Thank you so much for sharing your story on this. I'm very sorry to hear this happened. It good that you are here warning people.

 

[Valentijn]

I have read the SSA listing for CFS and I did not see CPET exam listed as a test they recognize as evidence. I'm really interested to learn more.

Probably a couple reasons for this. One is that they're probably not up to date, and the use of the 2-day CPET in ME is a pretty new development.

The other reason would be that it's used widely to show cardio and/or pulmonary disability, not specifically for ME. There used to be a pdf manual from the American Medical Association for it online ("Guidelines for the Evaluation of Permanent Impairment"), but it looks like they're charging for it now at https://commerce.ama-assn.org/store/catalog/productDetail.jsp?product_id=prod1160002

But I have a couple screenshots from the pdf or a slide show about it:

 

[Gingergrrl]

@Valentijn I had never seen that chart before and it says 1986 at the bottom of the second chart and was curious if it is still considered current? I have never done the CPET test and would not physically be capable. Even back in 2014, my doctors (former cardio and former naturopath) felt it was too dangerous for me to attempt so I didn't even though I had spoken to Workwell and filled out the initial forms.

I was approved for SSDI on the first go-round without a CPET so I know it is possible and I had many other tests showing my impairment. I am fascinated by your first chart which shows the different forced vital capacity (FVC) scores b/c mine ranges from 65% to 72% (in 2015 and 2016) depending on the exact test which puts me in Class Two but my breathing is absolutely horrific. I literally cannot even imagine what class 3 or 4 might feel like .

 

[Valentijn]

@Valentijn I had never seen that chart before and it says 1986 at the bottom of the second chart and was curious if it is still considered current?

It should still be current. The CPET has been around for 50-60 years, and the essential parts haven't really changed. It can be on a bike or a treadmill (bicycle is more common for disability assessment), and the software is undoubtedly far more sophisticated now. I'd also expect that results are more accurate as the technology has improved. But the essential bit is still that objective maximal exertion is achieved, measured by the input and output of oxygen and carbon dioxide through the mask.

Even back in 2014, my doctors (former cardio and former naturopath) felt it was too dangerous for me to attempt so I didn't even though I had spoken to Workwell and filled out the initial forms.

Yeah, it's contraindicated in some cases, and probably should be for moderate and severe ME patients as well ... but thanks to all of the psychobabble around ME/CFS, patients are sometimes forced to take the risk of long-term or permanent harm in order to prove biological disability. If someone has any other way to prove disability, then the CPET is likely best avoided.

I am fascinated by your first chart which shows the different forced vital capacity (FVC) scores b/c mine ranges from 65% to 72% (in 2015 and 2016) depending on the exact test which puts me in Class Two but my breathing is absolutely horrific.

The scores on that chart would be during maximal exertion. So your scores would probably be much worse during a maximal CPET than they are during a basic breathing test. My maximal CPET VO2 score (single day) of 11.9 ml/kg/min put me in class 4 on the first chart, and class C on the circulatory chart. My calculated score should probably be a bit lower, since my "resting" heart rate was much higher than usual, due to being taken while exhausted from traveling and sitting up too long.

But it's a safe bet that you'd be class IV and class D on those charts, based on how little capacity you have for even walking around the house. I can usually sit up all day, and walk to the kitchen or bathroom and back, and stand up for 5-10 minutes fairly comfortably every hour or two if I've been resting on the couch all day.

 

[Gingergrrl]

Val, thanks for clarifying that the scores are for during maximum exertion and I somehow missed that part re: the first graph and thought the FVC score was just on a seated spirometry or PFT test.

I am 65-72% of normal on these tests just seated in wheelchair with no other movement or activity. So I agree with you that with any exertion, my score would be lower. Thanks for clarifying.

 

[KitCat]

Hi ginger,

I am curious, if you remember - were you approved for cfs? what are the tests that you had which helped prove your case?

 

[KitCat]

valentin, thanks for posting this info.

 

[MEPatient345]

@KitCat cognitive testing by a recognized psychiatrist can be very helpful in proving disability, but is expensive, maybe $1500 or so. Also I did a tilt table test which was very unpleasant but showed dysautonomia. I think one of the most important things is to have s history of medical visits, medications and tests, doctors notes etc to document your impairments. It's less important to have a specific diagnosis. But going to a CFS specialist means they will document everything properly, since they understand the disease and can write letters on your behalf.

 

[Gingergrrl]

Hi ginger,

I am curious, if you remember - were you approved for cfs? what are the tests that you had which helped prove your case?

My case was based on my physical limitations which are profound vs. a specific diagnosis which is what my atty advised us to do which worked. Each doctor gave their own opinion from ME/CFS and viral reactivation of EBV virus, to MCAS to profound pulmonary restriction/lung weakness to Hashimoto's, etc, etc.

The common ground was that all doctors said that I was profoundly ill and could not work in any job in any capacity for any amount of time. I had a 16 year rock solid full-time career before getting ill and it was clear to the SSDI doctor doing my assessment that I couldn't stand up even for a few minutes.

The tests that were abnormal were several failed spirometry and PFT tests, a treadmill test, viral titers for EBV showing IgM+ re-activation and several others, a V/Q scan, a TTT, other blood work for MCAS and episodes of anaphylaxis and more that I am not remembering off the top of my head.

After approval, I had an even better TTT that was 100% positive for POTS plus evidence of neuromuscular problems/antibodies, but I guess I will have that info for the future when my case is up for review.

Hope this helps!

 

[KitCat]

Thank you so both so much for your replies. very helpful.

 

[Misfit Toy]

I find it daunting and awful to not only be sick, but be poor. I am not poor yet, but I know I will be. That sucks, too. To know that right now, you are okay providing that you don't spend money on anything "fun" but at some point you will be poor. Not only cutting back on fun, but cutting back on some of the very treatments that have really helped me. Like chinese herbs, or a massage. I miss those things, or getting my hair done. I do my own hair now, minus the cut.

The cost of living is out of control.

It's like a time bomb, worrying about money. It ticks and ticks and it makes my illness worse. I can't even live in the present because of it. I will run out of money someday and then what?

I have been looking for an apartment to rent that is less expensive around my way. Well, good luck. My rent is just as much as my SSDI and that is over $1,000. If I want to live somewhere less expensive, I will have to live in the hood with gunshots. No joke. A shitty area where my car may be stolen.

The places that are less expensive in the states have no good doctors or hospitals. I live near a major city on the East Coast. I really don't want to pick up and move to Kansas. You trade one problem for another. So, you have cheaper rent, but you also have no doctors and have to worry about tornadoes. Good times.

I had a friend say to me a couple of years ago, "You know, if you won millions of dollars, you would still be sick." Yes, true, but I could deal with it a whole lot better. I wouldn't have to worry if I had a roof over my head or if I was going to be on the street. I could live nicely, not worry about whether I should buy that shampoo or not. I mean seriously. I thought that was such a dumb statement. And if you are really sick, you can hire a shit ton of help. Who the heck wouldn't like that? We could hire chefs, people to help us during intimate dire circumstances.

Whoever said money doesn't buy happiness is bullshit. Try living without it and then talk to me. Having problems like health issues, or a broken heart sucks, but having health issues, a broken heart and anxiety all of the time because you have no money is the absolute PITS and I am not even in that position yet, but I am already mentally there because I am constantly worried about the future.

I am just going to say it...I LOVE MONEY. I have learned that. Why? When I have had it, it has given me relief. Stability, better healthcare, appointments with expensive doctors, dinners out at fancy restaurants. No worries if I ruin my car bumper...just pay to get it fixed! Come on...money is pretty awesome.

Since walking away from my mom....I lived so frugally and let me tell you, it's awful. I have been miserable. No money for a concert, for some of my favorite things...cutting back on things I took for granted my whole life. No massages, no luxuries of any kind and then worrying all of the time because you realize just how much money it takes to really make it. To really be able to take care of yourself, your rent, your car. It's insane how expensive it is to live and get around. I can't take the bus. I am too sick.

I can never live in the present. I am not in the present ever. What is it like...living in the now?

 

[KristenSF]

Whoever said money doesn't buy happiness is bullshit. Try living without it and then talk to me.

Yup. I am wrecking myself working the nine to five, then stealthily working weekends to try to catch up. I live in a city that has the highest cost of living in my country and I have a really good job that I love, but is increasingly hard to keep up with.

Every single day I think, that's it. I have to file for disability. Then I look at my salary and all the costs my insurance doesn't cover and I keep working.

On the third hand (LOL) none of the money I've spent seeing specialists or paying out of pocket for drugs or tests has brought me any relief. So ... Not sure what to do next.

 

[Misfit Toy]

Yup. I am wrecking myself working the nine to five, then stealthily working weekends to try to catch up. I live in a city that has the highest cost of living in my country and I have a really good job that I love, but is increasingly hard to keep up with.

Every single day I think, that's it. I have to file for disability. Then I look at my salary and all the costs my insurance doesn't cover and I keep working.

On the third hand (LOL) none of the money I've spent seeing specialists or paying out of pocket for drugs or tests has brought me any relief. So ... Not sure what to do next.

Kristen, I lived in SF for two years. The cost is brutal. Had to move back East. It's a whole lot of ugh.

 

[Valentijn]

Whoever said money doesn't buy happiness is bullshit.

It doesn't buy happiness ... there are plenty of miserable rich people as an example of that. What it does buy is comfort and security. Happiness comes from somewhere else.

 

[enginewitty]

From all I have heard, read and know over the years, men in general are discriminated against when it comes to
SSDI for disabilities that are not readily identifiable. I am not a person who is politically correct and I dont pull any
punches, so when it comes to obtaining SSDI, women have it vastly superior to men. No, if's and's or but's about it.

Yes, there was a time when men had a much better chance of obtaining SSDI, and a few of them are in my support
group, but with the slew of new applications, due in part to the massive unemployment in the US, which is not spoken of much on the "news" (mainstream radio and TV) Social Security has clamped down HARD on new applications.

The simple fact is that I should have applied for SSDI back in 1996 when I couldn't work at all, but I didn't. It's not in my
nature not to work, so when I could, I did. After the ME/CFS came back and bit me in the arse in 2014, after aging out another 17 years and pushing myself past the limits I should have set for myself, I relapsed and its not getting better.

My current HMO doctors, who dont believe in men with CFS/ME have been less then helpful, so that won't help my case any. I can just see the ALJ telling me that since I was able to work FT for 17 years, I can still work FT now.

hope this thread can shine a little light on your situation