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

[Rvanson]

Just wanted to say to you @Rvanson I so relate to this post! I am working on disability now but am trying to get it via a State that I worked for. I did not pay into Social Security while working for the state, so if I have to resort to SS(D)I I will be in very bad shape, think I would get about $700 a month?

My father was a workaholic as well, but mine are still alive so I am able to stay with them while this plays out. I never married either, no kids, so don't have stress from that.

I had trouble understanding my illness, so it did not help me in the workplace, so doubt I would get many "referrals" from co-workers as well. Although i could be pleasantly surprised with that?

GG

I always worked in a private sector jobs, where any weakness is seen as "unmanly" and as far as "human resources"
management was concerned, they didn't want to hear about any excuses. I was indeed lucky that my ME/CFS decreased to a point where I could return to work, but that was it. My weekends consisted of sleeping and recovering
my strength for another weeks work. No time or energy for any fun, just recuperating from the previous weeks work.

In a way I am glad that its finally over with. I am looking into other ways to make money that wont sap me of whats
left of my strength. Barring that or SSDI, which is unlikely, I will take my early retirement when I reach 62 years of age.

Marriage is out of the picture. My GF dumped me real fast when I became ill, and I have no interest in any woman who cannot see me for what I am. I didn't ask for this disease, but I have it regardless. I no longer speak of it to anyone.

I am upset that so little research has been done to diagnose it, but being a realist I doubt a cure will be found in my lifetime, which will not be long since people with more severe ME/CFS cannot exercise for any length of time, causing all manner of cardiovascular problems, leading to an early death. Thankfully, I am ready for that, and not scared at all.

 

[*GG*]

I am upset that so little research has been done to diagnose it, but being a realist I doubt a cure will be found in my lifetime, which will not be long since people with more severe ME/CFS cannot exercise for any length of time, causing all manner of cardiovascular problems, leading to an early death. Thankfully, I am ready for that, and not scared at all.

Yeah, I'm a cynical guy as well, and doubt that Health Care industry really wants a cure for anything, that way they can keep the money coming in. I'm just looking for something to really help alleviate the symptoms, so I have a better quality of life!

How far off from 62 are you? Was thinking you were closer to my age of 46.

GG

 

[enginewitty]

hi Jennifer,

thanks for your kindness and ideas.
Im a US citizen but outside the US right now.
I could probably get a plane ticket back but would not have enough money to live even frugally.
I need care from someone regularly as although i can physically move around things are only getting worse.
I only get out of bed because I need exercise and can't sleep if I don't move around.
On top of this my spine is starting to hurt from lying down so much.
I only have enough energy to shower once every couple days.
I can't even remember when I posted this original thread but it's taken me this long to reply and I'm still extremely exhausted typing this now. that should give you some idea of my energy levels.
cooking is too much. sometimes I just fall asleep on the floor because I can't make it to the bed
Im coherent but I notice my memory going also
going out in public, forget it. the stress and anxiety is insane, not to mention the racism, ignorance and general lack of acceptance of the people in this country is way too much. I don't get how even healthy people from other countries can harmoniously live here. maybe they can't either. anyway, this is a sub-topic that I should probably ask for more advice on- how people with CFS\ME deal with going out in society.

I have no family or friends who are willing to help and only about 8 weeks left on my visa here.
If I go back to The US, which I really don't want to do for a variety of reasons, I have nowhere to go and would be homeless. given that I can only make it to the grocery store maybe once a week and Im pretty much living off delivered goods and convenience store food when necessary, homelessness would just land me in death. couldn't do it and wanting to regain my health.

I don't think this is a viable option with my current health but if I had my own place and garden and could live off the grid I could possibly survive, but that's about it. Honestly I don't think I have the energy but what do you do in my situation?? fuck if I know.
I want to get better but this may be my only option for now. but then i would probably need someone to do all the research and actually make it happen for me so that's probably not gonna happen. was researching about yerts a while back. still keeping my mind open.
however you mentioned someone posted about free land they had in New England a while back. any more info on that post?

thanks again
Andy

(I just wrote what's below, and reread your post and it said without help from others. I'm not sure if it's because you don't have the help of others or your not comfortable taking the help from others. Some of what I wrote does include finding help from others. It's hard but survival sometimes necessitates it. I know. I've always been extremely independent. Worked as a child to pay for things. I cried when I had to apply for food stamps . It was so humbling. Accepting help from others was hard and still isn't easy the times it comes my way, yet I'm so grateful for it.)

I lost some of what I wrote so I hope this isn't too disjointed as I try to rewrite those parts.

Andy, I'm so sorry. This illness is so hard to begin with and then to not have enough money to eat or afford a place to live on top of it. Here's a little of what I went through if it may be of help with some suggestions and ideas for you below.

Being in a new city, sick, deathly allergic to cats (which everyone I knew had), and a family who didn't believe I was sick and thought helping me would be enabling me, I went through several years not sure how long I was going to be able to stay housed. I remember looking at abandoned houses and buildings when I was on the bus and making a note of them, that it might be a possibility of a place to live. I wouldn't be able to stay in homeless shelters due to the extent of my health and abilities, if they even had room for the night, and most of them you had to be out in the morning . Sometimes if I had enough energy, I would go to homeless dinners.

I'm not sure where you live or how much health you have. I'm not sure what programs they have to help with housing, cost of things, food or disability where you are or if you can get some where they have more. If you say what country you live in, state and the city if you are comfortable, people here might be able to point you to resources and ideas in your area.

I had charge cards initially while I fought 7 years for my disability. I kept making minimum payments and kept taking money out of them and increasing my credit line so I could live. I lived like a pauper to stretch it as long as I could. I was thinking I'd be able to go back to work at some point and pay them off, or my disability back pay would cover it. After that, mainly "the kindness of strangers" (thankfully) helped me minimally to keep me housed (in a room in a building with shared bathrooms ) until my disability came through. (I'm still there now.) Amazingly most of the people that have helped as they could were barely surviving themselves.

I know a lady with ME/CFS that lives in a trailer with her boyfriend on the streets. Some people with vehicles were living in Walmart parking lots or out in the desert. Ideas I've thought about . Some cities have programs where you can live with older people. What would be expected of you and cost could be worked out. Maybe someone only needs someone there for safety reasons and in exchange you can not pay rent.

Someone also recommended back then for me to go to support groups if I could, when I could. Even groups like the various Anonymous groups (AA, Coda...), because people there would most likely understand the predicament I'm in, have empathy, and possibly could help me out.

Are there social workers where you live? They could help with some resources. I know they might not be able to do much. At the least I would hope they could help you get food and on any housing waiting lists, help applying for disability, and possibly some monthly money until you can get disability. We can fall through the cracks with ME/CFS, having other things going on can get you more help some times. Hopefully, there's help for you where you are at.

If you can get some kind of minimal money, maybe you can share a room or a studio with someone until your disability comes through. I'm not sure how your health is and if that would work for you to hold you over.

I hate that you are going through this. I wish I had a yard and ideally a house and money so I could help you and others. I hope some of this and the suggestions and experiences of others here may help you, and that you'll find good housing and be able to get help with food. My thoughts are with you. I wish I could do more.

One more thought just came to me, I'm not sure if you are in the U.S. Someone on our forum posted a while back that he had some land if anyone wanted to stay there. I think it was in the New England area.

 

[enginewitty]

Agreed and if you provide that info, we can help you better. If you are in the US, I can give you the name of an excellent disability attorney that you can consult with over the phone (for free) re: your case. They only get paid if you win SSDI and get nothing if you lose.

Outside of the US, there are many on PR in other countries who can advise you. Best wishes moving forward.

Hi Gingergrrl

Im in Japan at the moment. visa lasts until the beginning of June this year.
Im a US citizen.

feel free to pass on the info of that lawyer.

Thanks
Andy

 

[enginewitty]

A lot of patients have to go live with their family (or never move out). Some are supported by their spouse/boyfriend/girlfriend or family. (Sometimes they have to stay in an unhappy relationship just to have a place to live.)

Some borrow a lot from family or friends.

A lot of patients do some part-time work, but many make under $100 a week.

Some get on SSI or SSDI or disability through work.

Some patients get Section 8 housing, but most people can't because the waiting lists are too long. Some live in shelters or couchsurf. Some have a good friend that gives them a discount on rent, or free rent. Some patients live in their cars, a shed/trailer, or the woods. Or their monthly housing costs might low if they were able to buy a mobile home or a cheap older house (usually in a bad area).

They might be able to work instead of pay rent, if they find the right situation. Most patients can't do this because of not having the energy. Also, many situations are only temporary or part-time.

Some patients take a housemate or more than one. In the right living situation, they might even live rent-free (usually needs at least 3 housemates).

Some do crowdfunding while waiting for disability or diagnosis/treatment.

I've met patients who busked (both of them were musicians).

A lot of patients don't get ill until they are over 35. By then they might already have some things like a house or nicer car. A lot of patients have to sell their house, car, and other things to get by. (Usually while waiting for disability, or while they try treatments, to get healthy enough to work more.) Also if they have built up good credit, they might be able to borrow a lot from banks.

Some were already good financially before they got sick. (Passive income, inheritance, already own real estate, etc.)

Not many patients do this, because you usually need a solid diagnosis, but some types of patients can get in paying clinical trials. Most trials don't pay enough to live on, or last very long, but some do.

Thank you for all the info
this is what I was looking for and describes my current situation and basically my entire situation for the past 8 years or so.
but after 12 years total of having this, getting nothing but scrutiny from doctors, friends, relatives and the rest of society, pleading and begging for help, even praying (I've never been religious), I'm just over it. I need to rest.

thanks

 

[enginewitty]

thanks to everyone who participated in this discussion.

all in all what everyone seems to be saying more or less is, "if you are not already financially well off, you will struggle with this disease and lifestyle until something out of your control changes." I just don't have the energy left to keep suffering day in/day out while being ignored, ridiculed and even aggressively confronted at times. let alone living in foreign countries/cultures and having to be the subject of racism whenever I leave my house just so that I can afford one.

I hope I won't actually have to do anything physical to end this shit, and will continue my health protocol and other alternative holistic therapies I've been doing hoping some improvement comes, but I don't see a lot of hope from where I am. I will keep praying and asking for answers/guidance.

Feel free to pray for me

and before I sign off, just let me give an idea that I haven't seen yet- pay it forward.

if you, or somebody you know, has suffered from CFS/ME and has overcome and regained their/your health, do something to help someone else until they get better also. it's pretty obvious the system doesn't give a fuck about us and that the only people who understand what we're going though is, well, us. in the end, each other is all we may have for hope.

one other idea is to try to get organizations involved or start them yourself if you have the energy to create some type of basic, cheap, easily accessible and easy-to-build shelters/homes specifically for people like us. this could eventually snowball into a solution for all people with disabilities/homeless, etc

although these are not things any of us could probably do individually, we might be able to do something together or at the very least, pitch the ideas to people who are caring for us who would be willing to get the ideas rolling on our behalf.

I wish you all the best and may we all find an easy and comfortable way out of this hell.

One Love

 

[SickOfSickness]

one other idea is to try to get organizations involved or start them yourself if you have the energy to create some type of basic, cheap, easily accessible and easy-to-build shelters/homes specifically for people like us. this could eventually snowball into a solution for all people with disabilities/homeless, etc

There are little communities like this around the country. It's called the "tiny house movement". Unfortunately they have a long waiting list as soon as they start taking names. Some people also do it illegally, for example, living in a rented office or storage space. There was an article about a couple in California living in theirs, and then a friend or two found out how much money they're saving, and now it's a lot of them. But they got kicked out of their original place because you're not supposed to live in those.

Do you have good hours where you could work on the computer or phone? A lot of at-home work pays lousy, but if you can put in the hours, and keep your expenses down, it can be enough. A lot of the work allows you start and stop work anytime. I feel better in the middle of the night, and use those hours to work sometimes.

 

[Gingergrrl]

feel free to pass on the info of that lawyer.

I will send it to you via PM shortly. Best wishes to you moving forward.

 

[Jennifer J]

....

thanks for your kindness and ideas.
Im a US citizen but outside the US right now.
I could probably get a plane ticket back but would not have enough money to live even frugally.
I need care from someone regularly as although i can physically move around things are only getting worse.
I only get out of bed because I need exercise and can't sleep if I don't move around.
On top of this my spine is starting to hurt from lying down so much.
I only have enough energy to shower once every couple days.
I can't even remember when I posted this original thread but it's taken me this long to reply and I'm still extremely exhausted typing this now. that should give you some idea of my energy levels.
cooking is too much. sometimes I just fall asleep on the floor because I can't make it to the bed
Im coherent but I notice my memory going also
going out in public, forget it. the stress and anxiety is insane, not to mention the racism, ignorance and general lack of acceptance of the people in this country is way too much. I don't get how even healthy people from other countries can harmoniously live here. maybe they can't either. anyway, this is a sub-topic that I should probably ask for more advice on- how people with CFS\ME deal with going out in society.

I have no family or friends who are willing to help and only about 8 weeks left on my visa here.
If I go back to The US, which I really don't want to do for a variety of reasons, I have nowhere to go and would be homeless. given that I can only make it to the grocery store maybe once a week and Im pretty much living off delivered goods and convenience store food when necessary, homelessness would just land me in death. couldn't do it and wanting to regain my health.

I don't think this is a viable option with my current health but if I had my own place and garden and could live off the grid I could possibly survive, but that's about it. Honestly I don't think I have the energy but what do you do in my situation?? fuck if I know.
I want to get better but this may be my only option for now. but then i would probably need someone to do all the research and actually make it happen for me so that's probably not gonna happen. was researching about yerts a while back. still keeping my mind open.
however you mentioned someone posted about free land they had in New England a while back. any more info on that post?

thanks again
Andy

thanks to everyone who participated in this discussion.

all in all what everyone seems to be saying more or less is, "if you are not already financially well off, you will struggle with this disease and lifestyle until something out of your control changes." I just don't have the energy left to keep suffering day in/day out while being ignored, ridiculed and even aggressively confronted at times. let alone living in foreign countries/cultures and having to be the subject of racism whenever I leave my house just so that I can afford one.

I hope I won't actually have to do anything physical to end this shit, and will continue my health protocol and other alternative holistic therapies I've been doing hoping some improvement comes, but I don't see a lot of hope from where I am. I will keep praying and asking for answers/guidance.

Feel free to pray for me....

...and before I sign off, just let me give an idea that I haven't seen yet- pay it forward.

if you, or somebody you know, has suffered from CFS/ME and has overcome and regained their/your health, do something to help someone else until they get better also. it's pretty obvious the system doesn't give a fuck about us and that the only people who understand what we're going though is, well, us. in the end, each other is all we may have for hope.

one other idea is to try to get organizations involved or start them yourself if you have the energy to create some type of basic, cheap, easily accessible and easy-to-build shelters/homes specifically for people like us. this could eventually snowball into a solution for all people with disabilities/homeless, etc

although these are not things any of us could probably do individually, we might be able to do something together or at the very least, pitch the ideas to people who are caring for us who would be willing to get the ideas rolling on our behalf.

I wish you all the best and may we all find an easy and comfortable way out of this hell.

One Love

@PR family, does anyone know how much the general relief is in their areas of the country or elsewhere that may be able to sustain Andy until he can get disability? Also, where it's cheaper to live or there would be more options for someone in Andy's position? Does anyone know of a situation or have any kind of place to hold him over?

Here in my city in Southern California General Relief is only ~$234 a month, they don't want you to have more than $5 to your name, and your rent needs to be less than $234 or free. You can't be getting any money from elsewhere to make up for the rent difference. (Shared rentals here are much more than $234.) I think food stamps is around $180 a month. (This is what it was 8 years ago, I'm sure it hasn't changed that much.)

Thanks, everyone for anything you can do.

Hi, @enginewitty (Andy) . I'll write you more later when I can. I'm so sorry you are going through this. I'm so sad that you and others have to suffer and are not getting the help that we need. It makes me mad, too. Hang in there. I'm thinking of you. Some one here hopefully knows of a situation or town that may work for you. I'll search for the offer I saw on PR a few years ago for you. I think it was he had some land and the living would be somewhat rough from what I remember. Not sure, where it all stands now. I know it's scary and hard. Please hang in there.

 

[SickOfSickness]

I'm sorry Andy, when I wrote my last post about working from home, I didn't remember your original post about how little energy you have. Jennifer has reposted your original, so I re-read it.

I have heard about the free land in the northeast, but in order to get it, you have to be willing to build a house on the land soon. I think they would make you prove your finances before you get the land.

Do you know if you are very sensitive to mold? If you are, then it limits your options. On the plus side, if you are sensitive, moving to a dry climate could make you a lot better. Some people go from being very sick to being good enough to care for themselves.

I think your best option is to get on SSI, Medicaid, and food stamps. I can PM you some pointers on getting approved for SSI quicker. It is still hard to live on SSI income, but it is a lot better than without.

I think that if you don't get approved for SSI, you may need to get hospitalized just to have a place to sleep and have some nutrition, but I would be worried about what medications they might give you.

Or be basically homeless, but maybe you can find a situation that is not quite as bad, where you at least have a roof and walls. How much money do you have left?

You are welcome to PM me anytime about anything. I am on here almost every day, and sometimes more than once a day.

 

[Jennifer J]

@PR family, does anyone know how much the general relief is in their areas of the country or elsewhere that may be able to sustain Andy until he can get disability? Also, where it's cheaper to live or there would be more options for someone in Andy's position? Does anyone know of a situation or have any kind of place to hold him over?

Here in my city in Southern California General Relief is only ~$234 a month, they don't want you to have more than $5 to your name, and your rent needs to be less than $234 or free. You can't be getting any money from elsewhere to make up for the rent difference. (Shared rentals here are much more than $234.) I think food stamps is around $180 a month. (This is what it was 8 years ago, I'm sure it hasn't changed that much.)

Thanks, everyone for anything you can do.

Hi, @enginewitty (Andy) .... Hang in there. I'm thinking of you. Some one here hopefully knows of a situation or town that may work for you. ....I know it's scary and hard. Please hang in there.

Hi, Andy (@enginewitty). I sent you a PM a couple of days ago. I'm not sure if you noticed. I hope someone has been able to help you in some way or you've found a situation that might hold you over until you can get some help and disability. Hopefully someone in our community has some information, knows of something for you and sent you a PM, too.

 

[waiting]

Valentijn:

I have not been aware of, or told of this CPET test before. I will study it and bring it up to both my SSDI attorney and my CFS/ME IRL support group. Apparently no one seems to know anything about it, as it's never been mentioned before.

I have been long aware that my capacity for anaerobic exercise became much better after my CFS declined after the first year, but aerobic exercise does nothing but weaken me and sets off pain in my muscles, as well as the fatigue.

Thanks you all for pointing me to this CPET test. If I am "rewarded" SSDI, it will add a small,but nonetheless significant additional amount of money to my Social Security income, beyond what I would have been allowed at early retirement. .

@ggingues provided key PR (Phoenix Rising) links for you to read.

I thought you also might like to go to the source, the researchers who discovered the 2-day CPET. Contact www.workwellfoundation.org. They conduct the CPET testing & are based in California. You could also have your lawyer contact them with any questions.

If you are not close to California, they may be able to recommend someone in your area.

There is also Dr. Betsy Keller in Ithaca, New York. She has replicated Staci Stevens' (Workwell Foundation) findings and also conducts the CPET testing for patients.

Good luck!

 

[Rvanson]

Yeah, I'm a cynical guy as well, and doubt that Health Care industry really wants a cure for anything, that way they can keep the money coming in. I'm just looking for something to really help alleviate the symptoms, so I have a better quality of life!

How far off from 62 are you? Was thinking you were closer to my age of 46.

GG

I am currently eight months past my 60th year on this ball of rock right now. I was hoping to make it to 65 to
collect Social Security, but this disease that doesn't exist, decided otherwise. I hate not being able to work.

 

[Groggy Doggy]

I am currently eight months past my 60th year on this ball of rock right now. I was hoping to make it to 65 to
collect Social Security, but this disease that doesn't exist, decided otherwise. I hate not being able to work.

Its a numbers game. If you don't think you will live into your 80's and 90's, then it makes sense to take it early. Also, you need the money to eat and pay rent.

I agree with you; I miss working too. I had a nice job, income, benefits, co-workers, etc.

http://money.usnews.com/money/blogs.../why-you-should-collect-social-security-early

 

[Rvanson]

Its a numbers game. If you don't think you will live into your 80's and 90's, then it makes sense to take it early. Also, you need the money to eat and pay rent.

I agree with you; I miss working too. I had a nice job, income, benefits, co-workers, etc.

http://money.usnews.com/money/blogs.../why-you-should-collect-social-security-early

Indeed so. I miss working and my hobbies, which take energy I no longer have. I highly doubt I will live past 75. I dont mind it much, since I cant remember a time when I was afraid of Dr. Death, since I almost died as a lad. Can't do anything fun like I used to do, so it's going to be a welcome relief when the grim reaper comes a calling on me.

 

[svetoslav80]

A lot of patients do some part-time work, but many make under $100 a week.

I make just under $100 a week for a full time job. (net salary)

 

[Jennifer J]

Hi, Andy (@enginewitty). I was able to PM you again, another PM a few days ago, some more information. I'm not sure if you received or noticed it. I'm thinking of you and hoping someone has come through for you and something is coming together for you.

 

[enginewitty]

There are little communities like this around the country. It's called the "tiny house movement". Unfortunately they have a long waiting list as soon as they start taking names. Some people also do it illegally, for example, living in a rented office or storage space. There was an article about a couple in California living in theirs, and then a friend or two found out how much money they're saving, and now it's a lot of them. But they got kicked out of their original place because you're not supposed to live in those.

Do you have good hours where you could work on the computer or phone? A lot of at-home work pays lousy, but if you can put in the hours, and keep your expenses down, it can be enough. A lot of the work allows you start and stop work anytime. I feel better in the middle of the night, and use those hours to work sometimes.

nope. get exhausted just thinking about it. I've got a ton of ideas that could easily sell and make a good amount of money but product development and marketing them is not something I have the energy or mental power to do right now. I'm trying to "force" myself for lack of a better word to try and get some farming work here as my body is, although pretty broken in a lot of ways, relatively ok. I can still move more or less normally. but everyday I wake up, I don't. I'm guessing you can relate to that feeling. no matter how strong my intention, it just isn't strong enough to overpower my fatigue.

as for the tiny house movement, yeah that's basically the idea i was jisting at except more along the lines of emergency shelters. I've seen people with the idea to turn billboards into tiny shelters for people and also people who built homes that were literally the size of maybe 4 cardboard boxes, just enough to lay down in and sit up in, pallet homes, etc. something like that but on a massive scale. forget waiting for other people to do it. like you said, there's a long waiting list as soon as they start. someone from within this community is gonna have to step up. as you can probably tell, this another thing I'd like to get going but...

 

[enginewitty]

I'm sorry Andy, when I wrote my last post about working from home, I didn't remember your original post about how little energy you have. Jennifer has reposted your original, so I re-read it.

I have heard about the free land in the northeast, but in order to get it, you have to be willing to build a house on the land soon. I think they would make you prove your finances before you get the land.

Do you know if you are very sensitive to mold? If you are, then it limits your options. On the plus side, if you are sensitive, moving to a dry climate could make you a lot better. Some people go from being very sick to being good enough to care for themselves.

I think your best option is to get on SSI, Medicaid, and food stamps. I can PM you some pointers on getting approved for SSI quicker. It is still hard to live on SSI income, but it is a lot better than without.

I think that if you don't get approved for SSI, you may need to get hospitalized just to have a place to sleep and have some nutrition, but I would be worried about what medications they might give you.

Or be basically homeless, but maybe you can find a situation that is not quite as bad, where you at least have a roof and walls. How much money do you have left?

You are welcome to PM me anytime about anything. I am on here almost every day, and sometimes more than once a day.

ok, thank you ^^ I will do that

 

[actup]

Enginewitty, the 2 day CPET is the only diagnostic test that SSDI will accept for immediate benefits for a pwCFS. I was approved for SSDI within two weeks of submitting my test results late 2010. I was not yet completely bedridden
( 2011) but needed 12-14 hours sleep/day and could run a few errands each week with minimal ability to cook, clean and shower. Only a handful of facilities offer this test and it's expensive.

The former Pacific Fatigue Lab( now Workwell Foundation operating two California labs) charged $2000 with only $99 covered by my insurance plan ( out of system). Severely ill ME/CFS patients probably face a very bad crash or long recovery time post testing. I had a two to three week recovery period ( from post test 10-15% of my pre illness function level back to my pre test 30% level). Definitely worth it for me.

I had just left my job and had the money but now six years later could not have afforded the test. Considering the truly awful poverty levels many pwME/CFS are at maybe "crowd funding" should be considered. This test btw will reliably pick up any abnormal PEM values (anaerobic metabolism with minimal or no exertion).

It's criminal that this testing is so difficult to get yet it's the only test considered valid by SSDI for an ME/CFS diagnosis. Otherwise you are looking at 2-3 years of documentation and appeals or more.

Here are some links to sources I found helpful incl PR threads.

http://forums.phoenixrising.me/index.php?search/25290825/&q=2+day+CPET&o=date