help for CFS from abroad. no time, no income, no energy, no insurance, no help

[engiknewitty]

I'll try to keep this as short as I can to help anyone interested in expressing their ideas.

I have had CFS for 10 years. It happened just before going abroad. It has kept me from working enough to get back to my home country. I have been mostly dependent on girlfriends, savings and part-time jobs. All of which are now no more. I have no energy and regardless of what I've done, symptoms have not improved. No doctors will recognize there is anything wrong, no friends or family will help. Few will listen seriously and no one will get involved. I'm now out of time. I have tried asking for help from numerous sources and everyone has left me hanging. I have 2 weeks left on my visa, no money, no ability to work, no energy, no insurance, no way back to my home country, no home to go to, no one who will help and I can't help myself.

the only options I see at this point are get deported back to my home country into homelessness which I can't do from a health standpoint. I need medical help and can't get it. end result, more suffering until either a miracle occurs (up until now in my life experience, about 0% probability) or death from starvation, not enough water, etc. or suicide. None of this possibilities I'm interested in but I can't think of any other options left.

If anyone out there has dealt with a similar situation or thinks they can help, my ears are wide open.

thank you in advance

 

[Gingergrrl]

@engiknewitty Wow, that is a tough situation and I am unclear from your post if you are in the U.S. or another country? If you are in the U.S. there may be some social service programs that can help you to receive food, shelter, and basic medical care. Although legally if you are going to be deported, I am not sure what can be done. In the U.S. there are also free legal aid services (but this risks drawing attention to your status if you are currently under the radar.) I am so sorry and will pray for the best for your situation.

 

[minkeygirl]

Where are you now and where is home? People need to know where you are to offer specific advice for those areas.

 

[engiknewitty]

I'm in Japan and "home" although I don't have one, my home country would be The US
thank you both for your replies

 

[WillowJ]

You might try contacting the US Embassy there; they might be able to help you get set up with emergency help. As @Gingergrrl said, there are social programs here, including for housing.

You can sign up for health insurance in the US outside of open enrollment by moving into a new area. I think Medicaid will now cover low-income adults even without proving disability (or having children or whatever), but I am not 100% sure. You could contact the state health insurance benefits advisor's office for the state you plan to reside in.

If you have no support system at all and have a choice where you get sent, I suggest picking a city large enough to have good public transport or paratransit service (whatever you're likely to need), good social services, and enough variety of medical offices that you can try many and find a good primary care doctor and whatever non-ME specialists you may need. As a plus, if you are close enough to get to a recognized ME specialist, that might be nice. Most of them take Medicare (though it will take a good primary care doctor and some time, to get approved for disability--I assume that's your temporary plan if you cannot work, though of course treatment restoring the ability to work would be better).

 

[Sidereal]

I'm very sorry to hear what you're going through. I don't know if this would be of any use in your current situation but one of the authors of the International Consensus Criteria for myalgic encephalomyelitis is based in Japan. I don't know if he/she sees patients but if they do an ME/CFS expert is far more likely to believe your symptoms and know how to document disability than random doctors.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

 

[brenda]

Hi

Just a few ideas, but perhaps Christian organisations might be able to offer you transport. The one I am thinking of in particular is

http://www.msf.org.uk/

http://www.msf.org.uk/country-region/japan

http://www.msf.org.uk/neglected-people

I am guessing they run from the US as well. They have ships and take medical help to third world countries so maybe you can get transported that way. They dock at various places to raise funds.

There will be other agencies who are regularly transporting missionaries etc and who might be sympathetic. I will ring them if you like.

 

[engiknewitty]

You might try contacting the US Embassy there; they might be able to help you get set up with emergency help. As @Gingergrrl said, there are social programs here, including for housing.

You can sign up for health insurance in the US outside of open enrollment by moving into a new area. I think Medicaid will now cover low-income adults even without proving disability (or having children or whatever), but I am not 100% sure. You could contact the state health insurance benefits advisor's office for the state you plan to reside in.

If you have no support system at all and have a choice where you get sent, I suggest picking a city large enough to have good public transport or paratransit service (whatever you're likely to need), good social services, and enough variety of medical offices that you can try many and find a good primary care doctor and whatever non-ME specialists you may need. As a plus, if you are close enough to get to a recognized ME specialist, that might be nice. Most of them take Medicare (though it will take a good primary care doctor and some time, to get approved for disability--I assume that's your temporary plan if you cannot work, though of course treatment restoring the ability to work would be better).

I've contacted the embassy and am waiting for their reply.
As for disability and social services, these things all take time, their is a process and from what I understand CFS is not really recognized as a disease so there is a good possibility I would be denied even after the wait. I'm really mainly just trying to figure out what to do RIGHT NOW as social services will most likely take more than 24 hours to kick in. In relation to your reply however, most people are recommending I say I have ME or Fibromyalgia but I don't have widespread pain all over my body. My primary symptom is unrelenting fatigue. Are you suggesting I apply for medicaid, etc. stating I have ME?

 

[engiknewitty]

I'm very sorry to hear what you're going through. I don't know if this would be of any use in your current situation but one of the authors of the International Consensus Criteria for myalgic encephalomyelitis is based in Japan. I don't know if he/she sees patients but if they do an ME/CFS expert is far more likely to believe your symptoms and know how to document disability than random doctors.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

thank you for that tidbit of information regarding an ME doctor in Japan. Although their clinic is too far to travel to, I did email them to see if they know of any doctors around Tokyo. That being said, I don't think I'll be in Japan much longer due to my health and visa situation.

So really what I'm looking for is emergency services that will help until I either regain enough health to be independently capable or until US social services kick in.

Any other thoughts are greatly appreciated. thank you so much!

 

[engiknewitty]

Hi

Just a few ideas, but perhaps Christian organisations might be able to offer you transport. The one I am thinking of in particular is

http://www.msf.org.uk/

http://www.msf.org.uk/country-region/japan

http://www.msf.org.uk/neglected-people

I am guessing they run from the US as well. They have ships and take medical help to third world countries so maybe you can get transported that way. They dock at various places to raise funds.

There will be other agencies who are regularly transporting missionaries etc and who might be sympathetic. I will ring them if you like.

this is another interesting idea. Let me get back to you on this as I don't have any more computer time left today.
thanks for your help

 

[Valentijn]

@engiknewitty - Benefits are awarded based on disability, not on the label. Many ME/CFS patients are able to get benefits in the US. It might be a fight however, but that's not unique to ME/CFS - rather it seems like they have an automatic denial policy, then things start getting approved in the appeals process.

It's stupid, harmful, and inefficient, but that's bureaucracy.

 

[engiknewitty]

@engiknewitty - Benefits are awarded based on disability, not on the label. Many ME/CFS patients are able to get benefits in the US. It might be a fight however, but that's not unique to ME/CFS - rather it seems like they have an automatic denial policy, then things start getting approved in the appeals process.

It's stupid, harmful, and inefficient, but that's bureaucracy.

yeah, that's what I'm getting at. It's great to hear that people trying to heal from ME/CFS do often get help from social services. But yeah, the time frame is what's hindering me. Most options people are giving me revolve around homelessness. This is like going from a tough situation to a tougher situation. I'm looking for some option that will do the opposite; move me forward into a healthier, revitalizing life. If there's any ideas regarding this from anyone, I'm all ears. In the meantime, with the little time I have, I'll look into the ideas everyone's giving out as well as my own.

Thanks everyone!

Oh yeah, I was wondering... is there any kind of service center that helps support people with ME/CFS, etc. who are looking to get better and need some type of immediate but temporary assistance?

 

[Gingergrrl]

Do you know where in the U.S. you are moving to as this can greatly help in narrowing down your search? Some social services involve living within a specific catchment area or zipcode in order to receive them whereas others do not.

 

[engiknewitty]

Do you know where in the U.S. you are moving to as this can greatly help in narrowing down your search? Some social services involve living within a specific catchment area or er to receive them whereas others do not.

wow, that's.. hmmm... as I don't have a "home" to go home to, if the embassy helps me get back, it would seem that anywhere in The US is a possibility. that being said, if disability benefits are based on where you live, I don't have the time or energy right now to research where I MIGHT be able to receive them so at this point I think the best thing for me to do is just listen to my heart and go where it feels good.

 

[Gingergrrl]

@engiknewitty I wasn't sure if you are an American citizen and might have family or friends in a certain area that you planned to return to. If it doesn't matter where you live, I would choose somewhere with the least expensive cost of living (cheaper rent, utilities, etc) or wherever the U.S. Embassy can help you land.

Federal assistance programs do not matter where you live but there are other private or state/local services that require living in a certain area or zipcode. Hope that clarifies better what I was trying to express last night and best wishes to you.

 

[engiknewitty]

@engiknewitty I wasn't sure if you are an American citizen and might have family or friends in a certain area that you planned to return to. If it doesn't matter where you live, I would choose somewhere with the least expensive cost of living (cheaper rent, utilities, etc) or wherever the U.S. Embassy can help you land.

Federal assistance programs do not matter where you live but there are other private or state/local services that require living in a certain area or zipcode. Hope that clarifies better what I was trying to express last night and best wishes to you.

yeah, someone else was saying the same thing. Thanks Gingergrrl

 

[Gingergrrl]

yeah, someone else was saying the same thing. Thanks Gingergrrl

Best wishes on getting this all straightened out. And I was trying to figure out your screen name for days and just got it. It is ingenuity right? Very clever!

 

[WillowJ]

I've contacted the embassy and am waiting for their reply.
As for disability and social services, these things all take time, their is a process and from what I understand CFS is not really recognized as a disease so there is a good possibility I would be denied even after the wait. I'm really mainly just trying to figure out what to do RIGHT NOW as social services will most likely take more than 24 hours to kick in. In relation to your reply however, most people are recommending I say I have ME or Fibromyalgia but I don't have widespread pain all over my body. My primary symptom is unrelenting fatigue. Are you suggesting I apply for medicaid, etc. stating I have ME?

I was saying I think Medicare might cover you in any case (just for being low income), but I am not sure about that. You should contact the state health insurance benefits advisor as soon as you decide where to go (if you decide to return to the US; it didn't really sound like staying in Japan was an option, as I don't think non-citizens usually get benefits anywhere).

One should normally not say any diagnosis to social services, the embassy, etc., which was not diagnosed by a doctor. Just your symptoms and how they affect you.

 

[engiknewitty]

I was saying I think Medicare might cover you in any case (just for being low income), but I am not sure about that. You should contact the state health insurance benefits advisor as soon as you decide where to go (if you decide to return to the US; it didn't really sound like staying in Japan was an option, as I don't think non-citizens usually get benefits anywhere).

One should normally not say any diagnosis to social services, the embassy, etc., which was not diagnosed by a doctor. Just your symptoms and how they affect you.

okay, thanks for the clarification.

 

[Little Bluestem]

When you get deported, will they let you choose where to go or will they send you wherever they want? If you get to choose, I would suggest somewhere with a mild climate. I don't want to be a downer, but you may not get into a homeless shelter right away. Homelessness is up in the US and many shelters have waiting lists.