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[CFSNZ]

@SOC and @Sushi. That's unfortunate.

I know the USA isn't world renowned for it's government support, but any idea why the charitable / not-for-profit sector doesn't step up?

 

[Sushi]

any idea why the charitable / not-for-profit sector doesn't step up?

The US is good with organizing emergency charitable support services, like after a disaster, but doesn't really have a history of providing long-term support for any group of people.

Sushi

 

[SOC]

@SOC and @Sushi. That's unfortunate.

I know the USA isn't world renowned for it's government support, but any idea why the charitable / not-for-profit sector doesn't step up?

Our country, both government and non-profit sectors, has a strong focus on providing emergency charitable support for people throughout the world. It's also big on helping developing nations with high-profile health issues like HIV/AIDS, ebola, and so on. This is not a bad thing. Day-to-day support of our own citizens with long-term health issues has not been our strength, which is a bad thing. Unfortunately, there's only so much money to go around and our priority has been more in helping others than helping ourselves.

The US ranks number 1 in the World Giving Index. We're a generous people, we're just not into providing local social services, it appears.

I suppose both our government and our charities are rather too fond of trying to look good by playing big brother to the rest of the world. Providing home services to our own chronically ill citizenry just isn't glamorous enough, it would seem.

 

[aimossy]

It is really sad the social services situation, most places that have them are facing constant cuts. NZ isn't perfect, not by a long shot. You are in for a battle for any home help or meals etc or domestic help. Benefits don't cover real living costs. I live with family. I don't know how many survive here without family or living alone. I kept wondering how people in the states survive at all if they cant work or get insurance cover, it is a bit confusing to me, so living with family if your lucky to have good relations makes sense in this context to me. Imagine being homeless with ME. I bet it happens and happens here. Horrible to imagine, the situations many could be in. I think chronic illnesses are neglected across a whole range of sectors in most countries.

@SOC and @Sushi, I have read Pandora run a meal delivery? I don't know how that works and have no idea where Pandora are based but maybe it's emergency type, offered relief, like SOC is sort of talking about? Do you think they could have a go over there using a different model of charity to the usual and could it work? Getting organised is tough for us at the best of times though let alone in an environment where it would be so different, I guess. We have church type orgs as well which Sushi reminds me of. I do wonder once the big USA machine actually gets behind ME/CFS it could heat up with a roar. It seems such a big machine when they actually get cracking really onto something. But that could be wishful thinking on my part.

I am always impressed with how the UK form these armies of fundraisers for their charities and family members doing marathons, or some challenge. I think it is neat thing.

 

[SOC]

@SOC and @Sushi, I have read Pandora run a meal delivery? I don't know how that works and have no idea where Pandora are based but maybe it's emergency type, offered relief, like SOC is sort of talking about?

Pandora is a long way from me and even farther from @Sushi. The US is a mighty big country.

Once my daughter graduates and moves away next month, I'm on my own. I have no family within a thousand miles. My friends moved away or faded away during the years I was bedbound and housebound. If I become housebound again, I will have to resort to boxed and canned foods I can order from Amazon. I'm not sure what I'd do to get meat. I guess I'd have to live on beans.

Seriously, though. If I relapsed longish-term, I would have to make some major life changes in order to survive. I would have to move -- a daunting thought when one can't even do self-care. I might have to beg family to take me in -- not a likely prospect. My situation would not be unique, in the US or in other countries. The social situation for single PWME is appalling. Some of us have social services or family available to help with activities of daily living, but many of us don't. I hope for all our sakes that the slowly increasing awareness of the plight of PWME will eventually change this shocking state of affairs.

 

[Gingergrrl]

By the way @Gingergrrl, sorry to hear you had to give up your career. I am in the same boat so know what a blow it is.

@CFSNZ Sorry for my slow response and I appreciate your kind words re: losing my career. I know that you and many others on PR can relate to this loss and how horrible it feels. I had a very successful career for 16 years.

I see you do some volunteer work yourself. Is that for CFS?

I did volunteer work all my life in addition to being an LCSW (licensed clinical social worker) as my career. At present I am too ill to do anything but volunteer on PR in a tiny way by posting birthday threads for members on their b-days (who make their b-days public.) I have also been doing a Prayer Tree on PR and try to help in any small way that I can but it is nothing compared to what I used to do and what I wish I still could.

I don't think they have anything like this in the USA @Gingergrrl ?

@aimossy, as others have said, there is literally no social services in the US for people with ME/CFS. There are amazing social services for other populations (i.e. for homebound elderly, for children, for people with cancer and HIV, for developmental disabilities, for mental illness, etc.) However, there is nothing for ME/CFS and people with our illness just fall through the cracks of society in the richest nation in the world.

And I am not saying that people in those other groups should not receive help because they absolutely should. I worked in mental health for 12 years and the lack of available services vs. the people who needed them was appalling. So many groups do not get the care that they need and don't get me started on the cost of medications. But for ME/CFS it is abysmal and there are no support workers or anything of that kind and I live in a major city. I am very, very lucky to have support from my family and friends or I literally do not know how I would survive. Actually I am certain that I would not survive without them.

 

[CFSNZ]

Just uploaded a video of Dr Klimas talking in NZ. It's from 2011 but contains some great content

Enjoy!

 

[Little Bluestem]

I'm rather late to this party, but I wanted to say what an amazingly good idea having field workers dedicated to a particular infirmity is. {Uhm, am I supposed to wind up with a verb at the end of my sentence?}

Here in my rural part of the country, we do have meals-on-wheels. That is meals delivered to housebound people. It is one meal/day, although it may be enough to provided leftovers for a second meal. I don't know what is required to qualify.

 

[CFSNZ]

Thanks @Little Bluestem! The field worker model has been quite successful in other parts of the country. It helps so much to have someone who 'gets' CFS check in on you and advocate for you.

I hope you guys in the USA get a field worker one day. Though the meals on wheels sound quite good. Are they healthy and reasonably priced?

 

[Little Bluestem]

I think in some cases the Meals-On-Wheels are free. I am not sure about the cost otherwise. I hear they are fairly healthy, but a little starchy because that is what they can afford.