URGENT: Need someone who can assist in New Mexico

[Thebirdman333]

This is all a plea from one of my dearest ME friends. I care for them greatly, and it would mean the world to me if someone could help them, they are in dire need...


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They write:

A plea from a person suffering from very severe myalgic encephalopathy or M.E.

The limits imposed by my illness are preventing me from fully caring for myself in the stressful environment of my home. Stability, consistency, care and compassion are necessary as a foundation for recovery, and they are not available in my living situation. This contributes to the decline in my health, which increases stress in the home, it’s a cycle that I need help to escape.

My father works long hours, and my mother’s health is compromised by four autoimmune diseases. They are not able to manage the organizational, emotional, and physical challenges of my condition themselves. My parents are using denial as a coping mechanism to avoid being overwhelmed, this has left me struggling to meet my basic needs. Our home is chaotic, and there’s been no progress made to improve matters.

I fear for my health while living here. The situation is desperate, as I’ve become unable to sustain both the effort of managing my illness and household affairs. With the lack of official treatments for this condition, State wards or nursing homes are not ideal and while I have begin processes with social services it is extremely arduous and slow.

My intuition is that a better environment will allow me to at least improve to a more autonomous level. A private nurse or caretaker with a high level of empathy and organizational skills would be a blessing. Given the predicament I believe my family would support a move financially, and I am in the process of applying for disability aid. I hope to regain my independence once I’m able to focus on my health, without the constant stress of living in my current home.

If you or you know of anyone who can help me in these regards please let me know.

Central Northern New Mexico, USA


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Please if you can help DM me ASAP

Many thanks,

 

[vision blue]

I dont really understand what they are asking for. Money but without coming out and saying it? That does not seem fair to play on heart strings and ask for money in these forums or asking for something else but not clear what or why?

Is this the same person in new mexico as last year with the toxic home?? That was so dire and urgent then that i would think if nothing had changed they would have perished by now.

 

[YippeeKi YOW !!]

I dont really understand what they are asking for. Money but without coming out and saying it?

I agree, it's not clear, and I'm a little at sea myself on this.... am also confused as to why this petition is being made thru a third person, and not more directly, but we all approach things differently, and there must be reasons that we're not aware of ...

But an excerpt from the unnamed person making the request seems to state that their family would support the move financially, so now I'm really confused ....

Given the predicament I believe my family would support a move financially,

Is this the same person in new mexico as last year with the toxic home??

I had the same thought, and I believe that it is. It's heartening to know that they've survived the bad air issues, and I'm really happy to know that they're OK ....

EDIT .... to add another of what passes for a thought with me ....

 

[frozenborderline]

This is all a plea from one of my dearest ME friends. I care for them greatly, and it would mean the world to me if someone could help them, they are in dire need...


-------

They write:

A plea from a person suffering from very severe myalgic encephalopathy or M.E.

The limits imposed by my illness are preventing me from fully caring for myself in the stressful environment of my home. Stability, consistency, care and compassion are necessary as a foundation for recovery, and they are not available in my living situation. This contributes to the decline in my health, which increases stress in the home, it’s a cycle that I need help to escape.

My father works long hours, and my mother’s health is compromised by four autoimmune diseases. They are not able to manage the organizational, emotional, and physical challenges of my condition themselves. My parents are using denial as a coping mechanism to avoid being overwhelmed, this has left me struggling to meet my basic needs. Our home is chaotic, and there’s been no progress made to improve matters.

I fear for my health while living here. The situation is desperate, as I’ve become unable to sustain both the effort of managing my illness and household affairs. With the lack of official treatments for this condition, State wards or nursing homes are not ideal and while I have begin processes with social services it is extremely arduous and slow.

My intuition is that a better environment will allow me to at least improve to a more autonomous level. A private nurse or caretaker with a high level of empathy and organizational skills would be a blessing. Given the predicament I believe my family would support a move financially, and I am in the process of applying for disability aid. I hope to regain my independence once I’m able to focus on my health, without the constant stress of living in my current home.

If you or you know of anyone who can help me in these regards please let me know.

Central Northern New Mexico, USA


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Please if you can help DM me ASAP

Many thanks,

I did mold avoidance and lived in New Mexico and healed there for a bit. I even know of a few decent doctors although it's not as good or big of a medical system as other states.

If this person is open to it i can share both contact info of other people with chrinic illness in new mexico to conneft with for a support system, and my notes on what areas are toxic and what are good ! Although those notes are two years out of date and maybe the air got worse in those two years , what with all the fires and fire retardant on top of the normal toxins. But it still may be helpful. I can also share those few doctor recs. Just direct message me and I'll try and remember. I'm doing worse than I was in New Mexico, which had great healing air outdoors at least (I never found a good house I can afford). Or apartment. Too moldy. I don't know if this person is open to mold avoidance but central and northern New Mexico have some GREAT places as well as some bad. So it could mean try8ng that healing method without moving across the country like some people do. I couldn't find good air in the whole county around where I grew up although I didn't try most of my state , I also tried locations beyond my county and even other states in New England and it was tougher than in New Mexico to find good air. So some people are in better areas

Downside is not being lucky for me/cfs docs. For that one of the major coastal cities would be best. But there are a few docs doing specialized stuff that would overlap. If they're open to dealing with toxins I know New Mexico and I know people who are there currently and may know it even better.

I dont really understand what they are asking for. Money but without coming out and saying it? That does not seem fair to play on heart strings and ask for money in these forums or asking for something else but not clear what or why?

Is this the same person in new mexico as last year with the toxic home?? That was so dire and urgent then that i would think if nothing had changed they would have perished by now.

A lot of toxins don't kill people, 5hey cause long term illnesses that end up having "low grade" (as in not severe enough to cause encephalitis or sepsis) inflammation and hypometabolism. But that doesn't mean those toxins and those illnesses aren't severe. In my case they caused actual permanent damage to my spine and I needed three surgeries. And my immune system has never been rhe same. So I think we should consider that this person could be quite truthful in that their situation was urgent but still have survived. Hypometabolism as an adaptive response to oxidative stress from environmental toxins or infections is one of the main theories of what causes me/cfs. It's plausible that we may be both lucky and unlucky in that our bodies sacrifice quality of life to keep us alive whereas others exposed to these toxins may have heart attacks or things like that. Naviaux and Paul Cheney have been onto this theory roughly.

Anyway I don't think we should be angry at someone for asking for money. I myself ran afoul of the rules here asking for money bc I was so desperate. It's not malicious to do. Not all of us have enough caregiving support. I wonder how Whitney would survive for example, if he didn't have his wonderful parents supporting him , and if they weren't intelligent and fierce advocates for him who are upper middle class and live in an area with proximity to the mexical and scientific institutions Ron works at. Whitney has a horrible life, but he may not even be alive without caregivers. How can someone with severe ME feed themselves in a situation like that?

Anyway I'm not saying it's fine to ask for money, it's breaking the rules, but we get truly desperate with this disease and rhe worst thing I could say about someone with this illness bothering me for money is that it might be annoying (especially since I too need money). But not that it is really immoral or anything ...

 

[frozenborderline]

My intuition is that a better environment will allow me to at least improve to a more autonomous level. A private nurse or caretaker with a high level of empathy and organizational skills would be a blessing. Given the predicament I believe my family would support a move financially, and I am in the process of applying for disability aid. I hope to regain my independence once I’m able to focus on my health, without the constant stress of living in my current home.

If you or you know of anyone who can help me in these regards please let me know.

Central Northern New Mexico, USA

Anyway I see that yes they do want help getting to a better environment.

They should contact me or maybe Simcha MacGregor on Facebook since I'm so sick now (surgery failure plus moving to a bad place) that I can't always respond promptly. New Mexico was a treasure trove of good air last time I checked but finding a house with good indoor air is far harder, especially in a remote area with great air.
They could try Bryan rosner or Lisa Petrison. Or even Ana Harris although she's quieter on social media now. Her and Brett have good info on new mexico.
.I can't help with money though. I can give advice on ways to try and get it, I can talk about ways to raise money while doing mold avoidance, and cheap ways to do mold avoidance, but I cannot give it. I have dealt with a lot of the stuff with family they mention. It's tough. I imagine almost all of us have dealt with something like that. I'm so amazed and jealous when people have perfectly supportive parents and healthy families despite the disease.

 

[frozenborderline]

https://soundcloud.com/headlessyouthpodcast%2Fgo-west-young-man This has got some good info on new mexico and I can put you in touch with the person interviewed in it who talks about healing in new mexico

 

[Tammy]

dont really understand what they are asking for. Money but without coming out and saying it? That does not seem fair to play on heart strings and ask for money in these forums or asking for something else but not clear what or why?

Why put a negative spin on something that seems pretty innocent to me. Even if it is a longshot , does it hurt that someone is reaching out for help? I don't think anyone is trying unfairly to play on heart strings. A member of this forum with severe CFS/ME is trying to help a dear friend with severe CFS/ME.

The one thing I regret when I was severe is that I didn't reach out for help.

 

[frozenborderline]

Even if it is a longshot , does it hurt that someone is reaching out for help? I don't think anyone is trying unfairly to play on heart strings. A member of this forum with severe CFS/ME is trying to help a dear friend with severe CFS/ME.

Technically it is against group rules to ask for money here but I agree with your sentiment. The reason it's against group rules is bc We are mostly all broke and sick and are not working.

Even in groups that let you do it , posting a fundraiser for me/cfs to fellow me/cfs patients is usually useless, it's like blood from a stone.

I've been through all that and am still in it, asking for caregiving and financial qnd cognitive help , but it's just too hard to get that from fellow desperate sick people.

I don't think there's anything wrong with people trying but they should know if they do that it's not very useful.

It's sad there aren't really y any me/cfs charities. I've been homeless and haven't been helped by ammes. They were curt with me too. I wanted to find relatively mold free housing, I have severe mcas. Anyway, they're maybe the only charity for us and they barely have any funds.

 

[vision blue]

@frozenborderline @Tammy I guess I do not see it as innocent in part because it seems like the identical plea and desperation as a whole year ago. From an innocent post, id expect the poster to say hey remember us from last year ? Heres the help we got then and heres whats happened since and why things arent completely better - why nothing like that? Instead, The implication is its a brand new case. Thats the same thing a scammer would do. (New cases always get more $$) And so thats one thing that does not pass the smell test

Also, Inremember from last year there were wonderful sincere suggestions from caring members on how to get out of this - really good ideas from tents to specific other locations and help groups. From what i can tell , these sincere suggestions were thrown out- thats not what the posters wanted is my guess.

Yes mold can take a while to kill BUT dont you remember the desperation from a year ago. It was im going to die NOW Its toxic, need IMMEDIATE relocation. The generous thing to say is well they were just wrong and thankfully did not die as fast as they thought . The other interpretation tho is the desperation is so people would say OMG that poor person i guess i better give money NOW.
Sort of like the Nigerian prince in a dealerate position who needs your help NOW. Its a grifter trick so you dont have time to think but instead engage the emotional caring panic circuitry.

I am all for asking for help. Im also all for giving help. But there needs to be some kind of screen so that no one is taken in. If PR were to host a “help desperate members in need” fund , and mods and other volunteers designed (simple) application form and rules and then read the applications, id be happy to donate money to such a cause.
But this is the second story on PR that has tripped the radar.

 

[frozenborderline]

@frozenborderline @Tammy I guess I do not see it as innocent in part because it seems like the identical plea and desperation as a whole year ago. From an innocent post, id expect the poster to say hey remember us from last year ? Heres the help we got then and heres whats happened since and why things arent completely better - why nothing like that? Instead, The implication is its a brand new case. Thats the same thing a scammer would do. (New cases always get more $$) And so thats one thing that does not pass the smell test

Also, Inremember from last year there were wonderful sincere suggestions from caring members on how to get out of this - really good ideas from tents to specific other locations and help groups. From what i can tell , these sincere suggestions were thrown out- thats not what the posters wanted is my guess.

Yes mold can take a while to kill BUT dont you remember the desperation from a year ago. It was im going to die NOW Its toxic, need IMMEDIATE relocation. The generous thing to say is well they were just wrong and thankfully did not die as fast as they thought . The other interpretation tho is the desperation is so people would say OMG that poor person i guess i better give money NOW.
Sort of like the Nigerian prince in a dealerate position who needs your help NOW. Its a grifter trick so you dont have time to think but instead engage the emotional caring panic circuitry.

I strongly disagree with the cynicism.

I doubt this is any kind of scam. Maybe they want to ask for money , but saying you're in a difficult situation and asking vaguely about finding a way out is not a scam. Heck, I do it all the time. And I've been there , thinking I'm going to die from this. I've also had brain fog bad enough to repeat myself a million times. I wouldn't feel good if people went over my post like this with a fine toothed comb and found everything seemingly wrong with it when I'm just physically broken and asking for help.

If the person asks directly for help the mods will remove that post. I think there is close to zero chance of someone here being taken in by some kind of scam playing on sympathy

So yeah I just have to strongly disagree. And the thing about mortality is, this illness can get so severe without killing you, you'd think and wish you were dead a thousand times over. And I know that because that's where I'm at. I'm upset my body manages to stay alive when it doesn't have any quality of life left , when I can barely type this , when brain and spine is on fire and can barely think or move . I am not articulate in those situations. I wouldn't say the phrase "I'm going to die" bc I know the science but I probably would say that it's an emergency or something similarly urgent

 

[frozenborderline]

Why put a negative spin on something that seems pretty innocent to me. Even if it is a longshot , does it hurt that someone is reaching out for help? I don't think anyone is trying unfairly to play on heart strings. A member of this forum with severe CFS/ME is trying to help a dear friend with severe CFS/ME.

The one thing I regret when I was severe is that I didn't reach out for help.

Agree so much . We don't want to create an unfriendly environment

 

[frozenborderline]

Also, Inremember from last year there were wonderful sincere suggestions from caring members on how to get out of this - really good ideas from tents to specific other locations and help groups. From what i can tell , these sincere suggestions were thrown out- thats not what the posters wanted is my guess.

I know that people often have a hard time implementing things like medical trratment suggestions especially when brain fogged and without ideal help.

I literally didn't apply for disability for years bc I was too tired and brain fogged and nobody would do it for me, until someone did. That was starting when I was moderate, not even severe. Moderately "" I'll but I couldn't fill out a damn application to get ssi. I couldn't cook myself a meal. I'd probably have a hard time setting up camp even. You know, I personally have done hard-core mold avoidance with tents and sleeping on blm land , and sometimes in cars even in winter , since I've been sick, but I was only able to do it with a caregiver. Would I have been able to follow people's advice and get out on my own? You get trapped in loops from the brain fog from mold exposure and the fatigue , it's a known phenomenon in mold groups called "mold hold" people know they need to leave their house but don't. Bc rheyre just stuck. And I'm sure this happens with non mold based similar neuroinflammation issues.

So in short, I don't find it hard to believe someone who is sincere and acting in good faith could have a hard time following up on suggestions and advice despite being desperate. And I hope if that person is reading this they know , I'm rooting for you, I don't think this is a scam.

 

[vision blue]

@frozenborderline Why not then continue on the old thread? Why not refer to the request a year ago? Note that saying they are too sick to do so doesn't apply because its the friend who is posting here. Did he forget too?

If people are honest about what they need is money then theres less problem - wouldnt violate rules as long as theyre not asking. Eg only $1000 would get me out of this shite; i could hire a caretaker for a month with that and catch up on all the needed personal chores ive neglected and are piling up. Or if i had that i could afford a hotel to go look at another place to live in x town. Ive been desperate too and desperate on this list but that doesnt equate to assuming all pleas are genuine.

 

[Tammy]

I wouldn't feel good if people went over my post like this with a fine toothed comb and found everything seemingly wrong with it when I'm just physically broken and asking for help.

Exactly this.

 

[Tammy]

And I hope if that person is reading this they know , I'm rooting for you, I don't think this is a scam.

Ditto

 

[frozenborderline]

Why not then continue on the old thread? Why not refer to the request a year ago? Note that saying they are too sick to do so doesn't apply because its the friend who is posting here. Did he forget too?

I don't see what's wrong with making a new thread. This all seems overly serious. It's just a new thread, on a forum. Maybe they thought it'd be more likely to be seen.
It's no capital crime.

people are honest about what they need is money then theres less problem - wouldnt violate rules as long as theyre not asking. Eg only $1000 would get me out of this shite; i could hire a caretaker for a month with that and catch up on all the needed personal chores ive neglected and are piling up. Or if i had that i could afford a hotel to go look at another place to live in x town. Ive been desperate too and desperate on this list but that doesnt equate to assuming all pleas are genuine.

maybe they don't need money. Maybe they need help figuring out how to get resources. Maybe they need a caregiver. Maybe they're just confused. Maybe they do need money but don't want people here to give it to them but want help figuring out how to get it (eg fundraising advice, or looking g for charities , or advice getting on welfare). I agree the Ops question is a bit vague but I disagree with the assumptions filling in the gaps here, they're the definition of uncharitable.

 

[YippeeKi YOW !!]

Anyway I don't think we should be angry at someone for asking for money. I myself ran afoul of the rules here asking for money bc I was so desperate. It's not malicious to do.

No one said it was malicious.

But it does seem to run the risk of degrading this site, and turning it into a sort of open season hunting ground for exploiters, much as we like to think that there are none in these threads, who might want to feed on the goodwill and kindness of the members here, all of whom know the horrors of this illness and respond with the concern and empathy born of that knowledge.

If the person asks directly for help the mods will remove that post.

It depends largely on what kind of help they're asking for, and how.

I think there is close to zero chance of someone here being taken in by some kind of scam playing on sympathy

I disagree. I've previously observed apparent attempts to turn that empathy response to someone else's advantage in these threads, usually but not exclusively thru the extolling of various treatment protocols and specific brands of supplements.

One of the things the attritions of this illness increases in many of us is deep empathy for fellow-sufferers, and the need to help others here, where and how we can. It's pretty much what this site is built on, reaching out to other members with knowledge, input, understanding, and support.

I wouldn't feel good if people went over my post like this with a fine toothed comb and found everything seemingly wrong with it when I'm just physically broken and asking for help.

Given the vagueness of the requests, and the confusion created in some of us which that vagueness engendered regarding what it was we were being asked for and how we could help, I think it's unfair to characterize it in this way.

We don't want to create an unfriendly environment

We absolutely do not.

But I think that we also probably want to protect this site, which is a genuine lifeline for many of us (myself included), from the kind of exploitation that would reduce its stature and reputation, both here and in the wider ME community, as well as its value to its members.

I don't think that asking for clarification regarding what's actually being requested crosses either an empathy or a charitability line.

 

[frozenborderline]

Given the vagueness of the requests, and the confusion created in some of us which that vagueness engendered regarding what it was we were being asked for and how we could help, I think it's unfair to characterize it in this way.

I don't have issues with people asking for clarification and I agree the original post is a bit vague. I DO have issues with people going further than asking for clarification and inferring bad faith and impugning the motives of the person involved without knowing more than that they were vague about a request for help.

This is a distinction. Fine to ask for clarification , but to start speculating about this person being a scammer immediately and in a very uncharitable way makes me very uncomfortable. That's a different thing.
Wouldn't it make more sense to simply say "what do you specifically need" and wait for their motives to be elaborates on rather than to immediately jump to worst case scenario? If I was that person I'd feel very uncomfortable participating in the forum now.

You think scamming is a risk but the moderators have control over anything that outright asks for money and they are fairly active. I don't think there have been major cases of people successfully scamming anyone here. And given how there are basically no me/cfs charities (ammes has a tiny budget and has turned away many people who are seriously ill and poor ) of any note , I think a bigger risk than getting scammed is turning people off asking for help.

 

[YippeeKi YOW !!]

I don't have issues with people asking for clarification and I agree the original post is a bit vague.

The original post is more than " .... a bit vague ...", it's almost completely opaque .... It practically begs for clarification ....

Fine to ask for clarification , but to start speculating about this person being a scammer immediately and in a very uncharitable way makes me very uncomfortable.

I think that the poster you're referring to was explaining their own reasons for wanting more transparency about what was being requested, and why ....

I don't think there have been major cases of people successfully scamming anyone here.

I've already made my statement about this, so I wont rehash that, except to say that things slip thru the cracks, as the mods would probably be the first to admit. They're incredibly good, but they're not omniscient or omnipresent ....

I think a bigger risk than getting scammed is turning people off asking for help.

I'm not sure how asking for clarification of what kind of help is being requested constitutes " ....turning people off askng for help ...".

 

[frozenborderline]

I'm not sure how asking for clarification of what kind of help is being requested constitutes " ....turning people off askng for help ...".

I'm not referring to asking for clarification. There were multiple instances of people openly (not privately, not messages to the moderators, but openly) asking if this person was scamming , saying their post was fishy, etc. Jumping to the worst possible conclusions. What harm would be done by keeping those conclusions to oneself and simply asking for clarification?