URGENT: Need someone who can assist in New Mexico

frozenborderline

Senior Member
Messages
4,405
I don't have your apparent energy for this, so I'm going to see myself out ... take care :):) :hug: ....
I'm bedridden and crashed so hard that I missed my appointment I dearly needed to go to bc I couldn't even get into the wheelchair with help. Last week.
I don't think you should assume how much energy people have , it comes across as snide.

Maybe I overuse my energy on this and it's a poor choice but this doesn't mean I have much energy, you don't know what what do most of the day...

The person who did the foia requests that helped with the pace trial reevaluation crashed so hard after that he never recovered. So he "had the energy" to do that complex request , and wessely snidely remarked on patients seemingly having the energy to argue with him or critique the pace trial. We can spend our energy poorly on an argument and crash bc of it later , This doenst mean we have energy

I'm spending my energy maybe poorly on this bc I want OP to feel safe. I don't want them to feel judged. I probably shouldn't bother. But this doesn't mean you can judge the amount of energy I have. I'll probably crash after it. And in fact I'm at the absolute lowest point I've been and having episodes of near paralysis . It's scary. So I don't appreciate people saying I have energy
 

Tammy

Senior Member
Messages
2,255
Location
New Mexico
I'm spending my energy maybe poorly on this bc I want OP to feel safe. I don't want them to feel judged.
I for one want to thank you for that. Many of us have certainly had our fill of feeling judged over the years. So unnecessary........... especially in a support group.

I'm sorry you are in such a low and scary place right now.

Sending a gazillion hugs your way.
 

vision blue

Senior Member
Messages
2,000
@frozenborderline I like that you have asked for clarification fom @Thebirdman333 . tSuppose i can find out from a moderator whether or not someone gave them money-would that help convince you that was the intent all along?

Empathy and giving people benefit of doubt can be great traits but can also be harmful. if you're so sure btw, have you put your money where your mouth is? Ie Have you donated money to them? Or your time to raise money for them? If your answer is well no im too poor and sick to do so then its super easy for you to say what you do because it costs you nothing! But now imagine youve helped someone to donate with your words and theyve been taken advantage of? Its easy to throw caution to the wind when you are not the one paying the price

Last year inwas trying to figure out how we might help when it became clearer in the course of the thread something may be fishy. Ive only had this radar go off once before in all the desperation on the forum. As ive mentioned, red flags include repeating the exact same request a year later, extra stressing of the urgency (again) and ASAP, no updates, request for PM, vagueness, replies to good suggestions that didn't make sense (ladt year)

I would say makes sense for NEITHER of us to assume its all legit or all not legit but really hope absolutely positively no one gives money or fund rsising efforts out of empathy or pity without doing serious due diligence.
 

frozenborderline

Senior Member
Messages
4,405
@frozenborderline I like that you have asked for clarification fom @Thebirdman333 . tSuppose i can find out from a moderator whether or not someone gave them money-would that help convince you that was the intent all along?

If they scammed someone sure. And I'm sure tbe moderators are ahead of you. They probably don't need any help. It's against rules to ask people for money here and it's unethical to ask for money even off forum under false pretenses. But I do know that me/cfs patients help share each other's fundraisers and the wealthier ones sometimes help each other out with money. It's only a problem if done under false pretenses. Like I say I need money for a caregiver and actually spend it on video games or methamphetamine, that would be scamming. I have had me/cfs community share my fundraisers and some of them have given me money for specific issues. It helped keep me from being homeless at times and it wasn't under false pretenses. Nor did I ask for help with that on this forum.
you're so sure btw, have you put your money where your mouth is? Ie Have you donated money to them? Or your time to raise money for them? If your answer is well no im too poor and sick to do so then its super easy for you to say what you do because it costs you nothing! But now imagine youve helped someone to donate with your words and theyve been taken advantage of? Its easy to throw caution to the wind when you are not the one paying the price

Lol why would I need to have donated to them to put my money where my mouth is. ? That isn't coherent. My mouth is saying let's give the person a chance to explain themselves. It's not saying "let's donate money to them". So I don't need to give them money to be consistent in my actions and what I am telling other people to do. Which is just to listen

I'm not sure of anything, and this just comes across as needlessly aggressive and personal. If you want to keep arguing like this I will just block. I don't need to get flak for supporting someone over something minor. I'm just trying to make this a welcoming place and provide a different viewpoint. But it's not something I'm deeply invested in. I have helped other patients in many ways. Usually not money as I haven't had a surplus of it in a long while. But it's odd that you should say then I don't have a right to talk about it or don't have skin in the game. Isn't a poor patient like me more vulnerable to being taken advantage of ? I mean I don't have my living expenses met but if I was "empathetic " or naive enough I could send someone my ssi deposit or something. So in theory I am potentially I the target audience for some scam. But I'm not worried about it. Are you saying wealthier patients are more at risk ? Again. Im not sure of anything. This patients totally could be a scammer. What I think is that we can wait for them to clarify before making overly critical assumptions preemptively. I dont see the harm in this. I don't think we have some need to preemptively police peoples behavior in an internet vigilante fashion . I think most people are satisfied with the mods and we don't need additional community policing. And again. I'm not "sure". I have epistemic humility. I think that anything could be true in this situation, that we don't know enough to judge.

Patients barely even donate to other people's legit, non scam gofundmes bc everyone is so desperate and broke in the community. I don't see a community at risk of being overly generous via funding another person with this illness. Maybe we're vulnerable to scams with miracle cures and alternative medicine. That's worth focusing on. But not some random person asking for help. That usually gets ignored Eben if it's legit.

I would say makes sense for NEITHER of us to assume its all legit or all not legit but really hope absolutely positively no one gives money or fund rsising efforts out of empathy or pity without doing serious due diligence.
Yes , I agree neither of us should assume the situation. But if you don't assume the situation why start jumping to conclusions about scams ? It seems you could start with a one sentence question like "I'm sorry I don't understand, what specifically do you need help with?" Then wait for an answer. Then you know more. There's no danger in that. On the other hand criticizing people openly on a thread where they ask for help risks pushing people away from the forum. Not just the person in question but people who see these kinds of aggressive posts and assume that if they ask for help and are brain fogged or make whatever perceived errors there are here 4hat they will get a harsh response.
 

frozenborderline

Senior Member
Messages
4,405
ive mentioned, red flags include repeating the exact same request a year later, extra stressing of the urgency (again) and ASAP, no updates, request for PM, vagueness, replies to good suggestions that didn't make sense (ladt year)
I've seen all of the above be a result of brain fog and so on. Or "mold hold". Someone feeling like they're dying and desperately wanting to get out but bogged down in details and stuck in loops. Or it could be a scam. But honestly, why does it matter enough that we should risk impugning an honest person's motives just to preemptively try and warn about this? You could say something privately to moderators, to keep an eye on this. You could ask for clarification without also saying this seems fishy etc.

I hate conversations like this and I only do them bc I would hate to be in someone's place honestly asking for help and have a whole forum seemingly against me.
 

vision blue

Senior Member
Messages
2,000
I too hate these conversations and also do them out of responsibility - in case forum members dont see anyone else raising doubts and therefore supress their own instinctive doubts

I did the things you suggest the first time this request was posted. Second time less likely to get benefit of the doubt or the patience. .

Mods are great but others have voices too and all the community can defend and is desirable to defend and protect whats been built here

I think we agree on some things at least but Doesn't bother me if you block me.
 

frozenborderline

Senior Member
Messages
4,405
So you think that this is more likely to save someone from actually losing money to a scam than it is to scare someone honest off the forum? And you think asking for clarification isnt enough because they did this one single time before ?


I mean , I swear I must have asked the same question ten times in a row in different ways , bc of brain fog and desperation, and also the fact I personally usually feel comfortable on this forum. Like I'm among friends.
 

vision blue

Senior Member
Messages
2,000
You should also be cautious when scammers tell you something is urgent and you must act right away.”

Resist pressure to act quickly. Scammers are counting on you to make a fast decision before you've had time to think it through. “
 
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