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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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2015 Heart Rhythm Society Expert Consensus Statement on the Diagnosis and Treatment of POTS

SDSue

Southeast
Messages
1,066
Instead of a system organized around how best to help people, it is organized around "for what services can we bill Medicaid and Medicare?"
Wow. I’m disappointed to hear this, but it doesn’t surprise me. It sounds like mainstream medicine - sometimes I think the main reason doctors take a history is to listen for key words that justify and document the need to run expensive tests for which they can bill.

The higher level thinking skills required to be a good diagnostician or social services provider have been replaced by keypads and artificial intelligence. Welcome to the brave new world.

In my years of illness, I’ve been forced to "look under the hoods" of medicine, law, disability, medicare, and more. What I’ve seen has made me rather cynical.
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
I’m disappointed to see Vanderbilt, Cleveland Clinic, and Mayo Rochester involved. Shame on them. The others don’t surprise me.
I am not surprised to see them involved at all! The parent groups for kids with POTS are full of families who've gone to these institutions and got the psychogenic heavy hand. The treatment plan often involves inpatient intensive forced activity "therapy", and coercing the parents to get tough with the kids because it's the best thing for them. F$&@ NO!
 

SDSue

Southeast
Messages
1,066
I am not surprised to see them involved at all! The parent groups for kids with POTS are full of families who've gone to these institutions and got the psychogenic heavy hand. The treatment plan often involves inpatient intensive forced activity "therapy", and coercing the parents to get tough with the kids because it's the best thing for them. F$&@ NO!
I’m disappointed to hear that. Really disappointed. All the physical findings and even the top guns still blame the patients? Abusive or sadist - it’s a fine line.
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl might be able to weigh in on this one?

Sue, I'm sorry I am not feeling well enough to read the article right now so not able to comment but didn't want to ignore you when you tagged me!

I've never had a social worker in the context of a healthcare provider. Maybe they are actually useful for something besides telling people "I can't help you".

I was an LCSW (social worker) and healthcare provider for 16 yrs before my illness ended my career. The first 4-5 yrs I did home visits and case management for elderly and disabled clients and every service we provided was free.

If there was a way to solve an issue for my patients, I did not stop searching until I found it and the final year of my career (working in a hospital) I put my employer and my patients above getting treatment for my own health.

I wish there was a way to stop making sweeping generalizations about an entire group of people. I find these comments so hurtful and don't know why I keep reading them (I guess this time b/c I got tagged into the post.)
 

SDSue

Southeast
Messages
1,066
I wish there was a way to stop making sweeping generalizations about an entire group of people. I find these comments so hurtful and don't know why I keep reading them (I guess this time b/c I got tagged into the post.)
I’m sorry for anything hurtful I said.

I taught my children that if they show up on time, are clean and dressed appropriately, have a good attitude, and actually do what they are charged to do, they will be ahead of 80% of their co-workers.

You, clearly, were in that upper 20%. (or probably 1% ;)) I hope there’s comfort in knowing that.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
I was an LCSW (social worker) and healthcare provider for 16 yrs before my illness ended my career. The first 4-5 yrs I did home visits and case management for elderly and disabled clients and every service we provided was free.

If there was a way to solve an issue for my patients, I did not stop searching until I found it and the final year of my career (working in a hospital) I put my employer and my patients above getting treatment for my own health.

@Gingergrrl - I wish we could make you 100% well and then clone you! It sounds like you did a fabulous job for your patients.

If only all ME/CFS patients (actually, all people, everywhere!) could get such kind and loving assistance when they needed it. I know that some ME/CFS patients have trouble finding the help that they need.
 

Gingergrrl

Senior Member
Messages
16,171
Thank you both and don't worry, I am just really ill right now and do not want to get into details but was in hospital for five days and to get tagged into a thread that is bashing my former career that I literally dedicated my heart and soul to was just more than I could handle last night.

I know that ME patients do not get the help that they need and I feel that it is a crime against humanity (I really do) and that issue is not what I was reacting to.

I think I just need to stick with PM's and emails and finding the board much too stressful for me right now. Maybe that will change when I am better and find a place to live and reunited with my family, I don't know. Right now it is too much for me and I apologize.
 

SDSue

Southeast
Messages
1,066
Thank you both and don't worry, I am just really ill right now and do not want to get into details but was in hospital for five days and to get tagged into a thread that is bashing my former career that I literally dedicated my heart and soul to was just more than I could handle last night.

I know that ME patients do not get the help that they need and I feel that it is a crime against humanity (I really do) and that issue is not what I was reacting to.

I think I just need to stick with PM's and emails and finding the board much too stressful for me right now. Maybe that will change when I am better and find a place to live and reunited with my family, I don't know. Right now it is too much for me and I apologize.
:( :hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug: :(
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
In my years of illness, I’ve been forced to "look under the hoods" of medicine, law, disability, medicare, and more. What I’ve seen has made me rather cynical.

It's like repainting an old wooden house. The more one scrapes at the loose paint, the more rot one finds hiding underneath. As far as I can tell, the rot extends throughout society. It's all part of the slowly crumbling Empire. Fun, ain't it?
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
I was an LCSW (social worker) and healthcare provider for 16 yrs before my illness ended my career. The first 4-5 yrs I did home visits and case management for elderly and disabled clients and every service we provided was free.

This is the kind of work my former partner did in Santa Barbara County. She worked with AIDS patients, which has very strict privacy laws controlling the release of information even within agencies. When she refused to violate those laws, her bosses destroyed her career, and she ended up in the psych ward with PTSD.

With the institutions we have today, people who try to do the right thing in spite of "The Rules" will be crushed every time. With the never-forget Internet it's now easy to crush dissenters for life. So people live in fear and just do what they're told. Just like in any police state.