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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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WANT TO BLOW $9000 in one DAY?

SaveMe

Senior Member
Messages
421
Location
the city
then go visit the CHENEY CLINIC. thats right 9k

Ill put it on my credit card and then work to pay it off. Oh wait, I cant get out of bed most days!
 

Navid

Senior Member
Messages
564
if u want gc-maf....find a doc to write prescription for you thru bcgli or david noakes and you are now 9k richer
 

SaveMe

Senior Member
Messages
421
Location
the city
Im sorry it could be as high as $10,000

9K? are u kidding me??

it states "Patient contact as well as chart review and letter writing or filling out forms are charged by the minute of Dr. Cheney’s time. The exact charge per minute is subject to change and is currently set at $11 USD per minute or $660 USD per hour. A typical initial two day visit will cost between $8,000 USD and $9,000 USD plus or minus $1,000 USD."
"Most insurance carriers pay at some level for our services but many pay nothing."

$660/hour.....wow! And I know the 9K is for two days, but this is really taking advantage of the sick. All other CFS specialists charge considerably less for their time--Dr. Petterson even!

What they are doing essentially is comparable to sneaking into a nursing home at night to snatch wallets and purses from the elderly. Its disgusting. :In bed::In bed::In bed:

So if you are not a celebrity with cfs then get the hell out of here!

If your going to see a specialist go see Klimas,Enlander,Petterson--the best in the field.
 

Navid

Senior Member
Messages
564
gc-maf it' s not just for cancer pts anymore

gc-maf is for cancer patients man :(

look up gc-maf string on board here....there are abt 10 ppl taking in hopes to recover their health. they all have me/cfs.

it is cheney's newest wonder drug and KDM is prescribing to his pts.
 

kat0465

Senior Member
Messages
230
Location
Texas
Im all for Dr's making a living doing what they supposedly love, hey it's america. we all should be lucky enough to make a good living working.

But i do however have a problem with Dr's who become filthy rich from very sick patients, who feel they have no option but to scrape up the $$$ for a little pinch of hope to have a fairly normal life!!!

it's not just cheney, he's just one thats in the spotlight, several years ago there was a dr in the next town over from me who supposedly was treating cfids. you bet i went to see him, and all i saw was a quack who was testing for allergies, and giving iv albumin( spelling) and charging 1500.00 A POP FOR THE INFUSION! Ins wouldnt pay, and My ins wouldnt even pay him for the allergy testing because i was informed there was a lawsuit between him and the Ins.

i didnt do the iv's( couldnt afford it)but i saw tons of people hooked up to poles and afterwards become severly Ill from the so called treatment. when i told my Now dr about this she was stunned, said that iv albumin had been shown to not work at all, and how was those people affording that!

and like i told her, when your this sick you will do anything to be better, even go in debt and loose your home or whatever else you have.

Not trying to badmouth anybodys Dr. but Im sick and tired of all of this!!! wheres the compassion really, and he knows what it feels like to be deathly ill..... Just sayin.

Kat
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
gc-maf is for cancer patients man :(

There are at least 20 patients on this forum taking GcMAF for ME/CFS (not all of them have added their names to the spread sheet). I am one of them. I pay 35 eu per weekly dose. I am hopeful! KDM has approx. 180 ME/CFS patients on it.

Sushi
 

Lynn

Senior Member
Messages
366
My insurance limited the hourly payments to just one hour of Dr. Cheney's time. I had to absorb the rest. Many of the initial tests were paid for. But that was over ten years ago and things have changed in the insurance industry.

Needless to say after seeing him for a few years, I was not cured. Not Dr. Cheney's fault. He is on the cutting edge of treatments. They just have not found the "it" that will cure us yet.

Lynn
 

SaveMe

Senior Member
Messages
421
Location
the city
There are at least 20 patients on this forum taking GcMAF for ME/CFS (not all of them have added their names to the spread sheet). I am one of them. I pay 35 eu per weekly dose. I am hopeful! KDM has approx. 180 ME/CFS patients on it.

Sushi

whos KDM ? ?
 

SaveMe

Senior Member
Messages
421
Location
the city
My insurance limited the hourly payments to just one hour of Dr. Cheney's time. I had to absorb the rest. Many of the initial tests were paid for. But that was over ten years ago and things have changed in the insurance industry.

Needless to say after seeing him for a few years, I was not cured. Not Dr. Cheney's fault. He is on the cutting edge of treatments. They just have not found the "it" that will cure us yet.

Lynn

thanks Lynn for your input.- I agree.
 

SaveMe

Senior Member
Messages
421
Location
the city
Im all for Dr's making a living doing what they supposedly love, hey it's america. we all should be lucky enough to make a good living working.

But i do however have a problem with Dr's who become filthy rich from very sick patients, who feel they have no option but to scrape up the $$$ for a little pinch of hope to have a fairly normal life!!!

it's not just cheney, he's just one thats in the spotlight, several years ago there was a dr in the next town over from me who supposedly was treating cfids. you bet i went to see him, and all i saw was a quack who was testing for allergies, and giving iv albumin( spelling) and charging 1500.00 A POP FOR THE INFUSION! Ins wouldnt pay, and My ins wouldnt even pay him for the allergy testing because i was informed there was a lawsuit between him and the Ins.

i didnt do the iv's( couldnt afford it)but i saw tons of people hooked up to poles and afterwards become severly Ill from the so called treatment. when i told my Now dr about this she was stunned, said that iv albumin had been shown to not work at all, and how was those people affording that!

and like i told her, when your this sick you will do anything to be better, even go in debt and loose your home or whatever else you have.

Not trying to badmouth anybodys Dr. but Im sick and tired of all of this!!! wheres the compassion really, and he knows what it feels like to be deathly ill..... Just sayin.

Kat

Damn, sorry to hear that. There is nothing you cherish that this illness cannot take way. nothing
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
whos KDM ? ?

Dr. Kenny De Meirleir in Brussels. His clinic is Himmunitas. He is both a researcher and an MD specializing in ME/CFS for over a decade. Lots of Board certified specialties and publications.

I traveled from the US to see him. He charges 70 eu for the first visit and 50 for subsequent ones. He is also in collaboration with Cheney and the other big name ME/CFS docs.

Sushi
 

SaveMe

Senior Member
Messages
421
Location
the city
Dr. Kenny De Meirleir in Brussels. His clinic is Himmunitas. He is both a researcher and an MD specializing in ME/CFS for over a decade. Lots of Board certified specialties and publications.

I traveled from the US to see him. He charges 70 eu for the first visit and 50 for subsequent ones. He is also in collaboration with Cheney and the other big name ME/CFS docs.

Sushi

thanks ill look him up.
 

Crappy

Senior Member
Messages
113
Location
TX
There is nothing you cherish that this illness cannot take way. nothing

I have used some powerful adjectives to describe this condition, but your statement was succinct and painfully descriptive. This slow miserable death has got to be one of the most sadistic ways to die ever concocted. Compounded by doctors who range from incompetent to just plain usurious; and a public who couldn’t be more apathetic toward us. I can’t understand it, but it is happening to us all, real time. We can honestly say we know what it is like to be openly discriminated against, while our government actively denounces discrimination, and claims to protect people from it. Hypocritical lip service.
 

SaveMe

Senior Member
Messages
421
Location
the city
you are right, crappy. Lets just keep praying, thats all we can do. right?

question 4 everyone

1. Exhaustion
2. Widespread muscle pains
3. Headaches
4. Brain fogs- (attn./concentration) can stare blankly for long periods of time, where did I park the car? (short term memory loss) A distinct shift in cognitive function during onset. Disorientation- lost in amusement park. Where am I? Metal fatigue. Sluggish thinking.
5. Excessive mucus in throat that I spit up
6. Sunlight sensitivity really hurts my eyes, tear up easily
7. Initial rapid, sudden weight loss during onset of virus
8. Loss of strength, (can’t make a strong fist)
9. P.E.M (bike ride incident, even during exercise) wiped out the following day
10. Dizziness (especially during exercise)
11. Un-refreshing sleep
12. Feeling that I am approaching death (episodes) horrible malaise
13. Pulsating/Pounding/Faint head upon standing  Orthostatic Intolerance
14. Pain/Temp sensitivity (colder than usual, hot flashes, pat on the back incident)
15. Swollen lymph nodes in neck and groin area felt by doctor
16. Missed days of school, can’t get up from chair/bed—what happened to my internal energy supply?
17. Grinding/Snap, crackle, pop neck (stiff in mornings)

How many of these do you have? and if so, which number(s) Thanks
 

kat0465

Senior Member
Messages
230
Location
Texas
Damn, sorry to hear that. There is nothing you cherish that this illness cannot take way. nothing

you got that right! although i have a pretty decent dr now, there was a time i just knew i was going to die on a ER floor.now i cant work at a prefession i went to school and paid good money for, i have to watch as we slowly go in debt, because of me, husband probably wont ever be able to retire, i coudnt even pay for my daughters college. as much as i love working outside, i cant even plant a flower right now.

trying to look at the glass as half full all the time is hard, sorry guys. it's just one of those days;/
 

SaveMe

Senior Member
Messages
421
Location
the city
you got that right! although i have a pretty decent dr now, there was a time i just knew i was going to die on a ER floor.now i cant work at a prefession i went to school and paid good money for, i have to watch as we slowly go in debt, because of me, husband probably wont ever be able to retire, i coudnt even pay for my daughters college. as much as i love working outside, i cant even plant a flower right now.

trying to look at the glass as half full all the time is hard, sorry guys. it's just one of those days;/

if you dont mind me asking do you share the symptoms I have (#17 comment)?
I have only had this for a little over 1 and 1/2 years.
 

kat0465

Senior Member
Messages
230
Location
Texas
if you dont mind me asking do you share the symptoms I have (#17 comment)?
I have only had this for a little over 1 and 1/2 years.

therea only 2 or 3 that i dont have, most of those complaint are quite common im afraid ;/