A Doctor's Wake-Up Call on "Awareness" Day

[Stuart]

Let me say that again:

Dr. Yes, you are loved!!

maybe one more time:

Dr. Yes, you are loved!!

I want to point out that Dr. Yes posted his story for us. I truly hope some help comes out of his telling it, but the intention was to offer evidence that this kind of mistreatment is happening to someone with ME/CFS on International Awareness day in New York, USA in 2010. Here. Now. This kind of mistreatment is happening.

Can we help Dr. Yes find a better home? I'm hopeful that we can do this. But what about the next Dr. Yes? This isn't an isolated case, with one isolated jerkoff doctor who doesn't believe in ME/CFS. This is happening elsewhere. And soon may be happening more. Many in our population are being cared for by elderly parents. Where will they go when their parents are too old or ill to care for them?

What Kim Said

 

[oerganix]

NY Ombudsman for people living in NY nursing homes: 1-800-342-9871

Love and hugs to you, Dr Yes. What county are you in? I would be happy to call the State ombudsman for you, if you can tell me your county, the nursing home, etc. 1-800-342-9871 Or perhaps Kim or Robin or someone you know better, or who is closer to you, than I.

Here is a site for ombudsman for NY: http://www.ltcombudsman.ny.gov/
"This office protects the health, safety, welfare, and rights of people living in New York's nursing homes and adult care facilities. Hundreds of certified Ombudsmen work in concert with government agencies to fulfill this duty. Following the links above to learn more."

Who Is My Ombudsman

Many residents don't have family close by. Monitoring facility conditions for these residents is so important!

In New York, there are hundreds of certified Ombudsmen assigned to long term care facilities across the state. Many Ombudsmen post contact information in the facilities they serve. To find an Ombudsman in your area click on one of the links below:
Click here for New York State Directory.
This directory lists Substate Ombudsmen Coordinators by county. Contact the person for your county or call the New York State Senior Citizens' Help Line at
1-800-342-9871.

Here is a site for reporting nursing home abuse in NY: http://www.nursinghomepatientrights.com/New_York_Nursing_Home_Abuse_Assistance.htm
New York nursing home abuse assistance

Nursing home abuse involving New York nursing homes should be reported. Below are the names of state officials to whom you may report nursing home abuse or neglect.
State Long Term Care Ombudsman
Martha Haase
State LTC Ombudsman
New York State Office for the Aging
2 Empire State Plaza
Agency Building #2
Albany, NY 12223
Work: (518)474-7329
Fax: (518)474-7761
website:http://www.ombudsman.state.ny.us
Office on Aging
Neal Lane
Acting Director
NY State Office for the Aging
Office for the Aging
2 Empire State Plaza
Albany, NY 12223-1251
Work: (518)474-7012
Fax: (518)474-1398

 

[JillBohr]

Thank you Robin for letting us know that Dr. Yes is O.K. If you talk to him again, just let him know that we are all here for him and let us know what he would needs. Again, we LOVE you Dr. Yes.

 

[dannybex]

This is why i get so angry at people repeating psychobabble.This is the result a bigotted uninformed doctor who has been brainwashed by the psycho lobby and a defenceless sufferer of our illness being abused as a result

As do I Gerwyn -- extremely angry. But even if the definitions/guidelines are changed, there will still be thousands of doctors with their own prejudices and power plays that will get away with going by their own rules. They can still say "well, I don't believe that".

In today's culture, television and movies are very powerful. If a story on Dr. Yes's situation (or others) was told through some investigative report (on shows like 20/20, Dateline, Nightline, etc., here in the US), where a doctor, health care practitioner or whoever is exposed on national television, then perhaps things will finally start changing.

In today's culture, television and movies are very powerful. If doctor's knew they could lose their license, their livelyhood, their JOB, then perhaps things will finally start to change for all of us.

 

[gracenote]

Here is a chance to influence a film in the making.

Go to the thread What About ME? Movie and fill out their questionnaire. The info is in Post #4. The film makers are asking for suggestions. It is quick and easy.

 

[Dreambirdie]

But even if the definitions/guidelines are changed, there will still be thousands of doctors with their own prejudices and power plays that will get away with going by their own rules. They can still say "well, I don't believe that".

Hey Dan, That's my feeling too, and my experience backs it up. In the mid 80's (before CFS existed as an official illness, and before I knew that I had it), I went to see an MCS specialist here in town. In those days MCS was called EI--Environmental Illness. This doctor's name, btw, was Vincent Mark. He was sick HIMSELF with MCS, but that did NOTHING for his attitude about it. At the time I saw him I was SEVERELY ILL--a universal reactor, from a mega chemical poisoning caused by a neighbor's spraying of penta chloro phenol on his fence to kill termites. Dr. Mark's response to me was that "ALL I needed to do was get married and start popping out a bunch of babies, and I would forget all about my imagined problems." Here's someone who REALLLLLY should have known better, but did not.

Unfortunately there are many many doctors out there like this one. I grew up in a family with 2 doctors, and as a kid I hung out with the children of other doctors, who were friends of the family. From what I saw (and oh the stories I could tell!) there was a massive amount of ego mania and power tripping going in this doctor world, and an incredible attitude of entitlement. Tho I will say, the one thing that did scare the bejeezus out of most of them was the word "malpractice."

In today's culture, television and movies are very powerful. If a story on Dr. Yes's situation (or others) was told through some investigative report (on shows like 20/20, Dateline, Nightline, etc., here in the US), where a doctor, health care practitioner or whoever is exposed on national television, then perhaps things will finally start changing.

In today's culture, television and movies are very powerful. If doctor's knew they could lose their license, their livelyhood, their JOB, then perhaps things will finally start to change for all of us.

I've always had that idea in mind, and that's why I worked so hard to get the Dr Oz show to do its segment on XMRV. At this point Oz is the ONLY media ally we have, but maybe someone can put out the energy to create another segment on one of the above mentioned shows...? It would be great if we could pull it off.

 

[dannybex]

Hey Dan, That's my feeling too, and my experience backs it up. In the mid 80's (before CFS existed as an official illness, and before I knew that I had it), I went to see an MCS specialist here in town. In those days MCS was called EI--Environmental Illness. This doctor's name, btw, was Vincent Mark. He was sick HIMSELF with MCS, but that did NOTHING for his attitude about it. At the time I saw him I was SEVERELY ILL--a universal reactor, from a mega chemical poisoning caused by a neighbor's spraying of penta chloro phenol on his fence to kill termites. Dr. Mark's response to me was that "ALL I needed to do was get married and start popping out a bunch of babies, and I would forget all about my imagined problems." Here's someone who REALLLLLY should have known better, but did not.

Unfortunately there are many many doctors out there like this one. I grew up in a family with 2 doctors, and as a kid I hung out with the children of other doctors, who were friends of the family. From what I saw (and oh the stories I could tell!) there was a massive amount of ego mania and power tripping going in this doctor world, and an incredible attitude of entitlement. Tho I will say, the one thing that did scare the bejeezus out of most of them was the word "malpractice."

I've always had that idea in mind, and that's why I worked so hard to get the Dr Oz show to do its segment on XMRV. At this point Oz is the ONLY media ally we have, but maybe someone can put out the energy to create another segment on one of the above mentioned shows...? It would be great if we could pull it off.

Man, you would think that a doctor who's experiencing the effects of MCS would at least be a little more open-minded. Sorry to hear that happened to you DB. You're right, it's more proof however that people (of all types/professions) can be so stubborn and ignorant.

I must humbly disagree that Oz is the only media ally we have. We might have more than we know... :Retro smile:

In Dr. Moore's post, she mentioned that she could possibly hook Dr. Yes up with other contacts, and also mentioned the NY Post, which in and of itself might lead to more attention by a television media source that could step up when we least expect it. Everyone loves a good 'gotcha' story, and if anyone deserves to be caught, it's these amoral, sadistic cretins that have abused their power, not to mention Dr. Yes.

d-bex

p.s. And who knows how many others they've treated this way? Maybe the entire home should be investigated.

p.s.p.s. Wilddaisy makes some good points. I would hope that if this is investigated via a national media source, then that would offer some sort of protection to whoever would file a claim or charge. Those who are charged would know they're being watched...or are under scrutiny...?

 

[jewel]

First, to Dr. Yes-- Only you could convey a horror story co-written by Grimm and Kafka which such panache and humor amid the sadness. WE LOVE YOU!
Great suggestions re: advocacy by way of ombudsperson both for the nursing home system and for medicaid (they likely have a separate one). Yes, this should be in a movie. J.

 

[Dr. Yes]

I'm sorry it took me this long to post again; I have been truly whacked lately, and the visit from Dr. Doom was just the final blow after weeks of, among other things, poor sleep, less nutrition, breathing problems and, most recently, some crazy but obligatory overexertion.

I'm totally overwhelmed. This isn't the first time I have been blown away by the love and compassion shown by forum members to one another, but it is obviously the most personally moving. I wish I could find the words to thank all of you, but I can't. My synapses are fried right now. (You have no idea how long it took me to write even this!) And even if I could think more clearly, I would still be pretty speechless.
I have never met a more beautiful or more caring group of imaginary friends in all the years I have been under the delusion that I am sick.

I wish I had the energy to thank every one of you one-by-one in this post! I will try to thank you individually, via PM, though that will take... a while. I'll get around to it, though, somehow. I know you don't expect me to, but I want to.

I want to say a couple wordy things before I have to shut my eyes again. First off, I wrote this little rant of mine (okay longish rant) originally because I knew if I didn't something in me would have snapped. I wrote it very soon after the encounter. After I wrote it I thought of posting it just so someone could hear me scream, because I can't scream in here. (Okay, it wasn't much of a scream, since I toned it down a lot.. more of a 'whine'.) Then I figured that was pointless, and decided not to inflict it on anyone. But I kept being haunted by the irony of this display happening on the day that we ourselves appointed for our illness because nobody else will.. and I was reminded of the sameness, the endlessly unchanging nature of our status in the medical community over all these years. I just could not let the sharp contradiction between socio-medical reality and the reality we are trying to construct go unstated.. not when I had such a poignant example burned into my head. I really did not post this as a personal plea or a rant (though I didn't make that clear enough because I had no strength left to think with when I finally posted it), but as just what it was for me - a reminder of what advocacy really has to be all about to make a difference in the way we are seen by the profession we depend on the most.

Yes these doctors are unusually bad and also emboldened because of the helpless position their patients are in, but in the last 17 years I have been confronted with this same attitude at nearly every hospital I have gone to and by doctors in many different specialties in New York, which I doubt is unique in that sense. They don't always say it to your face, but sooner or later they may; this isn't even the worst I have experienced (not by a long shot). I fear this is what many of those doctors who give you the blank stare or the brush-off are thinking; they just don't have the luxury of a 'captive audience' like the fellow over here. If there is one thing I hope I can do on this forum it is to warn everyone that what has happened to me could happen to any of you - at least in the United States, probably elsewhere too. It may seem like I am in such an improbable mess, but you would not believe how easily I wound up in it. All it takes is having no money and no support, which happens to a lot of us after a decade or two of not working, or after the departure or death of a caregiver.

I had something in mind to say about what to do about this situation, but it vaporized and went to the Place in the Sky where CFS Thoughts Go when they Die.

The second thing I wanted to say right now is that besides being blown away by your responses I was blown away by your brainstorming on my behalf. You guys rock! Thanks especially to Dr. Donnica (I am kind of star-struck ) for taking the time to offer your help. I really, really appreciate it and will try to think about such things if and when I can really 'think'.

I have to say though that at this time what Kim and others have said is right; I have to be VERY careful how I deal with the people here for the simple reason that I don't have anywhere else to live, not even temporarily. If I piss people here off too much they can, as far as I know, find a reason to release me (given that all I have is chronic fatigue syndrome, that should be easy) and then I'd be homeless. Even if they didn't do that, there are many ways (as I have heard from other residents) that they can retaliate against residents who make problems for them. One such resident found herself switched from a single room to a double after her family complained (the nursing home always reserves the right to shuffle residents around). Complaining about the doctors can mean not getting a prescription when you need it, not getting approval for certain tests without a struggle (or at all), and not getting referrals to specialists that you request. I am really not well right now, and don't have the energy for those kinds of struggles; I don't know what the right approach is, which is why the concept of a savvy 'advocate' sounds so appealling, but I honestly wouldn't know one if I saw one. (If anyone does know one when they see one, please let me know! I have heard of a local ombudsman, but have so far tried to avoid involving him until I know what my alternatives, if any, are, for which I need a different sort of help; however, if things go on with some issues the way they have I may contact him soon...he isn't really a 'medical advocate', though, nor a very personal one. I don't know if this is the same person who I would be referred to by the links you suggested, Oerganix, but I will look into 'em... thanks!!!)

As far as getting tested for XMRV.. I do think that would be helpful in a number of ways. I was going to email Dr.Judy myself when a member of this forum who wishes to remain nameless contacted Dr. Judy (WITHOUT ASKING ME FIRST) and got a reply stating that she would be glad to put me in the current WPI study if there is a way to get the blood drawn (not easy, given nursing home restrictions). While I do NOT condone doing stuff like that without asking me first, I of course wrote Dr. Judy to thank her and give my official whatever, the rest being up to her. So this is an amazing possiblity which would not have been possible without the inspiring vibes generated by all of you. Meanwhile I am of course deeply in a certain forum member's debt. (Which sucks because you have no IDEA how she wants to be paid back..)

Thanks everyone for making me feel a whole lot better. Some of you have said you admire my tenacity or spirit or whatever, but - believe me - I would NOT have survived the last several months without all of you. I know this sounds corny as hell but I really mean it: I am really proud to call you my friends and my community.

The one idea I totally can't argue with is being swept off my feet (literally) by three chicks in a scooter with sidecars and whips and leather (that's how I'm picturing it). Take me!
​

 

[gracenote]

Dr. Yes,

I feel so privileged to know you. Thank you for trusting us enough to share what happened. You did it for us as much as you did it for yourself.

Last week I had a chance to speak up about ME/CFS with a group of healthcare providers. I've been wanting to tell you that it was your words on this forum your wise and astute words that gave me the courage and clarity to do so. I kept thinking, Dr. Yes would be so proud of me; I can't wait to tell him!

Now that you have shared how truly awful the situation continues to be, I am even more determined to follow through with the requests for information and the opportunity that is opening up to me. There are people who need to know and who want to know.

I am inspired by your spirit and am so very grateful to be a part of a community where you are an esteemed member. I dedicate my efforts to educate a few more healthcare providers to you.

May you truly know how beloved you are.

gracenote

 

[citybug]

hope you're resting and remembering your dreams.

 

[spindrift]

Dr. Yes,

definitely get your blood to WPI. If no one at the home will draw your blood we can
all pitch in together and send one of those p....??? , you know that come to your place and
draw your blood. I am too fried to look up the word.

Oh, did I mention it is really good to hear from you.
When ever you decide what you would like to do just let us know so we can help.

 

[Forbin]

Hey, Dr. Yes,

You are truly one remarkable fellow! Hang in there! You are in our thoughts.

[I found this new sign for your Church of False Illness Beliefs. I was going to post it on the "Paging Dr. Yes" thread, but I guess I'll post it here. Hope it gives you a smile!]

(wish I knew how to make it larger...)

Best, Forbin

 

[spindrift]

 

[Forbin]

[Thanks, spindrift!]

 

[Jenny]

Dr Yes

Just to add my voice in the hope that it might give you a little more strength in this dreadful situation. I don't know what more to say - I wish I could help in some way.

Like everyone, I'm in awe of how you seem to be able to rise above all this suffering, giving support and much needed light relief to all of us on this board.

Jenny

 

[Noro]

Dr Yes, so sorry that you are having such an awful time of it. lots of love, hope it all works out soon

 

[spindrift]

Put this on your nightstand and tell them I am on my way.

(Note I have since traded the motorcycle for a mobility scooter :worried

 

[froufox]

Dear Dr Yes,

I'm coming in late to this thread as I only just caught it very late last night. Just wanted to offer my support too alongside everyone else and though I knew it was bad at the home i'm still shocked at the shameful and ignorant behaviour of that doctor, he should definitely be named and shamed!! Like others i find u very inspiring given how much positivity, humour and intelligence u bring to the board which completely belies the dreadful situation you've had to put up with at the home. Just shows your strength of character!!

I hope and pray that u get some proper advocacy really soon. For a start I think that your social worker should be doing more to help fight your case - at least when I trained in social work there was quite a bit of emphasis on advocacy as that is what it should be about!!! Anyway really hope that there will be some way of changing the situation and there is a solution very soon and u can get out of that shitty place.

Hang in there, love & hugs!!

 

[fds66]

Dr Yes, I too was appalled at the way you were treated. Sadlt not entirely surprised because as you say many many doctors feel this way I think. I've certainly had some comments in my time but to be totally at their mercy is a very different prospect. I have the luxury of being able to go home afterwards. I too admire your spirit and love your posts here. You have made me smile many times which I'm so grateful for. My thoughts are with you.