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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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This is what we're up against

snowathlete

Senior Member
Messages
5,374
Location
UK
It's all too easy to dismiss a powerless patient when you are a doctor in a position of power, with your health and life fully intact. Much simpler than taking a really close look, questioning your own predjudices and reading the research properly...and heck, believing the millions of people in the world who say this is real. Sadly, nothing short of getting this wretched disease themselves will open these people's eyes. It's hard to imagine anyone in this world deserving that more, frankly.

I'd like to believe these 20 doctors are not representative but there is only one voice questioning their ignorance and spite and that doctor has firsthand experience themselves. Are there really no good doctors out there who can act with some level of human quality and do their jobs properly?
 

Gamboa

Senior Member
Messages
261
Location
Canada
I am so saddened by the comments of these doctors but not surprised. I have seen it first hand over the years.

I used to work in a large hospital here in Ottawa Canada and knew a number of doctors, primarily the infectious disease physicians and laboratory doctors such as medical microbiologists, biochemists and pathologists. Almost all of them used to think ( up until I left 8 years ago) that fibromyalgia and ME/CFS were psychiatric diseases. They used to say terrible things about these people (nut jobs, malingerers) and I remember arguing with some of them about it .I couldn't believe how narrow minded so many of them were ( and possibly still are ) This was in the days before I fell ill with ME/CFS.

When I became ill and was finally unable to work 8 years ago I asked one of my supposedly good friends, an infectious disease physician, for help. He said he would ask around the hospital and see if anyone knew about ME/CFS and could do anything. He got back to me saying no one could help. I have never heard from him again. I can just imagine now the response he got and what they all said about me.

It is so sad that I live in a city with a large teaching hospital, know personally lots of infectious disease doctors, yet I can't get any help, treatment, respect as far as infectious disease goes. My doctor is Dr. Hyde and he is great at referring me to every specialist there is EXCEPT infectious disease docs. because he encounters the same problem with them. Basically they all seem to have the same opinion-that it is nothing to do with anything bacterial, viral or retroviral and that we are all just lazy and crazy.

Regarding comments on Medscape, I made a number of comments on the last Medscape article and will do so again. The problem is that I don't think the people who make the comment go back and see the rebuttal. I was furious after reading some of the last Medscape article comments and I'm not sure if I can take much more of this.
 

CBS

Senior Member
Messages
1,522
Posted to Medscape 'comments' this afternoon:

Doctors have many ways of saying "I don't know," but rarely by saying "I don't know." When they do so, patients walk away and the ill-informed doctor assumes the lack of a follow-up visit confirms their prejudice when in fact the patient just decided not to waste the energy on someone who couldn't/wouldn't help. Some, tired of the abuse, simply stop seeking medical help but remain bedbound for decades.

Sadly, none of the dismissive comments here come as a surprise to patients. All the more reason to appreciate the compassionate doctors who have stayed with patients that were a challenge and are making a real difference. In my case, Dr. Jose Montoya at Stanford in collaboration with my endocrinologist (whom I will not mention by name because he hasn't "come out" as treating ME patients and I've seen the type of treatment he'd likely be subject to were I to do so).

I do find the overly sexist comments revealing. In 1994, I was a 31 year old research coordinator at Stanford, working towards my Ph.D. with a fantastic career ahead of me. My symptom onset was sudden and unmistakable. Fever of 104, 5 cm X 6 cm enlarged node in my left groin. Node had clear toxoplasmosis morphological characteristic.Doctors who dismiss this as a female problem come across as ill-informed bullies targeting often severely ill women (I suspect that their male patients likely get the same brush-off, they are still ill informed, but likely after a marginally more thorough work-up).

Suicide rates in the ME/CFS population are astronomical. A recently completed follow-up of CFS patients found that in patients followed after 10-20 years of their diagnosis, 19% of those who could be confirmed as dead, died from suicide (http://www.occupycfs.com/2014/07/07/mecfs-mortality/). That's ten-fold the average rate in the population. The next time you hear a doctor address CFS (or a CFS patient) in a pejorative manner, ask yourself "How many of those suicides were the result of bullying by medical professionals or by relatives/friends taking their cues from medical professionals?"
 

catly

Senior Member
Messages
284
Location
outside of NYC
Unfortunately, I think the IOM goal of trying to convey the seriousness of the illness and to have it recognized and appropriately diagnosed by any/all health providers is a WAY OUT THERE aspiration. It's clear that the stigma will not be addressed by a name change or simplified diagnostic criteria. The best we can hope for is this report, along with the P2P and FDA reports will spark more dollars for research to uncover the etiology and objective bio markers then hopefully treatments-until that time there is no way anything anyone, including our governmental health related agencies, can say that will change preconceived misconceptions of this illness.
 

Wally

Senior Member
Messages
1,167
I am so saddened by the comments of these doctors but not surprised. I have seen it first hand over the years.

I used to work in a large hospital here in Ottawa Canada and knew a number of doctors, primarily the infectious disease physicians and laboratory doctors such as medical microbiologists, biochemists and pathologists. Almost all of them used to think ( up until I left 8 years ago) that fibromyalgia and ME/CFS were psychiatric diseases. They used to say terrible things about these people (nut jobs, malingerers) and I remember arguing with some of them about it .I couldn't believe how narrow minded so many of them were ( and possibly still are ) This was in the days before I fell ill with ME/CFS.

When I became ill and was finally unable to work 8 years ago I asked one of my supposedly good friends, an infectious disease physician, for help. He said he would ask around the hospital and see if anyone knew about ME/CFS and could do anything. He got back to me saying no one could help. I have never heard from him again. I can just imagine now the response he got and what they all said about me.

It is so sad that I live in a city with a large teaching hospital, know personally lots of infectious disease doctors, yet I can't get any help, treatment, respect as far as infectious disease goes. My doctor is Dr. Hyde and he is great at referring me to every specialist there is EXCEPT infectious disease docs. because he encounters the same problem with them. Basically they all seem to have the same opinion-that it is nothing to do with anything bacterial, viral or retroviral and that we are all just lazy and crazy.

Regarding comments on Medscape, I made a number of comments on the last Medscape article and will do so again. The problem is that I don't think the people who make the comment go back and see the rebuttal. I was furious after reading some of the last Medscape article comments and I'm not sure if I can take much more of this.
@Gamboa,

Hi! I just wanted to say how sorry I am that you were treated so poorly by people who were your colleagues and friends before you became sick. Their loss not yours, but it is still hurtful. In a strange way I think this illness has selected some of the most beautiful and compassionate souls, and the "healthy" ones behaving so badly appear to be suffering from delusions of superior intelligence and E.H.H.S. (Empty Head and Heart Syndrome). ;)

I am also beginning to wonder if most of these medical "yahoos" had their fingers crossed behind their backs when taking the Hippocratic Oath. Interesting that they have no shame in often posting their full names when leaving their spiteful and ignorant comments. I am sure that Santa Claus will be keeping a list and checking it twice in preparation for the arrival of Judgment Day at the North Pole. :p :D

If you ever make it back across the border for a visit, I would be glad to put you in touch with some pretty wonderful infectious disease doctors who specialize in ME/CFS and I am sure that they would feel lucky to have you as their patient. :):hug::hug:

Wally
 
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Mary

Moderator Resource
Messages
17,321
Location
Southern California
@Mary What a wonderfully written post. I can't wait (sigh) to see the responses!

@SDSue - thanks, Sue! I haven't gone back to the article or looked for any responses to my post --- maybe I don't want to see them, if there are any - I can only take so much :eek: The snarky comments from those "professionals" hit me pretty hard, as I'm sure they did many if not most of us. You think I'd be used to it by now ...
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
On the precautionary principle, I would recommend a private thread for contact details.

You will not be able to educate most of them. I could go into reasons why but its a long list.

What we can do is shoot down their points, one by one, with references, on Medscape or other places where we can post.
I agree we cant educate thosse types, that is why they should be reported to the hospitals they work at instead or to somewhere else about their attitude towards this patient group.

I suggest screen shot their comments and email it to the managers of where they work or the CEO of their hospitals. You may well be really helping the next ME person they come across with that attitude as it will support a ME ill treated person if that person puts in a complaint! Some of these ones may of had had complaints put against them with ME patients in the past and a previous warning.

(I wish I was up to working on this it could be quite emotionally healing reporting these doctors but Im not even up to being able to join new accounts so I can access medscape or read the stuff there. Ive spent today gettitng together info for my ME discrimination court case against a gov dept and have a headache from that).

but I think right now is a chance to put a stop to some of these doctors who have probably ill treated many of us in the past.

Maybe someone could write a good letter for people to use when reporting these incidences for those not up to doing one....
 
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Sidereal

Senior Member
Messages
4,856
I used to work in a large hospital here in Ottawa Canada and knew a number of doctors, primarily the infectious disease physicians and laboratory doctors such as medical microbiologists, biochemists and pathologists. Almost all of them used to think ( up until I left 8 years ago) that fibromyalgia and ME/CFS were psychiatric diseases. They used to say terrible things about these people (nut jobs, malingerers) and I remember arguing with some of them about it .I couldn't believe how narrow minded so many of them were ( and possibly still are ) This was in the days before I fell ill with ME/CFS.

When I became ill and was finally unable to work 8 years ago I asked one of my supposedly good friends, an infectious disease physician, for help. He said he would ask around the hospital and see if anyone knew about ME/CFS and could do anything. He got back to me saying no one could help. I have never heard from him again. I can just imagine now the response he got and what they all said about me.

I had a very similar experience working in a teaching hospital at the time of my relapse. For years I'd been listening to comments how repulsive ME/CFS/FM patients are. When I crashed and was still undiagnosed and trying to make it into work a couple of times per week in severe difficulty, most of my physician colleagues just ignored my plight, couldn't/wouldn't even recommend a useful referral. One tried to tell me it was anxiety and that I needed to stop catastrophising. :lol: When I became bedridden and totally dropped out of life, I didn't get one phone call from these people to enquire how I was. It's not hard to imagine what they said about me behind my back.
 

beaker

ME/cfs 1986
Messages
773
Location
USA
I do think that what we are seeing is a bit of projection. So many physicians are burnt out and dream of an excuse to walk away and collect disability. The suicide rate amongst physicians is higher than in any other profession.

In the US, these people are generally not the confident, satisfied professionals they would like us to see. As a group, I tend to view them as five year-olds. The compassionate doc is rare and should be appreciated all the more.

On the other hand. These are doctors w/ time to post. My doc. is an academic. Works at 2 clinics and runs a lab. Oh and supervises/teaches "fellows" in his specialty. I think many doctors that are dedicated to their profession are also too busy to spend time commenting on medscape. Just saying that these may not be "typical ". Let's hope.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
On the other hand. These are doctors w/ time to post. My doc. is an academic. Works at 2 clinics and runs a lab. Oh and supervises/teaches "fellows" in his specialty. I think many doctors that are dedicated to their profession are also too busy to spend time commenting on medscape. Just saying that these may not be "typical ". Let's hope.

Im not saying all, but most docs stop learning anything new when they finish university. So if they finished uni before lake Tahoe outbreak, than they were probably never taught anything about cfs and know nothing other than propaganda thats in the media or a pharmacy rep.

Out of all the doctors, gp's and specialists, its probably the gp that knows more as they have a wider patient base than a specialist and when a specialist doesnt have an answer they are sent back to their gp's. Amongst gp's there are believers and non believers, it is the believers that have empathy, are good lateral thinkers and treat the patient not a lab number. They do the best they can but are held back by the amount of research thats done on cfs/me as well as held back by health systems and insurance companies, with strict guidelines.

We are lucky we have some good gp/researchers like klimas, KDM and peterson as well as specialists like Montoya and lipkin who havent just passed the buck. Then there doctors/researchers who either themselves or close family struck down with cfs/me like dr chia or dr shephard. Then those who are just curious and love a challenge.

There are some good people out there doing their best for us and many more that arent mentioned.

I think its going to take some good biomarkers and or a treatment and the next generation of doctors that will hopefully hear about cfs/me and research the work of the above gurus or better still, maybe lectured to them on the subject. I think that is when we will see the tide changing. At this current stage a name change is like a piss in the ocean to try and change the tide. Currently there are too many doctors bamboozled by psychobabblers and all the wonderful crap they have to offer cfs/me.

I think we need to really appreciate the doctors we have look after our cause as im sure they have to put up with a lot of ridicule from fellow work mates and the health systems they work under.

CHEERS to all those medical cfs/me believers!!!
 

beaker

ME/cfs 1986
Messages
773
Location
USA
Im not saying all, but most docs stop learning anything new when they finish university. So if they finished uni before lake Tahoe outbreak, than they were probably never taught anything about cfs and know nothing other than propaganda thats in the media or a pharmacy rep.

Out of all the doctors, gp's and specialists, its probably the gp that knows more as they have a wider patient base than a specialist and when a specialist doesnt have an answer they are sent back to their gp's. Amongst gp's there are believers and non believers, it is the believers that have empathy, are good lateral thinkers and treat the patient not a lab number. They do the best they can but are held back by the amount of research thats done on cfs/me as well as held back by health systems and insurance companies, with strict guidelines.

We are lucky we have some good gp/researchers like klimas, KDM and peterson as well as specialists like Montoya and lipkin who havent just passed the buck. Then there doctors/researchers who either themselves or close family struck down with cfs/me like dr chia or dr shephard. Then those who are just curious and love a challenge.

There are some good people out there doing their best for us and many more that arent mentioned.

I think its going to take some good biomarkers and or a treatment and the next generation of doctors that will hopefully hear about cfs/me and research the work of the above gurus or better still, maybe lectured to them on the subject. I think that is when we will see the tide changing. At this current stage a name change is like a piss in the ocean to try and change the tide. Currently there are too many doctors bamboozled by psychobabblers and all the wonderful crap they have to offer cfs/me.

I think we need to really appreciate the doctors we have look after our cause as im sure they have to put up with a lot of ridicule from fellow work mates and the health systems they work under.

CHEERS to all those medical cfs/me believers!!!
FYI : Klimas is a specialist -- an immunologist ;-) Want to give her, her due.
Great post .
 

melamine

Senior Member
Messages
341
Location
Upstate NY
It shows that education is needed in med schools. There lack of knowledge on cfs/me is very poor.

What is needed is to stop the mis-education of doctors first. Make no mistake, doctors are educated to think and believe as they do. It is only those who observe, experience and think for who overcome it.

I like PRAG.
>My term for this illness would be PRAG, Prolonged recovery asthena gravis. Asthenia indicates extreme lack of strength, gravis, the serious nature of this illness, Prolonged recovery is the sine qua non of this illness, the recovery can be days, weeks, or years.<

If not, report them to the state health board and consider a malpractice suite for not properly following standard procedures.

Didn't work. I tried it. They did not investigate: They ask the doctor if he/she did the things you claim. Doctor denies. Case closed, but they do not tell the complainant. Total secrecy, self-oversight - I tried filing a complaint with the Inspector General over the handling of my complaint and they tossed it back to the same agency. It does not matter how well you document, and everyone knows how hard that is.

In NY State there is even a dual standard, so that if you are Medicaid/Managed Care the Health Department will not even accept your complaint - you must file with a different agency. I exhausted myself with the stress and details of this process.

Next time it happened I filed a complaint with my insurance. When they asked if they should follow through with an investigation I told them no, I just wanted it on the books. I let them know how wasteful these doctors' behavior is in specific terms that they can understand. Most of the time I was too sick to follow through on anything, and burned once, I didn't want to waste precious resources being burned again.
 

melamine

Senior Member
Messages
341
Location
Upstate NY
. I have seen a complete change in attitude and treatment when an attorney friend is present in the examination room vs. when they are not.

Two of the many PCPs I endured would not allow a witness in the exam room with me. Others might not have if, when I went alone, I had requested a nurse. One specifically asked my mom to leave. Lucky you you had an attorney friend to accompany you. Unfortunately that is not the norm. I would not have tolerated the abuse I received if I had been less sick and less desperate to squeeze out of them what I needed for the time being. In smaller cities it is almost impossible to find an untainted PCP, so going to another would not have solved the problem at that point, but would only have exaggerated it.
 
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melamine

Senior Member
Messages
341
Location
Upstate NY
In the same manner, medical practioners are governed by a code of ethics of 'do no harm' to the patient which means no further psychological harm

No, many are not governed by that code, sadly: when it comes to the excluded class, like being 2/3 of a citizen, the same rules do not apply. It is a myth that patients believe and that shields the profession.