This is what we're up against

[Gingergrrl]

Regarding going to California to see an ID doc, I think about it all the time, but keep hoping that there will be some breakthrough research from Dr. Montoya or Dr. Lipkin that I could then use to get treatment here. I know... I am living in a dream world. I probably should just make an appointment with someone at Stanford. The waiting list is so long that there probably would be a breakthrough by the time I went and I wouldn't have to go

@Gamboa I don't know if it is realistic or possible for you to travel to see a specialist but just in case, when you mentioned that the waiting list is several years to get into Stanford, you can get a new patient appt at OMI within a few weeks with Dr. Kogelnick or Dr. Kaufman and I promise you that you will be treated with respect. It will be nothing like the "Parade of charlatans" (to quote Sidereal from another thread ) from the Medscape article.

Wow. That's a great idea. I wish you three the best with getting it underway. Kudos for making this effort.

Thank you and we are still brainstorming but truly plan to make this happen.

@SDSue, thanks for going through the list of pathetic posers on Medscape.

Yes, thank you @SDSue and also thank you to @CFS_for_19_years for making me laugh out loud when I read "The list of pathetic posers..."

 

[valentinelynx]

Right now Dr. Patient, myself and Jeff W. from PR are planning to create a website where doctors, nurses, social workers and healthcare professionals world wide can share their stories for other doctors to read and we already have some great ideas how to start this project.

Do you mean for health professionals who have this disease to share their stories? I'd be up with that being an MD myself with "the disease formerly known as ME/CFS" and/or late stage Lyme disease.

 

[Gingergrrl]

@valentinelynx Yes, we are creating a website for doctors and other clinicians (nurses, social workers, etc) to share their own stories of ME/CFS to educate other doctors.

I am an LCSW (social worker) and we want to include all licensed professionals who provided direct care but whose careers ended by ME/CFS. The focus will be to provide real education of this illness to non believing doctors through our stories.

We are in the brainstorming stages but very soon will be creating a group on PR to discuss (hopefully in the next week or so!) and hoping to get a lot of stories!

 

[SOC]

@valentinelynx Yes, we are creating a website for doctors and other clinicians (nurses, social workers, etc) to share their own stories of ME/CFS to educate other doctors.

I am an LCSW (social worker) and we want to include all licensed professionals who provided direct care but whose careers ended by ME/CFS. The focus will be to provide real education of this illness to non believing doctors through our stories.

We are in the brainstorming stages but very soon will be creating a group on PR to discuss (hopefully in the next week or so!) and hoping to get a lot of stories!

I hope you will take your efforts beyond just telling your stories (which alone would be very helpful) and use your position to make some concerted efforts to respond to your fellow medical practitioners on places like Medscape. They will listen to you far more than they will listen to the average patient. You have clout the rest of us don't. By making it a team effort, you could probably reduce the effort required to something manageable, say by writing 2 or 3 general rebuttals/ informational posts that could be signed/endorsed by multiple medical professionals who are also PWME (PWSEID?).

As for telling stories.... a website that tells the stories of all kinds of professionals who lost their careers to this illness is probably equally valuable. We have lawyers, engineers, PhDs in multiple fields, etc here.

Then there's the sad stories of those who never got a chance to have a career because they got sick early in life.

We need a big website with subcategories. Want to read about doctors who lost their careers to SEID? Click here. Want to know how SEID denied parents the opportunity to experience their children's lives to the fullest? Click here.

Journalists might suck it up right now. They love human interest stories. Who needs scientific fact when you can tell a misery story?

 

[Gingergrrl]

@SOC

I hope you will take your efforts beyond just telling your stories (which alone would be very helpful) and use your position to make some concerted efforts to respond to your fellow medical practitioners on places like Medscape. They will listen to you far more than they will listen to the average patient. You have clout the rest of us don't.

I wish that were the case and am not really sure that we have any clout with the doctors posting on Medscape. I sort of view the retired doctors as elderly racists with beliefs that are so entrenched that nothing we could say would sway them. My focus is on the new younger generation of doctors and what they are learning (or in this case NOT learning about ME/CFS in med school.)

I would love to have this website that these young doctors could look at and read hundreds of stories of other successful doctors (and other healthcare professionals) whose careers were ended by ME/CFS. Sorry that I cannot wrap my mind around calling it "SEID" and will still use the former term. Then even if they are taught a load of crap by the medical schools, this website will make them think.

By making it a team effort, you could probably reduce the effort required to something manageable, say by writing 2 or 3 general rebuttals/ informational posts that could be signed/endorsed by multiple medical professionals who are also PWME (PWSEID?).

I love this idea and we need these letters/rebuttals in general and not just for Medscape. We need to be able to send them to media outlets like NBC and anyone who continues to perpetuate nonsense against us.

As for telling stories.... a website that tells the stories of all kinds of professionals who lost their careers to this illness is probably equally valuable. We have lawyers, engineers, PhDs in multiple fields, etc here.

I totally agree and it is @Dr.Patient who is the driving force behind this particular website so doctors can educate other doctors and I truly believe they will listen to other doctors unlike anyone else. We wanted to focus this one specifically on those who provide direct clinical care to patients and are on the medical front lines to encounter an ME/CFS patient. They are either getting no education or false education and we want to counter that with these true stories.

Then there's the sad stories of those who never got a chance to have a career because they got sick early in life.

Absolutely and these stories break my heart but I am not sure that the doctors on Medscape care. It's almost like their hearts are gone. But if someone says, "I was a successful cardiologist, internist, oncologist, etc, for 15 years and ME/CFS ended my career and here is my story" those doctors are more likely to read it.

We need a big website with subcategories. Want to read about doctors who lost their careers to SEID? Click here. Want to know how SEID denied parents the opportunity to experience their children's lives to the fullest? Click here.

Journalists might suck it up right now. They love human interest stories. Who needs scientific fact when you can tell a misery story?

I love all these ideas and feel empowered now to do something about this to the best of my physical ability. I think once we form the group discussion (for those interested) we will get a lot of ideas and then maybe we can form sub-groups to take on different aspects of advocacy. We will do it soon, hopefully next week.

 

[beaker]

Maybe this is the place to add a more positive story on doctors and this plague ( I really don't know what else to call it at this point) I'll try to do the short version.

Last Nov. I had an accident and broke my leg/hip. In the ER, one of the docs there, was also the hospitalist who would oversee my care during my stay. She was extremely knowledgeable about this illness. She said you'd be surprised, it's really in the mainstream medical community now ---that its a real illness and doctors are taking it seriously. She understood about medication intolerances and even gave a theory why. She made sure my meds were adjusted accordingly. She told me : You're going to have to push through pain for your recovery, while making sure you don't push beyond your energy limits. Gee she even knew about mito disfunction. She was always giving me kind little talks.
The other drs. were all respectful, even though they weren't particularly knowledgeable, as was most of the staff.
The ortho surgeon understood the opiod tolerance ( I'm already on a lot of pain meds) and was willing to adjust pain med accordingly.
His PA, who I have known prior, doesn't really get it ( you'll be fine you're young and healthy. I looked at him as if he were nuts and he said you know what I mean. Not really. but since he's so nice and was compassionate, and otherwise accommodating. I asks for extra fluids and I got them. Lots and lots : )

The rehab center was also accommodating. There was one guy who was there one day who thought he knew a lot and had if all figured out. (his theory is another story) he did not. But he was only there one day. The regulars saw what happened just doing the little I was pushing to do. If I needed to back off and just go to a session and not really do anything bc too sick it was ok.
All very kind.

I don't know if it's because I am in the somewhat serious category and they could see w/ there own eyes how sick I was/am. Or if it was also because they could see that one of my treating docs is a well known at nearby university so I must have something bad to see him kind of thing. OR that it's a smaller town and there's more personalization. Or I got incredibly lucky ( I know w/ the hospitalist I sure did ) It was probably a combination of all.

But the very knowledgable hospitalists kept insisting that it's "out there" and "docs see so much of it now they take it seriously now." That made me wonder. I've been rather sheltered lately w/ my regular docs and haven't gone off to any specialists in a few years.
Anyways. I found it hopeful. I hope she's right.

PS More examples : my home care nurse and PT aren't knowledgeable, but they can see I'm sick and the PEM. They also take my word for what I try to explain to them about it. PT and I joke about some of the ridiculous things my impaired brain comes up w/ when trying to talk sometimes. Compassion has been key.
The aide's sister has this( although able to work) and she has MS. She gets it.

Maybe there is a growing silent majority ?

 

[Sasha]

@Gingergrrl and @Dr.Patient - this sounds like a great new initiative that you're doing. I've thought for a long time that we need a coalition of former clinicians with ME/CFS who would be prepared to write in to medical journals when they publish some nonsense about how CBT is great, and counter it. It's much harder for non-medics to get a platform in the medical academic media and harder for their responses to be taking seriously by doctors.

 

[Gingergrrl]

@Sasha Thank you and I am hoping once we have this website then when ignorant doctors post hateful comments on Medscape or in the media, we can refer them to the site which will speak volumes once they read it. (Just to clarify, the site doesn't exist yet but it will.)

 

[ahimsa]

But the very knowledgable hospitalists kept insisting that it's "out there" and "docs see so much of it now they take it seriously now."
...
Maybe there is a growing silent majority ?

@beaker, thank you for posting that positive story. I always appreciate getting a little bit of hope that things are changing.

My own primary care physician is not an ME/CFS specialist at all. But she absolutely believe this illness is real.

@Gingergrrl, this website project sounds great! I completely support you guys and think it would be a great resource. If it expands to stories from other folks, not just medical professionals, then I'd be willing to tell a version of my story.

 

[Revel]

I agree that things may be changing slowly but surely:

Earlier this week, I visited my dentist for a routine check up and hygienist appointment. I arrived a little shamefaced as I had not presented myself there for over a year . In the waiting room, I was asked to fill in the usual annual questionnaire about state of health, medications etc. To my surprise, listed in the "Do you have any of the following illnesses/diseases" was . . . . ME! I have been filling in the form for the past 12 years and this is definitely a new addition.

My dentist called me in and was obviously concerned as he saw me struggle to conquer the few steps to the consultation room (I have deteriorated a lot since he saw me last). He asked me about my illness in a very sympathetic and understanding manner, I was quite taken aback.

After my check up, instead of sending me back to the waiting room until the hygienist was ready, he asked me to stay put and disappeared for a moment. The dental assistant who stayed with me also enquired about ME and how it affected my daily life. At this point I apologised as my verbal skills were poor that day and conversation was painfully slow as I searched for my missing vocabulary. She reassured me that I was doing just fine (a little white lie, but appreciated).

My dentist returned, having rearranged consultations so that I could await my hygienist's appointment where I reclined and not use up precious energy switching from room to room.

My dentist had initially trained as a doctor, but left the profession as he was unhappy with the impersonal way that he was being taught to behave towards the patients. Our loss, because he would have made an excellent physician.

Never in 40 years of ME have I ever been treated with such respect and empathy. I left my dentist in tears - but for all the right reasons (and my teeth got an A+ ).

 

[alex3619]

To my surprise, listed in the "Do you have any of the following illnesses/diseases" was . . . . ME!

Wow. I hope we see such things more often.

 

[Hell...Hath...No...Fury..]

Never in 40 years of ME have I ever been treated with such respect and empathy. I left my dentist in tears - but for all the right reasons.

I second that! Exactly the same thing happened to me with my dentist. I'm just praying he's still there as i've been unsucessfully trying to get back there for the last 5 years.
His whole manner, gentleness genuine interest and respectfulness left me in a state of shock.