INIM not accepting new patients...

charlie1

charlie1

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I know some of you have been trying to speak to someone (anyone!) at INIM in Florida so I thought I should post this information.
I have tried for many weeks now to get someone to answer the phone at INIM in Florida but have only been able to leave messages. Finally today I received a call back being told that none of the 3 doctors there are accepting new patients but that I would be put on a wait list. No indication was given as to where I was on the list nor what timeline to expect.
@Hip , I'm not sure if this is something that would be appropriate to add to the portion of the roadmap re: doctors.
 
Hip

Hip

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charlie1 said:
@Hip , I'm not sure if this is something that would be appropriate to add to the portion of the roadmap re: doctors.
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I don't think it is unusual for ME/CFS specialists to have long waiting lists. I heard that Dr Chia's waiting list is 6 months.

You'd think that free market forces and the laws of supply and demand would cause more medical professionals to enter the ME/CFS field.
 
halcyon

halcyon

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This seems to be the general trend. If we don't get some new doctors in the field soon we're going to be really screwed when the current doctors start retiring.

My understanding is that OMI is the only clinic that you can get into with less than a few months wait, but that will probably change as everyone starts trying to get in there. Dr. Chia is an 8 month wait, Stanford CFS clinic is a year wait to see a PA, I don't think you can even see Dr. Montoya anymore. I don't recall if Dr. Peterson is even taking new patients, but I'm sure it's at least a year wait if he is.
 
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Sidereal

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halcyon said:
This seems to be the general trend. If we don't get some new doctors in the field soon we're going to be really screwed when the current doctors start retiring.

My understanding is that OMI is the only clinic that you can get into with less than a few months wait, but that will probably change as everyone starts trying to get in there. Dr. Chia is an 8 month wait, Stanford CFS clinic is a year wait to see a PA, I don't think you can even see Dr. Montoya anymore. I don't recall if Dr. Peterson is even taking new patients, but I'm sure it's at least a year wait if he is.
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Dr Kaufman seems to be filling up quickly, maybe as a result of stellar reviews here and his compassionate comments on the NYT article.

The future does not look good when only a handful of doctors in the world know anything about ME/CFS and many of them are close to or past retirement age.
 
SOC

SOC

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halcyon said:
This seems to be the general trend. If we don't get some new doctors in the field soon we're going to be really screwed when the current doctors start retiring.
Click to expand...
The good news is that INIM is busy working on training new doctors. That's one of the reasons Dr Klimas and Dr Rey are incredibly overworked. Dr Vera joined their ranks less than a year ago and she's already booked full. With luck they have another new doctor nearly fully baked. ;) Otherwise, given the length of doctor training, it could be another year or two before they add another doctor. IIRC (which I may not), one doctor they spent several years training left them upon completion of the program to take a more lucrative and less demanding position. :rolleyes:

Hopefully the information in the IOM report and any follow-on changes in the perception of ME/CFS/SEID will make it more likely the new doctors will enter the field... eventually.
 
charlie1

charlie1

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Dr. Lapp is taking new patients and booking in June-July. Dr. Enlander booking within the month. From gleaming various threads/posts on ME/MFS specialists, it looked to me like INIM and OMI offered the most tests for patients who are more or less 'starting from scratch' re: resolving their 'issues'.
Things have been improving somewhat for me and if that continues, I will likely not take the chance of a major PEM setback due to travel. But if things plateau or decline, I will look again into the specialist options.
@Sushi Thanks for the Vegas info on KDM.
 
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oceiv

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charlie1 said:
Dr. Lapp is taking new patients and booking in June-July. Dr. Enlander booking within the month.
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Are their schedules quite limited as to when you can see them? Do they see patients only on certain days, etc.? Curious for future reference.
 
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F

Folk

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Dr. Kaufman was a 1 month waiting list 2 weeks ago, now it's 3 months...

When is the next trip of De Meirleir to Reno?
 
charlie1

charlie1

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Never Give Up said:
Why not book an appointment? Six to eight months from now you may be glad you did!
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Yes, that's true. I can always cancel if I didn't need the appointment because of being all better ;) :balloons: :balloons:

oceiv said:
Are their schedules quite limited as to when you can see them? Do they see patients only on certain days, etc.? Curious for future reference.
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I didn't ask about that when I got the calls. Was just told that Dr. Enlander would be within the month. As for Dr. Lapp, they said they are now booking in the summer and that they'd need to send out a bunch of paperwork to be filled in before setting a date.

Folk said:
Dr. Kaufman was a 1 month waiting list 2 weeks ago, now it's 3 months...
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As predicted by Sidereal. There just aren't enough specialized doctors to meet our needs. :(
 
sparklehoof

sparklehoof

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I spoke with Klimas' office yesterday. I've been on the wait list since 2013. While the list is closed, when it opens they'll be booking in Aug/Sept. With Dr. Vera.

Does anyone have information about any of the costs associated with visits, saline IV's used during the visit, lab work, exercise testing, lodging or transportation etc? I will need to fly in, find transport and likely stay over for 1-2 nights at least.
I have Medicare (and Medicaid of RI) so Medicare would be my only coverage but it should cover 80% of the visit and maybe some of the testing.
Thank you
 
SOC

SOC

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sparklehoof said:
I spoke with Klimas' office yesterday. I've been on the wait list since 2013. While the list is closed, when it opens they'll be booking in Aug/Sept. With Dr. Vera.

Does anyone have information about any of the costs associated with visits, saline IV's used during the visit, lab work, exercise testing, lodging or transportation etc? I will need to fly in, find transport and likely stay over for 1-2 nights at least.
I have Medicare (and Medicaid of RI) so Medicare would be my only coverage but it should cover 80% of the visit and maybe some of the testing.
Thank you
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I'll be going down there at the end of May. I can give you current info about costs after that.

It is much easier to fly into Ft Lauderdale Airport and go to the Davie office than it is to fly into Miami Airport and go to the Kendall office. FLL is about a 5 minute drive from the Davie office and is an easy and pleasant airport.

MIA is one of the circles of hell for a disabled person. It is by far the worst airport for the disabled that I've been to so far. I cannot dis-recommend it enough. I would avoid it like the plague if I could. The Kendall office is some distance (not bad, but not close) from MIA, so transportation is a bigger deal there. There's a hotel within a few blocks of the Kendall office, iirc, so if you can safely walk that far, it might be a good option for you if you go to Kendall.

There are a number of hotels near FLL, some of which will have hotel-airport shuttles. You could then easily taxi the 5 minutes to the Davie office if you don't want to rent a car. Some hotels give discounts if you are a NOVA patient, so make sure you ask.

Exercise testing is generally scheduled separately from the normal visit, so if you want it, make sure you ask to have it scheduled while you are there. It is not automatically done.
 
T

taniaaust1

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Sth Australia
halcyon said:
This seems to be the general trend. If we don't get some new doctors in the field soon we're going to be really screwed when the current doctors start retiring.
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It's a world wide issue and one which is becoming a big issue in many parts of the world. I think a lot of the current ME/CFS specialists got interested in this back in the 1980s.

I've lost about 5-6 CFS specialists (they have no ones focused well on ME here) over the past 6-7 years as they've died or retired due to age or health. I know I'm in Australia but with the ones we lost in my state, it was the equalivant of losing over half of the ME/CFS specialists in my state who got into this from that time (one of mine had been dealing with this illness back in the 1970s I think it was). It may of been 3 quarters of them we've lost here in only 6-7 years.. and in that time we only got one new one here to replace all those (he's not young either, I'd say in his 60s but moved here from another state).

The IOM not recommending that we need actual specialists for ME/CFS (unless I've missed something) keeps us being lead down the path world over of not having enough ME/CFS specialists. If I don't get a new ME/CFS specialist in my state within the next 10 years, there may be NONE left here at all. (We are down to 3 ME/CFS specialists in my whole state currently).
 
halcyon

halcyon

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taniaaust1 said:
The IOM not recommending that we need actual specialists for ME/CFS
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That's the problem with them not being charged with reviewing treatment, now any doctor can diagnose it, but there's no recommended treatment. Not much difference between being undiagnosed and diagnosed with no treatment. Hopefully a lot of the clinical treatment knowledge is being institutionalized at places like Stanford, OMI, and INIM, so that any doctor that ends up in those clinics will know how to treat the disease. Unfortunately that leaves people like Lerner and Chia who work independently. What happens to their knowledge once they retire? Some of it is captured in the ICC primer but that's no replacement for their years of clinical experience.
 
Gingergrrl

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@halcyon that is a great question and is Dr. Chia training any residents or interns to carry on his work? Is his son also a doctor now in the same field (or am I totally mistaken on that?)

I believe Stanford is training PA's and I believe that OMI and INIM will bring on more doctors but I suspect it is hard to get doctors to willingly choose this as a specialty when they are not learning anything about it in med school except a few stigmatized comments.

I know that Ryan Prior's Foundation is offering a scholarship for med students to train with our ME specialists but not sure when this is starting. I know Dr. Van Elzakker is researching ME but I can't remember if he is a PhD or MD seeing patients?

I am so afraid as these doctors retire that some of their work will be lost like that of Dr. Goldstein. I wish they could all collaborate some how now but they are all booked solid seeing patients.
 
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