INIM not accepting new patients...

[Kati]

For those who would like health care but the wait lists are long and costs would be a hardship, consider participating in a trial, it sounds like Nova has a few going and oftentimes they need to do screening bloodwork, amd tests such as exercise testing which would be covered by the trial.

Just a thought.

 

[SOC]

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.

Fortunately, INIM is doing more than bringing in new doctors. They are actually an institute at NOVA Southeastern University's medical school, where they [I]are[/I] training new doctors from scratch. So their doctors are (presumably) learning something intelligent about ME/CFS in medical school. I hope, although I don't know for sure, that all the doctors trained at NOVA are better (although perhaps not ideally) trained than they are at other schools. Relatively few, however, are going to focus on ME/CFS, of course.

 

[Kati]

Fortunately, INIM is doing more than bringing in new doctors. They are actually an institute at NOVA Southeastern University's medical school, where they [I]are[/I] training new doctors from scratch. So their doctors are (presumably) learning something intelligent about ME/CFS in medical school. I hope, although I don't know for sure, that all the doctors trained at NOVA are better (although perhaps not ideally) trained than they are at other schools. Relatively few, however, are going to focus on ME/CFS, of course.

Correct me if i'm wrong, but Nova is a school of osteopathy, it is not mainstream medicine. I think it is quite unfortunate that way.

 

[SOC]

Correct me if i'm wrong, but Nova is a school of osteopathy, it is not mainstream medicine. I think it is quite unfortunate that way.

Yes, you are right, and I agree with you at some level. However, my local extremely EBM medical monopoly does not distinguish between MDs and DOs, so I'm guessing DO's are more mainstream than I used to think.

I suspect this is where we are with ME/CFS. Drs Klimas and Rey used to work at University of Miami. A couple years ago NOVA offered Dr Klimas a research/clinical institute to study ME/CFS and the opportunity to teach new doctors about ME/CFS, and INIM was born. Who's going to turn that down because it's a school of osteopathy? Beggars can't be choosers. Hopefully more mainstream medical schools will also have divisions dedicated to ME/CFS. Until then, we do the best we can with what we have.

 

[oceiv]

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).

In most U.S. states, there are no ME/CFS experts. This is but one factor in the dire doctor access reality for most ME/CFS patients (like me). There are no experts in my state.

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.

Sadly, yes. I really do wonder how many patients are getting appropriate treatment. It's hard to find data on what the percentages are. Considering the lack of enough experts, how many patients could approximately 24 experts possibly be seeing? I do wish the experts could and would pass their knowledge on, some weren't even in the primers. Expert retiring worries have been on my mind frequently as of late.

 

[halcyon]

Considering the lack of enough experts, how many patients could approximately 24 experts possibly be seeing?

Clearly, given the wait times, they're having trouble fitting in all the patients they currently have. If the IOM report figures are correct and 2.5 million Americans have ME, with 91% of them undiagnosed, imagine what would happen if even 1% of those people were to get diagnosed and start seeking out a specialist.

 

[jimells]

For those who would like health care but the wait lists are long and costs would be a hardship, consider participating in a trial

I'm still waiting for the day when someone decides to do a serious study of the severe patients. Since that would require house calls, and doctors are way too Important to visit patients at home, I expect to be dead long before that study happens.

 

[Kati]

I'm still waiting for the day when someone decides to do a serious study of the severe patients. Since that would require house calls, and doctors are way too Important to visit patients at home, I expect to be dead long before that study happens.

A couple of research teams are preparing to study the very severe including omI, Natelson if I am not mistaken and Dr Klimas's group.

There are, I am sure many difficulties associated with that including logistics, access, and so on.

 

[Denise]

@Kati is correct that some practices/research teams are going to include housebound patients as part of the CDC multi-site study.
(The following is provided for information purposes only. I do not encourage or discourage participation.)

My understanding is that Dr. Natelson (or a member of his team?) has said he will visit housebound patients in the Manhattan area in their home so that they will be included in the study. (Clinic contact info: http://www.painandfatigue.com/contact_us.html refer to the study called NEW FEDERALLY FUNDED GRANT TO BETTER CHARACTERIZE CFS )

 

[oceiv]

OMF is fundraising for a severe patient study:

From my sig:

Donate to the Severe Patient Study at OMF. For instructions on how to earmark your donation for this study, look here. More info on this study.

We do really need to more government studies to include severe patients. It always comes down to money. Good to hear that the CDC study will be incorporating at least some.

Does anyone know if Dr. Chia or Klimas/associated doctors do phone consults?

Clearly, given the wait times, they're having trouble fitting in all the patients they currently have. If the IOM report figures are correct and 2.5 million Americans have ME, with 91% of them undiagnosed, imagine what would happen if even 1% of those people were to get diagnosed and start seeking out a specialist.

Yes. This means that somehow as patients, we have to push for more good doctors, who will give appropriate care to ME/CFS patients. I'm personally trying to advance this goal.

 

[taniaaust1]

In most U.S. states, there are no ME/CFS experts. This is but one factor in the dire doctor access reality for most ME/CFS patients (like me). There are no experts in my state.

I wasn't refering to that level of ME specialists, there are none of those at all in my state at all like your own state. Most states of whatever countries do not have ME specialists. America though has more of those then any other country.

I was just refering to those who believe this illness is a real one and are willing to try to help those with it and willing to take this patient group on. I was refering to basically "CFS" specialists. At least they will try to treat symptoms, whereas I found other doctors here wouldn't. I couldn't even get meds for my severe sleep issues before I saw a "CFS" specialist. Im sure there are several "CFS specialists" in your state even if their isn't ME ones (note these specialists can be quite hard to find and often the only way to find them is enquiring from associations or ME/CFS websites).

All the CFS specialists in my state have a belief in GET and CBT too..but at least they are willing to see ME/CFS people and if one is very ill they wont try to force those things onto one. The most well known CFS specialist in my state highly praises the PACE trial.

 

[taniaaust1]

I'm still waiting for the day when someone decides to do a serious study of the severe patients. Since that would require house calls, and doctors are way too Important to visit patients at home, I expect to be dead long before that study happens.

I would really love to see some studies done with ONLY housebound and bedbound people. How would this specific group vary from those who aren't as severe. I so want to know that.

 

[jimells]

Im sure there are several "CFS specialists" in your state even if their isn't ME ones

I beat the bushes for years trying to find someone knowledgeable that might actually try something useful. Half the doctors said I wasn't sick and the other half said they couldn't help and didn't know who could. My current Family Nurse Practitioner acknowledges I'm sick and wrote a helpful statement for disability, so that was a huge help. She does treat the POTS and migraine, but beyond that I am on my own.

Most of the local doctors won't even accept me as a patient. Nobody with chronic pain gets past the front door - because we're all drug addicts and drug addicts don't need or deserve medical care, apparently.

 

[Gingergrrl]

OMF is fundraising for a severe patient study:

It's true and they are trying to raise money non-stop but they need government funding or a very large donor and I wish I knew how to make that happen! When I think of this study, it is one of the few things that gives me hope, but I don't see how the study will proceed without major funding. It's the same with Dr. Lipkin's microbiome study. I can't understand why both of these do not get government funding or a large private donor. Why are we so unworthy of real help?

 

[oceiv]

I wasn't refering to that level of ME specialists, there are none of those at all in my state at all like your own state. Most states of whatever countries do not have ME specialists. America though has more of those then any other country.

I was just refering to those who believe this illness is a real one and are willing to try to help those with it and willing to take this patient group on. I was refering to basically "CFS" specialists. At least they will try to treat symptoms, whereas I found other doctors here wouldn't. I couldn't even get meds for my severe sleep issues before I saw a "CFS" specialist. Im sure there are several "CFS specialists" in your state even if their isn't ME ones (note these specialists can be quite hard to find and often the only way to find them is enquiring from associations or ME/CFS websites).

All the CFS specialists in my state have a belief in GET and CBT too..but at least they are willing to see ME/CFS people and if one is very ill they wont try to force those things onto one. The most well known CFS specialist in my state highly praises the PACE trial.

Not many of those around here. The few who are, are some combination of these three 1) out-of-pocket appointments 2) push many out-of-pocket treatments they sell or provide 3) don't know what they're talking about 4) have few, if any successes treating symptoms. Then, there are doctors who say they'll accept you, but run you ragged looking for other causes to your symptoms (IOW, they don't really believe in our disease, but won't say so). There's one place I can think of that fits your description. It's at least an hour away. Very hard to get seen. When I was able to get local treatment, it was for co-morbid conditions with overlapping symptoms. One of the doctors who was treating one co-morbid condition was also treating ME/CFS. But later his practice stopped him from treating ME/CFS. I guess I'm "lucky" I have co-morbid conditions. I'm working on a poll about doctors.

It's true and they are trying to raise money non-stop but they need government funding or a very large donor and I wish I knew how to make that happen! When I think of this study, it is one of the few things that gives me hope, but I don't see how the study will proceed without major funding. It's the same with Dr. Lipkin's microbiome study. I can't understand why both of these do not get government funding or a large private donor. Why are we so unworthy of real help?

I'm with you 100% (or more, if that's possible ). The dire doctor situation is a direct result of the health agencies' history with this disease.