Anyone from Europe gone to the Open Medicine Institute?

[CantThink]

Hi all

As I'm not in a position to visit any M.E. doctor right now, I'm using the down time as an opportunity to create a shortlist of who might be suitable for me to consult with at some point (probably next year).

I have been reading about the OMI in threads/posts by a few forum members. It sounds as if it might be a good (albeit extremely far) fit for me.

So, on that note, I was wondering if anyone on the forum has travelled there from Europe?

If so, how long did you stay for?
How much (roughly) did you end up spending on medical expenses, and how much on accommodation/food/transport once there? (The flight part I'm not bothered about as I know it will vary widely depending upon where one's travelling from/time of year etc).

I'm not sure that I'll even be able to do this or want to (I'm on the fence about whether cost and effort is worth it). However, to make my decision I'm trying to get as much info as possible.

Thanks in advance!

 

[Never Give Up]

We haven't been, however, I did call them once. I seem to remember they were friendly and full of information over the phone, so they may be able to answer all of your questions and alert you to issues you might not have thought of. We know people who have been seen there once and had all subsequent interactions via telephone and email, so one trip might be enough.

 

[Sushi]

So, on that note, I was wondering if anyone on the forum has travelled there from Europe?

Someone has but I can't remember who. They saw Dr. Kogelnik so you might find it in one of his threads. The problem you would encounter is that you would have to see him once a year for him to be able to legally prescribe. Maybe Skype counts these days? My doc won't count it as enough to remain his patient though--I have to see him in person.

Sushi

 

[CantThink]

@Never Give Up

Thanks for your reply. The 'virtual' follow up sounds a good point as it would make it more doable.

I think perhaps I'll give them an email and see what they say. I know people from Europe do go there (according to what I've read on here) but I can't find anyone from Europe talking about it (I tried Google briefly the other day).

 

[CantThink]

The problem you would encounter is that you would have to see him once a year for him to be able to legally prescribe.

@Sushi

Good point - I had noted that issue previously and thought about it. That wouldn't put me off if they were actually helping me. I think it makes sense to be seen in-person once a year, although with this disease it's hard enough to get to places more locally so it is a bit daunting!

Whichever doctor I choose (if I do choose to see an M.E. doc) I would have to travel quite far. Although admittedly KDM is nearer, just getting from my house to an airport or train station, and then from there onto the air plane/train would be similar effort - the main difference would be time taken in the air versus on the train, and thus jet lag. It's something I'd have to think about.

One of my strongest thoughts is if I go to all effort of seeing one of these doctors, I want to be able to do any treatment without relying on my country... I don't know how to explain... I just don't trust this country or the national health care (or lack thereof). So the whole effort would need to be offset or rewarded by the gain of being able to procure help/treatment I am not getting or can't get here.

 

[aquariusgirl]

if he Rxs valcyte & desmopressin, how are you going to pay for these drugs?

if he Rxs valcyte and requires labs to monitor liver and kidney function....who is going to run those labs/tests?

In the US, you go back home and you find a GP who will run those labs and you follow up by phone.

I think your UK GP or ID specialist would be uncooperative in such a scenario..... I could be wrong...

Not saying it can't be done. Just saying it requires thinking thru...Getting there is the easy part....it's the follow up and the paying for everything that is hard.

 

[aquariusgirl]

ring up the office ...ask them how foreign patients are coping..

 

[CantThink]

if he Rxs valcyte & desmopressin, how are you going to pay for these drugs?

if he Rxs valcyte and requires labs to monitor liver and kidney function....who is going to run those labs/tests?

In the US, you go back home and you find a GP who will run those labs and you follow up by phone.

I think your UK GP or ID specialist would be uncooperative in such a scenario..... I could be wrong...

Not saying it can't be done. Just saying it requires thinking thru...Getting there is the easy part....it's the follow up and the paying for everything that is hard.

It depends how long I'd need to be treated for I guess in terms of the viability of treatment cost. This is why I was asking if anyone has actually gone thrre from Europe, and for their experiences. The fact people mentioned that Europeans (and people from other countries outside the US) attended OMI suggested that it might be possible and piqued my interest.

Most blood tests I can order myself through private blood testing without a GP or other UK doctor.

I think I'll leave all these thoughts now. Thanks for answering everyone.

 

[SOC]

Just a little reminder, in case you aren't thinking about this --
The US does not have a socialized medical system. Medical care costs far more in the US than in most European countries. Patients manage by purchasing insurance, which covers a significant portion of the cost.

I often smile when I hear European patients complaining about the cost of some doctor visit or lab, because it's often a small fraction of what a US patient without insurance would pay -- and often less than we pay even with insurance.

My personal opinion is that getting a large part of my life back is worth a lot of money, but if the money just isn't there to pay, it just isn't there.

You might try calling OMI, telling them you're a European patient without US medical insurance, and you'd like to get a feel for the full cost of the doctor visits and labs.

I also agree with an earlier poster who pointed out that you will need to make sure that you can get any prescriptions or lab requests written by OMI filled in the UK.

 

[L'engle]

I think it would be hard to get a local doctor to agree to the prescribing before the visit to OI, but maybe after that with the labs and the specialist opinion a GP might be more likely. I don't know though. The barriers to even getting a chance to get well seem to be prohibitively high.

 

[SOC]

Are prescriptions and lab requests written in one country not honored by other countries? In other words, do you have to have a local doctor prescribe the meds and labs the OMI doctor wants?

I know that within the US, it's not necessary to have a local doc supervise treatment. My local EBM-based medical monopoly won't order anything my specialist requests, so she just mails me the scripts and lab requests which I can then get filled locally. That is all within the US, of course, and may not apply between countries.

 

[IreneF]

I know Open Med has had patients from overseas but I have no idea how they paid for everything (transportation, hotel, treatment). @Kati's gone there from Canada but she's actually closer to OMI than people who live in the eastern part of the US.

 

[Kati]

Just to add to the conversation, the usual screening tests that any lab can do, you know, CBC, liver, kidneys, thyroid, are not the tests that cost a lot of money, and sometimes it is best to let OMI do them anyways because the results are in english and using referance ranges that are standard in the US.

The tests that are most important for us happen to be the most expensive, and not necessarily available in other countries. for instance, Viral titers are not offered for regular patients in Canada (ordered from a GP) , just the HIV and transplant population. We get EBV IgG reactive or non reactive, IgM reactive or non-reactive. The titers cost a lot of money. NK cell function is a difficult test and costs approximately 500$, and in order to get accurate results, would be best performed under specific conditions (fresh blood, received at the lab within a certain # of hours) and there are lab variations as well. Depriving OMI from these labs or providing results from other countries means that it affects their ability of getting a clear(er) picture.

Just my 2cents anyways.