Some of us are too far away to get testing for these viruses/Lyme etc that many of you talk about. And even if we could afford (physically and financially) our flights, hotels, consultations and testing etc. we are afraid of the intense PEM that will follow and perhaps leave us worse off. If follow ups are required, it will be next to impossible. Also to consider is the very long wait lists to be seen by the well known CFS doctors. I will see what a functional medicine doctor 3 hrs away can do to help me.
Despite the IOM report, I'm more discouraged/bummed now than I've been in a long time
Please keep us posted. Best of luck to you!
Agreed. I think each person probably knows how they would likely react to a long trip and respecting that is important. I chose to take an international flight to see a doctor but I arranged to get there quite a few days ahead and just rest until my appointment. That worked for me, but might not for others.
Absolutely! We each know best what our bodies can handle.
I doubt that's realistic for the vast majority of us. There are very, very few patients who have reported finding an understanding local physician. My community has a large medical monopoly whose so-called EBM policy does not treat ME/CFS as a biomedical condition. No local doctor will cooperate with my specialists for testing and treatment, and my specialists have tried. Now my specialist writes the scripts, and testing orders which I can have done locally. I only need to see her once a year for her to be able to do that. It's a whole hell of a lot less stressful and physically demanding than going into my local clinic for any kind of treatment.
Absolutely! We each know best what our bodies can handle.
I do think, however, that some patients don't realize there are ways to reduce the physical demands of travel. You can taxi to the airport (wearing headphones and dark glasses), and be wheelchaired from curb to plane and plane to curb (again with headphones and dark glasses). Taxi to the hotel (the wheelchair attendant will take you to the taxi). Go straight to bed as soon as you get to the hotel. Order room service if your diet allows. Don't go anywhere except to the specialist's office for your appointment and stay in bed the rest of the time. Plan rest days at the hotel before and after the appointment if you need them.
You don't have to walk, you don't have to pick up or carry luggage. You don't have to drive. Hotels will give you a room near a door or the lobby if you tell them you have health issues that require it. If you act like the very sick person you are, most people are helpful and will treat you well.
If you have a travel companion, it's even better because your companion can even wheelchair you in and out of the hotel and doctor's office. You can act like luggage -- just sit in the chair the whole trip and shut out everything. I've done that a number of times, particularly when I was in the stage where I PEMed walking across a room.
I'm not saying this will work for everyone. I'm just saying that too many PWME want to act "normal" when they travel and then feel they can't travel because they can't do it like a healthy person does. The good news is: we don't have to! We're very sick people and we can (and should) travel like very sick people.
I'm also not saying it's 100% easy to travel by air to see a top specialist. When I was bedbound, I had to plan far in advance, rest even more before and after the trip, and sometimes I still got PEM. But it was worth feeling worse for a couple weeks a few times to get the treatment that moved me from bedbound to working full-time (after a fashion). After a few twice-a-year trips to the specialist, the treatment improved me enough that I don't PEM from the travel (as long as I'm smart about how I travel).
Long-distance travel to see a top specialist is definitely not for everyone. We all need to make that kind of decision based on our understanding of our individual condition. But I suspect too many people are depriving themselves of a very real opportunity for significant quality of life improvements because of incorrect perceptions about the difficulties of traveling as a very sick person.
I know for me it would only be possible with the aid of my parents - one to assist me and one to hold the fort here (and look after my pets). 
CantThink, I am fairly new here , but how do you guy's make it ? I mean my son can't work and we are going through our saving trying to some help for him to at least get him working and supporting himself again. Seems like a catch 22, to sick to work, no money or energy to get anywhere to try something ! Kind of discouraging, but there must be some light at the end of the tunnel....... Be well@MeSci
I understand.
If I had to do it alone, I wouldn't even consider it.
To be honest, I am off the idea of seeing wn M.E. doctor, as I just don't see how I'd manage to put any of the treatment recommendations (if there were any) into practice while living in this country. It's just a big risk, and a load of stress.... Potentially for no gain.
I realised recently I think I'd rather try to exist better within my current limitations than risk deteriorating further to the point where I couldn't even function at the level I'm at now.
Maybe I'll change my mind... I think I'd be more likely to if there were more obvious recoveries from such action.
I tried that... only I just kept getting worse, not better. So by the time I realized I absolutely had to get myself to a top specialist, I was bedbound and the travel was much harder than it would have been if I'd gone earlier.That's exactly how feel!! We have to weigh the odds of further decline. Ugh...PEM sucks
I'm still open to traveling for help, but it just can't be done until I'm much better.
I tried that... only I just kept getting worse, not better. So by the time I realized I absolutely had to get myself to a top specialist, I was bedbound and the travel was much harder than it would have been if I'd gone earlier.
That's the insidiousness of this illness.! Just when it looks like I may be gaining some headway, BAM, I'm hit hard for days or weeks without knowing why! That drives me crazy !!
