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Discussion Starter · #1 ·
OMG.......this disease is a living hell. I thought my IBS was bad but this is like living a death every day!!! Anyway, I was wondering if anyone has heard of Dr Cheney and is it worth it to make a trip to his clinic. I previously had considered the FFC clinics but my doctor was against it b/c she said they take your money and you feel no better. However, I'm getting desperate (as many of these clinics know & prey upon that fact).......any advice is appreciated.
 

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I don't have time to type you out a good reply right now, but wanted to say I have read your post, and YES I am very familiar with Dr. Cheney. I will be back to write a better reply, hopefully this evening.
 

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(I can say that I think Dr. Cheney's clinic is significantly different from the FFC clinics, as Dr. Teitelbaum is a bit of a kooky nut, IMO. No offense to any Teitelbaum fans/patients.) Ok, on to Dr. Cheney. He's actually been into the research/treatment of a group of fatiguing illnesses for a really long time. He was present in Nevada in the 80's and worked closely with Dr. Peterson during the M.E. outbreak in Lake Tahoe. Since that time, he has begun to focus more on general patients with fatigue...Over the years, he has continued to research/treat fatigued patients. His clinic caters to patients who are experiencing fatigue, which can be caused by a wide range of illnesses/disorders. So I think he is a good man, a good researcher and a good doctor over all.He makes no promises of a cure, but some patients have seen some improvement by going to him. Have you seen the website for his clinic? If not, Google "Dr. Paul Cheney Clinic", and you will find the link. Here is a quote from the website:
While most patients feel we have helped them, some are not helped, or only marginally helped. What we do best is help patients better understand their illness, empower them, help them adapt to it and prevent missteps and blunders that worsen it.
It's also very, very expensive to be honest. Between the expense of travelling to the clinic and staying at a hotel (he recommends staying about 3 days or so), and the actual costs of the appointment, for some people it's impossible. The first visit lasts approximately all day - so if you have little stamina, it could possibly send you into a flare. (The good news is that they do have places you can lay down in the clinic.) They recommend you go back about twice a year, so the expenses will accumulate - and of course, most insurance doesn't cover much of the visit (Medicare and Medicaid pay nothing, as do most private insurance companies). So, take all of it into account. A lot of the patients that have gone there are very happy they went - if nothing else they felt vindicated that they aren't crazy. Maybe your current doctor would be willing to do some of the tests that he lists on his clinic's website...that way at least you would have some of the same info.I don't know, I can't tell you what to do, and Dr. Cheney has helped some fatigue patients. Just try to weigh the pros and cons. If you have the money, and are up for a trip, go for it! But if you're barely getting by, then the cost itself might prevent you from even considering it. He doesn't claim to be able to cure anybody though, he's just willing to try to use some of the info he's gathered over the years to help people with severe fatigue.I'm really not sure if this has helped you, but I hope in some way it has. At least you can gather information and try to make as informed a decision as possible.
 

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Discussion Starter · #5 ·
Yes, your response has helped tremendously. I've actually researched his web sites (both of them) and have gone over how to become a patient. However, I've been going to the chiropractor and have had some improvement. So it's hard to think about going all the way to N.Carolina right now. Then again, it may be a good thing to become an established patient of his while I still have some energy. I watched his 3 hour lecture from a few years ago and was highly impressed with him. I just don't know if I'd take all the meds he may prescribe. I'm all for natural remedies b/c I have such bad reactions to meds (sensitive to the SE). Anyway, I'm also interested in Dr. Lapp's clinic who was Dr. Cheney's partner at one point. I do have an understanding PCP but she just prescribed Savella & Provigil (which I'm not ready to try yet...SE). I'm still working and I have a very flexible job but some days I feel like I can't do it. My husband is extremely supportive but the cost involved with going to see Dr. Cheney is quite expensive (as you put it). And my husband just says, "we'll spend all that money and you won't even take the meds".......lol, which is somewhat true. Anyway...Thanks again M&M
 

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I'm glad I was able to help, at least a little. It is so hard to balance the being hopeful with the being realistic...I think we win sometimes and we lose sometimes in that battle!
 

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Discussion Starter · #7 ·
Quick question about ME...it is often mistaken for CFS/FM, right? But this disease process has actual lesions in the brain stem? I asked a neurologist about ME today and he didn't even know what it was. When I told him that there are lesions on the brain stem (I think that is what I read), he said I wouldn't be walking if that were the case. Why doesn't this neuro know about ME?
 

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You're correct. The M.E. brain lesions aren't necessarily on the brain stem, but it does create lesions on the brain. They look somewhat similar to M.S. brain lesions, but show up as a slightly different color on a scan. The main reason most doctors in the US haven't heard of it (or don't believe in it) is simply politics.Here is a summary I wrote on this exact topic some time ago. Maybe it will answer some of your questions. If not, feel free to ask more. http://www.ibsgroup.org/forums/index.php?showtopic=112405This is another great site for learning more about M.E. http://hfme.org/(P.S. You just asked my favorite question ever in the history of questions. Thank you!
)
 

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Discussion Starter · #9 ·
WOW! This is really crazy, right!? I thought the diagnosis of fibromyalgia and CFIDS was confusing and now ME is a part of all this! So what does one really have? Well, no one knows.........I can see how they've done research for 20 years with no real strides if they are using this "mish-mash" of patient groups. What can we do? Let's all pray...
 

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Sorry it's been so long since I posted here...computer issues!
There is some good M.E. research being done by doctors such as Dr. Byron Hyde (and a handful of others). (And it's easy to diagnose with the right tests.) Some of the general fatigue research can apply to just about anyone dealing with fatigue too. It's just important to be aware of what's going on with your body, and then try to figure out what works in your particular case. We really have to be our own advocates in this case, and pick and choose the best options for ourselves. But you're exactly right. It's impossible to make real progress when your research pool is all mixed up!
 
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