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CFS Conference: Is Oxygen the Problem and Why ?


CFS Conference (no charge)

Is Oxgen the Problem and Why ?

Registration is requested for the Cheney seminar (703) 968-9818

The seminar by Paul Cheney, MD, PhD

When ? Saturday, April 25th, 6 - 9 pm

Where ? Fairfax Board Auditorium of the Government Center in Fairfax, VA12000 Government Center Parkway, Fairfax
19 Responses
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Avatar universal
I also use oxygen in time of Addison Crisis........I also experienced less pain while using it.  Be very mindful though, too much oxygen is not a good thing.  

I have no idea how taking oxygen helps sleep problems...um, very interesting.

It is difficutlt to come to terms with what kind of pain we experience along with gazzillion other symptoms, but carry on we must.  My maddening way of coping is scream and cry if it gets too much.  Oooooooooh, what a relief it is!!!...

I try finding good things I have everyday....so bearing with this illness is easier.

Take care all.........a huge carebear huggies!!!

Helpful - 0
Avatar universal
I HAVE TO WEAR O2 AT NIGHT FOR SLEEP APNEA AND FROM TIME TO TIME I HAVE TOLD MY DOCTOR THAT MY PAIN WAS GETTING WORSE AND USUALLY ONE OF THE FIRST QUESTIONS SHE WILL ALWAYS ASK IS ... ARE U WEARING UR OXYGEN AND THERE WERE A FEW TIMES I SAID NO AND SHE TOLD ME THAT COULD MAKE MY PAIN WORSE WHEN MY OXYGEN LEVEL DROPS DURING SLEEP AND IT CAN ALSO MAKE U VERY TIRED ALL THE TIME.  I DONT KNOW IF I REALLY FIND A DIFFERENCE  BUT MAYBE THERE IS .  IM JUST TIRED AND FULL OF PAIN NO MATTER WHAT I DO AND IM SICK OF THAT!!
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Avatar universal
Well folks, it sounds like a breathing problem for me.  The rheumatologist that I saw in the beginning of March suggested that I see a sleep doctor and I had the 2 part sleep study done.  I was delivered the cpap machine on Tuesday, May 5th and have tried it for 2 nights now.  I feel a little less tired and hope as time goes on that I am not tired at all then I can work on the pain a little better.
Helpful - 0
Avatar universal
I also admire his spirit and that of everyone else working so hard to get results for those suffering.  I'm just so frustrated though because it's like a hit and miss with us.  There are so many different issues it seems, but no one treatment that works.  We have infections that need treatment; vitamin D probs.; heart probs.; fatigue; muscle pain; low oxygen...should I go on? lol  

I know the docs. have the best of intentions.  I truly believe that...there are just so many protocols that are being used and it's difficult to know which ones are going to be helpful because they all differ in some fashion.  I don't mean to sound negative...i'm having one of those days.  :-(  
Helpful - 0
Avatar universal

I also admire Dr. Cheney. I know that he has been a huge proponent for CFS/ME patients. He is also on the board for a fair name change and supports changing the name "Chronic Fatigue Syndrome"  to myalgic encephaloyelitis. At least the Europeans are calling it what it is !

Dr. Cheney has been a huge asset to the CFS community... especially his findings on heart & oxygen problems in CFS. This is what ProHealth has written about Dr. Cheney:


"Dr. Paul Cheney, M.D., Ph.D., is one of the world's most recognized names in Chronic Fatigue Syndrome treatment and research. Currently practicing in Asheville, North Carolina, he has treated more than 3,000 patients with CFS from 48 states and 15 countries. Dr. Cheney has published numerous articles in peer reviewed medical journals, has lectured around the world on the subject of CFS, and is constantly pursuing research to refine his understanding of this dysfunction and develop an experimental treatment protocol for addressing it. He was a founding Director of the American Association of Chronic Fatigue Syndrome (AACFS), a professional association of scientists and clinicians. He was chosen to chair a select panel of nationally known clinicians to discuss treatment at the CFS Conference sponsored by the AACFS and Harvard Medical School in October of 1998."

http://www.prohealth.com/library/showarticle.cfm?id=3157&t=CFIDS_FM
Helpful - 0
Avatar universal
ME/CFS is a disease with on-going process, I admire Dr. Cheney's pionerring spirit and continue to find answers for us.

I'm looking forward for the DVD to come out so I can have a close listening to all that he says.

Thanks PG for the info.

Good day.  
Helpful - 0
Avatar universal

P.S. ~ I had my vitamin D levels tested and had a low vitamin D result and a much higher vitamin D 1,25 hydroxy. This is due to vitamin D dysregulation.... a result of intracellular bacteria. I was told that my 1,25-D result of 58 pg/ml was 3.05 sigma high and based on population studies, 99. 89% of the population would be expected to have a lower number.
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Avatar universal

I know it makes people nervous when physicians do this, but on the other hand.... CFS is really a new disease and perhaps Dr. Cheney's research has led him into a new direction. That is a good thing. It is good when physicians learn new stuff and admit that they were wrong.

The vitamin D issue is very controversial, but I have strong opinions on this. My body does not want vitamin D and when my illness was at its worst, I found myself blocking out the sunlight. I also remember a MedHelp member who had mono and a low vitamin D level. She was confused because she lived in sunny Florida and had a suntan. Months later, she reported that she was feeling better and that her vitamin D level was back to normal.

So although this is very controversial, it is information and you can choose to ignore it or discuss it with your physician. I choose to listen to my body and I have discussed this with my physician and he tends to agree with this new research. I've watched many people with autoimmune diseases take vitamin D for years and get worse. It can make you feel better in the short term (it is a seco steriod hormone), but not in the long run. My .002 cents worth on the topic.

Vitamin D may exacerbate autoimmune disease

http://www.bio-medicine.org/biology-news-1/Vitamin-D-may-exacerbate-autoimmune-disease-7924-1/
Helpful - 0
Avatar universal
It concerns me that he was using a protocol (which at that time he said was beneficial) that he is now claiming could be harmful.  I'm glad that there are those who are looking into treatments, but it worries me that there isn't enough research done beforehand to insure that the protocol's are safe.

I think I would be hesitant to try his protocols after this incident.  Just my humble opinion.
Helpful - 0
Avatar universal
Wow ! Dr. Cheney has reported some of his new findings and changed his protocol. And he says that vitamin D3 is toxic ! I actually agree... because Trevor Marshall has reported this. Is a low vitamin D level (which is not a true vitamin... it is a seco steriod hormone), the cause of illness or the RESULT of an illness ? I think it is the result and I also think that vitamin D is not healthy (in the long run) in people who have chronic illnesses. So I agree with Cheney.


Dr. Cheney Goes His Own Way: the Virginia 2009 Lecture

http://aboutmecfs.org/blog/
Helpful - 0
Avatar universal
I don't know if you've had the chance to check out some of Dr. Steven Park's blogs on breathing and sleeping disorders. I really enjoy some of his posts and find them to be quite helpful... here's the link:

http://www.medhelp.org/user_journals/index/645869?page=5&personal_page_id=1064&sort_by=date
Helpful - 0
216278 tn?1308861082
My osteopath actually told me a few months ago that there was a huge correlation between the pain that I feel and the fact that I don't 'breathe properly'!  

I am always willing to try things that are non-evasive and non-chemical!  Can't hurt!
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329994 tn?1301663248
Just curious as to what main supplement you take? I will check out those articles!
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Avatar universal
I sure wish I was in better condition so I could make some of these events.  This has also been suggested in FMS...the oxygen theory.  I hope he will place some info. from the conference online for us to view.
Helpful - 0
734343 tn?1239601741
sorry I should mention that these links are to articles and NOT product sales.....the post may get bumped and that is not my intention to sell anything....just give some food for thought....if it does get bumped, google body PH or acid/alkaline. Good luck.
Helpful - 0
734343 tn?1239601741
yes oxygen is a problem but not just for CFS. Almost if not all disease and disfunction (not family disfuntion!) is due to lack of oxygen in the body.
research PH levels, acid/alkaline body on google and you will find many great studies and articles about it. here are a couple links to get you started. It is very important to have an oxygen rich body and it does relate to detoxification of the body and antioxidants as this is why we have high acid and oxygen starved bodies that lead to disease.
People all over the world are healing themselves of disease -CFS too by using some very simple methods....I use only one main suppliment to boost my PH and maintain balance but most times I use 4 and should really always use them.

http://www.naturalhealthschool.com/acid-alkaline.html
http://www.safesolutionsinc.com/cancer.htm

I have many, many links if anyone is interested you can message me.
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Avatar universal

Nope... he's talking oxygen. You can google his name and find out some of his research online. It is yet another interesting, but twisted component of CFS.
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Avatar universal
Yeah, it's an interesting question.  Maybe he's talking about oxidants vs. antioxidants?  I know some people have reported significant reductions in their symptoms by having a lot of antioxidant supplements or foods in their diet.
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329994 tn?1301663248
Interesting question? I wonder what he means by that. I am curious because I keep scoring low on my pulmonary function test and they can't figure out why. Why is my oxygen diffusion level low? Could it be related?? Wish that seminar was closer to home.
Helpful - 0
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