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Chronic Fatigue Syndrome/ME
May 19, 2010
Question About the Two Forms of CoQ-10
Re: “Ubiquinol – A More advanced form of the energy-producing nutrient CoQ-10”
Q: How fast acting is ubiquinol? More particularly, how does it compare to ProHealth CoQ Absorb? - L
A: (ProHealth’s Customer Service Team responds) Ubiquinol CoQ-10 is more fast acting than ubiquinone, including the most absorbable formulation of ubiquinone - CoQ Absorb. The ubiquinol form of CoQ10 is more fast acting than any ubiquinone product because it arrives bioactive (ready for the mitochondria to use in making ATP).
By comparison, any ubiquinone must first be converted by the mitochondria into ubiquinol before it can be used - a process that in itself requires time and an expenditure of energy. While the process is efficient in young, healthy people it appears to become less efficient with age or chronic illness.
Legal Guide for the Seriously Ill & Their Family/Caregivers
Below is the Table of Contents, as well as the web site, to read the 50-page, very informative document entitled "Legal Guide for the Seriously Ill," about advanced care planning [and more]. It is from the National Hospice and Palliative Care Organization and has so much useful information. (Safe Web site to read the following www.caringinfo.org/UserFiles/File/PDFs/AdvanceCarePlanningLegalIssues/Legal_Guide_for_Seriously_Ill.pdf) - T
Table of Contents
Acknowledgements - p 2
Using This Guide - p 3
Step 1. Plan How to Pay for the Health Care You Need - p 4
Step 2. Make a Plan to Manage Your Health and Personal Decisions - p 14
Step 3. Make a Plan to Manage Your Money and Property - p 20
Step 4. Plan for the Care of Dependents - p 30
Step 5. Know Your Rights As a Patient - p 34
Step 6. Know Your Rights As an Employee - p 41
Step 7. Get Your Legal Documents in Order - p 46
Conclusion - p 49
Appendix: Finding Legal Help - p 50
Soles4Souls® Needs Our Gently Worn Shoes; Drop-Off Locations Almost Everywhere
Soles4Souls (www.soles4souls.org) is a nonprofit that receives donated "gently used" or new shoes and organizes their worldwide distribution. They have drop-off places in most US towns, and the list is growing. This great charity got started after the 2004 tsunami and Katrina, and has redistributed more than 8.7 million pairs so far (one every 9 seconds) to hundreds of locations worldwide. A recent focus was Middle Tennessee flood victims. (Ironically, the organization is based in Nashville.) Go to their website and type in your zip code under "locations" to see the nearest drop-off site for personal shoe donations, or read about other ways to get involved. - R
Watch the Video of Dr. Sarah Myhill's TV Interview
[Note: to watch the excellent 40-minute video of Dr. Myhill's TV appearance on May 20, go to
http://picasaweb.google.com/supportdrmyhill/videos#5473706453049169202. She begins by explaining the role of nutrition in preventive healthcare, disease management, and efficient mitochondrial energy production.]
Her initial announcement...
Just to let you know – this Thursday May 20th at 8 pm London time, Sky Channel 200, yours truly will be performing. Theo Chalmers is hosting a two hour chat show live (“On the Edge”) – so I should be able to vent all my spleen during that time! The idea is that viewers can text in their questions and I will respond live. Should be fun!...
Yours truly, Sarah
Some Form of Exercise is Vital for FMS, But…
Some form of exercise is vital for FMS, even if it's just light flexing and stretching. The problem is that we need to address our pain before we can exercise or we can worsen our symptoms. Most of us will never be able to exercise like we used to, but it is important to keep moving for strength and flexibility.
Our problems are not inflammation of the joints – and… injections will not help us unless we happen to have an inflammatory condition in addition to FMS. I started with a pain specialist who helped me get relief from my pain. My rheumy sent me to physical therapy where I learned these exercises which I was able to do even when bedridden from fatigue (I also have CFIDS). The stretching and flexing actually alleviate the pain. Gentle Yoga, Tai Chi, and using my big plastic ball are all helpful.
When I feel well and it's warm, I work out in the pool and swim laps. I never exercise when I am too tired and I started out slowly and built up. We are all different and have different needs. – M
Banking on XMRV & Can’t Wait to be a Guinea Pig!
There are "alternative treatments" with empirical evidence behind them. Those are the ones I go for because I can't afford to throw my money away. My latest "alty" venture is medical grade denatured whey protein. Good evidence behind it that it helps. I would much prefer an actual TREATMENT - if not a CURE. But I know alternative "med" is not equipped to provide me with that.
It’s the XMRV link I'm banking on. Once that's established, beyond a doubt, Big Pharma will be hard at work (they actually already are)... AND I CAN'T WAIT! Guinea Pig me, oh please please please! - A
Vitamins - Who's Scamming Whom?
Re: "Who's Running the Scam - Vitamin Companies... or Reader's Digest?"
• Shame on Reader's Digest, heh? They have - as you knew - really sold out to Big Pharma. I've read how so many people were sick at them printing such a misleading article recently, they have taken a LOT of flack for it... xo – K
• Thank you for this well-written article. Having studied for many years the controversy about vitamins and taking them myself, even as a lay person I know that many of these studies on either side are screwed up by funding or just plain untruths.
• CoQ-10 saved my life after I was diagnosed with congestive heart failure. I have adverse effects from many drugs; if there is a side effect I have it, so I had to find some other way to help myself. After researching on the Internet I came across a study in Japan about the effects of CoQ-10 on people with congestive heart failure. Began taking it and after being told I would probably die in five years, here I am still chugging along 8 years later. Trouble with vitamins is that people do not know what they are doing when they take them. They either mix up vitamins that should not be taken together, take synthetic vitamins, or take too many of them. They just stuff whatever in their mouths without knowledge. Clear articles like you just wrote help to educate all of us. Thanks again for an excellent rebuttal. - C
• Follow the money. Did you ever notice that drug companies are major advertisers in RD? You can't sell drugs if people are healthy. What better way to ensure future revenue than to misinform people and lead them away from preventive health measures? I wouldn't be the least bit surprised that if we could follow the cash flow on this article, it would come straight out of big pharma. In the early 90's the drug companies were behind a proposed federal law that would require a prescription for any vitamin product stronger than the RDA! Fortunately that law did not pass, but they have kept coming back to gullible members of Congress trying to pass that legislation. One long term strategy to ensure its passage is to build public distrust of vitamins, and a linchpin in that strategy is to manipulate a blind press that fails to perform due diligence or is financially beholden to the drug advertisers. I'm grateful for medications that have helped many people, but big pharma's drive to undermine preventive wellness via discrediting dietary supplementation is unconscionable. – D
• I remember reading this article in Reader's Digest a few years ago, so they either re-ran it or updated it, and at that time, as well as now, I thought the same thing. The drug companies are making billions of dollars on prescription drugs - they of course don't want people to find cures for their ailments through vitamins. My thought was that Reader's Digest may have given in to the powers that be in these Big Drug Companies. How disappointing. I used to subscribe to RD but I let my subscription lapse a few years ago as I found their stories not to be informative, as they were long ago, but more like tabloid stories. - R
New Zealand Fibromyalgia Rehab Study
Re: "Results of Multidisciplinary Inpatient FM Rehab Program in New Zealand"
It's interesting that even a very intensive and multidisciplinary "rehab" program couldn't take away fibro symptoms and the need to take meds. That doesn't surprise me because I believe FM has a physiological cause. But the encouraging part was that, very often, the patients' lives were better even 10 years later, and many of them were able to work more/more often as a result of the social dimensions of the program, where they learned how to share and network - the "social integration and participation." I know my life and outlook improved after I joined an e-mail group-learning & support program. - P
New Pain and Fatigue? Don't Always Blame the Fibro
• I officially have FM, but have the [ME/CFS] post-exertional malaise too. I'd been having a major increase in pain and fatigue the last couple of months. One leg was especially bad. I blamed the FM, and just tried to keep going; 2 weeks ago I stumbled and twisted my knee, which then dislocated every time I put weight on it (I have Ehlers-Danlos Syndrome too, so my joints have always been loose - but not THAT bad!)
ER doctor doesn't even touch the knee, let alone examine it, tells me the X-ray shows only arthritis, and I've "just sprained it." Orthopedic guy wants a referral, and doesn't think I need to come in for a sprain. So I have to go to the family doc to jump through the hoops for a referral. Fortunately, he agrees that something bad is going on with my knee. He puts me on crutches.
I finally get to see the orthopedic doctor, who finally runs the right test (a weight-bearing X-ray) and says, yep, the knee is dislocating with every step. Turns out the "arthritis" was a total wearing away of all the cartilage in the knee, probably from past dislocations and sprains, and with the lax ligaments and tendons from the Ehlers-Danlos, the bones were just sliding all over the place. They had actually begun to shed bone chips on the corners where they were grinding together when I walked.
The solution? A total knee replacement. (Coming up the end of the month.) Oddly enough, my "FM pain" is greatly reduced now that I'm on crutches and not using the knee… Just to point out once again that we patients need to stop and evaluate an increase in our symptoms, and see if something other than the DD may be causing it. - J
• For the last six months my sleepiness, tiredness and PEM [post-exertion malaise] became much worse and continued to get to the point that I was sleeping 18 hours on some days and the pain was getting worse. This of course can happen with our DD. I had a sleep study and it turns out I have Obstructive Sleep Apnea. I stopped breathing 51 times per hour during REM sleep. No wonder I was tired.
I have to say my PCP is wonderful. She has over 500 patients with FM and I now have her manage my FM. As you know, sleep is crucial with our DDs. She is the one who ordered the sleep study and I really had no idea I had this.
I am now on a CPAP and it is not that bothersome, as they have improved immensely. So if people snore and you have a bed partner or anyone else who hears you stop breathing while snoring, or snort, it is best to have it checked out. I did not realize that it is a myth that you have to be overweight. Though losing weight can help and is a risk factor, many people have, like me, a small mouth (LOL!) and air passage. As we get older these muscles lose elasticity, which can turn into the OSA. Hopefully this will give me more energy to get back to my former weight. But it is not a cure for FM, nor necessarily the OSA.
Confusing the symptoms of FM/CFS/ME with other conditions is the nature of this beast. – G
Vitamin D & Successful Pregnancy/Delivery
Re: "Optimal Vitamin D Dose for Pregnant Woman 4,000 IU a Day"
Exposure to vitamin D results in increased expression of IDO(Indoleamine-pyrrole 2,3-dioxygenase) which protects against miscarriage. - S
Gynecologist Is the Best Doctor in My Book
Went to [a gynecologist for] my annual female exam today. I have the most wonderful gyno in the world! I didn't even ask him about any blood work, and he drew blood to check my thyroid levels, as well as hormone levels! Never in my life has a doctor done that for me at an annual exam, until I started seeing this one last year. So, instead of going to my primary doctor to ask for a thyroid check, I got it done without asking! So great… A friend of mine says her gyno is the only doctor she sees for everything. Wonder if mine will do that. – L
Take Responsibility for Following Up on Your Lab Results
My primary doctor's nurse called me yesterday and says they got my labs back and my iron is low again. Mind you, I suspected my iron was low and requested this blood work a month ago! I always pick up a copy of my results at the hospital when I have it done. I never wait for the doctor. So I knew it was low, but didn't bother calling my doctor when I saw the results. I simply started taking my iron tablets again.
I just laughed. It's all I could do. Anyway, glad I didn't have some life threatening thing going on! – L
[Note: With medical tests, don’t assume no news is good news. Ask when to expect test results and call if you don’t hear by then. National research done last year found that when test results are abnormal and require follow-up, an average of 1 in 14 abnormal test results are never communicated to patients. This is an average that includes the best-performing medical practices, but in many practices, it’s as much as 1 in 4!]
What Helps My Constipation
Someone in an FM support group mentioned this product [Peter Gilham’s Natural CALM Magnesium] probably 10 yrs ago and I just never bought it. I've dealt with sluggish bowels all my life - aka constipation issues - and so finally bought this product and oh my goodness. What a gem of a product it is. I know that many, many deal with constipation… so why not check it out. I wouldn't be without it now. Magnesium deficiency is huge and I've been taking mag for many years, but this product is excellent. – J
Note: This information has not been evaluated by the FDA. It is general and anecdotal, reflecting personal opinion, and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
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