From Our Readers - Comments & Suggestions 02-17-10
February 17, 2010
‘Shootout’ over Contradictory XMRV Research Continues
Re: The controversy over the UK-based research study claiming to find no XMRV in patient samples… which may yet escalate, with a second contradictory UK study, by Kerr, et al., published Feb 15. (Representative comments.)
• Simon Wessely and company often use a different set of criteria to select the patients for their "CFS" studies (such as the Oxford Criteria). These selection criteria are set up so as to include lots of people that are just depressed, and do not have CFS at all. As a consequence, it is not surprising many studies, based on the Oxford Criteria or similar, find that patients do not have XMRV, or can be cured by antidepressants: they studied the wrong people. In other words, when Simon Wessely says "CFS", he actually is talking about "depression". … The original XMRV research at the Whittemore Peterson Institute used the Canadian Consensus definition of CFS/ME. The advantage of these inclusion criteria is that they actually do select CFS patients. - H
• …The UK team’s results speak for themselves. No DNA found during PCR testing, yet people are doubting their testing methods! If it was there, they would have found it. People with CFS/ME are delusional in their belief that it's a viral problem. Only those whose illness is clearly brought on by viral infection can consider this to be the cause. It's a bit like the Emperor’s New Clothes this whole XMRV thing. Why are people with ME/CFS so defensive about accepting that the illness is neurological? People seem so frightened by the thought that they may have a biochemical imbalance in their CNS or their brain. It's a disease of the CNS or the brain, accept it, and stop pushing the viral envelope so we can get some real research done…. - R
• Why are people SO vehemently opposed to evidence that CFS is more than psychological? Who ARE these people and why do they feel so strongly? Why do they even care if they're not sick? Just wondering why people like us who have an illness are being subjected to out-right attempts at oppression. Why favor the UK findings, a poorly-designed study that as I understand it was shipped off for publication quickly without review, to a study that was confirmed by such influential organizations as the National Cancer Institute and the Cleveland Clinic? What exactly is going on here? - G
• Lest you think I am just another defensive patient, I have done plenty of PCRs and know how it works. .. Based on my own knowledge I am not at all convinced by the UK study. - S
• If you look at the sensory, adrenergic and immune mRNA responses to intense exercise as in the study by Alan Light, this strongly suggests something interfering at the genetic level. In a large multidimensional study organised by the CDC and published in the Journal Of Pharmacogenetics "suggest strongly that many causes of CFS have links to a handful of brain and immune system - related genes that either harbor small mutations or are working abnormally for some reason" This is classic retroviral interference rather than a group of people wired to handle stress abnormally. I am quite certain that a virus/s is the root cause of many cases of what is diagnosed as CFS and the WPI study is a THOROUGH and welcome start in this field. Hopefully to be replicated, positively or negatively but with the appropriate methodology. This illness is far too serious for the world to be treated lightly or politically as many of us believe the British study was. - I
• I have no doubts that this is a virus, producing these symptoms. My great uncle, who looked a lot like me, had this condition starting in his mid thirties and was misunderstood from that point on, until I was diagnosed. Imagine, no one thinking you're really sick, until you are a very old man… just being called lazy. His grandaughter, got it, as well… This very real physical disease without a cure has psychological barriers to every aspect of life… No matter what the cause of our illness, I hope we can all carve out a life for ourselves while we are waiting. I am very grateful for Dr Mikovits work. I think they are on the right track. It gives me hope; but life goes on. - C
• The second article seems more worrisome and distressing to me because of Dr. Kerr's involvement. WPI needs to find out what's happening and partake in testing the blood in tandem with these studies to ascertain if it's methodological/procedural - before we lose steam and hope. - E
Why It’s Important for ME/CFS Patients to Support their Cardiovascular Health
Re: The Belgian research paper, “Why ME/CFS may kill you: Disorders in the inflammatory and oxidative and nitrosative stress pathways may explain cardiovascular disorders in ME/CFS.”
• I find this article depressing and scary. To someone so ill like myself reading this makes me feel more hopeless. While articles such as these may be informative they should never be written without some hopeful, positive information included as well. – J
• As depressing as this information is, I also see that it contains concrete information about what we need to consider to stay ahead of the illness. For example, checking the heart, checking our medicines and supplements, etc...
• If you eat right and try to stay physically fit, your chances for a longer life are just as great as those without ME/CFS. But, then, again... do I really want to live till my 90s in pain? Cheer up, brothers and sisters! One thing we all can do for sure is to be positive and keep fighting! – W
• This information is wonderful to have as both a validation to the complex disorder, and in preventative medicine. I went into cardiovascular collapse at age 43 after a couple years of fatigue and pain and decline in general health… I did not start to get well until I went to a chronic fatigue specialist who diagnosed 5 chronic infections… I plan to show my cardiologist your article, who never believed in CFS in the first place. - H
• There may be doctors who don't like people like me, the so-called "medical Googlers" as patients, but with a subject so little understood as CFS, we really do have to look out for our health and well-being! For us, it's a matter of life and death. – H
Nonstick & Stain Resistant Coatings and Thyroid Disease
Re: “Chemical used in non-stick, stain & water-repellant products linked to thyroid disease.”
"A study by the University of Exeter and the Peninsula Medical School for the first time links thyroid disease with human exposure to perfluorooctanoic acid (PFOA). PFOA is a persistent organic chemical used in industrial and consumer goods including nonstick cookware and stain- and water-resistant coatings for carpets and fabrics." Florine is a halide like iodine. So [supplemental iodine] may be a good antidote. Old fashioned cast iron pans or vitreous (glass) enamel might be our best substitute for cookware. – A
Dr. Oz – Will the contagious virus causing exhaustion be XMRV?
Q: The Dr. Oz show www.DrOz.com (Wednesday, Feb 17/10) should be interesting. They are doing a segment about exhaustion and an incurable virus that is contagious and could lead to cancer. I wonder if it is XMRV they are discussing? - T
A: Our Oz detectives say the segment focuses on Epstein-Barr virus (EBV).
Little Micky’s Photo for “Weekly Inspiration”
Thank you for putting the joy of my life (besides my husband) on your (Feb 10
Wellness HealthWatch) newsletter. Hope he brings a bit of sunshine into your readers’ lives, and a smile. - K
Note: We couldn’t resist! We welcome photo submissions for the Weekly Inspiration box.
Chair Massager Helped My Restless Legs
Last night I was having a real problem getting to sleep. I just couldn't shut my brain down and also my legs and right arm were really jumpy. I got out of bed and was just wandering around when I noticed something sitting next to my couch. It is a chair massager thingee. My neighbor gave it to me when she didn't want it any more. It has many settings so that you can sit in it and massage from your legs to your neck, or you can just massage one area at a time. It also has heat in it.
WOWEE! I sat on it for about 20 minutes and massaged my legs and lower back, along with the heat. When I was finished I felt like a new woman. I went to bed and I think I was asleep in minutes… Just thought I'd pass this on. BTW, it's made by "Homedics."
Note: They market a number of massaging devices, but we saw only one that includes heat.
Social Security Adds 38 New Compassionate Allowance Conditions
They issued a news release last Thursday. Includes early-onset alzheimer’s and mixed dementia, and adds to the list of rare diseases that may qualify for disability benefits (www.ssa.gov/pressoffice/pr/cal021110-pr.html - M
Whittemore Peterson Facebook Page?
Q: I know that WPI has been said to have a Facebook page. Does anyone know what it is?
A: You’ll find it at http://www.facebook.com/pages/Whittemore-Peterson-Institute/154801179671
SIDS, Serotonin, and CFS/Sleep
Just a week or so ago there was an article on a study that looked at measuring the amount of serotonin in babies who had died of Sudden Infant Death Syndrome. (I assume vs. other causes.) It was determined that there was a 25% serotonin level reduction in SIDS babies - essentially, their central nervous system did not respond normally when the body was higher in carbon dioxide, and the brain did not tell the body to breathe as efficiently as it should. The article made the point that serotonin plays a part in this regulation process. Hopefully, this is a step in determining babies at higher risk for SIDS in the future.
But the real reason I posted this is, essentially isn't this saying that some babies (children? adults?) are at a greater risk for central-type (central nervous system-caused) apnea than others? Possibly due to a serotonin deficiency? And I know others here that have mentioned that it feels like their bodies stop 'remembering' to breathe on some occasions. I know that I have experienced this several times. And what should normally be an involuntary action (breathing), slides over to the 'voluntary' side for a bit. My husband has told me for years that he has observed me sleeping when I just stop breathing. It's not a matter of choking, or being obstructed, I just don't inhale.
Two sleep studies showed that my blood oxygen/carbon dioxide levels didn't fall below the acceptable levels (fortunately), although they did show significant lack of stage 3/4 sleep. Unfortunately, when I read about central apnea, mostly what is written is that it is 'poorly understood' and 'difficult to cure'. I am on an antidepressant for other reasons, but am pleased that the extra boost in serotonin might be helping in this area. - J
Help Me Find a New FM & CFS Physician
Q: I am having trouble finding a new fibro and CFS physician. I have found one doctor close to me on one web site but he was my last specialist, and I left him because he prescribed meds that were contraindicated for my health problems. I need someone who is relatively close to where I live, as I am slowly going blind and I need to get a ride to the doctor. - L
A: The first place to go is the Co-Cure Good Doctors List. You can also ask in ProHealth's ME/CFS & FM Message Board. (You'll have to indicate the town or area where you live.) Also, be sure to search on your town or state within the message string near the top of the first page, titled "Please Post Your Good Doctor Here." It is 43 pages long.
Mood Swings & Blood Sugar
I went to a psychiatrist years ago, thinking I was bipolar. I was having such bad mood swings, going from hyper to sluggish, depressed, over and over again. He made me write down my blood sugars [I’m a diabetic], mood, etc., for over 3 months and bring it back to him. At the time I never even thought about the blood sugars causing such major swings in my mood. Well he took my diary, read it, and showed me why my moods were so out of whack… - H
ME/CFS – What’s in a Name
Q: Your information is incorrect and misleading. Your site will gain credibility and support groups will add you to their sites with links if you abandon the term ME/CFS. Educate yourselves, update your information and gain credibility amongst the community of M.E sufferers worldwide. I am removing the link to your site from our support groups site [Hummingbird Foundation for ME website © 2004 - 2010 by Jodi Bassett] until you provide more accurate information. M.E has been named... it is no mystery illness... a person who suffers with chronic fatigue does not have M.E another underlying condition. - M
A: For now, many use ME/CFS or CFS/ME to represent a transitional move away from the name “Chronic Fatigue Syndrome” with its hurtful history, while reflecting the reality that millions of patients in the US and other areas still have to cite the name “CFS” for legal and medical reasons involving disability, insurance, and the need to obtain a diagnosis that will be recognized in these respects. With the current surge of research, we hope for incontrovertible evidence/tests capable of supporting a set (or sets) of diagnostic criteria that can serve for legal purposes everywhere.
Note: This information has not been evaluated by the FDA. It is general and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition 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.
ProHealth offers a wide range of nutritional supplements for optimal health.*
*These products are not intended to diagnose, treat, cure, or prevent any disease.
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