Study: Caution On Use of Peer Support in Chronic Disease

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MBombardier
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Study: Caution On Use of Peer Support in Chronic Disease

Post by MBombardier »

http://www.sciencedaily.com/releases/20 ... 122131.htm
Prof Britten concluded: "These schemes are billed as peer-to-peer, but there is an intrinsic imbalance in the fact that one person is receiving the service, and the other is delivering, and may have varying degrees of training to prepare them for that role. That can reproduce some of the hierarchical relationship between a patient and a healthcare professional, and any tension arising form that needs to be managed carefully. This type of support is extremely valuable, and clearly has an important role to play in healthcare. But in order for it to be a positive experience for all involved, it is crucial that the impact on both the "mentor" and the recipient is considered, and that health care providers avoid a 'one size fits all' approach."
How about we leave health care providers out of it, and let it just grow naturally, like this forum?
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Post by gluten »

Hi, I get many calls and e-mails from people with a muscle or celiac disease looking for meetings were they can meet other people with the disease. I had one person who was very upset because he felt like he was the only one with the muscle disease. I was the first one he talked with who had the same muscle disease after a year of when he was diagnosed. I gave him a list of support groups in his area. Jon
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Post by Zizzle »

Jon,
Which muscle disease are you referring to? Have you been dx'd with one?
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Post by gluten »

Hi Zizzle, Twenty five years ago, I was diagnosed with fascioscapulohumeral dystrophy [FSHD] However, ten years later when there was a DNA test available I tested negative. I went before a meeting of the top neurologists in Boston so they could examine me for the clinical symptoms. I am a perfect match but DNA negative. As part of a study in Boston my DNA was send to several sites around the world for study. The reaserachers have determined that I have FSHD II. Both types have oxidative stress and mitochondrial dysfunction which is correlated with muscle impairment. Also have DNA chromatin dysfunction related to zinc and hypomethylation of the DNA. My type was not found on chromsome 4 but on 10. Now, after joining this site I realize that alot off the muscle damage has been caused by the body catabolizing muscle protein for the energy to fight the inflammation cause by the MC. When, I was dx with the MC ten years after the FSHDII they found it at three levels of the colon. But, how far did the MC get beyond the check valve between the colon and the upper part of the intestinal tract. I had an endo at the same time and it was negative for celiac. However, they did not have the capacity to determine any damage and I am sure the MC has caused malasborption issues. There is hope for the FSHD as a study from France with fifty seven patients had a 11% improvment in muscle mass. They used four supplements vitamin C and E, selenium and zinc glunconate. The study has been completed and the results of the study will be released before Sept. It will be the first treatment for any MD based on diet rich in antioxidants. This study found the connection with oxidative stress and mitochondrial dysfunction. When, you posted about zinc that sent me to off to the internet to look at the connection of zinc and MC. I bought the zinc supplement but have taken it yet because of my hair test results that shows an imbalance between copper and zinc. It shows up in my Zn/Cu ratio. A imbalance in either trace element can cause health problems. If you take a zinc supplement it depletes copper and iron. To correct the imbalance I am taking a CU supplement. I have been eating the foods rich in antioxidants recommended from France for several months and noticed it has made a difference. The foods also stay with the Paleo diet recommendations. I now can an exercise on my stationery bike for hour and a half at the max. tension. Recovery is much faster and now I am trying to increase the number of revolutions. Jon
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