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From Our Readers: Comments and Suggestions - 1/29/2014

  [ 5 votes ]   [ Discuss This Article ] • January 28, 2014

From Our Readers: Comments and Suggestions - 1/29/2014. Image by pixbox77
Image by pixbox77
More People Need to Speak Out
More people need to speak out and demand government action about this horrible disease that has been all but neglected by the mainstream medical community and the FDA. For example, GHB, the greatest sleep inducer ever discovered and all natural, was refused acceptance by the FDA as a treatment for ME. This despite the fact that sleep disorder is a central part of this disease. We need this community to unite politically and raise money to research and create support for this illness. ~ Posted by: Webmind, Jan 7, 2014
Thanx for posting this, made interesting reading, not surprising really, but i do feel that we are all increasing in numbers and at some point the government's will have no choice but to listen XXX ~Posted by: MamaChill, Dec 10, 2013

The medical profession must take responsibility
The medical profession must take responsibility and create effective diagnosis. It is not good enough to sit back and say we have no biomarkers therefore no proof that the disease exists. At worst many claim it is a psychological condition either a depression variant or a falsification. These are just opinions with no medical fact.
Whereas there is plenty of evidence that the disease is an immune dysfunction. To diagnose it, simple markers would help but we do not need simple markers in order to make a diagnosis. If money was no object, almost every case of ME/CFS could be diagnosed biochemically right now. The lag time for diagnosis even when it is made is still very long and in the meantime families suffer. We know that mothers with ME/CFS are more likely to have children with ASD. We know that children with ME/CFS under perform at school and many suffer from a wide range of symptoms often not attributed to ME/CFS, ranging from gut disturbances to selective mutism. The value of a single diagnosis is that it alerts the clinician and parents to these sorts of problems, making identification and treatment more likely. Amazing that we can diagnose "pervasive refusal syndrome" but we cannot diagnose ME/CFS. What a world! Psychiatrists diagnosing conditions with absolutely no physiological parameters. ~Posted by: IanH, Jan 15, 2014

B12 Helps Me
I've suffered with chronic fatigue for years. The only thing that truly helps me is B-12 shots. I started off getting them once a month but by the fourth week, I still found myself spending weekends in bed, too exhausted and foggy to function. My doctor said I can go every three weeks or even every week if I need to. I go every three weeks now and my energy has improved greatly. I still have to moderate my physical activity and limit how much I do in one day, but I feel SO MUCH better with my B-12 shots. I recommend them to anyone managing Epstein Barr/ Chronic Fatigue. ~ Posted by: rock311, Dec 31, 2013

GcMAF eradicates 85% of CFS symptoms
In 70% of cases, GcMAF eradicates 85% of CFS symptoms. We have several hundred CFS cases on GcMAF with excellent outcomes, but we have a small, scientifically run trial where the results are measured accurately, and the above 70%/85% result is being achieved consistently. People who have spent most of the last five years in bed have gone back to work ~ Posted by: dnoakes, Dec 30, 2013

A Great Study
This is pathfinding stuff. However we don't know if the epitope cross-reactivity is due to ME or is causing a cascade which in turn causes the mitochondrial and ion-channel changes resulting in ME. I suspect the latter. There is some indication of such epitope cross reactivity in allergic response cells in the lungs of people with MCS, in turn causing hypersensitivity to airborne allergens and toxins. In time this also causes hypersensitivity to smells - ie hypernausea. This is also consistent with the changes in Il-1b, 2, 4, 6 and 13 in MCS. ~ Posted by: IanH, Dec 5, 2013

Harping on the Gut
For years, I've been harping about the gut as the center of degenerative disease and especially CFS. The reduction of growth hormone is a major factor, I'm sure, probably has to do with cholesterol and "gut microbes"! I believe gut microbes play a major role in CFS and most all degenerative diseases. Therefore, the transfer of gut microbes from healthy subjects, to us sickies, can be most helpful. I take many of the supplements mentioned, especially the Omega 3 fish oil to prevent stroke (4 caps a day).
Surprisingly, I didn't see a mention of DIGESTIVE ENZYMES, with, and most importantly, IN BETWEEN MEALS, as they seem to dissolve pathogens, as well as food. Many are getting excellent results with Autistic kids, using digestive enzymes. A big plus, it seems, is the reduction of "die off" or Herx, using enzymes. Karen DeFelice wrote the book. Hey, Paula, great article. RP ~ Posted by: OldSalt, Dec 5, 2013

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