From Our Readers: Comments and Suggestions – 4/22/14

Important nutrients for CFS and so much more

Re: Review of Nutritional Supplements Used for ME/CFS and FM

This nutritional supplement highlight definitely showcases some powerful and beneficial antioxidants. Often times people will talk about the benefits of L-Carnitine, but Acetyl-L-Carnitine is even more beneficial, especially to do with brain health. Also NAC is a widely recognized powerhouse supplement these days, mostly for its ability to improve GSH synthesis. The one thing I would add here is Acetyl Glutathione, the best way to directly enhance GSH levels. It overcomes to the problem with Glutathione breaking down in the digestive tract, offering maximum benefits. Pair it with NAC and you can significantly boost GSH levels and therefore brain heath and cognitive function, as well as total body health and immune function. Great article! ~ Posted by: GlutathionePRO, Apr 1, 2014

Academic really

Re: Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis

I do think this is academic to define ME and CFS separately. I do agree with the approach that Prof. Jason takes that a clearer symptom definition is required for decent research but the illness does not break down into CFS or ME. Take depression as an example. There is a range of three factors influencing disease severity. These include low to high genetic involvement. Low to high metabolic-inflammatory involvement and low to high psychological involvement. If you are low on all three then your illness will be mild, you could be high on genetic but low on the other two, etc Or you could by high on all three and have very severe disease. I suspect it is the same with ME/CFS:

  • High to low genetic involvement;
  • High to low metabolic-inflammatory involvement (including viral/bacterial infections, gut dysfunction, etc)
  • High to low psychological factors (including social and work factors)

The greatest difference appears to be between the metabolic-inflammatory and psychological dimensions. Some people will be at the psychological end of the continuum but they will not be devoid of the genetic and metabolic-inflammatory factors. However for the purposes of research it is important to take people into different studies from each end of the continuum or at least to exclude those with high psychological factors in order to more clearly identify the biomarkers. ~ Posted by: IanH, Feb 27, 2014

Thumbs Up!

Re: Exercise and M.E. Event: Research Findings

Thumbs up for Dr Mark VanNess and his team at the University of the Pacific, California. He is quantifying what we feel when we try to exercise and simply cannot without harming our health. I like his terminology of “post-exertional amplification of symptoms” as sometimes there is malaise and other times it is not so much malaise as other symptoms such as swollen and inflamed lymph nodes that result. I appreciate the link that was included to his article on analeptic activity. It gave a useful means to increase activity and yet avoid post-exertional problems. Last but not least, I found it comical that other exercise physiologists protested the calibration of the exercise machines when a 25% drop in metabolic function was seen in people with ME on day two. It reminds me of doctors being confronted with symptoms they do not understand in patients and telling the patient it is all in their imagination. After all, that is the human to mechanical equivalent of “not being calibrated right”. ~ Posted by: me/cfs, Feb 27, 2014

Antivirals safer than antidepressants

Re: Psychological side-effects of anti-depressants worse than thought

“With ME/CFS it is safer, less disruptive and cheaper to treat ME/CFS with acyclovir than to use antidepressants. What’s more, the chance of a cure is significant” “Sometimes I might be wrong because the diagnosis is wrong but I can live with that” ~Posted by: IanH, Mar 12, 2014

Synergy Trial 

Re: K-PAX Pharmaceuticals and Stanford University to Collaborate on Clinical Trial to Study New Treatment for Chronic Fatigue Syndrome

This appears to be a promising avenue to the first FDA approval for ME/CFS treatment. They had promising preliminary results, it is a large multi-site study being carried out by leading ME/CFS researchers and it is an attempt to address concerns with immune, endocrine, and mitochondrial function. My question to K-PAX would be, have they tried their micronutrients with other pharmaceuticals (besides methylphenidate)? One that I would be curious about would be an antihistamine known as hydroxyzine. Best hopes for all involved. ~ Posted by: me/cfs, Mar 6, 2014

Half empty or half full?

Re: FDA Says Sponsors of Chronic Fatigue Syndrome Drugs can Rely on Patient-Reported Outcomes

Which will most patients feel when reading this important change from the FDA, half empty or half full? While it is good that the FDA will recognize patient reported outcomes (PRO) in future clinical trials, it is water under the bridge for Ampligen and its approval. On December 20, 2012, patient after patient made an extraordinary effort to express such reports to the FDA concerning Ampligen, only to have the FDA once again turn a deaf ear on February 4, 2013 when it rejected Ampligen for a second time. It begs the question; Why did the cart come before the horse? Why didn’t the FDA work with all interested parties to change the policy on PRO and then consider Ampligen’s merits? The FDA owes it to all involved to open the case on Ampligen once again and base statistical analysis of past clinical trials in the light of this newly announced policy. ~ Posted by: me/cfs, Mar 18, 2014

Lipkin Effort

Re: An Interview With Ian Lipkin – An Ambitious Project to Study the ME/CFS Microbiome

When will CFS researchers ever figure out that they will never have enough funding to figure this disease out on their own. There have been hundreds of millions of dollars spent on the American Gut project sequencing the gut biome. Why doesn’t he simply call Rob Knight, the director of the project and piggy back on what’s been done already instead of reinvest the wheel all the time….very very frustrating. These people need to crawl out of academia and figure out how the real world works and try reaching out to other people who know more than they do about a given subject. ~ Posted by: reino, Mar 26, 2014

ME/CFS – Misdiagnosed for 15 years

Re: The Strange Case of NIH and an Elusive Disease

I was diagnosed with Chronic Fatigue Syndrome by an Infectious Disease physician in 1993, also neurally mediated hypotension in 1994 at Johns Hopkins. After losing my twenty seven year teaching career I finally got the correct diagnoses of Lyme, Babesia and Bartonella. The ELISA and Western Blot tests that my regular physician performed came up negative with the tests through IgeneX and Fry Labs coming up with these diagnoses one month later. It is obvious that it was Lyme along with the co-infections from 1993. The worst thing is these diagnoses were not discovered until 2008 as I was misdiagnosed for fifteen years. I saw multiple physicians over that fifteen years from Cardiologists, Neurologists, Pulmonologists, etc. and all missed the correct diagnoses. ~ Posted by: nmoore, Mar 26, 2014

HSV-1 latent infection – More Evidence

Re: The Devil Is In The Details – A Herpes Simplex Virus Inquiry For Fibromyalgia and Chronic Fatigue Syndrome

There is evidence that the HSV-1 latent infection of the sensory ganglia actually alter the sensory neural gene expression particularly the Clk2 gene, and neurotransmission genes encoding potassium voltage-gated channels and one of the muscarinic acetylcholine receptors and possibly some of the neuropeptide genes. ~ Posted by: IanH, Mar 30, 2014

A good reason for those with CFS/ME to take CoQ10

Re: CoQ10 Proven Benefits in Heart Failure Patients

There are physicians and researchers who believe CFS/ME, whatever the precipitating event, is caused by mitochondrial failure. Therefore, an important supplement in restoring mitochondrial (the cell’s energy factory) function is CoQ10, in doses similar to those stated for heart patients. For older individuals, research seems to indicate that CoQ10 is less bioavailable than ubiquinol.

I have to thank Dr. Sarah Myhill for an article here a few years back where she advocated that CFS/ME was a result of mitochondrial failure, suggesting a protocol of CoQ10, magnesium, d-ribose, niacinamide and acetyl l-carnitine, along with a paleo diet and a good multivitamin/mineral supplement. This was apparently adapted from one used by cardiologist Stephen Sinatra for patients not recovering energy levels after heart surgery. I have improved considerably since following this. ~Posted by: Photo1776Bill, Apr 16, 2014

1 Star2 Stars3 Stars4 Stars5 Stars (4 votes, average: 4.50 out of 5)

Leave a Reply