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From Our Readers: Comments and Suggestions – 2/10/16

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Cognitive impairment 

Re: Close to Collapse: Survey Finds "Shocking" Lack of Services for ME/CFS Patients

I started crying when I read this. It's describing ME as in "Maschelle"! They keep chalking my confusion, problems speaking and losing words and trouble writing (I will write a numeral, or the wrong letter even when I'm just signing my own name) to anxiety and depression. I get so mentally fatigued trying to fill out firms In driven to tears of exhaustion. I can't think! I was so smart and gifted with writing skills, but they didn't know me then. I can't access social services out there because I cannot do the required paperwork and attend their meetings.. So I receive no help with discounts for the disabled and the 25% off of my power bill. I am so nasty dirty compared to my everyday self care I maintained until 2 years ago. I never wear makeup. It's exhausting to hold my hand up to my face! And washing my hair? Oh my gosh! I eat microwaved food daily. I can't cook. I have areas of paralysis, one of which makes me fully incontinent. I have chronic yeast infections on my skin from sweating nonstop. I am not even a shadow of my old self. I am so afraid of what is going to happen to me. I am unseen. I am not taken seriously. The medical community will "kill me with care" if I was to start trying to advocate for my own treatment again. I avoid them. I have days of lack of ability to concentrate without losing consciousness. If I keep trying to complete a mental task when I come back around I am out before I know it and find myself coming to again, with no memory of going "out". If I put aside what I was trying to concentrate on the phenomena spots. I am able to stay cognizant. I feel like I'm living in the dark ages of lobotomies. I'm afraid. Somebody hello us be believed! Please! We're here! We NEED to be able to stay gimme and be cared for and treated here. A real treatment! Even correcting nutritional needs with supplements we can drink.. Because I can't chew long enough to eat many things that I need to eat! Oh God, I pray for a medical awakening! This treatment is barbaric. ~Posted by: MaschelleMEcfs, Dec 9, 2015

Genetic testing 

Re: Major ME/CFS Genetic Study Launched: Participants Needed

I did genetic testing thru 23andme 2yrs ago: saved my life. Work with Diana Galloway,RN re supplements from Dr. Amy Yasko, PhD, ND. Many bad genes, methylation issues. I'm glad this area is FIANLLY being considered. Supplements are expensive tho. ~Posted by: wick66, Dec 9, 2015

Anyone investigating PACE Trial Authors Finances?
Re: PACE Trial Authors Feeling the Heat Over Chronic Fatigue Syndrome Trial

I would love to see an investigation of if and how the authors made money or furthered their careers through these studies. Perhaps people in the NHS and officials dealing with disability issues had some reward from naming these treatments as the standard for ME/CFS care? Why did they ignore all of the biomedical studies coming from places throughout the world that pre-dated this research that pointed in a different direction? Wasn't it their job to research the whole field as the IOM in the US did recently before deciding this was the one and only way to go? What got in the way of this? ~ Posted by: siebertesther, Dec 23, 2015


Re: NIH Budget Increase Could Be Turning Point For Chronic Fatigue Syndrome

Trillions have been spent on medical research- yet chronic conditions like arthritis, back pain, diabetes are on the rise. Money isnt the sole solution. Several problems regarding research remain such as honesty and integrity-but moreover research models are archaic and focused on knowledge and not results. Results oriented research is needed. Collins- a lover of the genome has not delivered on genetic medicine-and NIh is focused too much on their colleagues in research and not on the public good. Just like the decade of the brain in the 90's and the decade of pain- we might have nothing to show for the $2 billion increase at NIH. ~ Posted by: r1r1r1, Dec 23, 2015

Jokes are not funny 

Re:  Ian Lipkin: Three to Five Years* to Solve Chronic Fatigue Syndrome (ME/CFS)

to a patient sick for 20 years and counting. But my real concern is that Lipkin has never addressed the real issue of a retrovirus. Mikovits found about 85% of patient samples and about 6% of controls were infected with a retrovirus. Alter and Lo found THE SAME AMOUNTS. PLEASE ASK LIPKIN HOW THIS CAN BE LAB CONTAMINATION? Why didn't anyone in the audience stand up and start yelling about this? I am not stupid or crazy.  ~ Posted by: GoWest, Dec 29, 2015

Any conection to Histoplasmosis been looked at? ~ Posted by: sixtytwo=62, Jan 19, 2016

Exercise and CFS 

Re: How Walking to Bathroom Can Be Harder Than Running a Marathon: A Doctor’s ME/CFS Case Study

Dr Martin Lerner has done extensive research on CFS and exercise malaise. He had me on modified bed rest for much of a year when diagnosed with CFS (1992). 24 hr Holter monitoring showed irregular heart rhythms when I was first diagnosed. A year later when I was feeling better, my rhythms had all returned t normal. He warned me at the time that stressing my system while having CFS could lead to permanent heart damage. A friend of mine who ran daily had already done heart damage by the time she was diagnosed. Far too many doctors have seemed to overlook this issue when it comes to CFS! ~ Posted by: lilymarie, Jan 12, 2016

This is me. I don't believe my doctors really understand how severe this can effect a person. 
I leave my home once a month for my doctor's appointment and then I need the rest of the month
to recover. I literally live in my bed. ~ Posted by: Lcpiet, Jan 12, 2016

Masked anemia

Re: Blood Volume in ME/CFS

The illustration above indicates how a drop in Red Cell Mass (characteristic of what main stream medicine would define as an anaemia) fails to register an abnormality oi a given patient's Full Blood Count. 

Low Iron stores PLUS an inadequate ADH response to depleted total blood volume may both be at play here.~ Posted by: DrJohnLWhiting, Jan 14, 2016

I've been diagnosed with fibromyalgia but I have always complained more about fatigue than pain. Much in this article sounds very familiar to me. I cannot donate blood or I become sick for days. Iv fluids make me feel great. I can't stand for long periods of time, I have had unexplained fainting spells since I was a child. I've wondered if I have POTS or neurally mediated hypotension but could never get a doctor to test for it. This blood volume info is very interesting. 

Recently I read an article that although they didn't know what it meant researchers had found a problem with nerve fibers on the blood vessels of fibromyalgia patients. I did a search and couldn't find it but it sounds like a connection to this article. The best I could come up with was this article. ~ Posted by: jewellzz, Jan 12, 2016

This fits me so perfectly, including the part about difficulty traveling to higher elevations. Like you said, if I get a saline drip I feel normal for a short while, and having my blood drawn for tests is quite traumatic cause it just stops flowing…like there isn't anymore! I have never been able to get any doctor to take me seriously, but I have related all these things over and over whenever I try a new doctor for my CFS (way too many times). I appreciate your tenacity in republishing this info and sure wish, as you said, there were more people interested in researching this.  ~ Posted by: sonbyrd, Jan 13, 2016

How lovely to see an article by you Dr Bell, I've often thought of your story of the woman turned away by an .ER doctor that I believe was your patient. You described asking the same doctor what he would do with a patient who had the blood volume levels that she had and he responded that he would be surprised that someone could survive on them.

I've long term FM with a big fatigue component. I collapsed with chest pain and very low HR in the ER, it was in the 20's and I was unconscious for a while. They kept me in cardiac care for two day and I've done Holter (sp?) moniter since then. tomorrow I go back for results and to maybe hear if I need a pacemaker. 

Is there a link with low BP (very common in FM I believe) and low blood volume and Brachycardia? The specialist had mentioned the possibility of a pacemaker. Very good wishes to you, Helen  ~Posted by: sesame12, Jan 13, 2016

The illustration above indicates how a drop in Red Cell Mass (characteristic of what main stream medicine would define as an anaemia) fails to register an abnormality oi a given patient's Full Blood Count. 

Low Iron stores PLUS an inadequate ADH response to depleted total blood volume may both be at play here.~ Posted by: DrJohnLWhiting, Jan 14, 2016

It does work 

Re: An Interview with Dr. Jon D. Kaiser – Supporting Mitochondrial Function in ME/CFS Patients

I have suffered from ME/CFS for over 15 years. About 5 years ago I read a ProHealth article by Dr. Sarah Myhill (U.K.) where she described the disorder as one of mitochondrial failure and outlined her success in treating patients using a nutrition protocol designed to kick-start the mitochondria. Besides a healthy (preferably organic) diet (mostly plant-based, healthy fats and some meat/fish protein) and a good multivitamin/mineral supplement, the supplements (she explains specifically how each works on her website) for mitochondria are: acetyl-l carnitine, CoQ-10 (or ubiquinol), magnesium (any chelate but oxide, which is poorly absorbed), d-ribose (a simple sugar) and niacinamide. Over time, after researching, I added NAC (to help produce glutathione — the "master" anti-oxidant that tests on CFS patients have shown to be depleted) as well as anti-oxidants alpha-lipoic acid, ascorbic acid (vit. C), vitamins D3, E and lots of varied raw vegetables (a big salad) to take out the garbage (free radicals). I installed a countertop fluoride/chlorine/etc. filter for drinking and cooking water, removed household chemicals as well as problematic personal care products (baking soda works as well as chlorox and baking soda/coconut oil works very well as a deodorant). I suspect that, due to diminished mitochondrial function and inability to sweat, CFS patients are prone to building up toxins; I also take chlorella to help remove them. I have a few mercury fillings which I hope to remove soon via safe removal which also should help lower my toxic burden.

This was prior to the K-PAX formula (which seems similar) and without the mild stimulant. I took this every day for several years, and after seeing significant improvement, backed off to several times/week (mainly for cost considerations). I have gone from bedridden/sleep-deprived to having much more energy. I still have to pace myself somewhat, but I am now able to take long walks and my energy level is much better. Patience is required — a disorder as serious as this takes time to recover from, and the reality may be that I'll never be 100% (the sooner treatment is started the better), but the improvement has been dramatic. Hope this helps! ~ Posted by: Photo1776Bill, Jan 12, 2016

Thank you for your work, doctor, and your article. I had CFS for 14 years and the mainstream medical establishment was of no help. I recall my muscles giving out when climbing stairs. I did my own research and based on my symptoms, thought something was going on with my mitochondria! So your research is very validating to me. I got better with the help of medical qigong, along with co-enzyme Q-10 and a diet of healthy organic food. ~ Posted by: sdakota42, Jan 12, 2016

I had cerebral vasculitis, rheumatoid arthritis and lupus recently. I inject 70 cc weekly metrotextate to control my immune system. Interfere with my treatment if I use KPAX IMMUNE? ~ Posted by: lrs13421, Jan 13, 2016

Reply: Many people with autoimmune diseases such as lupus and rheumatoid arthritis are taking K-PAX Immune formula with excellent results. Over ten years of clinical testing, we have not received any information to suggest that this formula of key mitochondrial support nutrients has any negative interactions with the medications you describe. However, we always suggest to people with autoimmune diseases to start with two tablets per day and then increase the dosage gradually so as to not over-stimulate their immune system. ~Posted by: JKaiserMD, Jan 14, 2016

Thanks for your prompt attention and response. I'm taking K-Pax from 90 days ago and I have more energy. MY rheumatologist asked me to do the consultation and appreciate your response. God bless you for the work you do for those who have chronic medical conditions. ~ Posted by: lrs13421, Jan 17, 2016

Warfarin is commonly used keep the blood thin and is also known by the name of Coumadin. It works by interfering with your liver's production of clotting factors, thereby making it harder for blood to form a clot. Anything that affects the health of your liver (either positively or negatively) can affect the level of warfarin in the blood and may require an adjustment to your dosage to keep it in the proper range. This includes changes to your diet and the use of any new vitamin supplements. Since K-PAX Immune formula is capable of improving liver health and function, it may be necessary for you to make an adjustment to your warfarin dosage after starting to take this supplement. This is why your doctor should be recommending a monthly blood test. The need to adjust your warfarin dosage due to this effect is par for the course and should not be viewed as a negative event. The above information is not meant to be medical advice. Please check with your doctor before taking any new treatments. Dr. Jon Kaiser. ~ Posted by: JKaiserMD, Jan 14, 2016

Glycine and sleep 

Re: The experience of sleep in chronic fatigue syndrome: A qualitative interview study with patients

I have found that taking the amino acid glycine before bed helps with falling and staying asleep. Glycine is a precursor to GABA and also an important endogenous regulator of inflammation. It is a non-essential amino acid — the body makes it — however, since the amino acids glycine and methionine are reciprocal, the body uses up glycine to get rid of excess methionine. We only need a few hundred milligrams of methionine as the body, mainly the liver, is very good at recycling it. The western diet is heavy in methionine-rich meat (like steak) and very poor in glycine (typically found in cartilage — bone broth).

Glycine is a neuro-inhibitory (relaxing) amino acid which may explain why it helps with sleep. Since the body manufactures it, glycine, until recently, hasn't gotten much attention. However, in our western methionine-rich diets (eggs, fish and poultry are also high in it) is may well be we need supplemental glycine (Great Lakes Gelatin is 29% glycine, it is also available as a stand-alone supplement — I use NOW glycine powder). Unlike much of the world, and our past history, we no longer eat the whole animal, specifically bone/cartilage (made into bone-broth).

Dr. Joel Brind, Professor of Biology and Endocrinology at Baruch College, has an interesting article on the subject at 180DegreeHealth. ~Posted by: Photo1776Bill, Jan 13, 2016

Aloe AMP for gut infections 

Re: Gut Infection Could Underlie Symptoms in Chronic Fatigue Syndrome

I have found that Aloe AMP helps me when my gut symptoms flare up. ~Posted by: MaureenVG, Jan 13, 2016

Interesting article

Re: Powerful Evidence That Chronic Fatigue Syndrome (CFS) And Fibromyalgia (FM) Are Real And Mainly Physical

Interesting article, and I am very happy that good research is being done……however, I am SOOOOOOOOOO sick of research articles coming out with headings that proclaim that someone finally found proof that this is not in our heads (or something along those lines)..

…we have had a TON of objective research over the yrs that does show that this is a physical illness. It just gets suppressed, and the stupid theory that this is psychological gets pushed…

….and then every time there is something slightly new researched, we get another of these headlines……they are not doing us any favors, because they actually subtly reinforce the idea that this might be psychological – ie they tell people again that there are many who have long believed that this is in our heads, and in doing so, a lot of skeptics think that the new research isn't enough to discount all the long held beliefs ..

….believe me, I have read so many of these types of articles, and the comments made by people in the general public to know that this is what happens……the general public does not have reason to actually really look into the all the reasons why the psych beliefs are wrong, and all the previous physiological research that does show that this is a "real" physical illness…..they just see the stupid headlines again proclaiming that this is "real" and they don't buy it

and, yes, I know this is being published in a newsletter sent to patients, not the general public, but it is still available for anyone who happens to google this illness and articles also get shared with the general public themselves and also get quoted and used as reference for other articles… this stuff does get out there 

I am all for this stuff getting published….I didn't mean for my last comment to sound like I am not…..I just wish that the headlines would simply say what the research is about; not proclaim yet another time that they have finally found proof that this is not a psych issue. ~Posted by: AuntTammie, Jan 13, 2016

A caution re probiotics 

Re: A Commercially Available Probiotic Reduces Chronic Fatigue Syndrome's Inflammation-Should we offer this as a Treatment?

While they are very beneficial for many, there are a lot of ME/CFS patients who find they have big problems with taking them. (And for some those problems do not go away once the probiotics are stopped) That may be because some of the byproducts of probiotics include H2S (a neurotoxin) and lactose or lactase (sorry I forgot which one) and ME patients' bodies do not do a good job of getting rid of these ….there are a few other potential reasons as well, but thanks to brain fog, I am not currently remembering them. 

I have really researched this, though, because when I first tried taking probiotics, I got a lot worse. I stuck with them thinking that it was just the initial reaction and that perhaps I was having a herx reaction, too. The end result was that I developed gut issues I had never had, and I also woudn up with several other aspects of my ME getting significantly worse. The gut issues got so bad, I literally almost died form them. And, the other issues never completely improved even after yrs without the probiotics. 

I couldn't figure out why since they seem so safe and are pushed so much as being beneficial (and like I said for many, they are). I found that I am far from being the only one who has had these issues. I also gave a different brand of them another try yrs later at my Dr's insistence. And, even he woudn up agreeing that they are not a good idea for me. ~Posted by: AuntTammie, Jan 13, 2016


Re: Alcohol intolerance in CFS – gives us a clue as to the mechanisms of fatigue

Thank you for raising awareness of this. Alcohol intolerance is rarely mentioned in the diagnostic criteria for CFS ME but should be! I have also found there is a caffeine intolerance. As I have recovered, I have been able -fortunately or unfortunately- to drink more coffee without a problem. That said, I still have to be careful not to overdo alcohol or caffeine. ~ Posted by:, Jan 19, 2016

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