Assessment of neurocognitive impairment in CFS using QEEG brain mapping

Posted on 02/10/2016 by wames

Research abstract:

Importance: Chronic Fatigue Syndrome (CFS) is a chronic disease resulting in considerable and widespread cognitive deficits. Accurate and accessible measurement of the extent and nature of these deficits can aid healthcare providers and researchers in the diagnosis of this condition, choosing interventions and tracking treatment effects.

Here, we present a case of a middle-aged man diagnosed with CFS which began following a typical viral illness.

Observations: LORETA source density measures of surface EEG connectivity at baseline were performed on 3 minutes of eyes closed deartifacted19-channel qEEG. The techniques used to analyze the data are described along with the hypothesized effects of the deregulation found in this data set.

Nearly all (>90%) patients with CFS complain of cognitive deficits such as slow thinking, difficulty in reading comprehension, reduced learning and memory abilities and an overall feeling of being in a “fog.”Therefore, impairment may be seen in deregulated connections with other regions (functional connectivity); this functional impairment may serve as one cause of the cognitive decline in CFS. Here, the functional connectivity networks of this patient were sufficiently deregulated to cause the symptoms listed above.

Conclusions and significance: This case report increased our understanding of CFS from the perspective of brain functional networks by offering some possible explanations for cognitive deficits in patients with CFS. There are only a few reports of using source density analysis or qEEG connectivity analysis for cognitive deficits in CFS.

While no absolute threshold exists to advise the physician as to when to conduct such analyses, the basis of his or her decision whether or not to use these tools should be a function of clinical judgment and experience. These analyses may potentially aid in clinical diagnosis, symptom management, treatment response and can alert the physician as to when intervention may be warranted.

qEEG / LORETA in Assessment of Neurocognitive Impairment in a Patient with Chronic Fatigue Syndrome: A Case Report Marcie L Zinn, Mark A Zinn, Leonard A Jason in Clin Res 2(1), 30 Jan 2016

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POTS, CFS and reactions to vaccines

Posted on 02/08/2016 by wames

Review article:

Postural orthostatic tachycardia syndrome (POTS) is a heterogeneous disorder of the autonomic nervous system in which a change from the supine position to an upright position causes an abnormally large increase in heart rate or tachycardia (30 bpm within 10 min of standing or head-up tilt).

This response is accompanied by a decrease in blood flow to the brain and hence a spectrum of symptoms associated with cerebral hypoperfusion.

Many of these POTS-related symptoms are also observed in chronic anxiety and panic disorders, and therefore POTS is frequently under- and misdiagnosed.

The estimated prevalence of POTS is at least 170/100,000. This estimate was based on the finding that 40% of patients with chronic fatigue syndrome (CFS) also suffer from POTS. Indeed, CFS is a frequent and major complaint in POTS, and a substantial overlap between POTS and CFS has been consistently reported in the literature.

Despite its common prevalence and significant negative impacts on the population, the causes of POTS and CFS remain unclear and there are currently only limited effective treatments for these complex conditions. Genetic as well as non-genetic factors such as trauma, bacterial or viral infection, and pregnancy may predispose to POTS.

In addition, it is becoming increasingly recognized that POTS and CFS can also be triggered by various medications (i.e., antihypertensive drugs, antipsychotics), and by vaccines.

An autoimmune mechanism has been suggested as a causal mechanism in both POTS and CFS due to frequent findings of autoantibodies (including ANA) in POTS/CFS patients. More specifically, ganglionic A3 acetylcholine receptor antibodies are found in at least one in seven POTS patients.

Moreover, various autoantibodies, including those directed against cardiac proteins, β1/2-adrenergic, M2/3 muscarinic23 and N-type acetylcholine receptors, have been identified in POTS patients, strengthening the idea of POTS as member of the autoimmune autonomic neuropathies family.

The presence of autoantibodies may predispose the heart and the autonomic nervous system to vulnerable pathologic stimuli, and an adverse autoimmune reaction may trigger possible inflammatory responses with injury to the myocardium as well as to the peripheral autonomic nerves. In addition, as shown by our group and others, immunoglobulins can penetrate/internalize into living susceptible specific cells, via diverse pathways of endocytosis involving different parts of the molecule.

Following endocytosis, the immunoglobulin may target different intracellular component of cellular signaling, leading to dysfunction of the specific cell. These scenarios may elucidate the contribution of pathogenic autoantibodies to the pathophysiology of diverse autoimmune diseases, including POTS.

POTS, CFS, and autoimmune disorders have a strong female predominance, which further suggests a common etiological denominator. The clinical significance of the positive ANA test in CFS patients is probably due to differential diagnoses of systemic lupus erythematosus (SLE) and other diffuse connective tissue diseases.

Indeed, both POTS and CFS frequently co-occur with systemic autoimmune disorders including multiple sclerosis, Sjogren’s syndrome, SLE, and Raynaud’s phenomenon. Petri et al. for example, found that 74% of SLE patients with fibromyalgia/CFS also have neurally-mediated hypotension.

With reference to post-HPV vaccine POTS, it is probable, as emphasized by Blitshteyn, that some patients are simply undiagnosed or misdiagnosed, which leads to underreporting and a paucity of data on the incidence of POTS following vaccination. Analysis of the US Vaccine Adverse Event Reporting System (VAERS) database substantiates this concern. In particular, although the majority of POTS-related symptoms were reported in 4–16% of HPV vaccine recipients, POTS was only reported in 0.07% of cases (Figure 1). Compared to two other vaccines routinely given to adolescents and young individuals in the US (Menactra and Varivax), HPV vaccines had the highest rate of both POTS and CFS-related complaints.

On average, the number of POTS/CFS symptoms was three to five times greater in HPV compared to Varivax vaccine recipients. A relatively high frequency of POTS/CFS symptoms reports were also recorded for the Menactra vaccine, suggesting that the risk of these syndromes may vary between different vaccines. If the associated symptoms were psychogenic and not related to a specific vaccine but rather a reaction to the injection procedure itself, one would expect a more even distribution of reports with different vaccines. As shown in Figure 1, this is clearly not the case. Because both POTS and CFS can be severely disabling conditions, a more thorough follow-up of patients who present with relevant complaints post-vaccination is recommended in order to determine the true incidence of these syndromes with particular vaccines.

Figure 1

Figure 1
Age-adjusted rate of POTS/CFS related adverse reactions reported following HPV, Menactra meningococcal polysaccharide diphtheria toxoid conjugate and Varivax Varicella vaccines in the US reported to the Vaccine Adverse Event Reporting System (VAERS) as of February 13, 2013. The VAERS database was searched using the following criteria: 1) symptoms: syncope (general, exertional, postural); headaches (including migraines); nausea; chronic fatigue syndrome (including general fatigue); tremors and palpitations; dyspnea (general, exertional, at rest); tachycardia (including tachyarrhythmia, tachycardia paroxysomal, heart rate abnormal, heart rate increased, heart rate irregular); influenza-like illness (including viremia, viral infection); POTS; 2) vaccine products: HPV, HPV2 (human papilloma virus bivalent), HPV4 (human papilloma virus types 6,11,16,18); MNQ (Meningococcal vaccine Menactra); Varcel (Varivax-Varicella virus live); 3) gender (all genders); 4) age (6–29 years; target age group for HPV, Menactra, and Varivax vaccines); 5) territory (the United States); 6) date vaccinated (2007–2013; HPV vaccine post-licensure period).

There are several plausible explanations for the appearance of abnormal cardiac manifestations, including death, following HPV vaccination. Namely, in exploring the primary sequence of the HPV 16 major capsid L1 protein (one of the four antigens in Gardasil) for peptide sharing with human proteins, Kanduc found that 34 pentamers from the HPV viral capsid protein are shared with human proteins that, when altered, have been linked to arrhythmias, cardiovascular diseases and sudden death.

In particular, 9 out of the 34 viral pentamers are present in the human protein, Titin, alterations of which have been linked to cardiac failure and sudden cardiac death. Other significant matches include components of intercellular desmosome junctions such as plakophilin-2, desmoplakins, and desmocollin-2. Defects in these desmosomal proteins have been reported in arrhythmogenic right ventricular cardiomyopathy (ARVC), which as mentioned above, has previously been linked to sudden cardiac death during sleep.

Another significant match with HPV-16L1 sequence, is the voltage-dependent L-type calcium channel subunit alpha-1C, alterations of which cause the Brugada syndrome, which is another arrhythmogenic disorder associated with high-risk nocturnal arrhythmias. In addition, MYH6 and MYH7, which are the two isoforms of the myosin heavy chain that are specifically located in the cardiac muscle and whose alterations can lead to sudden cardiac death, also show sequence similarity with HPV-16L1.

In summary, the cited investigation by Kanduc confirms and extends previous reports describing a high level of perfect peptide matching between bacterial/viral antigens and the human proteome. Furthermore, it suggests that possible immune cross-reactions deriving from utilization of HPV L1 in current HPV vaccines might be a risk for cardiovascular abnormalities (and fatalities), as well as POTS. The author emphasizes the necessity for better understanding of potential antigen cross-reactivity (which at present is lacking), since failure to analyze and minimize levels of cross-reactivity may lead to harmful, even lethal, post-vaccination events.

Postural Orthostatic Tachycardia Syndrome (POTS) – a novel member of the autoimmune family, by S Dahan, L Tomljenovic, Y Shoenfeld in Lupus 2016 Feb 3 pii [Epub ahead of print]

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Altered immunity found in Q fever fatigue syndrome

Posted on 02/05/2016 by wames

Research Highlights:

  • We explored the specific IFNγ production, and the IFNγ/IL-2 ratio in QFS patients.
  • QFS patients have a significant higher IFNγ production than seropositive controls.
  • The IFNγ/IL-2 ratio is significantly lower in QFS than in chronic Q-fever patients.
  • These results point to an altered cell-mediated immunity in QFS.

Research abstract:

OBJECTIVES: Whether immunological mechanisms underlie Q-fever fatigue syndrome (QFS) remains unclear. For acute Q-fever, the antigen-specific interferon-γ (IFNγ) response may be a useful tool for diagnosis, and the IFNγ/interleukin(IL)-2 production ratio may be a marker for chronic Q-fever and treatment monitoring. Here we explored the specific IFNγ production and IFNγ/IL-2 ratio in QFS patients.

METHODS: IFNγ and IL-2 production were tested in ex-vivo stimulated whole blood of QFS patients (n=20), and compared to those previously determined in seropositive controls (n=135), and chronic Q-fever patients (n=28). Also, the correlation between patient characteristics and IFNγ, IL-2, and IFNγ/IL-2 ratio was determined.

RESULTS: QFS patients were younger (p<0.001), but gender distribution was similar to seropositive controls and chronic Q-fever patients. C. burnetii Nine Mile stimulation revealed a higher IFNγ production in QFS (median 319.5 pg/ml) than in seropositive controls (120 pg/ml, p<0.01), but comparable to chronic Q-fever (2846 pg/ml).

The IFNγ/IL-2 ratio was similar to that in seropositive controls, but lower than in chronic Q-fever patients (p<0.01). Symptom duration was positively correlated with IL-2 production, and negatively correlated with the
IFNγ/IL-2 ratio.

CONCLUSIONS: These results point to an altered cell-mediated immunity in QFS, and suggest a different immune response than in chronic Q-fever.

Altered interferon-γ response in patients with Q-fever fatigue syndrome, by Keijmel SP, Raijmakers RP, Bleeker-Rovers CP, van der Meer JW, Netea MG, Schoffelen T, van Deuren M. in J Infect. 2016 Jan 25. pii  [Epub ahead of print]

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Did probiotics cure my CFS?

Posted on 02/04/2016 by wames

Did Probiotics Cure My Chronic Fatigue Syndrome?, by Carol Wolf,  Jan 7, 2016 on Heath Rising Blog

Thanks to Carol for allowing Health Rising to post her startling recovery story. Please note that we’re at the very early stages of understanding how probiotics may help people with chronic fatigue syndrome (ME/CFS) or fibromyalgia.  The trillions of bacteria present in the guts of the very heterogeneous ME/CFS and FM communities present much opportunity for variability.  Warning: while Carol did very well taking large numbers of probiotics some people with ME/CFS/FM can be sensitive to even small amounts of probiotics. (I added the video and resources at the bottom.)

Carol’s Story

I didn’t have anything to lose. Or at least that’s the way I felt. I’d been sick for so very long.

So experimenting with probiotics was something I was willing to do. The experiment was a success and because of it I want to share what I did, and why, in hopes that others might benefit. If you want to jump directly to my protocol, click here. If you want to learn how I reached this point, continue reading.

Autoimmune Diseases and ME/CFS

I was diagnosed with my first autoimmune disease at age 8. They thought I had rheumatoid arthritis. By age 12, Hashimoto’s thyroiditis and pre-diabetes were added to the diagnosis. As the years went by I struggled on and off with a variety of other illnesses. I had periods of good health and other times when I was completely bedridden.
Like many people with ME/CFS Carol’s many symptoms and conditions didn’t fit any one disease. In the end doctors settled on ME/CFS and/or atypical multiple sclerosis.

By the time I lost my job of 18 years due to my illness, I was still diagnosed with Hashimoto’s and diabetes, but also struggled with psoriasis, restless leg syndrome. depression, brain fog, irritable bowel syndrome, an intermittent inability to find words and form sentences, zero short term memory, balance problems, brain fog, lost time, low grade fevers, and on and on.

If I exercised I could find myself in bed for days and sometimes even weeks. I craved carbs a lot and was a good 20-pounds overweight. I had MRI evidence of mini strokes, brain lesions and a small brain tumor, blah, blah blah. I was on eight prescription drugs, two of those were antidepressants. That doesn’t count the psoriasis creams.

The diagnosis of rheumatoid arthritis no longer held up because blood tests were developed and I didn’t have the necessary RH factor to hold on to that label. The new labels were atypical MS and/or ME/Chronic Fatigue Syndrome depending on the doctor.

I always tried to keep a happy face throughout all of this. My mother was told when I received the RA diagnosis at age 8 not to coddle me and she didn’t. Because of that I learned to forge on. But those who know me well know how much I’ve struggled. I’d go for months feeling like I had the worse flu imaginable, but would drag myself out of bed using every ounce of my strength.

Other days, and sometimes into weeks, I just couldn’t move. It was everything I could do to keep working and often just to keep living. There were long years of good health and periods of the worse health imaginable, made harder to endure by the memory of what it was like to live a full life.

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I had to be very careful. I learned what made the illness worse and I paced myself. All effort was spent on keeping that job at all costs. Often that meant I had no social life and would sleep from the minute work was over until I had to start again. During better times when I could stay awake, but not socialize, I’d research my disease, desperately looking for answers.

I lost that effort to keep my job about three years ago. This much sadness was too much sorrow. They did good by me though, and I am eternally grateful for the compassion some of those higher in the company had for me during that time. If you ever read this, thank you.

My job for those 18 years was as a reporter with Bloomberg News. I am a reporter because by nature I investigate everything and I have doggedly followed every aspect of ME/CFS and autoimmune research. My own investigations led me to believe that my illness was caused by a virus. I wrote a novel, which outlined my findings in an easy-to-read format.

Blasting the Gut

I have closely followed the work of Dr. Ian Lipkin from Columbia University, particularly after his involvement in regards to XMRV. Lipkin says individuals with ME/CFS show signs of infection and that he believes that virus is located in the gut.

By a fluke one night I watched a PBS special on a book called The Brain Maker by Dr. David Perlmutter, which talked about the gut’s role in our health. I bought the book, read it, and I felt like it was telling the story of my life.

Since Ian Lipkin at Columbia, thought the answer was in the gut, and Perlmutter was outlining so much evidence related to the gut’s role in our health, I started digging and researched probiotics. In particular, I looked for probiotics that seemed associated with my different problems i.e. which strains seemed to help with depression, which for craving carbs, etc.

explosion
Carol blasted her gut with as many bacteria as she could, er…stomach.

I couldn’t find any one probiotic that contained all of the strains I wanted, so I just bought several different kinds and took them ALL!! In all, I started taking four high quality probiotics at one time and ate and drank fermented foods and drinks like komuchi and sauerkraut.

Mind you, at this point, my kids were grown and gone with lives of their own. I had lost my job of 18 years. I had only an intermittent social life. I didn’t have much to lose. My passion for horses, particularly my bond with my own horse, Sundance, is all that has kept me alive.

So taking four different probiotics at a time didn’t seem a big risk to me. Of course, no doctor would tell you to do this.

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The way I figured it was if I have 100 trillion different microbes in my gut then I have to BLAST the gut with good microbes to change the balance between good and bad flora. So blast I did.

The results were amazing. I got better, and better, and better, and better. Everything about me changed. I could think again. I had energy. I started getting out of bed and going about my day like a little bird, with plenty of energy. One of the biggest surprises was my hair, which had always been dry and frizzy. It’s now silky and straight.

Gradually I got braver and started to exercise. I didn’t get sick after exercise. I quit craving carbs and I’ve lost 18 pounds. I gradually weaned myself off all my medications. I now only take thyroid medicine, when I remember. The hardest part of this whole thing was weaning myself off Zoloft, that was horrible.

NO DOCTOR will tell anyone to take the amount of probiotics I take, but I did it, never expecting anything like this CURE to happen for me. It’s a miracle. It’s an absolute miracle.

I’m not a doctor. I KNOW NOTHING. This is purely experimental on my part. If you chose to do this and it doesn’t work, or does work, don’t look to me as any source of expertise. I’m just a lady who tried to help herself and decided to share my story.

Not Created Equal

After much research I have learned that not all probiotics are created equal. To help those interested in how to pick a good probiotic I wrote this blog.

I am taking FOUR different high-quality probiotics plus some prebiotics a day with meals. By looking at the labels, it appears that I take about 300 billion CFUs of probiotics a day. This includes about 50 different strains give or take. I make sure one of my probiotics contains so-called prebiotics. Prebiotics they say help the gut create an environment that is hospitable to good gut flora. I also drink at least one kombuchi daily. I don’t keep taking the same brands of probiotics all the time. I change brands because I want variety.

Before I studied up on probiotics, I had taken Align, called “the probiotic most recommended by doctors”. It did NOTHING for me and gave me a stomach ache. Align uses just ONE strain of probiotic – Procter & Gamble’s proprietary strain.

gut bacteria
Carol’s reading suggested that taking a variety of gut bacteria was important

Now that I’ve studied up on probiotics, I realized that taking just one strain of probiotic probably doesn’t provide the balance the gut needs to stay healthy and that’s why I ended up with a stomach ache. I guarantee you that the reason why it’s the most recommended probiotic has nothing to do with its usefulness and more to do with the fact that Procter & Gamble has the marketing budget equivalent to the GDP of many small countries. They market Align to doctors, who tell you to try it. Don’t waste your money.

When I eat too many carbohydrates it seems to set the gut out of whack again, so then I’ll take an extra probiotic dose. Through this method, I can eat within reason what I like and still stay healthy. However, I no longer crave carbs as I once did so controlling the carb intake is much easier than it used to be.

Depression and Probiotics

I recently had more proof that probiotics were indeed what has made the difference in my life. I recently quit taking them as religiously and I went into a horrible, horrible depression – remember I’m anti-depressant free at this point. I loaded up on probiotics again and the depression lifted in about three days.

I don’t know if this is permanent or not. What I do know is that I have become depressed again when I quit taking the probiotics regularly. When I loaded back up on probiotics, the depression went away. Much still needs to be studied on this subject. This was purely experimental on my part. No doctor will tell you to go off your antidepressants because of probiotics. What happened to me was that I felt mentally better than I had in as long as I can remember and I said to myself I wonder if I still need these antidepressants and gradually, gradually weaned myself off them.

I have no doubt drug companies will try and discredit the use of probiotics. I for one am off many prescription drugs. That can’t be good for their bottom lines. Either they will try and discredit them, or they will lobby to get the government to make probiotics prescription drugs. Just do your own research and don’t believe me or the drug companies without protecting yourself first.

Virus in the Gut?

My theory is that because of my lifetime illness, I may have to take these probiotics for a long time, maybe forever. Maybe there is a virus in the gut that sets the microbial balance out of whack and taking the probiotics keeps it in check.

A recent study showed evidence that people with ME/CFS experience changes in their gut flora during and after exercise – changes that did not occur in healthy individuals. I know that I can exercise again and I don’t end up in bed for a week when I do. I find this research very exciting considering what has happened to me.

This is entirely experimental on my part. I have NO IDEA. My absolute worse fear is that it will come back. Please don’t come back….

And no I don’t sell probiotics, nor am I associated with anything that sells or promotes anything. I’m just a formerly sick woman who stumbled upon – through dumb luck and research — a cure for what ailed her. Off to ride my horse…

Carol’s Protocol

These are the ones I’m on now. I don’t keep taking the same kind all the time. I change it up but I always want some with PRE-biotics as well.
•Raw Probiotics for Women
•Complete Probiotic by Mercola
•Perfect Probiotics
•Multidophilus 24, Super 30 bil Solaray

One ME/CFS Patient’s Probiotic Purchasing Primer

Not all probiotics are created equal and picking the right ones can be all important to seeing changes in your health. Here are some things I learned from my reading to look for when making a purchase of quality probiotics:
1.Get Live Bacteria –  Make sure there is some sort of guarantee that the microbes are live. Probiotics are meant to deliver live critters to your gut; dead critters don’t count. Some companies say “live at manufacturing” and don’t guarantee what will be there when the product gets to you. Others promise live microbes, while some ignore the issue altogether. If they ignore the issue, I’d be inclined to ignore the manufacturer and buy elsewhere. Read the fine print on the label.
2.Abundance is Important –  The human body carries about 100 trillion microorganisms in its intestines, a number ten times greater than the total number of human cells in the body.  So if you want to change your gut flora you need LOTS of “critters” –  the more “CFU’s” the better.  Look for probiotics that have billions and billions of units. Manufacturers generally referred to them as Colony Forming Units, or CFU. (A colony forming unit is a bacteria or yeast that is capable of living and reproducing to form a group of the same bacteria or yeasts.)
3.Diversity Works –  The current state of science says that we have as many as 1000 different strains in our guts, so look for probiotics that have a large variety of strains. Again, read the label. The more strains the better. In advanced probiotics, we’ll talk about how different strains of bacteria affect different aspects of the body, and how bacteria become personalized, but for this primer, think the more strains the better.
4.Look for Mixtures that Contain Prebiotics –  Prebiotics set the stage to allow microbial colonies to flourish.

Resources
•ME/CFS/FM Gut Recovery Stories On Health Rising
•Health Rising’s Gut Resource Section  – including more on Dr. Perlmutter
•Gut Video’s on Health Rising including more from Dr. Perlmutter: Overviews and Research / Treatment
•Dr. Mercola on Dr. Perlmutter – nice overview of Dr. Perlmutter’s work

Dr. Perlmutter on the Gut

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Binocular vision in CFS

Posted on 02/03/2016 by wames

Research abstract:

INTRODUCTION AND PURPOSE:
To compare binocular vision measurements between Chronic Fatigue Syndrome (CFS) patients and healthy controls.

METHODS:
Forty-one CFS patients referred by the Reference Centre for Chronic Fatigue Syndrome of the Antwerp University Hospital and forty-one healthy volunteers, matched for age and gender, underwent a complete orthoptic examination. Data of visual acuity, eye position, fusion amplitude, stereopsis, ocular motility, convergence, and accommodation were compared between both groups.

RESULTS:
Patients with CFS showed highly significant smaller fusion amplitudes (P < 0.001), reduced convergence capacity (P < 0.001), and a smaller accommodation range (P < 0.001) compared to the control group.

CONCLUSION:
In patients with CFS binocular vision, convergence and accommodation should be routinely examined. CFS patients will benefit from reading glasses either with or without prism correction in an earlier stage compared to their healthy peers. Convergence exercises may be beneficial for CFS patients, despite the fact that they might be very tiring. Further research will be necessary to draw conclusions about the efficacy of treatment, especially regarding convergence exercises. To our knowledge, this is the first prospective study evaluating binocular vision in CFS patients.

Binocular Vision in Chronic Fatigue Syndrome, by D Godts, G Moorkens, DG Mathysen in Am Orthopt J. 2016 Jan;66(1):92-97

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GAA supplement improves strength but not fatigue & pain in women with CFS

Posted on 02/03/2016 by wames

Research abstract:

A variety of dietary interventions has been used in the management of chronic fatigue syndrome (CFS), yet no therapeutic modality has demonstrated conclusive positive results in terms of effectiveness.

The main aim of this study was to evaluate the effects of orally administered guanidinoacetic acid (GAA) on multidimensional fatigue inventory (MFI), musculoskeletal soreness, health-related quality of life, exercise performance, screening laboratory studies, and the occurrence of adverse events in women with CFS.

Twenty-one women (age 39.3 ± 8.8 years, weight 62.8 ± 8.5 kg, height 169.5 ± 5.8 cm) who fulfilled the 1994 Centers for Disease Control and Prevention criteria for CFS were randomized in a double-blind, cross-over design, from 1 September 2014 through 31 May 2015, to receive either GAA (2.4 grams per day) or placebo (cellulose) by oral administration for three months, with a two-month wash-out period. No effects of intervention were found for the primary efficacy outcome (MFI score for general fatigue), and musculoskeletal pain at rest and during activity.

After three months of intervention, participants receiving GAA significantly increased muscular creatine levels compared with the placebo group (36.3% vs. 2.4%; p < 0.01). Furthermore, changes from baseline in muscular strength and aerobic power were significantly greater in the GAA group compared with placebo (p < 0.05). Results from this study indicated that supplemental GAA can positively affect creatine metabolism and work capacity in women with CFS, yet GAA had no effect on main clinical outcomes, such as general fatigue and musculoskeletal soreness.

Supplementation with Guanidinoacetic Acid in Women with Chronic Fatigue Syndrome by Sergej M. Ostojic, Marko Stojanovic, Patrik Drid, Jay R. Hoffman, Damir Sekulic and Natasa Zenic in Nutrients 2016, 8(2), 72; [Published: 29 January 2016]

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EEG shows brain electrical activities significantly reduced in CFS

Posted on 02/02/2016 by wames

Research abstract:

Objective: To explore the electroencephalogram (EEG) characteristics in patients with chronic fatigue syndrome (CFS) using brain electrical activity mapping (BEAM) and EEG nonlinear dynamical analysis.

Methods: Forty-seven outpatients were selected over a 3-month period and divided into an observation group (24 outpatients) and a control group (23 outpatients) by using the non-probability sampling method. All the patients were given a routine EEG. The BEAM and the correlation dimension changes were analyzed to characterize the EEG features.

Results: 1) BEAM results indicated that the energy values of δ, θ, and α1 waves significantly increased in the observation group, compared with the control group (P<0.05, P<0.01, respectively), which suggests that the brain electrical activities in CFS patients were significantly reduced and stayed in an inhibitory state; 2) the increase of δ, θ, and α1 energy values in the right frontal and left occipital regions was more significant than other encephalic regions in CFS patients, indicating the region-specific encephalic distribution; 3) the correlation dimension in the observation group was significantly lower than the control group, suggesting decreased EEG complexity in CFS patients.

Conclusion: The spontaneous brain electrical activities in CFS patients were significantly reduced. The abnormal changes in the cerebral functions were localized at the right frontal and left occipital regions in CFS patients.

Electroencephalogram characteristics in patients with chronic fatigue syndrome by Tong Wu, Xianghua Qi, Yuan Su, Jing Teng, Xiangqing Xu in Neuropsychiatric Disease and Treatment, Vol 2016:12 Pages 241—249

 

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Biovista identifies potential drugs for ME/CFS

Posted on 02/02/2016 by wames

Solve ME/CFS Initiative Press Release: Results of Biovista Work Released

In 2012, the Solve ME/CFS Initiative—under its former organization as the CFIDS Association of America—funded Biovista Inc., a private drug development services company, to identify potential drugs that might be repurposed to ameliorate ME/CFS symptoms. Biovista identified two FDA-approved drugs that might have applicability for ME/CFS.

Since the completion of the work, the possibility of raising funds to further develop a treatment based on this combination has been explored. In view of the recent effort for National Institutes of Health funding for ME/CFS, the research and patient community may be better served by making this initial finding known to the public now.

Low Dose Naltrexone (LDN) and Trazodone are the two drugs identified through a bioinformatics analysis as potential treatment in ME/CFS. In its analysis, the company employed Drug Repurposing, the process of finding new indications for existing drugs, to identify compounds for the treatment of ME/CFS, focusing on case-defining symptoms, such as cognitive impairment and unrefreshing sleep among others.

The method entailed using a proprietary in silico platform—that is, based on an algorithm, not an experimental biology investigation—called Clinical Outcome Search Space (COSS) to predict compounds relevant to ME/CFS Symptoms. COSS analysis is a literature-based modeling approach for making predictions that uses two basic steps. The first step is the creation of multi-dimensional profiles of biological entities of interest such as drugs, disease, genes, proteins and adverse events. The second step is the ranking and prediction process.

Naltrexone is an FDA-approved drug for the use of opioids addiction.
As an opioids receptor antagonist, it binds opioids receptors with the net effect of reversing or blocking the opioids effects. Low Dose Naltrexone has been used as an “off-label” treatment for some conditions unrelated to addiction or intoxication, like Multiple Sclerosis and Fibromyalgia. Trazadone is an antianxiety drug with sleep-inducing benefits. It belongs to the serotonin antagonist class of drugs and has been used by many ME/CFS specialists to help in the management of ME/CFS symptoms.

It is important to emphasize that the outcome of this research is the result of computer-assisted methodologies only; these drugs have not been tested by the company through experimental investigations for safety, synergy or efficacy with regard to ME/CFS. Making these two drugs known is in no way an endorsement of their use. No clinical trials have been undertaken, and dosage and ratios are as yet unknown.

That said, many patients have experience with Trazodone and LDN since multiple physicians treating ME/CFS prescribe them. The familiarity of these two drugs could warrant further investigation.

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ME not conversion disorder, says AfME

Posted on 02/01/2016 by wames

Action for M.E. criticises psychosomatic M.E. claim, January 27, 2016

Action for M.E. has criticised an article on Psych Central claiming M.E./CFS is a psychosomatic illness and the result of conversion disorder. [the article has since been removed]

In their comment on the article, which the site’s moderators had not yet approved at the time of writing, Action for M.E. said:

“Current evidence in no way indicates that chronic fatigue syndrome (CFS) is a conversion disorder.

“We find it difficult to understand how any professional could, in the face of such biomedical evidence as brain abnormalities (Montoya, 2014) and distinct immune markers (Hornig and Lipkin, 2015), perpetuate such a misunderstanding about the condition – not to mention the fact that it is classified as a neurological disorder by the World Health Organisation.

“What’s most inappropriate is the suggestion that people with M.E./CFS should be encouraged to “understand that the pain is not structurally significant” and that “there should be no physical restrictions of activities.”

“The NICE guideline for M.E./CFS in the UK, while not perfect, makes it clear that healthcare professionals should never offer “advice to undertake unsupervised, or unstructured, vigorous exercise (such as simply ‘go to the gym’ or ‘exercise more’) because this may worsen symptoms.”

“Research by Prof Mark Van Ness has demonstrated that exercise such as walking or jogging exacerbates symptoms, while Prof Julia Newton has found abnormalities in the muscle cells of people with M.E./CFS, including up to 20 times the normal amount of acid being produced.

“NICE also advises, entirely in opposition to this article’s suggestion that M.E./CFS is among those illnesses for which “all treatments for symptoms should be eliminated,” that the symptoms of the condition should be “managed as in usual clinical practice.”

“As last year’s Institute of Medicine report concluded, having reviewed more than 9,000 studies published between 1950 and 2014, “It is clear from the evidence compiled by the committee that M.E./CFS is a serious, chronic, complex, multisystem disease.”

Dr Speedy writes on January 26, 2016: New low in psychiatry, rheumatoid arthritis and carpal tunnel syndrome are now called a conversion disorder …

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‘Agony uncle’ Graham Norton advises person with ME

Posted on 02/01/2016 by wames

Telegraph article, by Graham Norton,  Agony Uncle  30 January 2016: Dear Graham Norton: I have M.E. and can’t stop being jealous of friends

‘I feel I’ll be left alone in my terrible reality’, writes one reader

Dear Graham

I’m in my mid-30s, and I have M.E. I’ve been ill for many years; I had to give up my career and return to live with my parents. Many friends have fallen by the wayside; I have tried not to let myself be too jealous of the ones I have left as they get on with their lives. But now my closest friend has texted me to say she is going to move to California with her husband. I always wanted to work abroad, particularly in the US. I have found this lovely news for her so terribly awful for me. I’ve had some of the happiest times in my life with her. It feels like the last link to my old life, before I was ill, is about to be gone, and I’ll be all alone in my terrible reality.

I haven’t replied to her text – because I feel that I’ve reached the end of my ability to watch friends live a life I can’t. I should keep going – but I can’t. I’m writing because I don’t know how to keep being the ill person left behind. How can I talk about her move, look at her photos, knowing what my life is now?

Heather, via email

Dear Heather

At the moment your life is extremely difficult. No one is denying that. A weaker body is bound to affect your mind, and summoning up the strength to put a positive spin on things becomes harder and harder. I’m sure you are getting the medical treatment you need but depression can often be associated with conditions such as yours, so make sure you are talking to someone about that alongside your M.E. Overall I would advise you to focus on your own life rather than the lives you see being lived around you or online. Measure your good days and bad ones against how you felt yesterday morning.

Other people’s lives are not there to be compared with the one you are living. Your friend isn’t going to California to make you feel worse. She is simply living her life as you must live your very different one. Guard against believing everything you see and hear online. Scrolling though Facebook can make you think that everyone else is spending every waking moment laughing with friends over drinks or lounging on a beach with a cocktail and a lover. None of it is real. Those people also wake up tired and depressed. They hate their job, their boiler broke, their partner cheated on them.

I hope your friend has a wonderful new life in California, but it won’t be easy. Starting jobs and making friends while trying to maintain a marriage will be extremely stressful. Of course she should go, but as you wave her off remember that all lives are challenging and difficult, not just yours. I would never suggest you do something as glib as count your blessings, but when you feel at your lowest ebb remember that you do have parents who love you, friends who think of you often, and, unlike many people with M.E., no children or partner to worry about. I sincerely hope that your condition improves soon and that you can resume the life you thought you would have. I know you think all your friends have moved on with their lives without you, but this isn’t a race. This may be small consolation, but when things get better, you will savour the good times in a way that no one else can imagine.

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