Monthly Archives: February 2016

Unknown's avatar lassesen 6:02 am on February 3, 2016  

What are common symptoms of CFS?

I am a numbers man. Many studies say something like “CFS have high A-B-C” which is correct if you look at the average of a group. Unfortunately, it may just be 30% of the patients that are high and 70% that are normal. I have attempted to track down abnormality by the percentage of patients with various conditions.

  • Magnesium deficiency 45% – 50% of CFS patients have low levels [2000]
  • CoQ 10 low in 45% of CFS patients have low levels [2009]
  • high levels of cytokines in 60% only, 40% of CFS patients do not have high levels of the typical 9 cytokines [1994].
  • Cortisol is low in 33% [2001]
  • Heart is smaller [2011] (61% [2008])
  • Iron – 69% of CFS patients are insufficient or deficient [2001] [2011].
  • Magnetic resonance imaging (MRI) studies are hit-and-miss for showing abnormalities [1997] [2000] [2010].  Approximately 27% [1993] – 32%[1997] has abnormal scans.
  • Positron emission tomography (PET) scan has 50% with abnormal scans [2003]
  • Single-photon emission computerized tomography (SPECT) scans has 80% – 81% with abnormal scans [1992] [1994]
  • Shortness of breath (32%)
  • Dyspnea on effort (28%),
  • Rapid heartbeat or tachycardia (18% – 38%),
  • Chest pain (43%)
  • Neurally-mediated syncope (21%)
  • Fainting (43%),
  • Orthostatic dizziness (40% – 45%)
  • Coldness of feet (42%), were all frequent complaints.
  • Hypo-tension (28%) was occasionally noted.
  • Electrocardiograms with right axis deviation (21%) and
  • Severe sinus arrhythmia (34%)
  • Small heart shadow (cardiothoracic ratio <or=42%) patients (60%)
  • Low heart stroke volume (36%)

Infections found with Percentages

There are many other infections found that are over-represented with CFS compared to controls.

“A relatively uniform post-infective fatigue syndrome persists in a significant minority of patients for six months or more after clinical infection with several different viral and non-viral micro-organisms. Post-infective fatigue syndrome is a valid illness model for investigating one pathophysiological pathway to chronic fatigue syndrome.” [2006]

  • Q fever confirmed – 17%  [2006]
  • Ross River virus – 24%  [2006]
  • EBV (20%[2003] -23% [1991] – 27% [2006] – 57% [2004]) Epstein-Bar Virus (EBV)
  • Mycoplasma (50%[2003] – 52%[2003] – 69% [2004] [1998])
  • HHV6 (31% [2003]) Human Herpes Virus 6 (HHV6)

Bottom Line

The model that is the simplest to explain the same type symptoms across many infection is a stable dysfunctional microbiome. The precise symptoms are dependent on the specific bacteria involved. These bacteria are more varied and unique than DNA. High or low values are likely caused by specific groups of bacterias.

Unknown's avatar lassesen 12:01 am on February 2, 2016  

Lightning Process or Dynamic Neural Retraining

A reader asked me to look at the Lightning Process. This is an area that can be emotional for many CFSers .. so I have tended to avoid it. The question was asked, and thus I should attempt to answer it.

“Some people have done Lightning Process or Dynamic Neural Retraining and claim that they are completely or substantially healed, either 3 days later or after several months of continuing the practice.”

My usual response to such is “show me the evidence on PubMed” – I have been reading CFS forums for many years and seen similar claims. I believe that the placebo effect is real — and when the condition is known to flare with stress, a substantial change of attitude (thus reducing stress) actually has the possibility of working for some. But as always on this blog — evidence!!!!

Other Commentators on this process

Lightning Process

“The Lightning Process is a 3-day training programme that has recently become available, but no outcome studies have yet been published. It is a non-medical training programme that combines concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy” [2013].

  • “among 123 newspaper articles. The most frequent statements were positive statements towards alternative treatment Lightning Process (26.2%), negative statements towards evidence-based treatments (22.1%), and positive statements towards other alternative treatment interventions (22.1%).” [2011]
  • “Three of the 5 patients had been diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and all of them have related their unfavorable outcomes to the treatment method called Lightning Process (LP), a 3-day training program designed by British osteopath Phil Parker...One patient expressed that “to follow the advice from the LP instructor eventually became a direct risk to my health….The 3 “worst” cases reported with regard to LP are consistent, and there is reason to suspect a causal relationship.” [2012]
  • Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis–a qualitative study [2013]. ” Less helpful aspects were the intensity and short duration of the treatment with little follow-up, the secrecy surrounding it, and feelings of being blamed if the treatment did not work.” There were no before and after lab tests done. The evaluation was subjective after the 3 day course (no followup from 1 month or 6 months later)
  • “Conducting randomized controlled trials (RCTs) to investigate an alternative treatment such as LP is feasible and acceptable for children with CFS or ME. Feasibility studies that incorporate qualitative methodology enable changes to be made to trial protocols to improve acceptability to participants.” [2013]
  • “This study will tell us whether adding the LP to SMC is effective and cost-effective compared to SMC alone. This study will also provide detailed information on the implementation of the LP and SMC.” [2013] The info on this clinical trail is here. The trial site has been taken down. “We have now shown that it is possible to run the study and are planning to convert the study to a randomised trial. Report. We anticipate that this will start in September and will run for a further 8 months.”[2014] – no further study appear to have started.

Bottom Line

There have been no objective results. In a study group of over 150 teenagers, there was not a single report of remission. The study compared the results of Lightening Process to Conventional Specialist Treatment – which is a naive approach. I recall reading studies that the outcome of conventional treatment on a sample of patients was worst than having no treatment (a true placebo test).

The 100% reporting adverse results in an earlier study is also significant. ” and feelings of being blamed if the treatment did not work” raises a great red flag over the reliability of any subjective or interview results. Guilt for non-results will cause people to lie (actually deceive themselves would be a better expression)

For any tests to have objective credit-ability, I believe a SPECT scan before and after the training is needed. SPECT scans show abnormalities in over 75% of CFS patients and thus would be a good, simple, single reference point.  If after the study, the before and after spect scan are given to independent radiologist (with which is which being hidden), the results would likely passing scientific object muster.

There is no evidence on PubMed  that Lightening Process can result in remission. The information from the existing studies strongly suggests that to be creditable, any future study MUST have objective lab results and not just interviews and subjective reports.

Unknown's avatar lassesen 12:01 am on February 1, 2016  

Staphylococcus aureus – the CFS maintainer?

My last two posts resulted from happenstance! While looking at vaccines as a possible trigger for CFS or CFS-like symptoms, I stumbled across a vaccine that resulted in significant remission for many CFS patients – a Staphylococcus aureus vaccine. Prior to this, I had been ping earlier in the week to investigate Protandim, a patented herb mixture which appears to result in major improvement/remission for several months and then stopped working. While investigating the individual herbs, I saw some were effective against staphylococcus aureus. I repeated my research for this specific bacteria and found they were particularly effective against staphylococcus aureus.

In this post I am going to explore if staphylococcus aureus (or some related unknown species) is likely connected to CFS and co-morbid conditions.  Then I am going to explore probiotics and herbs that appear to decrease staphylococcus aureus according to the literature. Remember staphylococcus aureus is the species and not the strain. Some strains may be good, other very bad and other may be neutral but support a dysfunction microbiome, i.e. a helper.

The Bacteria Staphylococcus Aureus

“Staphylococcus aureus persistently colonizes about 20 % of the population and is intermittently associated with the remainder. The organism can cause superficial skin infections and life-threatening invasive diseases. The surface of the bacterial cell displays a variety of proteins that are covalently anchored to peptidoglycan. They perform many functions including adhesion to host cells and tissues, invasion of non-phagocytic cells, and evasion of innate immune responses. The proteins have been categorized into distinct classes based on structural and functional analysis. Many surface proteins are multifunctional. Cell wall-anchored proteins perform essential functions supporting survival and proliferation during the commensal state and during invasive infections. The ability of cell wall-anchored proteins to bind to desquamated epithelial cells is important during colonization, and the binding to fibrinogen is of particular significance in pathogenesis.” [2015]

“Strains of Staphylococcus aureus, an important human pathogen, display up to 20% variability in their genome sequence, [2008] (note that between humans and chimpanzee is 4%)

A list of a few strains identified.

Wikipedia cites

Co-morbid Conditions

  • “the primary Sjogren’s syndrome subjects displayed an increased frequency of C.albicans, Staphylococcus aureus, enterics, and enterococci”[2001]
  • High level of Staphylococcus aureus reported in IBS [2011]
    • ” it is advisable that the use of rifaximin as a therapy for IBS should be limited to single, acute, short-term treatment.” [2013] – to prevent resistance developing
  • Dry Eye: “Eighty-eight strains were isolated (48 strains of Propionibacterium acnes, 26 coagulase-negative Staphylococcus [CNS] species, six Staphylococcus aureus strains, and eight others). Of the 26 CNS strains, 17 (65.4%) were fluoroquinolone resistant, including four (33.3%) of 12 methicillin-sensitive CNS and 13 (92.9%) of 14 methicillin-resistant CNS.” [2008]
  • Central nervous System: “Staphylococcus aureus plays an important role as a bacterial pathogen after traumatic injury. The majority of isolated strains produces alpha-toxin, a 33-kDa protein, with membrane-damaging and lethal effects. The central nervous system (CNS) has been considered as the possible target for the lethal action of this toxin.” [1991]

Probiotics

Note: Many studies cites “inhibits” which may anything from 1% less to 99% less. If 50% is inhibited, what is not inhibited will grow back to fill the vacuum.

Herbs and Spices

I have checked out the availability of some of the uncommon herbs. There has been no attempt to evaluate these against other bacteria families.

Grapefruit Seed Extract is NOT effective “the potent as well as nearly universal antimicrobial activity being attributed to grapefruit seed extract is merely due to the synthetic preservative agents contained within.”[1999]

Antibiotics

Staphylococcus aureus has become very resistant to most antibiotics. “Staphylococcus aureus is notorious for its ability to become resistant to antibiotics. Infections caused by antibiotic-resistant strains often occur in epidemic waves initiated by one or a few successful clones.” [2009]

  • “At a breakpoint of 32 μg/mL, rifaximin inhibited in vitro …100% of Staphylococcus aureus.” [2014]
    • It has had good reports in IBS
      • ” the efficacy of rifaximin for the resolution of overall IBS symptoms was greater than that of the placebos” [2016]
      • “Rifaximin proved more effective than placebo for global symptoms and bloating in IBS patients. The modest therapeutic gain was similar to that yielded by other currently available therapies for IBS.” [2012]

Bottom Line

Staphylococcus aureus is likely a significant player for some symptoms seen with CFS. Treating it is a challenge because of its ability to adapt around most antibiotics (and thus herbs/spices). Rotation is essential and the rotation should also include sources of each herb. Herbs and spices show natural variation and thus the wider the sources, the more likely that it will contain some variation of chemicals to further challenge this bacteria.

Rifaximin is effective at the moment, but there is great concern about it becoming resistant.

The experience with Rifaximin and IBS indicates that it is only a part of the dysfunctional microbiome. The vaccine and herb mixture likely was effective across a wider spectrum of bacteria than Rifaximin, hence the greater impact they have.