filgotinib for ME/CFS and RA

A reader asked about this. It is a new drug waiting for approval in the EU. On a Spanish group, it is asserted that:

“This is very encouraging news for patients with ME/CFS, as this drug could show very promising results in this ailment. Specifically, this drug decreases levels of inflammatory cytokines, which are believed to be the main cause of symptoms.”

Unfortunately, there have not been a single study for ME/CFS and this statement is very speculative (in my days, I have seen literally dozens of similar claims which consistently under-delivered or caused additional problems). Wikipedia gives a good summary of what it is and its issues.

The most applicable study is shown below.

Bottom Line

Treatments for Rheumatoid Arthritis have often been tried and used for a subset of ME/CFS. Results were generally mixed. The goal should not be “decreases levels of inflammatory cytokines” but stopping the source of inflammatory cytokines. I believe the dominant source of inflammatory cytokines is a microbiome dysfunction.

You do not want to keep painting the walls to cover up water stains from a leaking roof; you want to fix the roof first.

HHV, Mycoplasma and Microbiome

A reader asked about what we know. They were looking for food for a child that may inhibit these by inhibiting the bacteria that provides them with the metabolites to flourish. These two have a high prevalence with ME/CFS.

We need to be aware that there may be a ‘mafia family’ in operation, for example: “HIV also acts synergistically with multiple other viruses, such as HPV, EBV, varicella zoster virus (VZV), and HHV-8. ” [2019]

Unfortunately available literature on PubMed contains few human studies.

  • Lower  Prevotella,Mycoplasma pneumoniae, Staphylococcus epidermidis, and Staphylococcus aureus  [2019]
An integrated respiratory microbial gene catalogue to better understand the microbial aetiology of Mycoplasma pneumoniae pneumonia [2019]

The reader had uploaded a microbiome from Thryve and I wanted to see how severe mycoplasma was:

The sample of concern placed them at the 8th percentile (very low). So mycoplasma is unlikely to the cause. 70% of Thryve reports had this group.

My intent was to see if there were any statistically significant association with other bacteria (friend or foe analysis).

Drilling down to the species level, we find that he numbers were not abnormal (below average but at median)

Concerning HHV virus — that is outside of the scope of my analysis site. There is no published literature to work from. I do have a personal belief that HHV and other virus reactivation is a side effect of microbiome dysfunction. Yes, some antivirals help — but those same antivirals also alter the microbiome leaving these antiviral mechanism of action unclear.

Returning to the person

  • The reader child “he still have learning disabilities”. I looked at Naive Predicted Symptoms with their microbiome and with a score of 1.0 (highest), we have these predicted that match this description (25 possible of 5200 pairs possible). HHV6 and Mycoplasma were included in the symptom list! (this does not mean the child has them — rather that people who were told or believed they had them; self reporting and not a lab test)
What is identified

I proceeded to pick the bacteria (clicking the checkboxes above) that matched these symptoms and built a custom profile. The result was that many bacteria recurred in different combinations, so we ended up with just 9.

Running it through the suggestions machine learning we got:

As often happens — some probiotics are good and other bad. A “good probiotic mixture” is often the wrong thing to take.
The recommended probiotics,,,

Bottom Line

The above are suggestions from a machine learning algorithm. They should be reviewed and discussed with your medical professional before starting.

The goal was to modify diet to help with the symptoms. We were not able to find anything based on the presumed cause in conventional medical literature. We were able to identify some specific bacteria shifts that corresponded to reported symptoms and get diet suggestions from those.

Wifi and Cell Signal impact on immune system

This is an area that people will often block out — they are not willing to give up wifi or cell phones — regardless of health risks. There are people that associate(blame) the use of cell phones on increasing autism, irritable bowel syndrome and many other conditions. It is actually impossible to do solid valid studies that would confirm or debunk these theories. Why? because you cannot find a matched control group!

We do know somethings — that it does impact the microbiome.

Cell phones and electronic appliances and devices are inseparable from most people in modern society and the electromagnetic field (EMF) from the devices is a potential health threat. Although the direct health effect of a cell phone and its radiofrequency (RF) EMF to human is still elusive, the effect to unicellular organisms is rather apparent. Human microbiota, including skin microbiota, has been linked to a very significant role in the health of a host human body…. These findings led us to hypothesize that cell phone level RF-EMF disrupts human skin microbiota.

The Response of Human Bacteria to Static Magnetic Field and Radiofrequency Electromagnetic Field [2017]

” For instance, the issue of so-called non-thermal effects and potential long-term effects of low-dose exposure were scarcely investigated prior to the introduction of these technologies. Common electromagnetic field or EMF sources: Radio-frequency radiation (RF) (3 MHz to 300 GHz) is emitted from radio and TV broadcast antennas, Wi-Fi access points, routers, and clients (e.g. smartphones, tablets), cordless and mobile phones including their base stations, and Bluetooth devices. Extremely low frequency electric (ELF EF) and magnetic fields (ELF MF) (3 Hz to 3 kHz) are emitted from electrical wiring, lamps, and appliances. Very low frequency electric (VLF EF) and magnetic fields (VLF MF) (3 kHz to 3 MHz) are emitted, due to harmonic voltage and current distortions, from electrical wiring, lamps (e.g. compact fluorescent lamps), and electronic devices. On the one hand, there is strong evidence that long-term exposure to certain EMFs is a risk factor for diseases such as certain cancers, Alzheimer’s disease, and male infertility. On the other hand, the emerging electromagnetic hypersensitivity (EHS) is more and more recognized by health authorities, disability administrators and case workers, politicians, as well as courts of law.”

EUROPAEM EMF Guideline 2016 for the Prevention, Diagnosis and Treatment of EMF-related Health Problems and Illnesses [2016]

Bottom Line

We try to have most internet connections to be wired. For example, Smart TV and Roku are all using wired. Unfortunately, tablets do not have that as an option — so we tend to turn wifi on and off when needed. We turn off cell-data when we are at home. Using Wifi sniffers, we typically see only our own devices (we have a good distance from neighbors) compare to 50 or more devices seen in town/city.

We know the EMF impacts bacteria/microbiome. The consequences of this impact is unknown. A wise approach may be simple:

  • Turn off devices when not in use/really needed
  • Use wired connection over wireless
  • If possible, move to lower population density (ideally, rural)
  • Be aware of location of cell towers when you move. You want to maximize the distance
  • Maximize distance from all screens….

Vasodilation – Supplements

Vasodilation means opening up or dilatation of blood vessels, which will often decreases blood pressure. I put together a list of supplements (with links to PubMed studies) that reduces blood pressure in a September 2019 post. An item that reduces blood pressure does not always mean that it does vasodilation. Some migraines and headaches are improved by vasodilation

In this post I will review these and other supplements that dilation of blood pressures.

And so on, almost every item that reduces blood pressure also induces vasodilation (not really much of a surprise).

Complex Interactions

  • Calcium “The influx of calcium into vascular smooth muscle initiates contraction by binding to” [1983]

Pycnogenol and Allergies/Mast Cells

A reader asked about this, which I have no covered yet. Increased allergies and mast cell issues often occur with microbiome dysfunction and chronic fatigue syndrome.

Bottom Line

The research to date suggests that it may take 2 or more months before significant benefits may be seen in some cases.