Sulforaphane
Sulforaphane is a compound found in high doses within cruciferous vegetables, most notably broccoli sprouts.
Sulforaphane may benefit ME patients due to:
- Being an antioxidant
- Being Neuroprotective
- Improving mitochondrial function
- Protecting against oxidative stress
Sulforaphane is currently being studied to see if it can reduce the bodies Th2 response. Th2 is typically thought to be high in ME patients and a common aim is to shift this part of the immune system to Th1.
A study published in late 2014 that was widely dispersed in the media found that sulforaphane benefitted children with autism. The study authors theorised that it benefited patients by inducing a “fever effect.” It should be noted that this was a fairly small study involving 44 males between the ages of 13 and 27.
There is quite a discrepancy regarding the amount of sulforaphane absorbed into the body depending on the form of sulforaphane or specific broccoli extract brand. Many autism patients have avoided broccoli sprout extracts instead favouring actual broccoli sprouts. This autism forum discusses the best manner to absorb sulforaphane and what dosage is most appropriate. Both of these topics are the subject of quite some conjecture.
My Experience
I started taking broccoli extract capsules on the 7th of January 2015 and gradually increased the dosage to 2.8 grams. I used a product that claims to be bioactive. In total I trialled this treatment for three weeks. The main symptom I noticed whilst on this treatment was intermittently feeling fairly warm. I am uncertain whether this was indeed the “fever effect” mentioned by the autism study authors or due to some other mechanism. I didn’t notice any other significant positive or negative effects as a result of taking the sulforaphane.
Nicotine Gum
Studies have shown that nicotine inhibits brain inflammation and it is thus considered to be neuroprotective. Nicotine treatment is used by some of those with ulcerative colitis, an autoimmune inflammatory bowel disease. In contrast nicotine is often detrimental to those with Crohn’s disease, another inflammatory bowel disease. Schizophrenics commonly smoke cigarettes for a variety of reasons and it is theorised that the nicotine may alleviate some of their symptoms. Sensory gating is the brains ability to reduce sensory information. This problem is common amongst schizophrenics and nicotine may target this problem It has been thought that sensory gating may also affect ME patients.
Former ME/CFS specialist Dr. Goldstein writes
“Nicotine Patch or Gum: I have been prescribing nicotine in these forms for a long time. Nicotine is analgesic, probably by virtue of its stimulating secretion of dopamine and norepinephrine. It binds to the nicotinic cholinergic receptor and can also have profound effects on mood, energy, and cognition. An occasional patient will have worsening of symptoms with nicotine.”
Anecdotally, several patients online have reported an improvement in cognition as a result of taking nicotine. Other patients have reported feeling an increase in energy as a result of this treatment. Generally patients have noticed any effects of nicotine soon after taking it however one patient took nicotine for one week before being gifted more energy.
The risks involved with this treatment include nicotine’s ability to raise blood pressure, however low blood pressure is generally more predominant in ME than high blood pressure. Another danger of nicotine is its tendency to be addictive. Long term nicotine use may lead to periodontal problems and potentially hair loss. One ME patient reported vomiting almost instantaneously after taking nicotine. It is imperative to speak to your physician if you plan to commence nicotine treatment and to be aware of any further risks. Also starting nicotine at a low dose is of great importance.
My Experience
I began taking 1mg of nicotine gum on the 30th of January 2015. Within a few minutes, I began to feel spaced out and a bit strange. My cognitive impairment may have slightly improved although I felt a bit distant. Most treatments I trial don’t give me any effects. My reaction to nicotine involved a peculiar sensation that occurred almost instantaneously after chewing the gum. My family described me as acting a tiny bit “buzzy” as a result of taking the nicotine. After a few hours, my experience began to normalise. I took 1mg of nicotine each day for three days in total and by the third day didn’t notice any weird sensations or other effects. I decided to cease the nicotine gum usage after three days due to the lack of positive effects and aforementioned potential long-term use side effects.
Curcumin
Curcumin is a primary ingredient in turmeric that is often used medicinally in extract form. It is generally poorly absorbed by the body.
Curcumin may benefit ME patients as it may:
- Improve HPA axis dysfunction
- Have anti-inflammatory and anti-oxidant properties
- Improve cognitive impairment.
A study also found that curcumin benefited mice with ‘CFS.’ The mice were subjected to regular 10 minute water immersion tests to induce fatigue. I should note my scepticism of these mice having “induced CFS.” The fatigued mice consuming curcumin experienced less pain, reduced fatigue and lower levels of oxidative stress
Anecdotally, Dr. De Meirleir has in the past recommended curcumin to certain patients in combination with other treatments. Curcumin supplementation is generally low in side effects.
My Experience
I began taking curcumin capsules on the 13th of November. I started a version of curcumin that supposedly crosses the blood brain barrier more effectively than standard curcumin. The brand also claims 65 times the bioavailability of generic curcumin. I began with 400mg and increased my dosage to 800mg. After a total of four weeks of taking the curcumin capsules, I failed to notice any positive or negative effects.
Vagus nerve stimulation
Vagus nerve stimulation (VNS) is primarily associated with treating epilepsy and treatment-resistant depression. It has also been linked to dozens of other conditions including MS and autism. Some theorise that the vagus nerve is directly linked to ME. This article explains a vagus nerve/ME theory in more detail.
There are multiple mechanisms to stimulate the vagus nerve. This study implanted fibromyalgia patients with a vagus nerve stimulation device and found that it may be a “useful adjunct treatment” for fibromyalgia. This procedure is quite invasive hence I was excited to read about a VNS method that involved a TENS machine. In essence, the TENS electrode is attached to the tragus part of the ear. This study found that TENS machine vagus nerve stimulation “can influence human physiology and provide a simple and inexpensive alternative to invasive VNS.”
My Experience
I was keen to test the TENS machine for VNS as it was an ulterior treatment method that didn’t involve swallowing pills. I trialled this treatment for two months but failed to notice any positive or negative side effects. I attempted to order the TENS clips used in the above study but instead could only order small TENS pads which I consider to be analogous.
