Medication

Because of the impairment to the liver detoxification pathways (6 have been identified by biochemist Martin Pall to be common to people with MCS) and the level of “sensitizations” peripheral (e.g. nociceptor sensory nerves) and central to areas of the brain involved in maintaining your survival and processing your emotional and physical pain e.g. limbic region, amygdala, thalamus, etc. that have occurred due to ongoing toxicity, inflammation and stress (TIS), most medications simply increase symptoms or if benefits are gained they are generally at the expense of side effects.

For this reasons most doctors who have a good understanding of MCS and provide treatment (there are not many!) Prefer to take a multi-dimensional “self management” approach based on dietary changes and chemical, stimuli and stress minimization (as promoted by RESHAPE – coming soon to MCSLIVING).

Having said this however, there are some instances where medications are warranted (e.g. if they are life saving) and some that are providing benefits for some people with MCS e.g. Gabapentin (Neurontin) Pregabalin (Lyrica). NNT for these are around 4 which means for every 4 people treated with these medications 1 person will get real improvements of 50% or more whilst the others will get no improvements (or side effects) or short term improvements only due to the placebo effect. The NNH of the these medications is also around 4 which means 25% of people whot take these medications will experience side effects (NNT and NNH are explained further below).

If you choose to take medication be sure to start on a low dose and increase (titrate) slowly under medical supervision as advised for people with Chronic Fatigue Syndrome (CFS) by the Centers of Disease Prevention and Control.

The Centre of Disease Control Says...
"Many CFS patients are sensitive to medications, particularly sedating medications. Therapeutic benefits can often be achieved at lower than normal dosages, so try prescribing a fraction of the usual recommended dose to start and gradually increase as necessary and as tolerated. All medications can cause side effects, which may lead to new symptoms or exacerbate existing symptoms, so it is important to routinely monitor all prescription drugs, OTC therapies and supplements the patient is taking."?
www.cdc.gov/cfs/cfstreatmentHCP.htm#pharmacologica

To help you or your health advocate (a trusted friend, family member or other who can act on your behalf at times your memory, concentration and decision making is impaired or compromised ) make an informed decision about medications ask your doctor for the NNT and NNH of any medications they may suggest.

the following is from the Freemantle Hospital Pain Medicine Unit

Medications:
How effective are drugs for pain?
One assessment measure is the Number of patients Needed to Treat (NNT) in order for one patient to have a reduction of their pain by half (50%) compared to placebo (eg. a sugar tablet). An NNT of 2 means that one patient out of every two treated will get a reduction of pain by half (50%) compared to placebo. A NNT of 4 means that one patient out of every 4 patients treated for a similar pain condition will achieve 50% or more pain relief compared with a placebo (sugar tablet) and so on.

How harmful are the same drugs?
Here we use Number Needed to Harm (NNH). An NNH of 2 means that half of the people taking the medication will experience a side effect, compared to placebo (sugar tablet), because of the medication.

It is important to know that all treatments come with a Placebo (“I will please”) effect. This means that at least some of those being treated will improve, even when given an inert substance.

Medications and other to avoid if you have salicylate intolerance - which seem to be common in people with MCS

    • Cough lollies, syrups and medications, mouthwash or inhalations that contain menthol, mint, camphor, eucalyptus or tea tree oil. These may make you feel better but can be powerful irritants for individuals with allergy, food and chemical sensitivities.
    • Pain relieving medications to avoid are aspirin, natural herbal pain relieving compounds, non-steroid anti-inflammatory agents (Advil, Nurofen, Voltaren).
    • Avoid liquid paracetamol preparations as they are coloured and/or flavoured and should not be given if tolerance to them has not been tested.
    • Antioxidants, multivitamins and other nutritional products with preservatives, flavourings, colourings, bioflavonoids, herbs, rutin, kelp or hesperidin.
    • Refer guide: Medications for use with a Low Phenolic Diet at www.asehaqld.org.au. For a list of medications etc that may be tolerated see Low salicylate Medications: Medications listed as suitable for those with salicylate and amine (Phenolic) sensitivities by the Royal Prince Alfred Hospital Allergy Clinic.