Currently there are no nationally-approved drug treatments in any country for chronic fatigue syndrome (ME/CFS), except in Argentina, where Ampligen is approved. A few specialist doctors have their own ME/CFS treatment protocols; patients who cannot find such specialists must work with their own doctors to seek treatment for their individual symptoms. Many ME/CFS patients experiment on their own.
Bear in mind that chronic fatigue syndrome treatments which work for one patient may not work for another. Chronic fatigue syndrome presents in different ways in different people, and some scientists suspect that ME/CFS may be several diseases that for now are placed under a single diagnostic umbrella.
Please note that all of the information compiled in these pages has been compiled by laypeople.
Chronic Fatigue Syndrome Treatment Protocols
Although there are no nationally-approved drug therapies in most countries, some chronic fatigue syndrome doctors have experimented with their own treatment protocols, and anecdotally some patients report success on these. ME/CFS specialists such Dr John Chia, Dr Martin Lerner, Kent Holtorf and others have all developed their own chronic fatigue syndrome treatments.
Treatment Protocol Articles:
Phoenix Rising Forum Thread:
Roadmap for Chronic Fatigue Syndrome Testing and Treatment
A Phoenix Rising forum member (“Hip”) created a comprehensive roadmap to help patients determine (1) whether they have ME/CFS, and if so, (2) which lab tests can be performed to identify the infections and other possible factors that underpin their ME/CFS, and (3) what treatments they can follow to address these infections and factors, and treat the symptoms that arise from them. The treatment protocols detailed in the roadmap are those generally employed by leading ME/CFS doctors, and those which are backed up by published studies.
The roadmap also includes a list of testing laboratories and clinicians in various countries, and links for sourcing pharmaceutical drugs and cheap supplements.
Please note that all the information in the roadmap has been compiled by a layperson.
The Doctor Visit!
The visit to a doctor is one of the more problematic areas of chronic fatigue syndrome. It’s often a time of high drama; your health has fallen apart and you want answers. Many physicians, on the other hand — hit with a barrage of symptoms they don’t understand — simply don’t have any answers. Often the doctor does not know much about chronic fatigue syndrome. At this point a frustrated and scared chronic fatigue syndrome patient meets frustrated and confused physician. The stage is set for problems.
The pages below explore ways to make this relationship as empowering as possible; they include tips on how to find a knowledgeable physician, recognizing one when you have one and how to make your visit easier on you and on her/him.
Doctor Visit Articles:
- Finding a Chronic Fatigue Syndrome (ME/CFS) Doctor
- Preparation: Getting Ready For the Visit
- Dr Berne’s Chronic Fatigue Syndrome Symptom Checklist
Treating Sleep Symptoms
Chronic fatigue syndrome doctors appear to be in universal agreement of the importance of getting as good a night’s sleep as possible. Dr Bested simply says “Restoring sleep is essential for improving your health.
Dr Bateman, Dr Bested, Dr Klimas and Dr Teitelbaum all agree that sleep is the first symptom they treat. Dr Bested points out that “improving sleep, even a little, can make a tremendous difference to a person’s quality of life” and emphasizes: “you need to do everything possible to encourage your body to get the best sleep it can every night.”
“The most effective way to eliminate fatigue and pain in CFS/FMS is to get eight to nine hours of solid, deep sleep each night on a regular basis.” Dr Teitelbaum
Many of the problems associated with chronic fatigue syndrome such as body pain, fatigue, depression, irritability, headache and gastrointestinal problems are classic symptoms of sleep deprivation. We know that chronic fatigue syndrome is not simply a sleep disorder — it’s far more complex than that – but it’s also clear that many ME/CFS symptoms are exacerbated by poor sleep.
Studies have shown that a few nights of poor sleep result in increased sensitivity to pain and increased fatigue – two key elements of CFS and FM. This suggests that poor sleep could set the stage for both disorders.
Studies also suggest that to 20% of chronic fatigue syndrome patients may not have ME/CFS at all but an identifiable and treatable sleep disorder that could be uncovered during the proper testing (that is, a ‘sleep study’).
- Sleep hygiene
- Prescriptions for sleep
- Alternative therapies
- Sleep apnea
- Doing a sleep study
- Sleep resources
Read the Phoenix Rising Sleep Forum:
Treating Lack of Energy
How to increase energy in chronic fatigue syndrome is, of course, the 50 million dollar question. Dr Lerner has evidence that every one of the other symptoms in chronic fatigue syndrome improves when patients’ energy levels improve; energy, or the lack of it, appears to be a key factor in this disorder.
None of the chronic fatigue syndrome treatments in this section purport to return ME/CFS patients to their former energy levels. What they may be able to do – in some patients – is increase them.
Fighting fatigue is not simple or one-dimensional and its causes in chronic fatigue syndrome (and elsewhere) are still a mystery. Given the range of possibilities it’s not surprising that the different treatments described below attack different problems. While the stimulants, for instance, aid the brain in more effectively utilizing the information presented to it, many of the alternative treatments focus on one or another aspect of mitochondrial functioning.
Other approaches (not described below) involve getting better sleep, staying within one’s energy envelope and slowly enlarging it, tackling diet, enhancing blood volume, retraining the mind to avoid stressful thoughts and feelings that deplete an already overworked stress-response system; each of these has been effective in different patients. Battling ME/CFS effectively usually requires using a multi-dimensional treatment approach under the guidance of a qualified medical professional.
To check out cellular energy boosters and pharmaceutical drugs against fatigue click on the links below.
Energy Booster Articles:
- Cellular Energy Boosters (such as gluthathione, methylation, Coq10, 5-HTP, D-Ribose, DHEA)
- Pharmaceuticals for Energy (such as Ritalin, Adderall, Dexedrine)
Treating Orthostatic Intolerance in ME/CFS
Orthostatic intolerance (OI) is the inability to be vertical — sitting in a chair, or standing — without developing upleasant symptoms that improve when you lie down.
Survey data is limited but suggest that the vast majority of people with chronic fatigue syndrome have orthostatic intolerance. However, many aren’t aware of it because testing isn’t done as standard, the symptoms can be hard to differentiate from other ME/CFS symptoms, and OI is much misunderstood, even among clinicians.
The simple act of rising from lying down or sitting requires a complex set of interactions involving the autonomic nervous system, blood vessels, muscle and heart to work smoothly to keep the blood from draining from out of our upper body into our lower body.
If this goes wrong, as it does in OI, not enough blood gets to the brain and the heart, and this produces symptoms. Some people feel lightheaded or dizzy or even faint immediately on standing, for example, but — importantly — others don’t. This latter group may take much longer — perhaps half an hour or more — to develop OI symptoms, but even then, may have other symptoms that force them to lie down before they feel lightheaded.
Broadly speaking, the first group have POTS (postural orthostatic tachycardia syndrome), in which standing causes an immediate, large increase in heartrate as the heart struggles to keep blood flowing to the brain and upper body; and the second group have NHM (neurally mediated hypotension), in which blood pressure drops after being upright for prolonged periods.
Dr Natelson, an ME/CFS specialist, has identified a ‘Postural Orthostatic Syndrome of Hyperventilation’ in ME/CFS patients.
OI is so common in ME/CFS that every patient ought to consider seriously whether they have it. The following pages provide more information.
Orthostatic Intolerance Articles:
Read the Phoenix Rising OI Forum:
Antiviral, Antibiotic and Immunomodulator Treatments
The role pathogens play in ME/CFS is controversial. Although the disease is often triggered by an infection, some researchers believe the triggering infection is simply the last stressor that tipped the patient over into disease.
Other researchers believe that ongoing chronic active infections involving certain herpesviruses (namely Epstein-Barr virus, cytomegalovirus, HHV-6, varicella zoster virus), certain enteroviruses (namely Coxsackie B virus and echovirus), parvovirus B19, Chlamydia pneumoniae and others are playing a major role in maintaining the disease.
Still others believe that endocrine and immune dysfunctions caused early in the disease set the stage for latent viruses to reactivate themselves. While these viruses may or may not cause ME/CFS, they could exacerbate its symptoms greatly.
Given the wide variety of ME/CFS patients it’s possible that all the above scenarios are correct, but for different patients.
Several doctors regularly use antiviral and immunomodulatory drugs or supplements in their practices. The distinction isn’t always clearcut: some antiviral and antibiotic drugs have immunomodulatory properties.
Some drugs have worked very well for some patients, somewhat well in others, and not at all in others. Few studies of the effectiveness of these drugs, however, have been done.
Antiviral, Antibiotic and Immunomodulator Articles:
Read the Antivirals, Antibiotics and Immunomodulators Forum:
Methylation Protocol Treatment for ME/CFS
Dr Rich Van Konynenburg believed that insufficient methylation is a factor behind chronic fatigue syndrome, and suggested a boosting methylation using a supplement regimen based on the treatment program originally developed by Dr Amy Yasko for autism.
Defects in the body’s methylation cycle due to mutations in the MTHFR gene can lead to poor methylation, which in turn can result in a shortage of the important intracellular antioxidant glutathione, and a shortage of L-methylfolate (the biologically active form of folate). The methylation protocol treatment is aimed at boosting methylation, to try to compensate for these defects in the methylation cycle.
- Glutathione and the Methylation Cycle
- Revised Simplified Methylation Protocol (last revision of the protocol)
Read the Methylation, B12, Glutathione, Detox and Chelation Forum:
Some studies show that in the year leading up to patients first being hit with ME/CFS, it’s not uncommon to have experienced major chronic stress. But a stress connection to ME/CFS does not automatically imply the disease is psychogenic (as some psychiatrists would have us believe): chronic stress is known to be immunosuppressive, and given ME/CFS usually begins with a viral infection, catching a virus during a period of stress might conceivably leave the body more vulnerable to the infection. In any case, chronic stress may be a risk factor for ME/CFS.
More controversial is the idea that after the stressful period is over, persisting “locked in” stress and other mental factors maintain the ME/CFS state. Such unproven ideas are highly disputed, not least because these “all in the mind” psychogenic views of ME/CFS have led many medical practitioners to reject the idea that ME/CFS is a biologically-caused disease. Indeed, much of ME/CFS patient activism is directed at countering the “all in the mind” view of ME/CFS.
Nevertheless some ME/CFS patients like to explore whether mind/body treatments such as meditation, breathing techniques, Ashok Gupta’s Amygdala Retraining, Dan Neuffer’s ANS Rewire, Annie Hopper’s DNRS, Reverse Therapy and the like could help.
Preparing for Surgery – Anesthesia Warning
General anesthesia can have debilitating effects on some people with chronic fatigue syndrome. In general patients are recommended to avoid general anesthesia when possible. Several doctors have produced documents outlining their recommendations for anesthesia and the New Jersey CFS Association has produced a card you can download and print out. (Laminating the card appears to give the recommendations more heft with hospital personnel.)
Anesthesia Warning Info:
- New Jersey CFS Association Anesthesia Warning Card
- Dr Lapp’s Recommendations for Patients Prior to Surgery
- Dr Cheney’s Anesthesia Recommendations