Conventional Medicine

Details

Last Updated: 02 March 2016 02 March 2016

Written in 2009. For additional information that includes newer medications as of 2015, see More resources.

Important notice: Please note that the information on Treatment provided here has been compiled by patients for patients, and represents a summary of what patients may have experienced in working with their individual health care providers. The information in this website is not a substitute for professional medical advice. Please consult with your physician or other healthcare provider in matters pertaining to your medical care. See our full Medical Disclaimer.

Health Care Providers: Please see the information in ME/CFS: A Primer for Clinical Practitioners.

It is important to take extra steps to avoid medication interactions or errors, like being sure that the risks and benefits, side-effects and proper use of medications are reviewed and understood by the patient before leaving the visit. All doctors and healthcare providers should be told which medications and supplements are being used, in order to prevent interactions. 

One serious and potentially life-threatening interaction is called, Serotonin Syndrome, which can happen if too many products are combined that increase serotonin levels.

Some foods and beverages can affect how some medications work, so medications should usually be taken with water (unless otherwise instructed). 

And when picking up prescriptions from the pharmacy, it is a good idea to double-check them while at the counter to see if they are the right medication and in the right amount

Sleep Disorder

Inability to fall asleep, stay asleep and/or experiencing other disruptions during sleep are just a few of the types of sleep problems experienced by patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and Fibromyalgia (FM). One of the most serious disruptions that warrants sleep study and special intervention is sleep apnea. 

Periodic limb movement, unusual sensations, and/or restless legs syndrome (RLS) are other problems that can disrupt sleep and are treated with specific medications that affect dopamine release. Due to the complexity of these distinct disorders, they are not included under general sleep aids and medications.

Some simple things that patients can try on their own (or with the help of a sleep specialist) are to develop good sleep hygiene habits—like avoiding caffeine late in the day, going to bed and getting up around the same time each day, keeping the room comfortably cool, and using the bed primarily for sleep.

Some find having a small snack of bananas, warm milk, oatmeal or whole-wheat toast with a little honey will help to relax them for sleep because of the tryptophan or other soothing brain chemicals that are released by these foods. There are several herbal products that can be used to help with sleep and relaxation—please refer to our Supplements section.

Several over the counter products, like Benadryl (diphenhydramine hydrochloride) or Unisom (doxylamine) are occasionally used because as antihistamines that cross the blood/brain barrier, they tend to make people drowsy/sleepy.

These are found to be more effective for occasional use rather than long-term use because sedating effects will start to decrease. The most common treatments to help with sleep will be medications (often more than one) that help to initiate sleep and promote deeper sleep (stages 3 and 4). There are four primary groups of medications which are used for their specific effects, such as:

• Antidepressants—often the first line of treatment prescribed will be one of tricyclic antidepressants and a few examples of these are Elavil (amitriptyline), Norpramin (desipramine), and Sinequan (doxepin). The latter is often prescribed in liquid form at a very low dose (only a few drops) along with another medication. As the primary sleep medication starts to wear off, doxepin helps to keep patients asleep longer mainly by its ability to block histamine. Another group of antidepressants, classified as 5-HT receptor antagonists, may also be prescribed, like Desyrel (trazodone) or Remeron (mirtazapine). These belong to the triptans, a family of medications that include migraine treatments. Generally, antidepressants are used to take advantage of certain neurochemical changes they can provide to help with sleep (aside from how they work for depression). Dosage for sleep is usually lower than for treatment of depression. Due to a frequent lower threshold of dosage tolerance, physicians may start a prescription at a lower dosage in order to find the right level to induce sleep.
  
  
• Benzodiazepines—these are central nervous system suppressants and are used for their overall sedating or muscle relaxing properties and may include Xanax (alprazolam), Ativan (lorazepam) and Valium (diazepam). Klonopin (clonazepam) is one of the more frequently prescribed medications from this group because it also has anticonvulsant properties. Klonopin works by balancing the firing of certain neurons and thereby, helping to reduce sensory overload. It also has been found to relieve myoclonus (sudden jerking while sleeping) in many patients. If or when it needs to be discontinued, this should be done slowly by tapering the dose down over several weeks (or as determined by prescribing physician).
  
  
• Non-benzodiazepine agents—these are the newer formulations which are described as shorter-acting hypnotic sleep aids and some of these are Ambien (zolpidem), Sonata (zaleplon), and Lunesta (eszopiclone). Though these are promoted as medications that can be taken with less concern about duration of use or dependence, some can still cause very unusual side effects. One in particular has been Ambien which has been found to cause sleep-walking and amnesia in some individuals.
  
  
• Muscle relaxants—this line of medication may be prescribed for night-time use, as these are usually quite sedating and can provide some level of pain relief. A few of the most commonly used products are Flexeril (cyclobenzaprine) and Soma (carisprodol).
  
  
• Xyrem (a sleep agent derived from gamma-hydroxybutyrate (GHB) and already used in treatment of daytime sleepiness in narcolepsy) is occasionally prescribed for sleep. It is a very potent/aggressive type of sleep agent and one must work with a doctor who has good knowledge and experience with it. It is currently being studied for FM pain and daytime symptoms.

Pain

Pain is a major symptom in both FM and ME/CFS, although many don't initially think of ME/CFS as illnesses with pain. Since patients experience many types of pain—such as muscle aches and spasms, fatigue pain in muscles from lactic acid build-up, myofascial pain, multiple joint pain, neuropathy, and headaches, including migraines—therefore, pain is often treated with a combination of medications and/or therapies.

Many patients find they have a hard time getting adequate treatment of their pain and are often met with resistance by their doctors—in particular, primary care physicians. This is often due to not understanding how to use certain medications, misconceptions about dependence versus addiction and/or efforts to avoid scrutiny by regulatory agencies. 

It may become necessary for patients to seek out doctors who specialize in treating pain, possibly rheumatologists or physiatrists (specialists in physical medicine and rehabilitation) and/or pain management. There are clinics/centers dedicated to pain management which operate as small private practices or as pain management clinics within hospitals.

Home remedies can include use of ice or heat packs. Ice packs help to reduce swelling and slow down the nerve impulses to a localized area of pain, while heat packs help to increase blood flow to a localized area of pain and ease stiffness. The most commonly prescribed treatments are listed below, while it is understood many other medications/ protocols are being used.

• Over the Counter (OTC) pain relievers—Tylenol (an analgesic using acetaminophen as its active ingredient), Motrin or Advil (nonsteroidal anti-inflammatories that use ibuprofen, as an active ingredient, to reduce pain and inflammation), and/or Aspirin (from a group of drugs called salicylates) which is used to relieve pain and inflammation, but also to treat cardiovascular conditions in some patients. Be careful about checking warnings on each product and observing daily recommended limits, especially for acetaminophen as it may cause liver damage when used at high doses or by someone with abnormal liver function. Also, be aware some of these pain relievers, like acetaminophen, are added to multi-symptom cold formulas and prescription narcotic pain medications.   
  
  
• Topical pain relievers (OTC)—creams and ointments with active ingredients such as camphor, menthol or other oils (like eucalyptus) and /or methyl salicylate which help to reduce localized pain. A few OTC creams contain capsaicin (like Zostrix) which, with repeated applications, is supposed to lower Substance P (a neurotransmitter for pain). The active ingredients in these products still get absorbed into the body and it is possible to use too much.
  
  
• Topical products, by prescription—compounding pharmacies can prepare creams with a variety of medications in them, like anti-inflammatory or anesthetic agents. Lidoderm are transdermal patches which contain lidocaine and used on sites of localized pain.
  
  
• NSAIDS (nonsteroidal anti-inflammatories) by prescription—Mobic (Meloxicam), Naprosyn (naproxen) and Celebrex (Celecoxib). These may cause considerable gastrointestinal upset and bleeding.
  
  
• Muscle relaxants—Zanaflex (tizanidine), Skelaxin (metaxalone), Lioresal (baclofen), and Soma (carisprodol) are the most common ones prescribed. They are used to relieve muscle spasm pain and stiffness, but each works in a slightly different way.
  
  
• GABA (gamma aminobutyric acid) inhibitors—these are medications which change the firing of certain nerve cells in the brain and were initially prescribed to control seizures. Neurontin (gabapentin) was the first such medication used for ME/CFS and FM to help treat neuropathy (nerve pain) while Lyrica (pregabalin), a derivative of gabapentin and manufactured by the same company, was recently approved specifically for FM pain. Lyrica seems to work well for some patients, while others experience too many troublesome side effects, including weight gain. The standard, recommended dosage has been found somewhat too high for many FM patients. Another drug used to control seizures in Europe, Lacosamide, is currently in US clinical trials as another treatment of pain in FM (estimated market date is around 2011). Its mechanism is considerably different from Neurontin and Lyrica by working on the hyperactivity of certain neurons, thus being able to raise the pain threshold, and possibly, without weight gain or sedation.
  
  
• Antidepressants—some of the same antidepressants prescribed to promote sleep have been found to reduce pain in some patients. One of the newer antidepressants, Cymbalta (duloxetine), was recently approved for the treatment of pain in FM and it works by increasing activity of serotonin and norepinephrine, which are thought to affect amount of pain one can feel.
  
  
• Migraines—there are range of medications used to treat migraine headaches. One of the older formulas that might be prescribed is Midrin (isometheptene mucate, dichioraiphenazone, and acetaminophen) which consists of three ingredients—one works on blood vessels, another provides a mild sedative, and the third is a common pain reliever. A newer family of migraine medications is the "triptans" family which includes Imitrex (sumatriptan)—it comes in oral form, nasal spray and as subcutaneous injections. Other related medications are Zomig (zolmitriptan) or Relpax (eletriptan). Extra caution needs to be taken in anyone who has co-existing cardiac problems. It is essential to also understand triptans should not be combined with SSRIs (or other medications that alter serotonin) which according to recent FDA alert can lead to Serotonin Syndrome. Another treatment approach is to try and prevent migraines with the use of beta-blockers (like Inderal) or calcium-channel blockers—verapamil, in particular (which has been studied as an effective prophylaxis of migraines). Other medications used to prevent migraines are some of the anti-seizure medications such as Topamax (topiramate).
  
  
• Non-narcotic pain relievers—Ultram (tramadol) or Ultracet (tramadol with acetaminophen). This medication is considered a cousin of the narcotic family and binds to certain opioid pain receptors and affects the re-uptake of norepinephrine and serotonin. Seizures have been reported in some people using Ultram.
  
  
• Opioid Analgesics—used to relieve moderate to moderately severe pain. Examples of pain medications in this group are Vicodin (acetaminophen and hydrocodone), Tylenol #3 (acetaminophen with codeine), Darvocet-N (propoxyphene), Percocet or Percodan (short-lasting oxycodone with acetaminophen or aspirin), oxycontin (a longer lasting controlled time-released agent) and/or Duragesic (fentanyl transdermal system). Several important warnings need to be made about fentanyl patches and their safety, especially given the incidence of accidental overdose and even death from these. The active ingredient is a powerful, rapid-acting opioid which is absorbed through the skin via a sustained release system. Patches must be used exactly as prescribed, including placement which can affect drug absorption, and extra care should be taken not to damage nor cut them in any way because this could cause the opioid to leak and alter the dose received. Furthermore, numerous lots of fentanyl patches have been voluntarily recalled by different manufacturers due to defects which could cause an incorrect amount of medication to be released and absorbed. All of these aforementioned medications are "controlled substances". Some are classified as Schedule II medications which means patients will need a new prescription for each month that they will be using one of these medications. Methadone, also in this category of medicines, has been gaining more recognition as an option for pain relief and is prescribed in very small amounts by some leading FM specialists. Many of these medications could provide inexpensive, effective pain relief for a number of patients, but often they are not even able to try them. Many inaccuracies and myths surround this family of medications, like fears of patient addiction. The limiting of quantities, if or when they are prescribed, creates inadequate pain relief (as the effects of some last for only about four hours). Asking for better/ longer pain control is often viewed as drug-seeking behavior by the patient. A number of international ME/CFS and FM specialists recommend longer-acting, as opposed to shorter-acting, opioids in order to level off the up and down recurrence of pain.
  
  
• Dry needling and/or injections of trigger points—treatment primarily used in FM where patients' trigger points (points of knotted muscles from which pain often radiates) are isolated and either thin needles are inserted into these points/knots or they are injected with anesthetic agents. The goal is to reduce painful input to the central nervous system.

[N.B. The only solution to lactic acidosis pain is bed rest while your body breaks down the lactic acid.—Ed.]

Fatigue and cognitive function

Disrupted sleep or poor quality of sleep and pain in themselves contribute to fatigue and impaired cognitive function. The ability to study sleep patterns, but also other brain activity patterns, has helped researchers see other deficits in these illnesses.

Many clinicians working with ME/CFS and FM patients will prescribe medications which can increase alertness and concentration. On the other hand, some doctors don't support their use at all because they say increased firing of certain neurons, over time, may actually damage brain cells.

Therefore, patients and their physicians need to take into account the effect of their fatigue and difficulty with concentration on their daily functioning, ability to work and overall quality of life versus the risks of these types of medications. They should also consider alternative options as there are a variety of supplements used to help promote mitochondrial energy production—these are covered in the Supplements article and Mitochondrial Dysfunction, Post-exertional Malaise and ME/CFS.

Though antidepressants are usually prescribed to help with sleep and pain, some can also provide an energizing/activating effect and improve mental clarity. This is accomplished according to how certain neurotransmitters are inhibited or increased, especially by a group of medications called, selective serotonin reuptake inhibitors (SSRI's) which primarily increase serotonin to the nerves.

Some examples of commonly prescribed SSRIs include Prozac (fluoxetine), Paxil (paroxetine), Lexapro (escitalopram) and Zoloft (sertraline). Weight gain, sexual dysfunction, anxiety and/or sleep disturbance are some of the more frequently reported side effects of these medications. Patients should be closely monitored for worsening symptoms of depression or mood and/ or suicidal thoughts during first weeks of treatment.

One of the older medications used for its activating properties is Wellbutrin (bupropion)—it is defined as a norepinephrine and dopamine reuptake inhibitor and is chemically different from tricylic antidepressants and SSRIs. A higher incidence of seizures has been reported in some patients using Wellbutrin than with other antidepressants.

Another medication in its own class is Provigil (modifinil) originally intended to treat daytime sleepiness found in narcolepsy. It is used to help relieve MS-related fatigue and more recently, to improve mental clarity in ME/CFS and FM. Its mechanism differs from most other stimulants as it primarily targets the part of the brain which keeps people awake. It may disturb sleep in some patients, even though this medication is taken during the early part of the day. The FDA issued a warning in 2007 that Provigil has been linked to serious skin rashes and psychiatric symptoms (i.e. anxiety, mania, or hallucinations) and urged caution if used for patients with a history of psychosis, depression, or mania.

Other stimulating medications are borrowed from Attention Deficit Disorder (ADD), such as Ritalin (methylphenidate) or Cylert (pemoline). Straterra (atomoxetine) is also in this category but is found not to be as stimulating as the older formulas. While they might help some people with concentration, they can also negatively affect mood and raise blood pressure.  Sometimes amphetamines (like Adderall and Dexedrine) are prescribed to patients with ME/CFS and FM to improve concentration, even though initially these type of medications were used to suppress appetite, treat ADD and drowsiness in narcolepsy.

Other medical causes of fatigue

Two potential, underlying sources of fatigue may be an underactive thyroid and/or underactive adrenal glands. The thyroid gland in a number of individuals with ME/CFS and FM may either fail to produce sufficient amounts of thyroid hormones or their bodies make poor use of the hormones that are being produced. This, in turn, can cause fatigue, sluggishness, slowed metabolism and increased risk of iron and B12 deficiency. 

Some doctors will try to improve thyroid function by prescribing  Synthroid, but it is important to realize there are various treatment approaches and interpretations of thyroid tests.

About two-thirds of ME/CFS and FM patients are thought to have low adrenal function which can also cause fatigue, poor response to stress and predispose individuals to recurring infections. Some doctors will prescribe low-dose Cortef (hydrocortisone) to help support adrenal function, but others will regard this treatment as being controversial.

Doctors practicing holistic or integrative medicine may be more familiar and receptive to the newer treatment approaches as well as offer additional ways to help improve fatigue and energy production.  Some commonly used alternative products are reviewed in the Supplements article.

Mood disturbances/depression

SSRIs (as described under Fatigue and Cognitive Function above) are also prescribed to help stabilize mood and/or reduce depression. The newer formulas will target other neurotransmitters along with serotonin, like norepinephrine. These are categorized as selective serotonin and norepinephrine reuptake inhibitors (SNRIs), Norepinephrine Serotonin Reuptake Inhibitors (NSRIs) and those primarily adjusting norepinephrine release are referred to as norepinephrine reuptake inhibitors (NRIs). These neurotransmitters have been found to affect pain, sleep, fatigue, cognitive as well as mood disturbance; therefore, adjusting these may provide improvement of these symptoms.

One of the newest SNRIs on the market is Cymbalta (duloxetine). Cymbalta's initial use was to treat major depression and anxiety. It has other properties which help to relieve nerve pain as well as improve one's mood, sleep, energy level, and decrease nervousness and as a result, the FDA approved its use for FM. 

Effexor (venlafaxine) was one of the first SNRIs which came out in 1993. This type of medication (as well as some benzodiazepines and sleeping pills) can be very sensitive to sudden interruption of use and may produce "brain sparks /shivers" in some patients (described as electric shock-like sensations in their brain but also extending to parts of the body, sometimes along with feeling of disorientation, vertigo and/or lightheadedness). Therefore, when any of these types of medications need to be discontinued, they should be tapered off gradually.

Milnacipran is the first NSRI to come on the market and it is different from Cymbalta, an SNRI, and older SSRIs, since it affects norepinephrine and serotonin in a more equal/ balanced way. During clinical trials, it was found to cause fewer undesirable side effects (such as sexual dysfunction).

In January 2009, the FDA approved milnacipran for the management of FM,  which will be sold under the brand name of Savella. It is expected to be available by prescription around March 2009. Reboxetine is another drug being studied in patients with FM. It is an NRI and currently used outside the US as treatment of depression.

Cardiovascular and blood pressure irregularities

Autonomic nervous system (ANS) dysfunction can present as neurally-mediated hypotension (NMH) or orthostatic intolerance (OI), but there are several other related conditions that fall into this category. ANS-driven disorders are moderately common in people with ME/CFS and FM, including children and youth with ME/CFS, but are not limited to these illnesses.

Basically, one's blood pressure will have an abnormal response to change of position (while standing) and the cardiovascular system will have to work much harder to maintain blood pressure and blood flow to the brain. Florinef (fludrocortisone) was one of the first treatments used to treat NMH by helping the body retain salt. 

Over time, it was found to lose its effectiveness because of potassium depletion and because it was not felt to be a very beneficial treatment. Other treatments might include medications to increase blood volume, work on vasoconstriction, or stimulate release of certain neurotransmitters.

Cardiac involvement

Mitral valve prolapse (MVP), low cardiac output, and a distinct cardiac disorder called "diastolic cardiomyopathy" has been found in ME/CFS by one of the leading doctors, Dr. Paul Cheney, who has followed patients with this illness over the past two decades. "Diastolic cardiomyopathy" refers to the heart muscle's failure to relax and to not allow proper filling. It was noticed in most patients (though not all) with ME/CFS. This problem is undergoing more research and there no specific treatment recommendations at this time.

Studies by Dr. Lerner at the University of Michigan documented intermittent tachycardia in a very high percentage of 51 ME/CFS patients (1988 CDC definition for CFS). The tachycardia was accompanied by T-wave abnormalities as measured by 24-hour Holter monitoring.

The studies found that 12 lead standard ECGs and 2-D echocardiograms do not generally show these cardiac abnormalities in ME/CFS. It is common for such abnormalities to be misdiagnosed as anxiety attacks, and thus of psychiatric origin. Instead, in Dr. Lerner's patients  they seemed to be the result of viral infection.

Digestive disturbances

Many people with ME/CFS and FM find they have food sensitivities and various digestive problems. Some patients develop acid reflux disorder or might experience bowel irritability, abdominal cramping, and/or changes in bowel movements.

Digestive enzymes can help to break down food which makes it easier to digest and absorb nutrients. These enzymes can also help to reduce bloating, gassiness, and heartburn. 

GERD and stomach acid problems

Sometimes heartburn or acid indigestion (especially if frequent) may be symptoms of a larger problem called Gastroesophageal Reflux Disorder (GERD), a digestive disorder in which partially digested food and stomach acid and enzymes will back up into the esophagus. Sometimes, these secretions can travel all the way into the throat, which is then referred to as laryngopharyngeal reflux. The problem is usually caused by the lower esophageal sphincter muscle failing to close properly after food has passed into the stomach.

Certain medications, like NSAIDS, some asthma, blood pressure, tranquilizer and other pain medications cause this muscle to over-relax while some medications can irritate the GI lining. Food allergies, especially dairy, certain deficiencies, but also chronic immune disorders can also contribute to development of GERD. The standard treatment is to use medications which will either reduce stomach acid or suppress it from being made (from Rolaids to Tagamet or Pepcid (histamine H2-blockers) to proton pump inhibitors, like Prilosec or Nexium).

Though reducing or suppressing stomach acid may provide relief, it is important to realize the stomach needs a certain amount of stomach acid with which to sterilize food before it goes into the intestinal tract and to keep other bacteria in check, including yeast overgrowth. Plant enzymes and multi-strain probiotics are just a few of the digestive aids one might want to consider and review with his/her doctor. 

There are non-invasive things one can also do, like following a general anti-reflux diet, not laying down for 3 or 4 hours after eating, not bending at the waist after eating, elevating head of the bed by 4 to 8 inches, and taking extra measures to maintain regular bowel elimination.

Irritable Bowel Syndrome

One of the most commonly used treatments of Irritable Bowel symptoms is probiotics (which are actually dietary supplements containing beneficial bacteria or yeasts which can help to offset the overproduction of other (bad) bacteria). There are numerous formulas on the market but one particular formula containing B infantis was studied in FM patients and found to be especially effective. It is called Align and can be ordered from two of the leading drugstores.

Xifaxan (rifaximin) is an antibiotic which is sometimes prescribed to kill off small intestinal bacterial overgrowth (which can be checked for via a lactulose breath test) and to treat diarrhea. This particular medication has been used to treat travelers' diarrhea and is used in many countries. There were two other medications marketed for treatment of diarrhea and abdominal pain in women, but these have been withdrawn by the FDA (though one, Alosetron (Lotronex), is occasionally used in very severe and resistant cases and can only be prescribed by doctors registered with the company).

Infections—Bacterial, Viral and Fungal

Many people who are diagnosed with ME/CFS can link their onset to some type of infection and a significant number of these individuals will continue to have recurring infections, such as sinus, respiratory system, cardiac, musculoskeletal and/or bladder. 

Urinary infections

Many of the bladder infections are bacterial in nature and may require repeated courses of antibiotics. Very often, urine will be cultured to determine the specific strain and which medication is the most effective in treating it. Mycoplasma and chlamydia are two types of microorganisms found fairly often in ME/CFS which can cause persistent infections. Many of these infections require more aggressive and extended treatment than one standard course of antibiotics, and some infections respond better to specific types of antibiotics.

General recommendations are not to take magnesium products within 6 hours of an antibiotic (as they can interfere with absorption of the medicine) and not to use antibiotics beyond their expiration date. It may be helpful to be on Nystatin, an antifungal medication, while on antibiotic treatment.

Yeast infections

Yeast infections or yeast overgrowth tend to develop more frequently in patients with ME/CFS and FM which may be partially due to frequent infections requiring treatment with antibiotics (which will kill off both good and bad bacteria). Other factors promoting yeast overgrowth can be a diet high in sugar (sugar feeds yeast) and poor sleep which negatively impacts immune function. 

Yeast infections are often treated with Nystatin and/or Diflucan and Sporanox. The latter two medications are quite expensive and may increase risk of inflammation of the liver. Yeast overgrowth can be brought under control by using acidophilus/probiotic therapy, by avoiding intake of sugar and yeast products, and/or by adhering to a strict anti-Candida diet. There are many books as well as cook books written specifically on this topic.

Viral infections

A number of viruses have been implicated in ME/CFS, particularly from the herpes  and enterovirus families. Antiviral agents, like Acyclovir and Famvir, have been prescribed in the past to treat some strains of herpesvirus infections, but have been found to be ineffective against HHV-6 and HHV-7. 

Valtrex (valacyclovir) was studied in ME/CFS patients with reactivated Epstein-Barr virus (EBV) and improvement of physical function and cardiac function was shown.

Amantadine is another type of antiviral, usually used to treat Type-A influenza virus (at the onset of the flu) and is sometimes used in ME/CFS for its stimulating properties.

A very potent antiviral agent called Valcyte (ganciclovir) is currently being studied in ME/CFS patients to determine if or how it blocks HHV-6, EBV, and other herpesviruses. The majority of the study patients experienced significant improvement. However, it is important to note that Valcyte is considered to be potentially toxic and patients must be very closely monitored while taking this medication. 

Ampligen is an immunomodulatory type of drug, which has remained in an experimental state for ME/CFS in the U.S. since 1988. It acts on double-stranded RNA.  The New Drug Application submitted by the drug manufacturer to the FDA in late 2007 was regarded as incomplete. If /when the FDA approves Ampligen, it may be the first specific treatment for ME/CFS in the U.S. It is already approved by the European Union.

More resources

A conceptual breakthrough? Very exciting results on possible causes, tests, treatments for CFIDS symptoms by Dr. David Bell

Chronic Pain Control by Dr. David Bell

Complementary and Mainstream Treatment Approaches by Dr. Jeanne Hubbuch

Comprehensive Treatment of Fibromyalgia by Dr. Robert Bennett

Conventional Medicine Treatment for ME/CFS

Dr. Cheney Warns Against Long-term Use of SSRIs

Dr. Klimas speaks to MassCFIDS on cutting-edge developments

Exciting and hopeful news for CFIDS research and treatment from Dr. Gow on altered gene expression

Important Treatment Articles

Mitochondrial Dysfunction, Post-exertional Malaise and ME/CFS

Orthostatic Intolerance and CFS

Pharmacological Therapies Approved for FM

Report on the 6th AACFS Conference, 2003

Report on the 8th IACFS Conference, 2007

Treatment Overview

Working with your Health Care Provider

Details

Last Updated: 07 December 2023 07 December 2023

One of the most frequently asked questions by people who have, or think they might have, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) is who are the "experts" working with these illnesses in their area? The answer is that experts are "few and far between" and scattered around the country. 

There are doctors who are very knowledgeable and see patients in all-inclusive centers dedicated to these particular illnesses. However, using these may require considerable travel, and good insurance coverage, as well as sufficient financial means by which to absorb the cost of travel and patient balances on services and treatments.

There are centers in many states that have combined a variety of practitioners and offer a range of healthcare services, usually a blend of traditional and alternative medicine. These type of centers work with many chronic conditions and might be good options for a number of patients. However, these centers tend to accept few insurance plans.

The best suggestion for patients is not to lose hope, but learn how to take advantage of the health care that is available to them—according to their insurance and within their financial means. It is still possible to relieve symptoms, reduce exacerbations and improve overall function without going to the "experts".

Finding a Health Care Provider

Most of us with ME/CFS or FM can appreciate that finding a caring and capable doctor can be half the battle. This can be quite a frustrating and disappointing process. Patients will gain more (more help, less frustration) if they set realistic expectations and employ certain strategies to make the most of what is available to them. It is also important for patients to become aware about some of the factors driving the current problems in healthcare.

Many states (Massachusetts, in particular) are suffering a significant shortage of primary care physicians mainly due to fewer medical students going into primary care, since they are being paid a much lower income in this field and many doctors are becoming overwhelmed by tighter schedules and higher patient quotas imposed on them. As a result, many established doctors are leaving this field and some have set up private practices which operate on annual cash retainers (i.e. "boutique" or "concierge" medicine).

Many chronically ill people are often covered under Medicare provisions and/or Medicaid (a medical benefits program administered by states and subsidized by the federal government). Be aware that Medicaid is not accepted by all doctors due to very low reimbursement rates being reported.

 So, what we all are left with is a healthcare system which is certainly not fair nor easy. Thus it becomes all the more important for patients to learn how to make the most of what is available to them.

Primary care physicians (PCPs), most often internists, but who can also be general or family practitioners or doctors who specialize in geriatric or pediatric care, are usually the first point of consultation. Patients, especially those who have developed chronic and multiple health problems, really need someone to help oversee things and guide them along, especially when they are too sick to do so on their own.

A capable, open-minded PCP can be quite instrumental in helping patients connect with other doctors (even if they themselves are not highly knowledgeable about ME/CFS or FM) who can evaluate, order appropriate tests, and recommend treatments to minimize symptoms, reduce exacerbations and improve daily function.

It is highly unlikely that any single healthcare provider is able to adequately address all of medical issues found in ME/CFS or FM. These illnesses are complicated, affect many body systems, and respond best to a multi-pronged treatment approach.

Specialists can get the ball rolling but, by and large, they do not get involved with ongoing care. Therefore, this  highlights the need and benefit of finding a  good PCP and learning how to work with him or her. 

There are things patients should look for in primary care physicians and some things which are reasonable to expect from them as well as ways for patients to make the best use of time spent with their doctor.

Tips on how to get the most out of a doctor's visit

Finding a primary care physician has become a challenge for many patients around the country and this is becoming a frequent topic reviewed in magazines. Even aside from someone seeking medical care for ME/CFS or FM, time allotted for appointments with physicians is shrinking. So patients, like it or not, must prepare for them as carefully and thoroughly as possible.

Many, but not all, of the tips and recommendations listed below are those provided by Dr. Lucinda Bateman in a workshop at the 2007 International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) Conference.

• Primary care physicians/providers should be personable, open-minded, accessible and up-to-date. As patients, many of us realize that finding someone who satisfies even these four qualities might be a challenge. One important thing to remember is that this will be the doctor with whom patients will likely have the most contact and therefore, this needs to be someone with whom they can comfortably communicate.

• Many patients will try to stay with their current PCP but might find as their needs change, or their condition becomes more complicated, that their doctor does not adequately understand the scope of their illness. If their doctor is at least open-minded and will accept information about the illnesses, then it is still possible to work with him/her. However, if patients find their doctor is not listening to them, not believing in their symptoms or dismissing them in some way, or becoming apathetic or rude towards them, then they will need to find someone else.

• Try to get more information about new PCPs before making the switch (i.e. before actual transfer of medical records and designating him or her on an insurance plan). Some practices, at least in the past, were agreeable in having patients meet and have a short, general discussion with a given doctor about their knowledge and working experience with ME/CFS or FM (often referred to as "meet and greet" appointments). Another option might be to call and review the same information with the office manager.

• The role, skill and scope of the primary care provider is another important issue to understand. It is reasonable for patients to expect that their PCP will provide them with urgent care (assess an urgent problem or direct patients for appropriate care), help them receive a diagnosis for any given problem (whether the PCP is able to do so on his/her own or needs to refer patients to a specialist for evaluation), help to manage chronic symptoms or conditions, and check that preventative testing or care is getting done. From a patient's experience, this is how primary care should be ideally provided. But realistically, there will be times when some PCPs will prefer to turn over certain aspects of the illness to other doctors. One important area of debate is who is best able, or willing, to take on pain management.

• Plan ahead and schedule follow-up appointments while at the doctor's office. Arrive to appointments on time or early (the extra time can help people gather their thoughts and recover from travel to the office). The goal is not to waste any of the consultation time.

• Prepare as much relevant information as possible ahead of time for an upcoming consultation, especially by having a list of current medications readily available, completing forms at home (ask if these can be mailed or transmitted ahead of time), and identifying which symptoms/problems will need to be addressed at this appointment.

• Keep a personal journal (whether in a notebook, in the blocks of a large calendar, or on the computer) to track symptoms, medications, reactions to medications and/or what might trigger some symptoms. This tool can help patients not to overlook anything at the visit and maximize time with the doctor.

• Once at the office, limit the conversation on niceties and unrelated issues to a minimum. Also, don't waste time with the doctor on things that s/he would likely not be in charge of, such as billing questions, bad parking, or some other non-medical matter.

• Go to the appointment with the above information written down, but keep it short. Perhaps go in with only an outline of these concerns and problems. Keep as much information as you want for your personal use, but it is better to condense this information for a doctor's visit.

• Consider using other ways to quickly and effectively communicate symptoms with the doctor—create a small chart of primary, recurring symptoms (i.e. sleep, mood, pain, fatigue) and rank these from 1 to 10, or create a pain diagram (using an image of a body, front and back) and highlight and note areas of pain. These can also be effective tools by which to monitor improvement or changes. A word of caution from a patient's perspective—don't go overboard with this sort of thing and recognize that some doctors may totally misinterpret these efforts by thinking patients are far more functional than they are just by being able to compile this information, or viewing them as becoming overly obsessed about their illness (by the attention they are giving it).

• Try to coordinate presentation of symptoms to how most doctors handle their office visits—they follow an approach called SOAP—subjective (this is part of patient-reported problems), objective (data captured/ reviewed by the doctor), assessment, and plan. Therefore, prioritize and bring up symptoms and concerns at the beginning of the appointment. Above all, don't hold out on bringing up an important problem until the end of the visit—even if there is some hesitation or embarrassment about it.

• If the doctor starts to ask questions before all symptoms can be brought up, then politely remind him or her that there is more information to be shared on that problem, or that there are several other problems to cover at this appointment. If there will be many problems and concerns to be reviewed, be sure to schedule an extended appointment.

• Know your insurance plan, and what it will cover or not, ahead of time. Remind the doctor about plan limits or high co-pays, especially when certain tests or medications are being proposed.

• Know your medications—learn their proper names, dosage, how they are to be taken and their general purpose. When listing these, organize them by purpose, because this can help the doctor easily see the conditions for which patients are being treated and what is being used. Include any supplements or herbal medicines and provide all healthcare providers with the same list. Be sure to review risks and benefits of each medication, as well as interactions. Medications and relevant information (like side effects) used in the past should be listed separately from those currently taken on a regular basis.

• Identify and know your conditions and their status. For instance, if someone has sleep apnea, note the date of the last sleep study and whether any equipment is being used as part of treatment. If someone has a thyroid problem, note the last relevant test results and what medications are being used to control this problem, and so on.

• Know, keep track of, and arrange for your own basic preventative screenings and tests (i.e. GYN exams, mammograms, or prostate exams). It is also recommended that patients be aware of when periodic lab tests should be ordered while on certain medications.

• Ask for and receive a copy of all lab tests done and keep in a file folder or binder. If you can scan them and keep copies on the computer, that is helpful as well.

• Know what the general criteria are for ME/CFS or FM and how you meet the case definition for these illnesses. This is something patients can use if, or when, some doctors might say they do not know anything about ME/CFS or FM, or claim the illnesses don't exist. Consider printing this information and having it available for a discussion with a doctor.

• Most patients find it may be very helpful or even necessary to bring a family member or a friend (complete appropriate HIPAA privacy forms first) when meeting with a specialist and/or when a lot of information needs to be exchanged. It can be very difficult to concentrate and absorb details when learning about a new medical problem. Also, ask for the doctor to write down the diagnosis, certain terminology that s/he used during the consultation, medications, and/or anything else relevant to this particular problem.

   

What type of doctor is best for ME/CFS or for FM?

To understand what type of doctor is best suited for ME/CFS or FM, it is helpful to consider how doctors might have learned about the diagnosis and treatment of these illnesses. Lack of time may prevent the most well-intentioned doctors from staying abreast of the most significant research information and clinical guidelines on many illnesses.

As mentioned earlier, the worldwide number of physicians (some of whom are also involved in research) who could be considered to have true expertise in the diagnosis and management of ME/CFS is very limited. Periodically, some medical journals will publish information about ME/CFS or FM, but the depth to which these articles go or the random aspects brought up about these illnesses can vary greatly.

The number of doctors who are well informed about ME/CFS remains small. Many doctors are not well informed and this could greatly influence their approach to the illnesses.

Patients have had some success in getting diagnosed with ME/CFS by infectious disease specialists or neurologists, partially due to the type of abnormalities and dysfunction they might detect in various tests. It is not yet clear how much the newest diagnostic criteria for ME/CFS put forth in the report from the Institute of Medicine will improve doctors' general understanding. 

In the last few years, more doctors (especially rheumatologists) have become familiar with FM. Individuals who have FM have been usually diagnosed by rheumatologists mainly because the first standards for the classification of FM were created in 1990 by the American College of Rheumatology. Therefore, FM tends to be somewhat better recognized by doctors in this specialty, though there can be differences in their treatment approaches and the research or theories that any given rheumatologist may follow.

Other specialties that might be working with FM (in more recent years) are physiatrists (this is a branch of medicine that focuses on the patient's musculoskeletal system and spine, and uses physical therapy and some medications as primary treatments) and sometimes, pain management specialists (some are physiatrists, but usually they are anesthesiologists) can help with persistent, chronic pain. 

The Centers for Disease Control (CDC) also has a summary on the diagnosis and treatment of FM but it is quite limited. Criteria for the classification of FM are further detailed in our Diagnosis of FM section.

Cheat Sheet for doctor's visits

• Make a list of your questions, then sort them in order of importance and ask only the top 3-4 questions. Brevity and time is of the essence.

• Write down the doctor's answers.

• If tests are being ordered at an independent lab, have the doctor write "copy to patient" on the script, so you can get a copy sent to you.

• Don't overload a doctor with all your symptoms. This will tend to shut him/her down.

• Bring pertinent information and test results from other doctors with you. Do not rely on the doctor's office faxing something. This saves time.

• Ask the doctor to make pertinent notes in your record (i.e., not sleeping well causing increased flu-like feeling, drowsiness during the daytime, etc.). Many times a doctor tunes this important information out and just simply skips it. Having this information in your record will also be very important for filing for disability.

• Ask for the longest appointment necessary to meet the number of important matters to be reviewed. Sometimes s/he will have a 40-minute time slot.

• Consider seeing your primary care physician more frequently, either monthly or bimonthly, when possible. It is easier to catch your PCP up on problems on an ongoing basis than once or twice a year.

• Try to keep a log of any medication reactions, good and/or negative, that you have. Don't trust your memory.

• Do not accept abusive behavior from doctors. Many patients feel they have no choice. But abuse—emotional or physical—is not acceptable behavior.

How to Be Your Own Best Advocate
By Amanda Mathiesen

When you have a well-researched disease with many treatment options, your relationship with your healthcare team will probably be simple. Let’s say, for example, that you have type 2 diabetes. Your providers will almost certainly talk to you about medication, diet, and exercise. With a combination of these treatments, you are likely to be able to resume a normal life.

But what if your disease is not well researched? What if the Centers for Disease Control has recommended exactly zero medications for your disease? What if medical schools are, by and large, not teaching doctors how to treat or even recognize your disease? What if exercise makes you feel worse?

These questions are familiar to me, because I’ve had all the symptoms of ME/CFS for over two decades. For an embarrassing number of years, I believed my primary care physician when she said that (a) I didn’t have the disease and (b) there would be no point in diagnosing me if I did. I also believed her when she told me that there was no treatment. None of these things were true. Around 2020, I got a new and excellent primary care provider.

During the course of twenty years, I tried to exercise my symptoms away, only to find that my disease progressed from moderate to severe. By 2021, I was largely bedbound. When I was finally diagnosed with ME/CFS and fibromyalgia by a kind rheumatologist in January 2022, I was determined to make up for lost time.

Like my former PCP, my new rheumatologist, whom I’ll call Dr. Basil, was under the impression that there was no treatment for ME/CFS. My online reading, however, told me that low-dose naltrexone (LDN) was helping patients with the pain and brain fog that come with this neurological disease. I was desperate, and I wanted to try it.

Dr. Basil was not convinced. He had never prescribed the drug before, he didn’t know of any colleagues who were prescribing it, and he was concerned that the drug might be harmful.

So what could I do? I could wait for the CDC to approve a medication for ME/CFS. Then again, it had been almost nine decades since the 1934 epidemic of myalgic encephalomyelitis in Los Angeles, and the CDC had yet to approve anything to help sufferers with the disease. Alternatively, I could wait for medical schools to start training doctors to understand and treat ME/CFS. The only problem with that approach is that if medical schools start doing this today, the first newly minted ME/CFS-literate doctors will finish their training in 2030.

Another possibility was that I could continue to make appointments with other rheumatologists in the hope of finding someone who was willing to prescribe the drug. I had seen one rheumatologist before Dr. Basil, though, and she hadn’t been able to diagnose any of my diseases with autoimmune features, which include Crohn’s disease, fibromyalgia, and ME/CFS. In fact, she had said with an air of certainty that I didn’t have any autoimmune diseases, something that would have come as a surprise to my gastroenterologist, who had the colonoscopy photos to prove otherwise. This experience had left me with the impression that good rheumatologists were hard to find.

There was something in Dr. Basil’s manner that suggested to me that he was smart and ethical, and that I should keep stating my case. After about six months of me advocating for myself, he prescribed LDN. Although each patient is different, LDN has reduced my pain and brain fog more than anything else I’ve tried, and it’s made my life much more livable. I have experienced no side effects.

Here are the lessons I learned about self-advocacy along the way. My hope is that you, the reader, will find the inspiration to work with your own smart, ethical doctor to access better treatment options.

1) Do your research.

I first read about LDN when I joined an online platform called stuffthatworks.health in 2021. It’s a website that collects feedback from people with chronic diseases and keeps track of which treatments are most helpful to them.

While the online crowdsourcing site had gotten me interested in LDN, I knew that Dr. Basil was more likely to consider putting me on the drug if I could find medical articles to support that course of action. In February 2022, I found two medical articles by Jarred Younger, PhD, the Director of the Neuroinflammation, Pain and Fatigue Laboratory at the University of Alabama. His work confirmed that LDN was a promising treatment for chronic pain in autoimmune conditions. I sent these articles to Dr. Basil.

2) Listen to what your doctor’s concerns are, then answer those concerns.

After a few months, Dr. Basil pointed out that even if he wanted to prescribe LDN, he didn’t know what the dosing protocol was, since nobody he knew was using it. I sent him the dosing protocol made available online by the LDN Trust, a U.K. nonprofit designed to help patients access the drug. When Dr. Basil eventually found a colleague who was prescribing the drug, the colleague’s dosing protocol was the same.

Second, Dr. Basil didn’t know of a pharmacy that could compound the drug. Neither did I. It definitely wasn’t available through the big chain drugstores. I checked in with MassME, and Ken Casanova, the Head of Patient Services, told me of a compounding pharmacy that many patients were using. Insurance would not cover the prescription, but a three-month supply was under $55. I could afford it.

Admittedly, I had an advantage in terms of finding this information because that’s what I used to do professionally before I got sick. I was a reference librarian. If you need help finding medical information on an ME/CFS treatment that interests you, I encourage you to ask the reference librarians at your local library. You may be surprised by all the resources they have for you.

3) Appeal to your doctor’s sense of empathy.

At the end of six months, Dr. Basil was still reluctant to prescribe the drug, largely because he was concerned it might be harmful. And yet, everything I had read said that side effects from LDN were rare and mild. My ME/CFS-related pain, on the other hand, was not rare and mild. It had become severe and constant. I dreaded living another year with the pain, let alone the three additional decades I might expect to follow.

However, I had an ace in the hole left. Two, really. The first was that my rheumatologist's office contained a sign indicating that patients had the right to have their pain addressed. The second was that I was more and more certain that Dr. Basil was an ethical and empathetic person. I believed that if I raised the issue of the right to pain relief, my doctor's own sense of ethics would persuade him to give me a test run with LDN.

That turned out to be the case. I’ve been on LDN for about a year now. My pain has gone from “How on earth am I living with this?” to “Right, I can live with this.” A year ago, my brain fog was so severe that I was asking my husband for the names of our nieces. It’s now cleared up to the point where I was recently able to publish a letter in the Boston Globe about the debilitating nature of ME/CFS. I’m also able to do a bit of volunteer work under the tutelage of Ken Casanova, the man who helped me find a compounding pharmacy.

Conclusion

I’m sharing this story with you because you may be where I was in January 2022. Your doctors may want to help you with ME/CFS, but they may not know how.

Given the circumstances, what should we, the millions of ME/CFS patients living in the U.S., do? Should we wait for the day when the CDC and medical schools start prioritizing our illness, or should we try to work with the doctors we already have? Large-scale advocacy work is essential in the long term, but I believe that in the short term, we need to work with the doctors we have.

Looking back, my original self-advocacy teachers were the young, gay men I met when I started volunteering for an AIDS hotline in 1990. At that point, AIDS was still largely a death sentence. Some of my colleagues at the hotline had HIV themselves. As exhausted and sick as they were, I saw them advocate for themselves and other patients when the government was doing little or nothing to help them.

Self-advocacy is not without its difficulties for both patient and doctor. I’m sure Dr. Basil would tell you that for six months, I was a pain in the neck. That’s the downside of self-advocacy: if you refuse to accept that your pain cannot be treated, you may be perceived as difficult. But then, those of us who struggle with ME/CFS are fighting a difficult adversary. By 2022, I had the rock-solid determination that only minute-by-minute agony can teach, and Dr. Basil bore the brunt of it.

At this point, though, I think Dr. Basil and I are happier and more capable than we were at the beginning of our journey together. I have less pain and brain fog, and Dr. Basil is now empowered to treat other patients that he previously might have considered untreatable. That’s why he became a doctor in the first place: to help people. I feel our interactions helped him become a more effective doctor, and he feels, correctly, that he assisted me when nobody else would. Perhaps a similar journey is waiting for your doctor – and for you.

These are Jarred Younger, PhD's articles: (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/ and https://pubmed.ncbi.nlm.nih.gov/23359310). 

The LDN Trust's dosing guide, patient guide, and prescriber guide can be found here: https://ldnresearchtrust.org/2022_LDN_Guides. The LDN Trust is a British nonprofit, and all their guides are reviewed by medical doctors. The 2022 Guides are the most recent ones. 

Note: The Massachusetts ME/CFS & FM Association endeavors to make our content as accurate and timely as possible, but we neither dispense medical advice nor endorse any medical product, practitioner or technique. Readers are advised to work with their primary healthcare practitioners – using strong self-advocacy! -- before engaging in any health-related practice.

More resources

ME/CFS Self-Care: The Basics

Chronic Fatigue Syndrome and Fibromyalgia Specialists—A list of ME/CFS and FM specialists on U Compare Health Care.

Consequent conditions to CFS/ME and cancer prevalence

Dr. Gudrun Lange Reviews Neuropsychological Testing for CFS and FM

How Doctors Think by Jerome Groopman, M.D.

In an effort to improve medical efficiency by Dr. Byron Hyde

Links to Lists of Health Care Providers Outside of Massachusetts

Making the Most of Your Doctor Visit This article reviews tools (like charts and pain logs) that can help patients record and monitor their pain—these are provided by the American Chronic Pain Association (ACPA). 

On the Morbid Fascination with Psychiatric Morbidity by Dr. Alan Gurwitt

Recommended for ME/CFS and FM patients Undergoing Surgery by Dr. Charles Lapp

The ME/CFS Initiation— A Primer for New Patients

The Physical Basis of CFS by Dr. Anthony Komaroff

Using an Emergency Room Properly

What questions should a doctor be asking? by Dr. Byron Hyde

Why doctors can't diagnose by Dr. Byron Hyde