Full Catastrophe Living --Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness

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Last Updated: 25 November 2015 25 November 2015

Full Catastrophe Living—Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn, Ph.D. ISBN: 0385303122.

Jon Kabat-Zinn, Ph.D., is one of the most recognizable names in the field of mindfulness meditation and its clinical applications. Dr. Kabat-Zinn is the Executive Director of the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School, Worcester, MA. The Stress Reduction Clinic, founded by Kabat-Zinn in 1979, has drawn thousands of participants. Patients seek help to cope with health problems or stressful life situations.

This review focuses on Dr. Kabat-Zinn's first book, Full Catastrophe Living—Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. This book was designed to give the reader full access to the training program offered at the stress clinic. Our goal is to introduce this type of alternative material for your general information.  

In the title, the word catastrophe refers the enormity or magnitude of one’s life experiences (i.e., stressful situations at work, home, or in relationships; the high-paced activity and busyness of daily life; and all the emotional activity that will result from these events). 

At the core of Dr. Kabat-Zinn's program is the practice of mindfulness, a form of meditation originating from an ancient Buddhist tradition. Another term for mindfulness is “moment-to-moment awareness”, or paying attention to what is going on in one’s life, to what is going on in one’s body, and getting to know oneself.

In the book, we find that mindful breathing is the first fundamental technique used in meditation (i.e., focusing the breath moving in and out of the body).

We then learn to pay attention to sensations within the body though a technique called the “body-scan”. According to Dr. Kabat-Zinn, this technique is often used for patients who have chronic pain. A “body-scan” involves lying down in a comfortable, quiet setting, and using the mind to focus through the body, section by section (feet, legs, thighs, abdomen and so on). Within each section, we notice how it feels (including areas which may be very painful), and then redirect the focus back to breathing (letting the body soften and relax). This continues with each body part until the entire body is relaxed.

The book separates information into five main categories, delving into extensive detail about the philosophy of health, the relationship of the mind to body, stressors people might face, types of health problems that might develop, and ways to react to all of the above.

The first section provides the foundation for mindful meditation and includes many exercises to aid in meditation. Instructions and illustrations for specific techniques such as the “body-scan”, mentioned above, and a sequence of yoga postures are well described and easy to follow. The book not only explains how to do these postures (with appropriate cautionary notes on things which may not be suitable for some individuals) but it also explains what happens in the mind and body when engaging in “mindful hatha” yoga (the style used in the stress clinic). Yoga “is” meditation, according to Kabat-Zinn, and this particular style consists of gentle stretching and strengthening movements, done mindfully and purposefully, and within one’s own limits. The type of yoga he prescribes should never be competitive or focus on doing, pushing, or progressing.

The downside of this book is that there is quite a lot to read and learn about mindfulness meditation, therefore the book is quite wordy. Dr. Kabat-Zinn also incorporates numerous examples and situations from the Stress Reduction Clinic throughout the book. He describes extensively patients' medical backgrounds and feelings about their illnesses. This may appeal to some readers, especially those who seek to relate to other people’s experience.

But others may find this style too wordy and detailed, making it tiring to read and absorb. Nevertheless, the benefits of the information, insights, and skills that can be gained from this book will outweigh the negative aspects for most people. Dr. Kabat-Zinn’s readers can find this book and other material in a CD version as well as video presentations.

[Editor’s note: Since yoga has become very popular, classes in various styles are widely offered at the YMCA, wellness centers, and/or senior centers, just to name a few. This book can be very helpful when evaluating programs suitable for ME/CFS and fibromyalgia and other serious chronic health conditions. Some styles of yoga can be very intense, requiring one to maintain precise poses for long periods of time. Bickram yoga is practiced in a very hot environment (95 to 100 degree room), enabling profuse sweating thought to produce cleansing. These may be suitable for advanced yoga enthusiasts or young and healthy participants, but these are not compatible with the Kabat-Zinn program. Be sure to get a clear description and understanding about any class that you are considering, and ask if instructors offer the type of yoga practice prescribed by Kabat-Zinn.] 

A study of 1555 FM Patients provides valuable insight on longitudinal outcome of FM

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Last Updated: 08 November 2015 08 November 2015

The Journal of Rheumatology, July 2011 issue, published a comprehensive study that examined symptoms in 1,155 Fibromyalgia (FM) patients (i.e. their severity and overall change or stability) on a semi-annual basis for up to 11 years. Initially all patients satisfied the American College of Rheumatology preliminary 2010 FM criteria modified for survey research.

The study revealed, amongst other things, that variability of symptoms caused 44% of patients to fail to meet FM criteria at least once over the study period.

The researchers found that about 10% of patients had substantial improvement and about 15% had moderate improvement of pain over the study period.

Overall, FM severity worsened in 35.9% and pain in 38.6%. This study could help physicians and patients to develop more realistic expectations about the course of FM.

View the abstract and find out how to access the full text article.

Demystifying the Alphabet Soup

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Last Updated: 20 November 2015 20 November 2015

What do the terms ME, FM, EBV, CFS, CFIDS, AACFS and IACFS, CFSCC, CFSAC, CDC, NIH, SOK, ICD, ICD-CM, PVFS, PPS, PWC mean?

ME—In 1956, Dr. Melvin Ramsey, of England, coined the term Myalgic Encephalomyelitis (ME) while investigating an illness that had “CFIDS-like” properties. The name was first published in the United Kingdom in the Lancet.

FM—In 1976, Fibromyalgia (FM) was first coined as a term, even though the illness had been believed to have been around for a long time. In 1990, The American College of Rheumatology developed diagnostic criteria for doing FM research and the term caught on.

EBV—During the mid 1980’s, many thought the outbreaks of illness at Incline Village, Nevada were Epstein Bar Virus (EBV). Hence, CFS started life during the later part of the 20th century as EBV. EBV is a very common virus, found in a large percentage of folks around the world. In a child, it really doesn’t manifest illness. In a teenager, if it is their first exposure, it is mononucleosis. Active EBV in adults can be a single cause or combined with other processes and can become a serious illness. By 1988, at least four studies had been done that could not connect EBV to CFS.

CFS—In 1988, the Centers for Disease Control and Prevention (CDC) published their definition of the illness in Annals of Internal Medicine, naming it Chronic Fatigue Syndrome (CFS). To say the name was a bit dismissive is an understatement. Visit the CDC CFS website.

CFIDS ("cee-fids")—By the 1990’s, patient groups and patients started calling the disease Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) to reflect the immune component of the illness. However, the formal name for research in America is still CFS.

AACFS—The American Association for Chronic Fatigue Syndrome (AACFS) ran its first national conference in 1998. It went on to run a number of conferences.

IACFS— In 2006, the organization of AACFS officially changed its name to the International Association for Chronic Fatigue Syndrome (IACFS) to reflect how far and wide this illness was. Today, it runs a biannual international scientific conference that brings together researchers from all over the world. Visit the IACFS/ME website.

CFSCC—In 1999, the Chronic Fatigue Syndrome Coordinating Committee (CFSCC) was formed and its goal was to act as a liaison to the Department of Health and Human Services (DHHS) to offer advice on how to handle CFS. The committee was made up of government physicians and non-government physicians, who were actually in the trenches either treating patients or researching CFS. Recommendations were made to the Assistant Secretary of Health and Human Services which were passed on to the Secretary of Health and Human Services. .

CFSAC ("cif-sack")—In 2003, The Chronic Fatigue Syndrome Coordinating Committee (CFSCC) changed its name to the Chronic Fatigue Syndrome Advisory Committee (CFSAC). The CFSAC is specifically convened for "inter-agency coordination" from the CDC and NIH as well as with public input. Visit the Department of Health and Human Services CFSAC website.

CDC—Centers for Disease Control and Prevention (CDC), located in Atlanta, Georgia, is the government agency responsible for public health and answers to the Department of Health and Human Services (DHHS). CDC is called upon to investigate outbreaks, conduct research, develop health policies, and provide leadership and training among some of its many duties. Visit the CDC homepage.

NIH—National Institutes of Health, located in Bethesda, Maryland, is made up of many Institutes. Their mission statement reads “NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability.” The various Institutes foster creative discoveries, develop innovative research, which, when applied, improves health. They have a rich history. To read more about the history of the NIH, visit their website. They too are a division of the Department of Health and Human Services. Visit the main website for the NIH.

SOK—In April, 2011 National Institutes of Health (NIH) hosted the State of the Knowledge (SOK) workshop on CFS. At this time, NIH started using the term ME/CFS rather than just CFS. ME is a recognized illness in the rest of the world except for America. So, this was an effort to combine the two names. There is some controversy over this from some patient groups. While some feel ME should stand alone others feel it is a good move to combine them.

The CDC still uses the term CFS. Not all government agencies are on the same page. This, in part, is due to politics, definition, advocacy efforts and whatever goes on behind the curtain.

ICD—The United States and countries across the world classify illnesses using an official coding system called the International Classification of Diseases (ICD) developed and administered by the World Health Organization (WHO). With the newest modification about to take place, the rest of the world will be upgrading to version ICD 11, while the United States will be upgrading from version 9 to version 10.

ICD-CM—Individual nations can modify the ICD codes in order to better accommodate their needs, but only with permission from the WHO. In the U.S., it stands for International Classification of Diseases- Clinical Modification (ICD-CM). Again, there is controversy as to where to list CFS. The importance of this is due to the fact the ICD codes are used in many types of health records: for billing purposes; for Medicare and Medicaid; for disability insurance; for mortality and morbidity statistics.

PVFS—Post Viral Fatigue Syndrome (PVFS) was another term, not as commonly used, which was interspersed with CFS, sometimes because the belief was that CFS patients’ illness was triggered by a virus .

PPS—Post Polio Syndrome (PPS) During the late 1980’s, patients who had “recovered” from polio were complaining of the type of fatigability that CFS patients had. There was a flurry of research on polio patients and by the late 1990’s, interest and money had diminished. What came out of the research was the understanding that as polio patients got older, the “good” arm or leg was wearing out from overworking. No easy answer to help them was found.

GWS—Gulf War Syndrome (GWS) became an issue in the 1980’s. It took the government about 17 years to acknowledge that GWS really did exist. Many of the GWS patients got diagnosed with CFS.

PWC—Patients with Chronic Fatigue Syndrome (PWC) was a term coined by some patient groups and advocacy persons during the 1990’s. It has fallen by the wayside, but every now and then it shows up in an article. If you read PWC, now you know what it means.

NIDS—Neuro-Immune Dysfunction Syndrome (NIDS) was founded by Dr. Michael Goldberg, of California. Dr. Goldberg is a pediatrician whose wife developed Chronic Fatigue Syndrome. He began to see a pattern of neuro-immunity issues in both his CFS patients and his pediatric autistic patients. He went on to develop an approach to treating his population and founded the Neuro-Immune Dysfunction Syndrome organization. Visit the main website for NIDS.

MassCFIDS/ME & FM Association— started in 1983, and incorporated in 1985, this patient organization is run by an all volunteer staff and is the oldest patient group in the country. The name of the organization has morphed with time to reflect the changing times. It started life as MassEBV, then CFIDS, then ME and FM were added to reflect our patient population. This organization is at another crossroads of change. The Board of Directors takes their jobs very seriously in guiding MassCFIDS/ME & FM. Changing the name to CFS did not make any sense. Dropping CFS for ME also did not make sense. Until the dust settles and the ICD codes are finalized, and the CDC and NIH can come to some agreement on the name, the Board has decided to keep the name of the organization as it stands for the time being.

Pharmacological therapies approved for FM

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Last Updated: 03 January 2016 03 January 2016

Fibromyalgia (FM) has received a lot more attention over the last couple of years through television and magazine advertisements promoting three new drugs indicated for use in FM. Lyrica (pregabalin), Cymbalta (duloxetine), and Savella (milnacipran) were approved by the Food Drug Administration (FDA) as effective treatments for FM based on their performance in clinical trials.

In order to meet the FDA criteria as "effective" treatments, these drugs had to show benefits or some measurable level of improvement in study participants as they compared to placebos (substances with no active ingredients) in each their own trials. These medications might provide considerable relief for some patients, but they do not work the same way for everyone with FM, for a number of reasons.

These particular drugs differ from each other in their chemical composition and modes of action (i.e., they target different brain chemicals). Therefore, how each patient responds to any one of these will greatly depend on his or her own body chemistry, variation in symptoms, and severity of illness. The majority of FM patients have pain and disrupted sleep, but some may find mood disturbances to be problematic, while others have digestive, intestinal or bowel sensitivities. It is not unusual for FM patients to be prescribed multiple medications, to manage multiple symptoms, which may put some patients at a greater risk of adverse drug interactions.

Whenever new treatments are being contemplated, the general rule is to select a drug where its benefits are thought to outweigh the potential risks, and anything else known about the patient's medical history that might negatively impact him or her. In addition, when starting out any new medication, it is usually recommended that individuals with FM begin with a very low dose (i.e. 25% of prescribed dose) and work their way up slowly to the full prescribed dose, watching for any adverse side effects. This particularly applies to these drugs.

Despite their limited "track records" there often tends to be an eagerness to try out the latest treatments. Decisions to initiate treatment are often based on favorable study results (i.e., the acceptance of study results at face value) and may not take into account other factors that influenced results (i.e., the severity of illness in the study participants or the placebo effect that produced favorable response). The result is the possibility of unrealistic expectations for the typical FM patient, who may have a more complicated history or combination of problems than study participants.

A group of German doctors conducted an extensive review of these three drugs on their overall efficacy, benefits and adverse effects, with one significant difference—they evaluated how they measured up to each other. Their comparative analysis was published in 2010 in the Journal of Pain, the official scientific journal of the American Pain Society. Their findings and excerpts from several other studies are examined later in this article. But first, we will review the basic properties of these medications and the developments since their release on the market.

Basics about medications approved for use in FM

Pregabalin (Lyrica)

The FDA approved Lyrica, made by Pfizer, Inc., in June 2007 as the first prescription medication for the treatment of FM. Very simply, Lyrica is thought to work by changing the effect of GABA (gamma amino butyric acid), often referred to as a "calming" neurotransmitter/brain chemical.

Structurally, it is related to Pfizer's first antiepileptic drug, gabapentin (Neurontin), which came on the market in 1983. Lyrica is found to be more potent and effective at lower doses than gabapentin (Neurontin). Its primary uses in FM are for pain relief and improvement of fatigue and sleep.

An "informal" review of several internet drug information sources show that patients' experiences with Lyrica varied widely, from stating that it caused many difficult side effects, rapid weight gain, and the drug was found to be very expensive, to praising it as the best treatment they've used to date. The average of the patient/user ratings placed Lyrica at slightly beyond the halfway point on the scale used. This information is meant to provide a general idea in how a random group of patients responded to this treatment—it is strictly subjective and not a medical interpretation.

Lyrica is also used to treat diabetic nerve pain, nerve pain after shingles and partial onset seizures in adults with epilepsy.

The most common side effects are weight gain, swelling of hands and feet, and may worsen "fibro fog" in some patients. In some clinical trials, dizziness and somnolence were the most frequently reported adverse events. Many of these side effects were echoed in the above-mentioned patient/user reviews.

It is important to report any unusual reactions to the prescribing physician, as some of these could be serious and warrant discontinuation of treatment—such as loss of coordination, uncontrolled movements, unusual fatigue, difficulty speaking or changes with vision.

Some patients have experienced depression, changes in their mood or have had suicidal thoughts. As a result, effective April 2009, Lyrica and Neurontin (along with other antiepileptic drugs) were required by the FDA to include a warning about the increased risk of suicidal thoughts or actions on their product labels.

Duloxetine (Cymbalta)

In June 2008, Cymbalta, manufactured by the Lilly Co., was approved by the FDA for use in FM, to help reduce pain and improve function. Cymbalta belongs to a class of medications called selective SNRIs (serotonin and norepinephrine reuptake inhibitors). It works by increasing the activity of these two neurotransmitters which are found to be deficient in FM.

By adjusting in how the brain and spinal cord respond to painful stimuli (which is part of the nociception system/how pain is sensed), is how it is thought to provide an analgesic effect.

Cymbalta is also indicated for the treatment of major depressive disorder, generalized anxiety disorder, management of diabetic peripheral neuropathic pain, and more recently, it was approved for the management of chronic musculoskeletal pain, including chronic osteoarthritis pain and chronic low back pain.

Though Cymbalta is suggested for a wide range of problems, it still should be approached as a potent treatment with a dual mechanism. A thorough assessment should be made of the patient's personal and/or family history of psychiatric problems (e.g. bipolar/manic-depressive disorders) as this drug may worsen or uncover these.

It is also very important to review all medications used by the patients (including over-the-counter products and supplements) in order to prevent serious interactions since one-fourth of all prescribed medications are metabolized by the same enzyme (CYP2D6).

These medications include other selective serotonin reuptake inhibitors (SSRI's), tricylic antidepressants (TCA's), beta-blockers, opiates, antiarrhythmics, migraine headache treatments, and various plant substances.

For their own safety, patients need to communicate with their doctors in an honest, open manner, and not withhold any information about what else they might be using on their own (including alcohol), and use medications exactly as prescribed.

In the event of adverse effects, patients need to inform their doctors about these problems and not make changes on their own.

NCBI warning for medication-induced suicidal tendencies. The National Center for Biotechnology Information (NCBI, a branch of the National Institutes of Health (NIH)) has posted an important warning about the potential risk of suicidal tendencies in some patients while using certain antidepressants, including, but not limited to, duloxetine (Cymbalta).

The NCBI advises that "all" patients should be informed about this risk and the early signs/symptoms associated with this risk. Family members or caregivers should know the same, so they can recognize warning signs. The reason for extra precautions, according to NCBI, is because people's mental health can change unexpectedly, even in individuals who do not have mental illness, but are using duloxetine to treat other conditions. This appears to happen, more often, at the beginning of treatment and/or when the dose is increased or decreased; therefore, their recommendation is that patients be closely monitored during these times. NCBI lists the following symptoms as potential warning signs of suicidal tendencies which need to be immediately reported to the doctor: "new or worsening depression; thinking about harming or killing yourself, or planning or trying to do so; extreme worry; agitation; panic attacks; difficulty falling asleep or staying asleep; aggressive or hostile behavior; irritability; acting without thinking; severe restlessness; frenzied abnormal excitement; or any other unusual changes in behavior."

Milnacipran (Savella) 

Savella was approved by the FDA in January 2009 as yet another FM-appropriate treatment. It is made by Forest Laboratories Inc., and falls into the same class of medications as Cymbalta.

However, its mechanism focuses on boosting norepinephrine levels more so than serotonin ones.

Its overall ability to reduce pain has been reported by several sources as being only "marginal."

Two of its more frequent side effects are increase in blood pressure and nausea.

According to the NCBI, milnacipran is currently not used in the U.S. to treat depression. The NCBI has issued the same warnings for milnacipran as for duloxetine regarding potential changes in mood and/or risk of suicidal thoughts and tendencies.

How do these medications compare to each other?

A group of German doctors retrieved and reviewed data from previous studies conducted for all three pharmacological therapies, totaling 17 studies and 7,739 patients who met the inclusion criteria. (Such a study is called a meta-analysis.)

Some of their sources included MEDLINE, SCOPUS, Cochrane Central Register of Controlled Trials, as well as unpublished data from FDA and NIH databases and others. Even though these studies may have some variations in how they were conducted, the amount of data reviewed was quite substantial.

(See our editorial note at the end of this article concerning the validity of meta-analyses such as this one.)

The article is written by Häuser W, et al, titled "Comparative efficacy and harms of duloxetine, milnacipran, and pregabalin in fibromyalgia syndrome", and was published in the Journal of Pain, 11 (2010): 505-521.

One of the most remarkable findings in their analysis of these medications and their ability to reduce pain was that "adjusted indirect comparisons indicated no significant differences for 30% pain relief." This suggests that none of these were found to be highly effective against pain and they all seemed to be about the same, when evaluating degree of pain relief.

When combining pain and sleep disturbances, duloxetine (Cymbalta) and pregabalin (Lyrica) were found to be considerably more effective than milnacipran (Savella).

Milnacipran (Savella) and pregabalin (Lyrica) were more beneficial in reducing fatigue than duloxetine (Cymbalta), while duloxetine had a stronger impact on mood.

Both SNRI's caused more headaches and nausea/digestive symptoms and also raised blood pressure.

This comparison of specific features of these medications may be very helpful in a clinical setting as physicians try to select the most suitable treatment for each individual patient.

Though the level of pain relief or other noted improvements can be modest, or even minimal in some cases, drugs can still meet approval by the FDA. As mentioned above, pharmaceutical companies only need to show that a drug performs better than a placebo.

For example, Medical News Today reports the following data on clinical trials testing Cymbalta's effectiveness for FM: "Lilly established the efficacy of Cymbalta in two pivotal three-month clinical trials involving 874 patients with fibromyalgia. In both studies, Cymbalta reduced pain at study endpoint compared with placebo as measured by the Brief Pain Inventory (BPI) ... improvement in pain for Cymbalta vs. placebo was observed in the first week of each study. Fifty-one percent and 55 percent of patients on Cymbalta had a 30 percent improvement on the BPI at endpoint (clinically meaningful relief is considered at least 30 percent pain reduction)."

Some physicians are not convinced that all new drugs are better just because they are new, generally speaking, since this applies to treatments indicated for other conditions. The reason for their doubts is that the effectiveness/benefits of new drugs are not often compared to existing drugs.

In one unusual case, clinical trials for a new drug that was supposed to be promoted as another treatment for FM were abruptly terminated by Pfizer in February 2009. The "Musculoskeletal Report" (a source for Biopharm business news) announced that Pfizer had re-evaluated this drug, esreboxetine, and concluded its potential benefits to FM patients would not be too substantial.

The President and General Manager of Pfizer's Primary Care Business Unit, Pedro Lichtinger issued this statement, "While confident in the safety of these compounds, we don't believe that they provide significant benefit over other therapies."

Esreboxetine was a selective norepinephrine reuptake inhibitor that Pfizer, Inc. was working on for use in FM. It is thought to be essentially the same drug as reboxetine (Edronax), also made by Pfizer, but currently approved as a treatment for depression.

Though one can only speculate about the potential value this drug might have had for FM (or not), it becomes all the more evident that "head to head" trials (i.e., studies in which one drug is directly compared to another drug or drugs from the same class or group) might be the best way to demonstrate the advantage of one treatment over another.

Reference

Häuser W et al, "Comparative efficacy and harms of duloxetine, milnacipran, and pregabalin in fibromyalgia syndrom," Journal of Pain 11, no. 6 (2010): 505-521. 

Editorial comment on Statistical Meta-analysis

The Massachusetts CFIDS/ME and FM Association would like to bring to the attention of our readers that the type of study conducted by the group of German doctors discussed in this article is referred to as a "meta-analysis." This term refers to the statistical analysis of a group of individual studies.

The authors of a meta-analysis re-analyze the results of many smaller studies (with only the limited information available in each published report of a study, not the original data from each) pooled as if a larger study had been done with all of the patients in the smaller studies.

Thus a meta-analysis will take results from 10 studies of 10 patients each and claim to have valid results from 100 patients, but without having access to the original data for each of the 100 patients.

Thus a meta-analysis, in itself, is not an actual scientific study, but a type of averaging of averages from many different studies.

Therefore, from a mathematical and also a medical standpoint, trying to get "effectiveness" data comparing drugs from varying studies that only compared a single drug to placebo is not really valid. There are too many factors that can throw one's conclusions off such as variations in study length, severity of FM in patients of different studies, numbers of dropouts in a study due to severity of side-effects, etc.

So the German meta-analysis is similar to comparing apples to oranges (placebo), persimmons to oranges and redwood trees to oranges, and then coming up with conclusions about how apples, persimmons and redwood trees compare to each other.

On the other hand, the German meta-analysis provides a broad review of a large number of studies. It is worth considering its conclusions, but they really shouldn't be taken as "gospel."

To put things even more into perspective, some time ago a meta-analysis of treatments for CFS found that Cognitive Behavioral Therapy (CBT) was the "best" treatment for CFS.

The facts that most of the studies analyzed used the Oxford definition of CFS and compared CBT to placebo, and only a few of the analyzed studies looked at other treatments and patients identified by the 1988 or 1994 definitions of CFS, were ignored.

Thus, the conclusion of a meta-analysis can be heavily influenced by the number of studies of a certain treatment outweighing the number of studies looked at in the analysis that used a different treatment. We don't know if that is the case in this German study, but it could be.

Emergency Preparedness Plans for ME/CFS and FM Patients

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Last Updated: 24 November 2015 24 November 2015

Living in New England or other parts of the country where weather tends to be unpredictable and often severe, it is essential that people with chronic illnesses and health problems make it a habit to prepare themselves for emergencies. Most of these will be weather-related but difficult situations, like loss of electricity, heat and water can last longer than expected.

As patients with a chronic illness, being prepared as much as possible is key to reducing the stress that comes from lack of preparation. It is no secret that stress is not our friend, especially if you have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM).

This article is a detailed outline of what to prepare for so you don't have to think. However, keep in mind that each individual person may have to personalize the list. And in no way does it cover absolutely everything. Feel free to add your particulars to the list.

Contact your county government's emergency information management office and see what they have to offer for planning resources.

If you use services from your state, county or city as a disabled person, such as meals-on-wheels or home aid, contact them and ask what services they provide in an emergency and see if they maintain a list of disabled people on which you can be put. In a disaster, this means someone would be looking for you.

What to keep in your car

For automobiles: there are some specific things to keep in the car either for emergencies or for inclement weather, especially when we start another unpredictable winter in New England:

• Your name, address, phone, work and home, emergency contact numbers and your physician's name, address and phone. You may want to include your date of birth—this can be a written list you keep on your person
• Window brush and/or scraper
• Bag of icemelt (cheap brands don't work as well)
• Roll of paper towels
• Small shovel— can have the fold up handle or be a child's plastic shovel
• Car cell phone charger, if you have a cell phone
• Flashlight with batteries and make sure it is in working order
• Portable radio with batteries
• Emergency lights
• A few plastic forks, spoons and knives, bendable straws
• Maps of the areas you travel the most
• An extra fleece coat or jacket because fleece keeps you warm
• Extra pair of gloves
• Warm hat
• A few bags of dried food that has a long shelf life
• Emergency blanket such as a sheet of mylar that is lightweight but can keep you warm. It might be a good idea to include one in the emergency kit for your home
• First aid kit comprising the following items:
  • Large sterile gauze pads
  • Paper tape in a wider size so it can be can into smaller pieces if necessary
  • Scissors (to cut clothes, gauze etc.)
  • Assortment of stiri-strips and band aids
  • Ace bandage
  • Aspirin
  • Face mask
  • Benadryl for itch and allergy relief
  • Non-latex gloves (preferably several pairs)
  • Pain medicine if you have extra
  • Something to make a tourniquet
  • Drinking water
  • Small but warm blanket
  • A tarp
  • Hand warmers that when snapped, heat up
  • Whistle—so people can find you

   

   

For your home or apartment

Depending on space, this may have to be adjusted. Plan on having at least a 3-day supply of food. As we have seen, outages can last for longer, so being prepared is important.

First, have a plan

• First and foremost have a plan with the residents of your home where to meet outside the home should you have to leave quickly (as in fire, etc). If children are involved, practice this plan

What to put in an emergency grab bag— documentation

• Emergency Grab Bag of Documentation comprising of important papers (ask yourself "if I had to start life over, what would I need?"). This should be done for each person in the household, including children and pets. Make copies of all important papers/bills/documentation and put them in the largest ziplock bag (waterproof) and keep them in an emergency grab area BEFORE you will need them.
  
  Information can be coordinated into groups. Check off as you go along.

Contact Lists

– Your name, address, phone, and date of birth
– A list of children's names, birth dates and if in school or daycare, the name, address, phone number and name of contact person and/or      principal at the facility in case of an emergency. Do this for each child. 
– If adult children, list them with names (especially if females are married) addresses, phone numbers and relationship.You may know this      information, but in an emergency, others may not.
– List of pets names, vets, medical history
– List of emergency contacts including names, addresses, phone numbers and emails
– List of relatives to be notified with their names, phone numbers and their relationship to you
– Do Not Call list—many patient's families are not understanding and in fact, cause additional stress. This is a time and place to list the            relatives/friends not to call
– Name, address and phone number of attorney
– Name, address, phone of financial advisor, if applicable
– Name, address, phone and contact name at the bank you use

Legal Documents

– Copy of your social security card
– If disabled, disability papers whether social security disability, long term disability or supplemental disability insurance information
– Copy of the last year's tax return (needed to apply for loans and verify qualifications for income-based assistance etc.)
– Acceptable proof of citizenship for individuals not born in the United States (http://uscis.gov/graphics/formsfee/forms)
– Legal copy of will and power of attorney documents
– Copy of birth certificate, adoption papers, military discharge notice, marriage certificate, divorce decree or other legal documents
– Mortgage or homeowner papers with account numbers and phone numbers and amount paid
– Property tax statement
– Utility company statements (these may be needed for federal help)
– If a renter, have a copy of your lease with pertinent phone numbers, and management office name and number, if appropriate

Financial Information

– Should you have any investments including retirement (manyME/ CFS patients are dirt poor) a list of said investments as well as the            name, address and phone number of your financial planner or investment advisor
– Employer information and a copy of pay stub
– Bank names, addresses, phone numbers and account numbers with balance information
– Title or loan papers for automobile with bank name and account and phone numbers
– Charge card and debit card names, account numbers and phone numbers to call, and date of last payment with amount

Insurance Information

– Insurance information such as company name, phone number, agent's name and account number for home
– Insurance information such as company name, phone number, agent's name and account number for apartment
– Insurance information such as company name, phone number, agent's name and account number for car
– Insurance information such as company name, phone number, agent's name and account number for healthcare
– If you have any other type of insurance, include this information as well

Medical Information

– A list with names, addresses, specialty and phone numbers for all your physicians
– A list of all medications including over the counter drugs you take, along with dosages, MARK THIS LIST WITH A RED CHECKMARK to            facilitate finding it faster
– Medical history list—this can be an outline of surgeries, diagnosis and allergies. MARK THIS LIST WITH A RED CHECKMARK to facilitate          finding it faster
– Copy of your latest eyeglass prescription
– Copy of name, serial number and information of any medical assist devices in use
– Name, phone number and address of your pharmacy
– If applicable, hospital name and number with patient account numbers (you can always get another plastic card)
– For each child, duplicate the above list and ADD vaccination record
– For pets, include their veterinarian's name, address and phone number with vaccination papers and any medical issues if applicable

General Information

– Computer list of passwords (needs to be kept up to date) in a hard copy. You can back it up on a flash drive.
– Any computer files that are important can be put on a flash drive
– If you are a veteran, obtain copies of your Military DD214

Checklist of supplies that you should have readily available

Food and Kitchen Supplies:

• A number of foil pans
• A metal frame used to hold the pans (used for cooking)
• Several cans of sterno for cooking
• Manual can opener, preferably the type that uncrimps the can and leaves no sharp edges or food contamination
• Bottle opener
• Flame lighter
• Several books of matches or a box of kitchen matches (they are longer than books of matches) kept in a dry, waterproof container or a sealed plastic bag
• Box of zip-lock freezer bags in quart and gallon size—if possible, try to have the 2 ½ gallon size (made by Hefty brand)
• Heavy duty aluminum foil
• Canned food or dried food has a longer shelf life. Items such as tuna fish, cereal and black beans and items such as nutella do not need to be heated. Nutella is a chocolate spread that does not need refrigeration and can be found in the grocery store near the peanut butter. Spread on rice cakes, English muffins or toast, it is breakfast. Canned soup is also a good storage item. There are a number of single serving items which would eliminate the issue of what to do with leftovers. Fruit and pudding items such as applesauce, fruit cocktail, pineapple, chocolate pudding etc., come in either small cans or single serving sizes and do not need refrigeration. Various nuts have nutritional value and can be easily stored. Milk is available in either the dried variety, or boxed style. One variety is called Parmalat, which is an ultra pasteurized 100% cow's milk, and can be stored on a shelf for up to 6 months. There is always the peanut butter staple. Food bars are another item that can be stored. They tend to be a bit expensive, but can give you a boost when you really need it. Pay attention to expiration dates on everything including the water. Replace as necessary, or no later than 6 months. Label and date all food as you bring it in. If storing dried food such as cereal, pasta, or nuts, store in a plastic air-tight container to avoid rodent or insect issues
• Reusable cold compresses—if you keep several of these in various sizes in your freezer, other than the medical use, they come in handy if you need to toss them into the cooler.
• A cooler. The old fashion hard shell type works well (also works as additional seating) but the newer soft sided ones with the thermal insulated lining will keep things cold for a very long time. If a storm hits, and you lose electricity, throw the perishables into the cooler. You can use snow inside the cooler if you don't have enough ice. Should you lose electricity, do not repeatedly open your freezer or refrigerator door. Take out what goes into a cooler and then keep the door closed. Things could last 2-3 days this way. When cleaning out after the fact, if in doubt, throw it out.
• If you are diabetic or have other medical/nutritional needs, then it is important and necessary that you plan and make proper preparations ahead of time.
• Paper plates, plastic cups, forks, spoons and knives and napkins
• Mess kit
• Cooking utensils
• Small camp stove or gas grill used outside the home (also fuel for use)
• Several gallons of commercially filled water jugs per person and pet per day. If you fill containers yourself, make sure they are sanitized and use a food-grade container which can be found at camping supply stores. The Centers for Disease Control and Prevention (CDC) recommends at least one gallon per day but that is for drinking water only, not cleaning or bathing. If there is room to store 2 weeks worth of supplies, it is a good idea to do so.
• Fire extinguisher should be kept near or in the kitchen
  

Household Supplies:

• If possible, a gas-run generator. This is only applicable to single households, and not appropriate for individual apartments. Propane gas can only be stored in a garage or outdoors, NOT inside a home
• Extra toilet paper
• Extra paper towels
• Dishwashing liquid and /or bar of soap
• A large bottle of unscented liquid chlorine bleach for sanitizing and disinfecting water, should it be necessary. To sanitize containers, use 1 teaspoon bleach to one quart of water
• Medicine dropper—when diluted nine parts water to one part bleach, bleach can be used as a disinfectant. Or in an emergency, you can use it to treat water by using 16 drops of regular household liquid bleach per gallon of water. Do not use scented, color safe or bleaches with added cleaners.
• A large plastic tub and pitcher
• Flashlights in several places and certainly on each floor in a house. Hand-cranked flashlights don't use batteries and are an option. Best to have both types on hand.
• Battery-run radio with earphones, and/or small speakers
• Extra batteries for flashlights and radio (the batteries last longer if kept in the fridge when there is no power outage)
• Extra blankets and perhaps sleeping bags for warmth
• If at all possible, invest in a fleece blanket
• First Aid kit, same as in your automobile
• Hand warmers which when snapped, they heat up. In an emergency, they can act as a heating pad
• Roll of duct tape
• Plastic sheeting for making a shelter
• Scissors
• Flameless candles are now battery run with small LED lights
• Garbage bags and ties for sanitation needs
• A box of moist towelettes (these tend to dry out so keep current)

Medical Supplies:

• Compile all the medicines you take plus any over the counter items in one place such as a small bag. Stay on top of refills so you don't run out of an important medication
• If children are involved, you will need their medications as well
• Items duplicated from the automobile first aid kit
• Services, devices, tools and techniques you use to live with a disability
• Medical needs such as canes, crutches and walkers should have a name tag on them with identification
• Extra eyeglasses and/or hearing aids
• Medical alert tags (that you are supposed to be wearing)
• A written list of your medications and description of your illness so if you are unable to speak in an emergency, the information is available. This can be kept in your wallet or purse. This is in addition to the same information in your Emergency Grab Bag
• If you use a motorized wheelchair, have a light weight manual chair available for emergencies. Know the size and weight of your wheelchair, in addition to whether or not it is collapsible, in case it has to be transported
• Personal hygiene products and feminine supplies
• Deodorant
• Toothbrush, toothpaste and mouth wash
• Baby's diapers and baby wipes
• Baby powder—not just for babies. If your hair gets oily, dust a bit of powder on your scalp and brush through. It absorbs oil
• Cotton balls or cotton pads

General Supplies:

• Find out if you can subscribe to your town's emergency alert system. If so, list your cell phone number (provided it is charged and on) which means you'd get the alerts even if you are not home. Keep in mind cordless phones need electricity and only work with them plugged in. No electricity, no phone. It is a good idea to have at least one telephone that is wired
• Keep basic tools handy such as wrench, screwdriver and hammer handy in case of needing them to turn off water or gas lines, or building some sort of tenting.
• Create and keep posted a hardcopy (print off from computer, if that's where you keep information) of important contact information
• Keep handy a paper map of your local area. If everything is on your smart phone, computer or electrical device, and there is no power, then what?
• When severe weather or a snowstorm is forecast during the winter, have extra blankets at the ready, especially if outages are frequent. Invest in a simple zip-up sleeping bag that can handle low temp if blankets are not enough to keep you warm
• Invest in a set of thermal underwear-purchasing these items at the end of a selling season, often when they are greatly discounted, will save you money
• Keep a pad of paper, pen and pencil handy
• If you receive any governmental funds by mail, such as social security disability checks, consider arranging for direct deposit so as not to interrupt receipt of money. In a disaster or heavy snowstorm, mail can be delayed or stopped. Register for direct deposit at: www.GoDirect.org. You can also call your Social Security office to make arrangements
• For those who may not have a bank account, you can sign up for The Direct Express® prepaid debit card as a safe and easy alternative to paper checks. Call toll-free at (877) 212-9991 (phone), (866) 569-0447(TTY) or sign up online at: www.USDirectExpress.com
• If you depend on well water and a storm is forecast, fill your bathtub with water, along with several jugs of water—not for drinking, but to flush toilets
• If you have a baby or small child, make sure you have enough diapers, formula and supplies for them
• Try to keep some cash on hand in small bills ($10.00 or $20.00). In a power outage, the ATM's do not work. Put the money in an envelope and mark it "for emergency use only" and put it with important papers or your emergency grab bag
• If possible, keep a couple of small battery operated fans on hand. Purchase them on sale at the end of the summer selling season. If the electricity goes out in the summer, they could be a life saver
• Winter cleats such as Yaktrax that slip over your shoes or boots and keep you from slipping on ice. Such items can be found on the shopping channels, in the Walmart automotive section and possibly at Sears. This is a seasonal item so you will only find it in the winter selling season.

For folks whose lose power and have gas hot water heater and/or stove, it may be possible to light the pilot light on the hot water heater using a long handle butane lighter. Check with your manufacturer or a plumber. To light a gas stove pilot light, use the same type of lighter, turn on the gas slowly and light the pilot light on the stove. Do not put your face down into the stove to watch!

Snowstorms and hurricanes are common to our area. However, 2011 showed us we also have to be aware of tornadoes and earthquakes—2011 saw it all. Should the household have to be evacuated, for whatever reason, there are a few precautions CFS/FM patients, or any chronically ill person, should take. Since a timeline is not known for returning, the reasoning is better to be prepared and not need something, than need it and not be prepared.

In case of evacuation take-with items:

• Emergency Grab Bag of Documentation
• All your medicines in their bottles. Keeping them together in one spot helps the grab and go. For those who put out the medication in a weekly container, grab that container, but also take your bottles
• Computer and cables, flash drives of information
• Battery chargers for phone, computer, cameras, and if applicable medical devices which require batteries such as wheelchairs, hearing aids, etc.
• A complete change of clothing, extra tops for layering, underwear, long pants and socks and sturdy shoes
• If during the winter, take a warm coat, gloves, hat and scarves
• If in summer, take battery operated small fans
• Specific pillows, if needed
• Any medical devices that are used—i.e. cane, wheelchair
• Pets—if you have a pet, you will need to bring some food, snacks, leash, coat, medication if needed, etc., plus your pet. Your pet's medical information should be in your Emergency Grab Bag of Documentation kit
• If you have children and time allows, take some books, toys, crayons, paper, puzzles and games to keep the children entertained, as well as their favorite stuffed animal
• If you are in a shelter that has electricity, computer games or videos may be an option
• If you live alone, make a plan with support folks and/or friends and make sure someone you trust has an extra key to your place. Put their name and number in your Emergency Grab Bag of Documentation kit as a contact
• If you are a woman, then you know to grab your pocketbook, checkbook with checks and wallet
• Heating pad, if necessary along with an extension cord assuming there is electricity where you are going
• Any special foods you'll need
• Cash
• Identification such as a driver's license, medical insurance card, social security card, etc.

Although this looks like a long list, do a little at a time, and before you know it, it will be done. Start with the Emergency Grab Bag of Documentation, as that is probably the most important, next to your medications.

For additional generalized information, check out the following sources:

Information for how to deal with disasters and emergencies, as compiled by the CDC, Disaster Information for People With Chronic Conditions and Disabilities. 

A government website (sponsored by FEMA) offering a lot of valuable information for how to get ready for many weather-related emergencies such as Winter Weather survival.