- Last Updated: 24 November 2015 24 November 2015
A note from the Editors about the use of initials/acronyms in this article:
Most of the slides prepared by Dr. Kenneth Friedman, the guest speaker for the second part of this forum, displayed "ME/CFS" in reference to the illness. However, during their verbal co-presentations, Dr. Friedman and Dr. Gurwitt often used "CFS", which still designates the name most used in the medical research community, i.e. Chronic Fatigue Syndrome. Therefore, this summary will show both acronyms, relatively in sync with their use throughout this program. Elsewhere on this website the illness may be called CFS/CFIDS/ME, for Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome /Myalgic Encephalomyelitis. Similarly, MassCFIDS, a shorter, long-standing form of the Association's name, is frequently used in longer articles for clarity and brevity.
The Massachusetts CFIDS/ME & FM Association (Mass CFIDS) held its Fall 2011 educational forum, co-sponsored by the Massachusetts Department of Health, on November 5, 2011, at the UMass-Hinton State Laboratory Institute Auditorium in Jamaica Plain, MA. The second segment of this forum focused on developments and discussions from the September 2011 International Association for Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (IACFS/ME) Conference held in Ottawa, Canada, which could have considerable impact on ME/CFS patients. The guest speaker, Dr. Kenneth Friedman, and Dr. Alan Gurwitt, president of MassCFIDS, shared the presentation and spoke about these topics with insight, conviction and optimism.
Dr. Friedman, a recently retired Professor of Pharmacology and Physiology from the University of Medicine and Dentistry of New Jersey, is a fervent and outspoken advocate for CFS, a working member of the IACFS/ME, scientific advisor to several ME/CFS patient groups, and a longstanding friend of Mass CFIDS.
Dr. Friedman briefly described how he became involved with CFS and the Association many years ago. While his daughter was attending Tufts University, during the early 1990s, she came down with infectious mononucleosis and eventually went on to develop CFS. He spoke appreciatively about the information and support that he and his daughter received from the Association during that difficult time.
Dr. Friedman singled out developments and studies from the Ottawa conference which he considered to be important to ME/CFS patients, not only from a research standpoint, but also their impact on patient care. The key points in Dr. Friedman's lecture (taken from the slides that he had prepared for this forum) are as follows:
- Is it time to get beyond ME/CFS case definitions?
- Should we use exercise testing in lieu of a biomarker?
- Investigating the efficacy of anti-viral and antibiotic therapy
- Stepping up to the plate by the Private Sector
Is it time to get beyond ME/CFS case definitions?
Dr. Friedman started by drawing attention to the uncertainty and debate which now surrounds the three most popular case definitions for CFS, ME or ME/CFS. As chairperson for the session on "Case Definitions for Research and Practice" at the Ottawa conference, Dr. Friedman noticed some researchers/clinicians were unsure about the case definitions or not in agreement with each other, while others sought ways to get beyond these case definitions.
He thought some researchers were positively influenced by the approach being taken by Dr. Leonard Jason at DePaul University in Chicago, IL. In order to arrive at the most suitable definition for the illness, Dr. Jason focused on identifying the most appropriate features in the illness and identifying the most appropriate case definition and criteria for CFS. (At the Ottawa conference, Dr. Jason's study described a statistical technique, data mining, which was used to help determine which questions and items would provide the most effective data).
The use of Electronic Medical Records (EMR's) affords a practical way to record and characterize patients' symptoms along with other relevant information. Patients' medical data could be compared to case definitions or other data along an infinite array of parameters. Dr. Friedman stated that the technology exists and it continues to become increasingly more accessible.
So, it would be possible to assess patients in this manner and determine if they met at least one the case definitions. Furthermore, he thought that if the patient would meet "one or any" of the illness criteria, that would suffice.
What Dr. Friedman described was the relationship of case definitions, EMR's and patient registries that could lead to a system with many possibilities for ME/CFS research.
Another approach that could help facilitate diagnosis of ME/CFS and selection of treatments, would be the switch from the "single definition/single cause" model to one that supports subsets.
Dr. Friedman made the analogy of ME/CFS to breast cancer, to the extent that breast cancer is described not as a disease but a category of disease in which there can be multiple types of breast cancer (or subsets). In this approach, treatments will often depend on the specific type of cancer that the individual patient has.
Dr. Friedman mentioned how this model for breast cancer was recently reviewed on the Doctor's Radio, a satellite radio station, which led him to see this as a viable and appropriate strategy for ME/CFS. There already exists considerable evidence to support multiple causes and subsets in ME/CFS, and the benefits that patients would gain from more individualized treatments is obvious.
Should exercise testing be used in lieu of a biomarker?
There is also debate over the expressed need for a biomarker-that is, in order to confirm the illness in patients, a biomarker must be found. Dr. Friedman proposed the consideration of exercise challenge tests for their proven ability to measure and identify distinctive features of ME/CFS.
More specifically, exercise testing like the Stevens Protocol (i.e., the method developed by Staci Stevens at the University of the Pacific, Stockton, CA) has effectively detected multiple abnormalities unique to ME/CFS and objectively measured the reduced ability of ME/CFS patients to perform exercise and certain activities (i.e., those needed for sedentary work or activities of daily living).
Exercise testing can induce postexertional malaise (PEM)-now being recognized as the hallmark symptom of ME/CFS, and then it can quantify the effects of PEM on the patients' functional capacity.
As a result, this method is able to confirm the presence of this illness in patients. Having a tool available that could confirm or document ME/CFS could also facilitate the disability review process, and possibly accelerate the approval of the applicants and the release of their benefits. Dr. Friedman empathized with patients in how this is often a long and difficult process.
Furthermore, this type of tool could help to demonstrate efficacy of potential treatments, especially those which require FDA approval (i.e., Ampligen was mentioned as one treatment that needs to be pushed through). Therefore, Dr. Friedman has recommended the acceptance and utilization of exercise tests as a valid protocol in lieu of a biomarker.
Investigating the efficacy of antiviral and antibiotic therapy
Going beyond anecdotal evidence for use of antiviral or antibiotic treatments, several research papers at the Ottawa conference reviewed positive responses to antiviral therapy and antibiotic therapy in CFS—in particular, for those patients who had high antibodies to enteroviruses or in CFS precipitated by the Epstein Barr Virus (EBV).
Dr. Jose Montoya (at the Stanford School of Medicine, Palo Alto, CA) has been studying an antiviral regimen which he has developed for treatment of ME/CFS, but the actual protocol has had limited circulation. Dr. Montoya has agreed to prepare a paragraph for inclusion in the IACFS/ME Physician's Primer which suggests that an approach and rationale could (and perhaps, should) be developed for the use of particular agents for ME/CFS patients who demonstrate particular viral loads.
The efficacy of treatments with antivirals or antibiotics needs to be further investigated. It also needs to be determined what would prompt a well-planned, carefully executed clinical trial.
A study showing positive response to antibiotic treatment in ME/CFS was presented by Dr. Sam Shor, from the Washington, D.C. area. Dr. Shor placed his ME/CFS patients on the same treatment regimen—a combination of multiple, long-term antibiotics—which he used for his chronic Lyme Disease patients. Patients with ME/CFS met the international case definition and were negative for Lyme Disease (LD).
Improvement of symptoms was found in 66% of ME/CFS patients even though they were seronegative for LD. Several possible interpretations of these results, according to Dr. Friedman, would be: 1) the possibility of these CFS patients having LD, 2) viewing the improvements as potentially due to the immunomodulatory effects of the antibiotics, or 3) an infection that could be at the root of their CFS was responding to the treatment.
Similarly, a Norwegian study discovered that a cancer agent, rituximab, had reduced symptoms of CFS, raising the same questions with regard to that drug's immunomodulatory effects. Dr. Friedman explained these agents work on the same system (the immune system) and felt that research of drugs with these particular properties would be worthwhile for ME/CFS.
Stepping up to the plate by the Private Sector
Dr. Friedman wrapped up his presentation with very encouraging news about several new private initiatives which are being set up for CFS research. He reported there were now three non-federal funded sources for ME/CFS research:
- the Whittemore Peterson Institute (WPI) which is well recognized by the ME/CFS community
- the Chronic Fatigue Initiative, Inc. (CFI), an organization funded by a $10 million donation from a private family (the donation will be used on multiple CFS studies, after investigators determine "critical" questions and areas in ME/CFS research)
- the Simmaron Research Foundation, an organization of friends and patients of Dr. Daniel Peterson that will donate an as-yet-to-be-determined amount of money to support Dr. Peterson's research done in collaboration with other research groups.
Developments in pediatric ME/CFS
Dr. Alan Gurwitt was particularly interested in news and developments in pediatric ME/CFS and had attended a workshop on the same, chaired by Dr. Miike from Hyogo, Japan. Dr. Gurwitt was pleased to see that the workshop was very well attended by researchers and clinicians from literally all corners of the world. He found this most encouraging, given the shortcomings in pediatric diagnosis and treatment during earlier years.
Diagnosing pediatric ME/CFS
Evaluating children with CFS has been a challenge for quite some time, especially since the 1994 U.S. Fukuda criteria was developed for adults and adult manifestations of the illness. It was really not adequate for use in children and adolescents, explained Dr. Gurwitt.
Approximately 6 years ago, an international group of ME/CFS researchers and clinicians was formed and they co-authored criteria specifically intended for children called, Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (Dr. Leonard Jason, et al).
He stated there are differences in the characteristics of CFS between children and adults. In particular, children tend to have more abdominal pain and rashes.
Lack of understanding of ME/CFS in schools
Part of the pediatric criteria includes references that could be used by school personnel. However, Dr. Gurwitt finds that schools still show limited knowledge and understanding about CFS in children and their tendency is to suspect "school phobia" in children ill with ME/CFS.
At the workshop, he discovered the situation was not much better for children with ME/CFS in many other countries. Another terrible situation faced by some families has been the faulty accusation of Munchausen syndrome by proxy (i.e., the child's illness is assumed to be fictitious and to be caused by the parent or parents).
Dr. Gurwitt is very disturbed by such occurrences of pure ignorance and undue hardships to families, and urged action by ME/CFS organizations to find ways to educate physicians and school personnel in how to distinguish phobias from legitimate illness such as ME/CFS.
Precipitating events in pediatric ME/CFS
The pediatric workshop reported a variety of news, such as how infectious mononucleosis was found to be a fairly common pre-illness event in children and youth who developed CFS (i.e., in about half of the cases); in some cases, immunizations were thought to be the precipitators of CFS-like conditions (i.e., no particular vaccines were identified but Dr. Nancy Klimas is working to clarify this); mold exposure was reported by some families as another CFS trigger; and Japanese researchers identified chronic sleep deprivation in children and teenagers as a major precipitator of CFS. Children as well as adults in Japan appear to be at a higher risk for sleep deprivation.
Melatonin was the sleep agent most used in children. Though Ritalin was used fairly often, many researchers/clinicians are quite concerned about its use in children with CFS. The Japanese research group described an intense treatment regimen they created for children/youth with CFS, which usually included hospitalization and intensive sleep-wake circadian rhythm treatment to help restore their circadian rhythms—good results were reported on improvements made with their sleep disturbance, but not of all their CFS-related symptoms.
Dr. Katherine (Kathy) Rowe was recognized for the program that she had helped to develop and implement at the Royal Children's Hospital in Melbourne, Australia. Dr. Gurwitt described the Australian program as being "sophisticated and methodical" and unlike anything that other countries are doing.
This program has followed close to 800 children (pediatric patients) for over 15 years, which has allowed them to create a history of the illness. The extensive information collected at scheduled intervals throughout this period of time included duration, recovery, education, work, treatments/diets, and other events and changes in these patients' lives. Although the average duration of illness was 5 years, this level of follow-up and ongoing support continued for many years.
The Australian program requires that new patients undergo a very careful evaluation for ME and the evaluation process include the parents-both parents, with a special emphasis about not leaving fathers out.
Once a diagnosis has been made and appropriate treatments started (i.e., standard medications or therapies), other interventions also include family counseling, maintaining close contact with schools, and helping with necessary adaptations for the patient's/student's educational needs.
A brief, informal overview of the Physician's Primer
Both Drs. Friedman and Gurwitt informed the audience that the IACFS/ME Physician Primer was nearing completion and its release is expected during early 2012. A few things which they could share about the Primer, at this time, was why it was created, who it is intended for, what is its purpose, and its content (in a very general sense), as follows:
- it is a practice manual, written by a group of physicians, specifically for primary care physicians so they would have the necessary information to be able to diagnose ME/CFS
- it offers specific treatment recommendations, informs a physician of his/her responsibilities to the patient, and makes recommendations when it is appropriate to refer the patient to specialists
- it is geared for adult patients and does not include any information for pediatric care, but future plans are to compile a pediatric version
- it will be recommending the Canadian Case Definition for ME/CFS and it will not be using the 2011 International Consensus Criteria for ME because it is new and not clear how it will compare or do clinically (referring to what Dr. Friedman mentioned earlier in his presentation)
Drs. Friedman and Gurwitt reiterated the Physician Primer is a concise, very dense and highly technical handbook-for physicians and not intended for patient use.
When the IACFS/ME is ready to release the Physician Primer, MassCFIDS will send out an announcement via our E-newsletter and post the news on the website.
Advocacy—its importance and its impact
What is MassCFIDS? was the title of a report prepared and presented for members and guests in attendance by Ms. Charmian Proskauer. Since MassCFIDS was founded and registered as non-profit charity 501(c)3 organization more than a quarter of a century ago, many newer members and guests have asked to learn more about its past, current work, and future goals.
MassCFIDS is the short name for the Massachusetts CFIDS/ME & FM Association. Fibromyalgia (FM) was added to the Association's mission (and name) during the 1990's. The history of the Association is available on the website, under the topic "History of the Association."
MassCFIDS has an all-volunteer Board (currently of 14 members) which holds bi-monthly meetings. Officers are elected from within the Board. All the work of the Association is done by volunteers.
Ms. Proskauer shared with the audience how she had been initially recruited several years ago to help create a new website for Association. Eventually, she was elected to the Board and now oversees several committees. She also spoke about her desire to become an advocate for the illness; she is a family member of someone who has CFS. Finding herself with a little extra time, she wanted to work with others towards something that would make a difference-the Association fulfilled this need.
MassCFIDS is the oldest patient-run CFS organization in the country and its mission has remained the same, although the organization has evolved over time. Our members and volunteers continue to work and advocate for patients and their families in many ways: conveying information through the website and an E-newsletter; responding to questions by emails or phone calls; providing community outreach/patient services; speaking out (or writing) on issues which may negatively impact patients; and sponsoring educational events.
A note about the patient and/or patient's family contacts we receive—70% of these are requests for services and 2/3 are for physician referrals. To be able to provide patient outreach and programs, it is important that we continue to build up our membership; but there is also strength in numbers which really matters when it comes to advocacy.
Dr. Gurwitt and Ms. Proskauer echoed the same message—the impact of advocacy may not be immediately realized, but it can have a far-reaching effect and pay off in many ways. Statistics collected on the Association's website traffic reveal the extent of its global reach-during the past 12 months there were 20,000 unique visitors from 151 different countries.
The video of Dr. Anthony Komaroff's April 2010 lecture has been viewed from around the world and translated into 4 languages. It has served as a catalyst for important advocacy initiatives, like those embarked on by the Norwegian health ministry.
The Association also played a direct role in helping Japan form its first national ME/CFS conference.
It maintains close contact with the CDC, through Dr. Elizabeth Unger, and overall, it has shown a good, strong reach into a lot of areas, concluded Ms. Proskauer.
MassCFIDS will evaluate on-going advocacy initiatives, participate selectively, and provide opportunities for patients AND their family members, relatives or friends to participate. Our goal is to expand advocacy in Massachusetts.
- 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
- 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.
– 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
– 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
– 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 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
– 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
– 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
- 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
- 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)
- 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
- 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
- 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
- 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.
- Last Updated: 24 January 2016 24 January 2016
The Massachusetts CFIDS/ME & FM Association held its Fall 2011 educational forum, co-sponsored by the Massachusetts Department of Health, on November 5, 2011 at the UMass-Hinton State Laboratory Institute Auditorium in Jamaica Plain, MA.
The meeting was a review of research and other content from the September 2011 International Association for Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (IACFS/ME) Conference held in Ottawa, Canada. The written summary is in two parts.
Part 1: Dr. Anthony Komaroff’s review of the conference highlights (presented at the meeting on audio, with accompanying slides)
Part 2: Dr. Kenneth Friedman and Dr. Alan Gurwitt spoke about other studies, news and developments.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.