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. 

Summary of the Massachusetts CFIDS/ME & FM Association Fall 2011 Educational Forum

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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.

MassCFIDS 2011 Fall Meeting Highlights Part 1: Dr. Komaroff's Summary of IACFS/ME 2011 Meeting

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Last Updated: 24 November 2015 24 November 2015

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. Review of research abstracts from the September 2011 International Association for Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (IACFS/ME) Conference held in Ottawa, Canada was presented in two segments: Dr. Anthony Komaroff’s review of the conference highlights (on audio, with accompanying slides), while Dr. Kenneth Friedman and Dr. Alan Gurwitt spoke about other studies, news and developments (their presentation will be released as a separate article, due to the length and depth of content).

As always, Dr. Komaroff’s summary of the IACFS/ME meeting highlights was most informative and articulate, and the Massachusetts CFIDS/ME & FM Association is deeply appreciative of Dr. Komaroff’s continued interest and support of our educational programs in giving us permission to replay this material.

The following article reviews studies selected by Dr. Komaroff which he felt had represented some of the more intriguing and provocative areas of research, as listed:

Epidemiology
Virology
Immunology
Exercise challenge studies
Studies of the brain
Gene structure and expression
CFS multi-center research initiatives

Epidemiology

Long-term ME/CFS

A long-term study done by Dr. Leonard Jason, from DePaul University in Chicago IL, helps to answer the question of what is the longer term history of CFS. Data gathered for 213 patients, over a period of 15 years or longer, showed that 67% of individuals continued to fit CFS criteria; some who initially had idiopathic chronic fatigue, went on to develop full-blown CFS; and half of those who no longer had CFS, still had fatigue. Dr. Komaroff explained this suggests there is a continuum between full-blown CFS, idiopathic chronic fatigue, and normal health. Thus over time, some patients move back and forth between these categories. This study confirms that CFS is a chronic illness and in adults, it can persist for decades.

Understanding of ME/CFS by the medical community and the public

Two studies conducted by Dr. Elizabeth Unger, from the Centers for Disease Control and Prevention (CDC), show improvement in the overall recognition of CFS by the medical community and general public over the past 20 years. The first study focused on health care practitioners. Of the 2,000 surveyed, the majority of them (94%) had heard of CFS; 37% reported they had personally diagnosed cases of CFS in their practice; and about 14% of them still thought CFS was a psychiatric condition.

The second study surveyed 4,200 U.S. citizens. More than of half (57%) reported they had heard of CFS, while only 2% of the public still believed it was a psychiatric condition. Dr. Komaroff said that when thinking back to the first international CFS conference held in 1992, this data demonstrates substantial change in awareness and knowledge of CFS.

Virology

Enteroviruses 

One of the poster presentations made by Dr. John Chia and his son, Andrew Chia, demonstrated that enteroviral infections were frequently found in CFS. Their research confirmed enteroviruses (EV) in the tissue samples taken from 132 consecutive stomach biopsies of CFS patients. (Some of these patients also had gastrointestinal symptoms). The majority of CFS cases tested positive— 82% had viral protein and 64% had viral nucleic acid, while EV was found in only a small fraction of controls (i.e., 10% or 4 of 40 controls).

In addition, when biopsied material that looked like it contained viral antigens and proteins was injected into animals which were later checked for replicating virus, many of them revealed production of antiviral proteins and antibodies to the EV. The importance of this study, according to Dr. Komaroff, was that the Chias’ research suggests EV may play a central role in this illness.

XMRV and pMLV false-positive results came from contamination

Topics of utmost interest at the Ottawa conference were xenotropic murine leukemia retroviruses (XMRV) and polytropic murine leukemia viruses (pMLVs), especially since the results of the multi-laboratory XMRV/MLV study were being published by Science at the same time. Dr. Komaroff briefly touched on the differences in research findings, from the original data published by Whittemore Peterson Institute (WPI) to the final results of the Blood Working Group Study.

Two years ago, WPI came out with some remarkable information: a significant percentage of CFS patients were found to have viral nucleic acid and viral antigen to XMRV; that the virus could be cultivated from patients’ plasma and cells; that antibodies to the virus were found in CFS patients; and moreover, that some of the healthy blood donors had also tested positive.

A second study by scientists from the National Institutes of Health (NIH) and Food and Drug Administration (FDA) only looked for XMRV viral nucleic acid, which they failed to confirm. However, they detected MLV-related virus in CFS. Many laboratories around the world tried to repeat the studies, but results came back negative and/or with inconsistencies. A large replication study was established to verify these findings. The research was spread across 9 highly reputable laboratories that conducted blinded testing of blood samples from a large CFS patient group, including those which had previously tested positive for XMRV or pMLVs. But the results were negative.

False positives of XMRV /pMLVs are now attributed to contamination of laboratory reagents and commercial reagents with mouse DNA. Dr. Komaroff indicated that XMRV was an accidental laboratory recombinant virus, going back to the early 1990s and considered this finding in itself as troubling, because quite a few people developed CFS many years prior to this incident.

Various cell lines were also found to be contaminated with mouse DNA and this contamination is considered to be widespread, affecting many laboratories around the world. In view of these results and developments, Dr. Komaroff regards XMRV/ pMLVS research to be on very “shaky grounds.” 

Immunology

NK-cell function in ME/CFS—conflicting results?

Most previous studies on Natural Killer (NK) cell function had shown reduced function in CFS patients. However, two studies presented at the Ottawa conference came to two different conclusions. One study confirmed impaired NK cell function in CFS/ME patients which may be related to alterations in cytokines and reduced immune function in patients with CFS (EW Brenu). The other study found that NK cell function was higher in patients while they were acutely ill and during a period of time following the active infection (B Katz).

Dr. Komaroff thought this was quite feasible because if a viral infection is believed to trigger this illness, which applies to many but not all cases, then NK cell function could increase during the initial phase of infection and remain relatively stable, for a while, immediately after an infection. But when patients become chronically ill and NK cells are repeatedly activated to protect the body against viruses and other pathogens, this could lead to an exhaustion of NK cell function response (i.e., what is commonly seen in full-blown, persistent CFS).

Exercise challenge studies

An exercise challenge study is actually a set of maximum exercise tests (i.e., in this case, not an elaborate technique, but a commonly used test in clinical settings for decades) that is conducted 24 hours apart and can measure post-exertional malaise. Dr. Komaroff regards work done by Betsy Keller in this field to be provocative and valuable because it is able to demonstrate significant changes between the first and second exercise tests, such as decreased work capacity, decreased heart rate, lower anaerobic threshold and lower functional capacity. After the second test, post-exertional malaise brought significantly reduced functional capacity—below that which would be typically needed for many sedentary jobs and daily living activities. Exercise challenge tests, in Dr. Komaroff’s opinion, suggest a way that post-exertional malaise could be documented for a variety of needs.

Studies of the brain

Dr. Komaroff remarked that many interesting studies of the brain were presented at the conference, even though he did not go into too much detail on these. Some of the many brain abnormalities included reductions in grey matter and white matter (IH Treasaden) and decreased activation of basal ganglia (i.e., typically in the caudate and globus pallidus) in CFS and other fatiguing, neurological illnesses using advanced functional magnetic resonance (fMRI) techniques (AH Miller).

Other remarkable research alluded to by Dr. Miller (not part of the abstracts presented at the conference) was the ability to experimentally induce fatigue and reduce activation in basal ganglia, in humans, with the infusion of pro-inflammatory cytokines. Symptoms of CFS have long been associated with pro-inflammatory cytokines produced in, or getting through the brain blood-barrier, and into the central nervous system.

Another study of the brain assessed blood flow in patients with CFS, those with major depressive disorder, and healthy controls. Cerebral blood flow to certain regions of the brain was notably reduced in CFS when compared to healthy controls and no significant differences were found in values between CFS and major depressive disorder (JP Dyke).

Though this pilot study was felt to be intriguing, Dr. Komaroff said it needs to be reproduced, because a small study like this is prone to the beta error problem (i.e., the problem in finding real differences in small studies is difficult). The measurement of tissue blood flow in the brain has greatly advanced, and this technology is now widely available and may allow for better assessment and treatment of patients. But how this technology will be ultimately used needs to be worked out.

Gene structure and expression

Do people with CFS have differences in the way their genes are built—from inheritance— compared to health controls? Is there a difference in which genes are “turned on” (expressed)? Is there a relationship between these differences and the underlying biology of this illness?

Dr. Komaroff reviewed a selection of genomic and genetic research presentations from the Ottawa conference which exemplify how this science and tools can help to identify patterns unique to CFS.  It is important to note many other fields are using gene expression patterns/results in their studies to evaluate CFS compared to healthy controls or other illnesses.

Gene structure

Gene structure in CFS was assessed by Dr. M.S. Rajeevan, with the CDC, by using community-based samples and comparing these to healthy controls. This study reported polymorphisms in genes that are involved in the immune response—more specifically, complement cascade, chemokine production and toll-like receptor signaling—which were different in CFS patients. Basically, this study demonstrates how changes in gene sequences detected could determine that these genes played a role in innate immune response.

Dr. Lea Steele, at Baylor University, combined an epidemiological study with molecular biology, and identified two polymorphisms that reduced the body’s ability to degrade nerve gases and pesticides, respectively. These polymorphisms were found to correlate strongly with the presence of Gulf War Syndrome in individuals who had been military personnel exposed to those environmental toxins, and not in those unexposed. Steele’s study also showed a dose-response relationship with homozygotes of these polymorphisms had a clearer, more severe form of GWS compared to heterozygotes (per Dr. Komaroff’s IACFS/ME Meeting Highlights PowerPoint slides on Gene Structure). Dr. Komaroff remarked that it remains to be seen whether these results in GWS will have any relevance to CFS/ME or Fibromyalgia.

Gene expression

A mini primer on gene expression, prepared by Dr. Komaroff, was helpful in getting across the basic aspects of this science, in this way:

Genes are only important if they are “expressed”, or “turned on” and are making messenger RNA.  The central process can be stated as follows:

DNA→ makes messenger-RNA (mRNA)→ makes Protein.

DNA not only makes full-length genes but also makes tiny microRNAs, which feed back on specific mRNAS and interfere with protein production. Consequently, they block protein production—the result is they “turn off” the gene.

A method of detecting gene expression is using a tool called microarrays, which allow for extensive analysis of many genes at one time (up to 22,000). This technique makes it possible to take a tissue and be able to tell which genes are turned on and off. Microarray tests are performed on silicone chips, and when a gene sequence finds its complementary match on the chip (when there is a fit), they will light up—the patterns of genes that are “turned on” help to make many inferences about what is going on.

Gene Expression studies

The importance of gene expression can be demonstrated in this preliminary study that had found 6 miRNAs to be substantially down-regulated in both NK-cells and CD8+ cells in CFS patients, compared to healthy controls. These cells play a critical role in antiviral activities and have been shown to function defectively in CFS in previous studies. These miRNAs regulate the expression of genes involved in cell cycle regulation, apoptosis, and toll-like receptor expression (EW Brenu).

An exercise challenge test, conducted at University of Miami, confirmed an enhanced alteration in the expression patterns of a group of genes, as previously found in ME/CFS by Dr. John Kerr from the U.K. (i.e, the Miami study used the Kerr ME/CFS platform to evaluate gene expressions). The genes that were altered are those which play important roles in antiviral defense, mitochondrial function, and immune activation. The same changes were not seen in healthy controls or patients with Gulf War Illness. (L Garcia)

Dr. G. Broderick used data from Dr. Katz’s study of adolescents with infectious mononucleosis and post-mono CFS, and his study could identify biological pathways that are up-regulated or down-regulated. Children with post-mono CFS had 5 signaling pathways with altered activity, most notably, the phenylalanine metabolic pathway which was down-regulated. Patients with greater down-regulation had greater fatigue—a “dose-response” relationship (Broderick, Katz, Taylor).

Dr. Lucinda Bateman presented research done by Dr. Alan Light and Dr. Kathleen Light that looked for changes that exercise would make in gene expressions, in patients with CFS, CFS and Fibromyalgia (FM), FM only, Multiple Sclerosis (MS), and in healthy controls. (CFS and FM patients used in this study were referred by Dr. Bateman, clinical collaborator.)

Dr. Bateman reported that both patient self-rated and physician-rated symptom severity correlated with greater post-exercise increases in these genes. However, a subgroup (about 30%) of patients did not demonstrate such gene expression changes and the clinical clue for difference was the history of orthostatic intolerance in this subgroup. Results seen in CFS patients were not seen in healthy controls, FM only, or MS.

CFS multi-center research initiatives

The good news is there is a movement by key federal health agencies and other facilities/organizations, to better coordinate and collaborate research efforts, as shown below:

• CFIDS Association clinical and laboratory database
• NIH-funded multi-center study, centered at Columbia University
• CASA—Initiative of the NIH and CDC to develop common instruments and strategies for multicenter CFS research studies
• Chronic Fatigue Initiative—Multicenter initiative to discover possible pathogens and mechanisms of disease

More resources

For more information about recent and previous developments surrounding XRMV, please see the following links:

XMRV Not Found in Blood Working Group Study The multi-laboratory study results published in the journal Science of September 22, 2011

XMRV Update Link providing a very comprehensive timeline and overall picture of XMRV research

Tips for Traveling if you are an ME/CFS or FM Patient

Details

Last Updated: 12 July 2023 12 July 2023

Traveling can be a challenge, but for the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) patients, it can be both a challenge and stressful. The key is to be as prepared as possible. Allow yourself extra time to plan and review your schedule several days prior to departure so it is as clear as possible. Plan rest periods into the schedule.

Use the schedule (on your person) as a reminder of upcoming activities since this will help reduce any stress of anticipation and anxiety. It helps to minimize any possibility that stress will bring on some health crisis that could prevent the trip altogether.

If traveling by air, purchase trip cancellation insurance and keep phone numbers of the hotel handy so you can quickly cancel if necessary. This will help reduce anxiety.

If you are traveling with family or friends that may not understand ME/CFS & FM, be clear that demanding, yelling or giving you orders will not quicken your response, but may actually slow you down.

Many patients don’t like to tell others they have an illness. Any attempt to keep up a front under a stressful situation is a fool’s folly. Make sure you can actually travel with your companions without doing harm to yourself.

Start your trip with paper and pen

The first step to being organized is making a list of what you’ll need. Take a pad of paper and start the list at least a couple of weeks before the planned departure. Every time you think of something, write it down on the same piece of paper. Writing things down on different scraps will add to your stress. Do not think “I’ll remember it” and write it down later. The chances of that happening are close to zero.

Whether the trip is a weekend or 2 weeks really won’t matter. You will still need to pack the “I use it every day” type of items and medications, but you’ll also have to pack the “if I get sick I’ll need” type of stuff. Those items are readily handy when you’re at home. When away, if you need them, it becomes a problem. The only difference it makes in packing will be the amount of clothing needed. ME/CFS & FM patients travel with “stuff.”

The best tip is to open the intended suitcase and start putting the items on your list in it. If you don’t have room to keep an opened suitcase around for a couple of weeks, then pick one designated spot for a landing zone, and deposit items there.

This way, "take with me" stuff won’t get confused with other items and you’ll reduce the stress of last minute rushing. Items that are used everyday and can not spend two weeks hovering in an opened suitcase can be deposited a couple of days before you leave.

When you use the item, put it back in the suitcase. This reduces the risk of forgetting something you really use daily.

Medications need to be at the top of your list

It is a good idea to write down all the medication and dosage you take (should you have more than the one or two you can remember). Put the date with your name, address and phone number at the top. If you have a number of allergies, list those as well. On this sheet, write down your doctor’s name, address, phone number and any emergency contact numbers s/he has given you, so it is readily available.

If using prescription medications and you plan to travel by plane, bring the medication in the bottle in which it came. If possible, travel with extra dosages of medication in case your return is delayed.

It would be wise to have the prescribing physician write a brief letter (to whom it may concern) to the effect that you are under this doctor's care and your treatment consists of: product A, B, C and D (especially if these are controlled-substances / Schedule II type meds).

It might help if you put your tickets, travel schedule, your medication list, your doctor’s letter and your doctor’s information into one envelope so all papers are together and keep this information on your person. Packing a duplicate copy of the same in your luggage would not hurt.

Many patients are not able to get out of bed, or, out of their neighborhood. If you are fortunate to travel overseas, discuss your trip with your doctor so s/he can provide other tips.

It is a good idea to check with travel guides (i.e., books or a reliable website) or review requirements for the countries of destination to double-check what is prohibited or restricted. Some countries won’t allow your prescribed medications, let alone “extras”.

Other necessities to check and pack

If you wear eyeglasses or contacts, it is a good idea to have a printed copy of your prescription, especially if you can’t see without your glasses. If you have an extra pair, take them along with your medications in your carry-on. Glasses and other personal items should go with you and not in luggage, if not restricted.

If you use a special heating pad, back, neck, wrist or leg braces, ice packs, canes, etc. or any medical “accessory” take those with you.

Make sure you pack any chargers you may need such as your cell phone charger and/or computer charger.

Think of the items you’ll need that you do not use on a daily basis and ask yourself “what if I need this?”

Planning can reduce stress. If you’ll need more items than allowed in luggage, consider sending a package UPS or Fedex to your destination ahead of time. If staying at a hotel, contact the facility ahead of your arrival and make arrangements for them to hold the package. Just be clear on what their rules are. Don’t assume anything.

Before taking off into the friendly skies

For air travel, if you are disabled, you may be entitled to certain allowances. Check with the airline. Plan to get to the airport with plenty of time in order to reduce stress.

If you need a wheelchair to get from curbside to the gate and are relying of the airline supplying it, allow extra time. Some airports have the airlines’ personnel doing transport, and some airlines use a contractor. It pays to ask.

Check with your airline regarding luggage restrictions and additional costs. You are no longer allowed to bring your own water or drinks on a plane, but you will be able to purchase something in the secure area prior to boarding. It is a good idea to do so.

For carry on restrictions, check with the airline. With the TSA limits on liquids to three ounces per bottle, pay attention to sizes if carrying liquid medications such as cough syrup. Many companies now sell their products in travel sizes such as shampoo, conditioner and mouth wash. Make sure your carry on meets requirements both in size and weight and follow TSA rules.

Currently, all medications and health/beauty items need to be packed into a single, quart-sized, zip-top plastic bag (usually one bag per person). Pack non-essential items in your checked luggage but check with your airline for any additional surcharges on checked luggage.

Go the restroom a few minutes prior to boarding. Ask the agent when they will announce the boarding and judge accordingly. For landing, normally, the plane starts its descent about 45-60 minutes prior to landing. Again, go to the restroom before the seatbelt sign comes on and it is too late. It just takes awareness and planning. If you are making a one hour flight, there will not be enough time to visit the restroom on board and/or weather conditions during your flight might limit getting up when you need to.

If you need to pre-board a plane, make sure you have a letter from your doctor stating your needs and that you need to pre-board and why. Rules have tightened since 9/11 and no longer can you just ask to pre-board.

Since many patients have issues with body temperature control, plan to dress in layers. Airplanes have recycled air so it may be helpful to take precautions such as taking vitamin C if it works for you.

Any special diet considerations, such as sugar-free or gluten-free, must be accommodated. Make sure you have something to eat with you, not in checked luggage. Should there be any delay in your travel or it takes longer than anticipated, you will not have to walk miles to find something to eat.

Have readily available your tickets and boarding pass as well as any directions or maps you’ll need upon arrival.

If traveling by rail, bus or car

If traveling by train, make sure either you or a friend can get your luggage on board. Don’t rely on porters because when you need one, they may be scarce. This is where arriving early and letting train personnel know you’ll need help may pay off.

Increased screenings or random inspections at train stations or onboard trains are fairly common, sometimes even using K-9 units. Don’t get upset or worried about these measures, as they are being conducted to ensure everyone’s safe travels.

Many trains run into delays, especially along the northeast corridor from Boston to Washington. To reduce stress, have appropriate clothing, food, drink and medications with you. A smart idea is to travel with a neck pillow and a good book or magazine.

Going by bus might best suit your budget, some offer a small senior discount, but it can be noisy. Some patients have noise pollution issues so here it may be a good investment to have headphones, whether to block out noise, or pipe in music to your ears. As you do so, remain alert and keep your belongings close-by, since many passengers will be getting on and off.

Whether plane, train or automobile, make sure you get up and either walk around a couple of minutes every hour or so, or stop at a rest area every hour or so. This will help reduce the pain FM patients feel from being in one position too long. If going by plane on a long flight, stretching, finding ways to move around and doing frequent but simple exercises are crucial to avoid deep vein thrombosis (DVT).

Have a happy and stress-free trip!

More information

Visit the TSA website to stay current on TSA recommendations for travelers with special needs.

Learn about ways to prevent blood clot risks on long flights.

Demystifying the Alphabet Soup

Details

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.