Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Research articles

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

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

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

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.

 

Subcategories

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.