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New England Premiere of I Remember Me
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- Last Updated: 07 December 2015 07 December 2015
by Rita Sanderson
On April 9th, 2002 I had the good fortune of attending the New England Theatrical Premiere of the highly-acclaimed film about ME/CFS, I Remember Me. This program was organized by the Massachusetts CFIDS/ME & FM Association and included a guest appearance and presentation by the film's Director, Kim Snyder. The Premiere took place at the Brattle Theatre, a relatively small but cozy movie revival house in Cambridge, where many documentaries, independent and foreign films are the mainstay. The 250-seat theater is often referred to as Boston's unofficial film school. The theatre was filled to capacity for the first showing.
This was a very compelling and informative account of "life with ME/CFS." This 74-minute documentary film was directed by Kim Snyder, an experienced filmmaker from New York, and a person with ME/CFS. This film marks Kim's directorial debut. Her film credits include documentaries i.e. Oscar-winning film Trevor, and feature films i.e. Home for the Holidays. The film focuses on Kim's personal struggles with ME/CFS and her pursuit of answers over a 5+ year period. Snyder's reflections and revelations about her own experience took on the form of an interview that was intertwined with stories of other people with ME/CFS, observations by a variety of clinicians and researchers, and visits to key locations. In between the dialogue and these clips, a mixture of scenes were interposed, such as the storminess of the sea, seclusion by the riverside, the fury of a strong wind tearing across the fields, and buildings crumbling to the ground—visual images that conveyed to me what I believe were Snyder's innermost feelings and suffering.
Snyder's quest for information took her to Lake Tahoe, Nevada, site of one of the first known clusters of this mysterious illness during the mid-1980s, where an extensive conversation with Dr. Dan Peterson was recorded and presented in segments. Dr. Peterson showed genuine concern about people who had been well, suddenly became ill, many still remain ill, and those who had taken their lives over the years. He also expressed disgust with the sloppy investigation conducted by CDC and NIH officials who left skeptical that anything unusual had taken place. A clip was also shown of Dr. David Bell who spoke about a similar occurrence in upstate New York.
A number of other doctors were interviewed including Drs. Nancy Klimas, Peter Rowe, D.A. Henderson, and Alexis Shelekov, and several others, all of whom strongly supported the serious, complex nature of this illness. They reported on their clinical or research experiences. Commentary by Dr. William Reeves, former branch chief of the CDC, was also included regarding the diversion of funds from ME/CFS studies and acknowledgment that ME/CFS has become a major health problem. Contrary to these opinions, Dr. Peter Manu, an ill-informed doctor, was filmed at one of the ME/CFS conferences saying that he believed ME/CFS was nothing more than a form of hypochondriasis, where patients and advocating doctors have been trying to "create" or turn it into a "real" illness.
Another comparable, but earlier outbreak of a ME/CFS-like illness occurred over 40 years ago in Punta Gorda, Florida. Snyder was able to identify and meet with several of the women who had become ill but they had no idea, until recently, what had happened to them. Apparently, a medical article had been published about their cases but no one had ever gotten back to them. There were three other significant interviews. One was with Michelle Akers, Olympic gold medallist and world's top soccer player, who spoke with a lot of emotion and frustration about her experience (she has since had to retire from soccer due to ME/CFS.). Another one was a rare discussion with Blake Edwards, a famous Hollywood film director (Breakfast at Tiffany's, Days of Wine and Roses, Pink Panther) and husband of singer Julie Andrews. Edwards was very candid but cynical about his struggles with this illness.
The most touching of all the interviews was the story of Stephen Paganetti, a young high school student from Connecticut. At the age of sixteen, this boy had a very abrupt change in his health and quickly became bedridden for over 2 years. He had to be home-schooled and have all his daily needs taken care of by his parents, including being fed through a tube. The film recorded the exhausting preparation for his graduation where he was brought by ambulance while receiving IVs and oxygen. He was wheeled on a gurney to receive his diploma. Later on, he was surrounded by many of his former classmates, some of whom made thoughtless remarks. None of them had ever paid him a visit at home during that time.
The film moved reflectively from past to present through numerous scenes, people and places capturing certain experiences that I feel effectively portrayed the kind of roller coaster ride Kim Snyder and most of us have been on. All the tests, brush-offs by local doctors, ridicule by other people, and the overall frustration, isolation, and pain are situations that I, and my peers, could readily identify with (with the exception of the severity of Stephen's case). A segment was included regarding suicide. Each of the leading CFIDS/ME doctors admitted to having lost several patients over the years, mainly due to pain, and in one case, driven by the total disbelief and disregard by local doctors that made this individual's life unbearable.
At the end of the film, the audience enthusiastically applauded Kim Snyder and expressed great appreciation for all the seven years of hard work that she put into making and marketing this film. It was a true labor of love! It was also a critically-acclaimed success garnering the following awards: Winner Best Documentary, People's Choice Award, Denver Film Festival; First Runner Up, Sarasota Film Festival; and Honorable Mention, Hamptons Film Festival.
Patients could say that they are already intimately familiar with this illness, so why go and pay to see a movie about it? All I can say is that people went to show their support for an incredible accomplishment by someone who has walked in our shoes. This film also provides a great opportunity to educate family and friends who still don't understand what ME/CFS is and how it impacts our life. Most importantly, our patient community now has a great new tool to educate medical professionals and others who don't quite get it. We thank Kim Snyder for her enduring legacy! For most of us, it took us one day (and perhaps another day or two of recovery) to see the results of Snyder's investment of 5+ years in the making of this film. She has been traveling to film festivals and screenings over the past year or more, making it a seven-year journey.
A lengthy Q & A session with Kim took place after the first showing of the film. She responded to dozens of questions from the audience who praised this award-winning film. She recounted her now seven-year experience working on this film. A couple of questions were raised concerning a few aspects that may have been overlooked in this film. One is the "poverty" that is often brought on by this illness, and the other is the need for a more accurate representation of the "ethnic" groups afflicted by this illness. Viewers felt these aspects ought to have been included. Other questions included why Fibromyalgia had not been mentioned . Snyder answered that her research used the terms/definitions coined during these early outbreaks that she had investigated. She recognizes that FM and CFIDS are intertwined, and she acknowledged having both. In response to one of the last questions, she announced that after 7 years, she found herself doing considerably better—for no explainable reason other than "luck."
This film was aired several times during April, 2002 on the Sundance Cable Channel.
Rita Sanderson is on the Board of the Massachusetts CFIDS/ME & FM Association. Special Thanks to both Rita and her daughter Tamara , as well as our heart-felt thanks to Kim Snyder for this great film.
Increasing number of fatal acute liver failure cases linked to the popular painkiller acetaminophen (Tylenol)
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- Last Updated: 20 November 2015 20 November 2015
Research published in the December 2005 issue of the medical journal Hepatology found that the annual percentage of potentially fatal acute liver failure (ALF) cases caused by acetaminophen (TYLENOL) rose from 28 percent in 1998 to 51 percent in 2003. The research was conducted by the Division of Gastroenterology at the University of Washington Medical Center, Seattle WA. The facility is part of the U.S. Acute Liver Failure Study Group (ALFSG), a consortium of 22 academic medical centers that monitor cases of liver toxicity around the country.
The ALFSG collected information on all cases of acute liver failure that occurred between Jan. 1, 1998 and Dec. 31, 2003, including outcome information. A careful history of each patient's acetaminophen use, including the total dose, the type of product used, and the duration of use, was obtained where possible.
The researchers identified a total of 662 patients during the six year study period who met the criteria for acute liver failure. Of these 662 patients, in 275 (42%) cases, liver failure was found to have resulted from acetaminophen-induced liver toxicity. The fraction rose from 28% in 1998 to 51% in 2003, almost doubling in five years. The median total dose of acetaminophen taken by these patients was 24 grams, the equivalent of 48 extra-strength acetaminophen tablets.
Unintentional overdoses were responsible for 131 (48%) of the acute liver failure cases. Intentional overdoses, or suicide attempts, accounted for 122 (44%) episodes. In 22 (8%) of the cases, the intent was unknown. Of the 131 patients who overdosed unintentionally, 38% took two or more acetaminophen containing products simultaneously, and 63% used narcotic combination painkillers that contained acetaminophen.
Overall, 178 (65%) of 275 patients identified as having acetaminophen-induced liver toxicity survived. Seventy-four (27%) died without a liver transplantation, and 23 (8%) patients underwent a liver transplantation operation.
The authors of the study concluded:
"...acetaminophen hepatotoxicity far exceeds other causes of acute liver failure in the United States."
Prevent accidental overdosing—read labels
They also stated that efforts to limit OTC package size and to restrict the prescription of narcotic-acetaminophen combinations (or to separate the narcotic from the acetaminophen) may be necessary to reduce the incidence of this increasingly recognized but preventable cause of ALF in the United States. Educational programs for practicing physicians, pharmacists, and consumers, involving a full discussion of the hazards of this ubiquitous pain reliever and the identification of susceptible groups, seems warranted.
In testimony before an FDA advisory committee on this topic more than three years ago, Health Research Group Deputy Director Dr. Peter Lurie made several similar suggestions, as well as some others, to reduce the terrible toll of acetaminophen-induced liver failure.
Drug induced injury or death is a tragedy because, as is the case with acetaminophen, most of the time the toxicity of the drugs causing injury or death is known. It is even more troubling when the drug-induced injury or death is unintentional.
In the case of acetaminophen, this can occur in patients who are taking a prescription narcotic combined with acetaminophen as directed by their physicians if they also take acetaminophen-containing over-the-counter (OTC) products. This can happen even if these patients follow the instructions on the label of the product.
The amount of acetaminophen contained in OTC drugs is clearly listed on the label. Always read these labels before taking any OTC drug to make sure you are not taking acetaminophen (or any other drug) in more than one product.
If you are prescribed a prescription painkiller, it is likely that it is a combination of a narcotic drug with acetaminophen. Lortab, Percocet, and Tylox are a few examples of widely-prescribed acetaminophen-containing painkillers.
If you are prescribed a painkiller, ask your pharmacist if it also contains acetaminophen. Mixing OTC drugs and prescription painkillers may result in too much acetaminophen being taken.
Alcohol warning
Alcohol in combination with acetaminophen can increase the risk of liver toxicity. All OTC drugs that contain acetaminophen have the following warning on their labels:
Alcohol warning: If you consume 3 or more alcoholic drinks every day, ask your doctor whether you should take acetaminophen or other pain relievers/fever reducers. Acetaminophen may cause liver damage.
What you can do
To prevent acetaminophen overdose, you should carefully read the labels on all OTC drug products to see if they contain acetaminophen. If you are prescribed a prescription painkiller, ask your pharmacist if it contains acetaminophen.
Do not take OTC products that contain acetaminophen if you are taking an acetaminophen-containing painkiller. Do not take more than one acetaminophen-containing drug, prescription or otherwise.
If you or a family member develop any of the symptoms of potential liver toxicity, stop taking all acetaminophen-containing products and call your physician immediately. These symptoms are:
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Pruritus (itchy skin)
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Jaundice (yellowing of the skin or whites of the eyes)
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Dark urine
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Upper right-sided abdominal tenderness (location of the liver)
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Unexplained "flu-like" symptoms
Source: Co-Cure
Orthostatic Problems in CFIDS/FM and Post Polio Syndrome
- Details
- Last Updated: 02 December 2015 02 December 2015
by Dr. Richard L. Bruno
The Massachusetts CFIDS/ME & FM Association Spring 2002 UPDATE
While watching a football game President Bush swallowed a pretzel and fainted. They said it irritated his throat and made his blood pressure fall. I feel faint when food seems to get stuck behind my breastbone. I also get lightheaded and very tired after a big meal. Other people with the Chronic Fatigue and Immune Dysfunction Syndrome and fibromyalgia (CFIDS/FM) tell me they do, too. Are these CFIDS/FM symptoms?
President Bush swallows a pretzel that irritates his esophagus. The irritation causes his blood pressure to plummet and he faints. An unheard of experience? Not for some of the world's 20 million polio survivors and the estimated 10 million people with CFIDS/FM.
The President's problem likely had to do with the pretzel overstimulating the vagus nerve, the main highway for nerve traffic to your esophagus, your swallowing tube, and to your stomach. The vagus nerve carries commands from brain stem neurons to activate the muscles in your throat, esophagus and stomach that make swallowing possible. The vagus nerve also sends commands that tell your heart muscle to slow down and your blood vessels to open up. Vagus nerve stimulation, causing a drop in blood pressure due to blood vessels opening up, is responsible for the common faint, called vaso-vagal syncope.
But the vagus nerve is a two-way street: it both sends commands to your heart and gut and listens to the results of those commands. The vagus carries information about how much food is inside your throat, esophagus and stomach back to those same brain stem neurons. Anything that irritates the esophagus—like a pretzel getting stuck or even a full stomach—can stimulate the vagus nerve enough to drop blood pressure and cause a faint, which seems to be what happened to the President.
For Mr. Bush this is likely a one-time thing. But for polio survivors and people with CFIDS/FM, low blood pressure, lightheadedness and even fainting can be frequent occurrences. We know that the poliovirus damaged brain stem neurons that control the vagus nerve and possibly damaged the nerve itself.
We have been following a growing number of post-polio patients who feel exhausted after eating meal. Food sticking in the esophagus or a full stomach apparently overstimulates the vagus nerve, triggers a drop in blood pressure and causes feelings of severe fatigue, even though these polio survivors don't usually faint.
In 1995, pediatrician Peter Rowe found that some patients with CFIDS also have fatigue that is associated with a drop in blood pressure when they stand up, take a hot shower or are in a hot room. Rowe's observations parallel the finding from our 1985 Post-Polio Survey that fatigue increased in more than one third of polio survivors when they were exposed to heat.
Another parallel with polio survivors was Rowe's observation that a CFIDS patient had "a purple discoloration" of her feet and hands after standing. This discoloration was reported in patients with CFIDS back in 1959 and is remarkably similar to polio survivors' cold and purple "polio feet." These findings indicate that both polio survivors and some CFIDS/FM patients have lost the ability to regulate the size of their veins, which allows blood to pool, blood pressure to drop and causes feelings of fatigue.
Our 2001 International Chronic Fatigue Syndrome Survey found that those with CFIDS/FM fainted nearly twice as often as they did before having CFIDS/FM.
Our 1995 International Post-Polio Survey found that polio survivors do not faint any more frequently than those who didn't have polio. But the 1995 Survey did find that anyone who had fainted even once in their lifetime reported significantly more severe daily fatigue than those who had never fainted.
This suggests that damage to brain stem blood pressure control and vagus nerve neurons may be coupled to damage to brain activating neurons, the neurons that our and others' research suggests are responsible for symptoms of "brain fatigue" in polio survivors and those with CFIDS/FM.
So polio survivors and patients with CFIDS/FM share abnormalities of blood vessels and blood pressure that seem to be related to brain stem neurons that are not functioning normally, probably as a result of virus damage to both brain activating and blood pressure control neurons.
What's to be done? Everyone with CFS should have their heart rate and blood pressure taken lying, sitting and standing. If fatigue is associated with a drop in blood pressure, compression stockings are often helpful to stop blood from pooling in the legs.
If you need more help, go to a specialist in low blood pressure and ask about medications that increase the amount of fluid in your blood or reduce the size of your veins to stop blood from pooling in the legs.
If fatigue is associated with meals, eating small bites and washing them down with liquid, as well as eating frequent, small, higher protein meals, can stop food from sticking in the esophagus and the stomach from getting too full, prevent over stimulating the vagus nerve and prevent fatigue or even a faint.
References
Bou-Holaigah I, "Provocation of hypotension and pain during upright tilt table testing in adults with fibromyalgia," Clinical & Experimental Rheumatology 15 (1997): 239-46.
Bruno RL. The Polio Paradox: Uncovering the Hidden History of Polio to Understand and Treat "Post-Polio Syndrome" and Chronic Fatigue. Warner Books, 2002.
Bruno RL, "Paralytic versus non-paralytic polio: A distinction without a difference?" American Journal of Physical Medicine and Rehabilitation 79 (1999): 4-12.
Bruno RL. "Fainting and Fatigue: Causation or Coincidence?" CFIDS Chronicle 9(2) (1996): 37-39.
Bruno RL. "Chronic fatigue, fainting and autonomic dysfunction: Further similarities between post-polio fatigue and Chronic Fatigue Syndrome?" Journal of Chronic Fatigue Syndrome 3 (1997): 107-117.
Bruno RL, Frick NM. Stress and "Type A" behavior as precipitants of Post-Polio Sequelae. In Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains: March of Dimes Research Foundation, 1987.
Manyari D, "Abnormal reflex venous function in patients with neurally mediated syncope," J Am College Cardiology 27 (1996): 1730-5.
Palmer E, "The upper gastrointestinal vasovagal reflexes that affect the heart" Am J Gastroenterology 66 (1976): 513-22.
Rowe P, "Orthostatic intolerance and chronic fatigue syndrome associated with Ehlers-Danlos syndrome," J Pediatrics 135 (1999): 494-9.
Dr. Bruno is the Director of Fatigue Management Programs and The Post-Polio Institute at Englewood (NJ) Hospital and Medical Center. His book is The Polio Paradox: Uncovering The Hidden History of Polio to Understand and Treat "Post-Polio Syndrome" and Chronic Fatigue . See his website at www.postpolioinfo.com.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.