British Doctor Wants to Rescue ME Patient locked up in a Danish Hospital for 1 year and counting ...

Karina Hansen deserves a second opinion by an ME expert!

Posted on February 5, 2014 at justiceforkarina:

No one should be stripped of their human rights because they are ill. We have a right to be treated with dignity and respect. We are all vulnerable when we become ill and enter the healthcare system. We must make sure that laws are enforced and human rights are respected for all people.

Karina Hansen is a 25-year-old Danish woman with severe ME (Myalgic Encephalomyelitis).  ME is a neuroimmune illness with the defining characteristic of post-exertional malaise or post-exertional neuroimmune exhaustion. It has been coded as a neurological illness (G 93.3) by the World Health Organization since 1969. Cases that are severe can cause a patient to be bedridden and in need of a carefully controlled environment in order to prevent exacerbation of symptoms. Light, noise, and touch can all be physically painful to an ME patient.

Karina has been battling this illness since the age of sixteen with the help of her loving parents. It took seeing different doctors at different institutions to receive the correct diagnosis. After receiving treatment that made her worse, Karina and her parents took steps to prevent this from happening in the future. They hired their own physician and dietician to treat Karina. Her mother, Ketty, was her full-time caregiver. Because of Karina's extreme sensitivity to stimuli such as sound and light, her parents moved into a trailer in their backyard during the day to allow Karina the quiet she needed.  Karina hired a lawyer and gave her parents power of attorney to act on her behalf.

Unfortunately, in Denmark ME patients are often labelled as having a functional disorder. The treatment for a functional disorder includes graded exercise therapy (GET), cognitive behavioral therapy (CBT), and possibly anti-depressants. Testing has shown that the bodies of ME patients respond to exercise differently than healthy people. Forcing exercise upon people with this illness can cause a significant worsening of symptoms.  Cognitive behavioral therapy can be helpful to some people but only as an adjunct therapy. Treating conditions such as cancer or MS with CBT and GET alone would be considered outrageous, not because they are bad in and of themselves, but because they in no way treat the underlying illness. Treating ME with these therapies is even worse because exercise can actually be detrimental to the patient. 

Summary of Karina's experiences prior to her forcible removal:

In 2008 Karina was admitted to an arthritis hospital for a two-week treatment that involved GET. At the end of this stay she could only be active an hour a day. She was given the observational diagnosis of ME at this clinic.

At this time Karina and her family did not understand the concept of post-exertional neuroimmune exhaustion and the danger that forced exercise (GET) can have for ME patients. The doctors encouraged it as a way to get better and Karina and her family understandably followed this advice. In 2010, Karina was again pressured into hospitalization and once again her sensitivities to sound and light were not taken into account. During this time a doctor wrote in her journal that Karina had no depressive or psychotic tendencies. Karina and her parents knew that this hospital treatment would be detrimental to her and fought to take her home. The doctors admitted there was absolutely no cause to keep her for psychiatric reasons and she was able to go home. Eleven days later a well-known ME expert examined her and confirmed the diagnosis of ME. 

Because of their past experiences, Karina's parents also had another ME expert come in 2011 to confirm the diagnosis and to offer suggestions for testing or treatments that could improve Karina's quality of life. They wanted to ensure that they were doing all they could to properly care for their daughter at home. The ME diagnosis was once again confirmed and further supplements and suggestions were made. At this time in March 2011, a local doctor and medical officer interviewed Karina and found her to be competent to decide her own treatment. Karina explained to them that she did not want CBT or GET and instead chose treatment advice from ME experts. The medical officer wrote an official document in which he accepts Karina's decision to choose her own treatment. With ME being diagnosed multiple times and Karina once again declared mentally competent the family felt secure that all the steps to keep Karina safe had been taken.

In May 2012 Karina had a surprise visit from her GP and another local doctor. The GP had been pressured by the Board of Health to make this visit to evaluate her mental state. Once again Karina was declared mentally competent and could therefore not be forced into unwanted treatment. However, they said they she would have to have a new psychiatric evaluation in a few days. At this time Karina and her parents chose to get her story out to the public in hopes it might protect her. Karina chose pictures that could be used and said she hoped it would help others in her situation.  In May 2012 Karina hired a lawyer and gave her parents power of attorney to make legal and medical decisions for her when she could not.  During this time, the Board of Health assigned a psychiatrist to her case and he began contacting Karina's parents asking to visit Karina. Karina is under group 2 in the healthcare system which means she can chose any doctor she wishes and that the government cannot assign her one. She had chosen her own doctors and her family made it clear they did not want this psychiatrist involved in her case. They did not understand why he had any right to be involved in Karina's care.

This psychiatrist continued to insist that he see Karina and pressured them to admit Karina to a hospital, but he would not provide a treatment plan despite written requests by Karina's parents that he do so. The ME Association, Denmark offered to put him in touch with ME experts and have one visit Karina. This psychiatrist refused. In the fall of 2012, Karina's parents stopped all contact with this psychiatrist, but unbeknownst to Karina and her parents, this doctor did not stop his involvement in Karina's case. This doctor wrote to the Ministry for Health and Prevention asking about the right to keep relatives from visiting members in the hospital. He received the reply in a five-page answer that explains that human rights have priority. 

Forcible removal and systemic stripping of Karina's patient rights:

On February 12, 2013 Karina Hansen was forcibly removed from her bed and relocated to Hammel Neurocenter. A total of five policeman, two doctors, two caseworkers, and a locksmith arrived unannounced to remove one bedridden young woman from her mother's loving care. Ketty Hansen (Karina's mother) was physically held back while her daughter called for her to come help and repeatedly rang her bell (her way of calling for her mother).

The anguish in that moment would be indescribable. What an overwhelming display of force against a bedridden daughter and her mother! Karina used her cell phone to call and text for help. She tried to call her mother who wasn't allowed to answear. She called her sister and father and asked for help. This was an enormous expenditure of energy for someone as sick as Karina. Her adrenaline must have been pumping as she sensed danger.

Later reports showed that during this time the house and its contents, such a supplements, medications, and the food in the refrigerator were photographed. Presumably they were looking for evidence of neglect and, of course, did not find it as Ketty had always received praise for her care of her daughter by doctors who visited her home. Per and Ketty (Karina's parents) took excellent care of Karina.  In the aftermath of this visit Per and Ketty found a note on the floor by the door. It said "to Karina's parents. You will be contacted by a head doctor every day at about 10:00 with information about your daughter. You may also contact the place of treatment at this phone number xxx-xxx between 13:30 and 14:30 every day." There was no name or address on the paper. This was the only piece of paper they received that day! 

On February 13th Karina called her mother and said "How can I get out of here? I can't take it" and the connection was cut. That was their last contact. They later discovered that Karina made a total of 43 phone calls and sent 7 texts in an attempt to get help before her phone died. Her last call was a call to the police that lasted about 40 seconds. Transcripts have been requested but not provided.

Her family has requested multiple time that her phone be charged for her. The response they received is that Karina must do it herself but she cannot walk to charge it. This shows an extreme callousness to her condition and the extra help Karina needs because of it.

A brief review of the past year

Karina's parents were finally informed that Karina had been taken to a neurocenter for treatment of her "severe condition." They were told that Karina could not have visitors for 14 days and then it would be reevaluated to see if she could have visitors.  Although this contradicts what we now know was communicated to this doctor prior to Karina's removal.

This original time period was then extended to 3 weeks because the psychiatrist was on vacation. Then the terms of visitation were that only visitors who supported the treatment given were to be allowed.

During this past year Karina's decision to give her parents power of attorney has been disregarded. She has been appointed a guardian by the state. The guardian did not know Karina or her wishes prior to this. He believes in the treatment Karina is receiving. Conversations in meetings with the caregivers at Hammel Neurocenter have revealed a deep prejudice against ME. One doctor went so far as to call those who believe in ME "imbeciles."

Karina's parents and attorney are fighting this battle in the court system. It is a long, slow, uphill battle. Meanwhile Karina should be afforded the right to the support of her family, the right to change healthcare providers, and the right to have complaints treated in a swift and just manner. She has told them "you are killing me" and she has begged to be allowed to go home, and yet they disregard her. 

They have stripped her diagnosis of ME and replaced it with a controversial diagnosis of PAWS (pervasive arousal withdrawal syndrome). Considering Karina has had multiple doctors diagnose her with ME, a second opinion by an ME expert seems to be the correct choice. Karina's parents are asking that Karina's right to a second opinion be enforced. According to the Danish Health Care Act, 2010, a second opinion is allowed if the condition is severe or life-threatening. The Declaration on the Promotion of Patients' Rights in Europe states that all patients should have the possibility of obtaining a second opinion. (2.7)

A well-known ME expert has volunteered his time to see Karina. His travel expenses will be paid by a patient association. This seems a small and easily grantable request in light of this situation. Karina's parents wrote to the guardian asking to allow Karina to take advantage of this opportunity to see an ME expert. The guardian responded saying that he trusts the team at Hammel Neurocenter and that he believes Karina is currently receiving the correct treatment but he said he would bring up their request at the next meeting with the team at Hammel.

Please join J4KH in asking that the guardian and the team at Hammel grant Karina this right to a second opinion! We have a shared our open letter on Facebook and this website.

We are asking everyone who believes Karina should have the right to this visit by the ME expert please sign our new petition on change.org. https://www.change.org/petitions/the-guardian-of-karina-hansen-we-ask-you-to-allow-karina-hansen-to-have-the-right-to-a-second-opinion-from-a-leading-me-expert-dr-nigel-speight#share

We are also starting a Thunderclap to help this new reach as many people as possible. Please lend us the power of your social media by signing up for our Thunderclap! http://thndr.it/1nUTVRm

Please like Justice for Karina Hansen on Facebook and follow us on twitter at Justice for Karina H @Justice4KarinaH to stay updated.

Sources for the above article:

1. Rynning, E. (2011), Nordic Health Law in a European Context: Welfare State Perspectives on Patient Rights and Biomedicine. Retrieved from http://books.google.com/books?id=iDa_qL--W_oC&printsec=frontcover#v=onepage&q&f=false

2.. Declaration on the Promotion of Patients' Rights in Europe, http://www.who.int/entity/genomics/public/eu_declaration1994.pdf?ua=1

3.  Crowhurst, G. (2013)  Severe ME,  UK: Stonebird

@ msj.sagepub.com:

Epstein–Barr virus-specific adoptive immunotherapy for progressive multiple sclerosis

1. Michael P Pender1,–3
2. Peter A Csurhes1,4
3. Corey Smith3
4. Leone Beagley3
5. Kaye D Hooper1,2
6. Meenakshi Raj2
7. Alan Coulthard1,5
8. Scott R Burrows1,3
9. Rajiv Khanna1,3

1. ¹The University of Queensland, School of Medicine, Brisbane, Queensland, Australia
2. ²Department of Neurology, Royal Brisbane and Women’s Hospital, Brisbane, Queensland, Australia
3. ³QIMR Centre for Immunotherapy and Vaccine Development and Department of Immunology, QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia
4. ⁴The University of Queensland Centre for Clinical Research, Brisbane, Queensland, Australia
5. ⁵Department of Medical Imaging, Royal Brisbane and Women’s Hospital, Brisbane, Queensland, Australia

Michael P. Pender, Level 9, Health Sciences Building, Royal Brisbane and Women’s Hospital, Queensland 4029, Australia. Email: m.pender@uq.edu.au

Abstract

Defective control of Epstein–Barr virus (EBV) infection by cytotoxic CD8⁺ T cells might predispose to multiple sclerosis (MS) by allowing EBV-infected autoreactive B cells to accumulate in the central nervous system. We have treated a patient with secondary progressive MS with in vitro-expanded autologous EBV-specific CD8⁺ T cells directed against viral latent proteins. This adoptive immunotherapy had no adverse effects and the patient showed clinical improvement with reduced disease activity on magnetic resonance imaging and decreased intrathecal immunoglobulin production. This is the first report of the use of EBV-specific adoptive immunotherapy to treat MS or any other autoimmune disease.

• Adoptive immunotherapy
 
• B cell
 
• CD8+ T cell
 
• Epstein–Barr virus
• multiple sclerosis
 
• treatment

• Received October 23, 2013.
• Accepted January 8, 2014.

This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 3.0 License (http://www.creativecommons.org/licenses/by-nc/3.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (http://www.uk.sagepub.com/aboutus/openaccess.htm).

How "Chronic Fatigue Syndrome" Obscures A Serious Illness

An estimated 1 million Americans are debilitated by the condition, which isn’t well understood by the medical community. Advocates and patients argue this is in part due to a continued stigma caused by its unserious-sounding name.

David TullerBuzzFeed Contributor

posted on January 27, 2014 by David Tuller: Ten years ago, Jeannette Burmeister was working full throttle, logging 80-hour weeks as an attorney specializing in international commercial and employment law at the San Francisco area offices of a major law firm. So when she developed a sinus infection over the Christmas holidays in 2005, she assumed she’d bounce right back.

But she didn’t. The illness persisted; Burmeister then began suffering from profound lapses of energy, crippling problems with concentration and memory, and severe sleep disorders, among other symptoms.

“I went to work for two hours one day, hit a wall, and couldn’t go back the next day,” Burmeister, now 42, said in a recent telephone conversation. “I could not think straight. I had days where I couldn’t spell my name. And such complete exhaustion you can’t describe it, like you just ran a marathon, are hungover, and have the flu, all at once.”

She hadn’t heard of chronic fatigue syndrome until a friend mentioned it; when she looked it up, the symptoms seemed to fit. As with many people who have the illness, a battery of tests found that Burmeister had abnormally high levels of antibodies to a variety of common viruses, including Epstein-Barr virus, human herpesvirus 6, parvovirus, and coxsackievirus. The significance and meaning of such findings are not fully understood; people without the illness can also have elevated viral levels.

Burmeister said the disease — and its trivial-sounding moniker — has isolated her from former friends and acquaintances. They don’t understand how sick she is, she said, and she recognizes that explaining it to them is often futile. “First of all you’ve got the name,” she said. “And once you’ve put the name out there you’ve already lost most people’s attention, because then they say, ‘Yeah, I have a hard job,’ or, ‘I’m tired too.’”

More than 1 million Americans suffer from chronic fatigue syndrome, according to the Centers for Disease Control, although many experts believe that the agency’s figures are somewhat inflated. The illness is also known as “myalgic encephalomyelitis,” which means “painful inflammation of the brain and spinal cord,” and many people now refer to it as ME/CFS. Patients are used to having their symptoms belittled as imaginary or dismissed as a manifestation of depression by family, friends, colleagues, and doctors — even though compelling evidence has linked the complex illness to major immunological, neurological, and cognitive dysfunctions. Experts now believe that ME/CFS is likely a cluster of closely related conditions, triggered when an acute infection, or some other physiological insult such as exposure to environmental toxins or mold, kicks the immune system into a prolonged state of hyperactivation.

No drugs have been approved for ME/CFS, but Burmeister has found partial relief in recent years with twice-weekly infusions of the drug Ampligen, an unapproved immunomodulator that she can only obtain through an experimental treatment protocol. She blogs extensively about her illness and in 2012 testified before a Food and Drug Administration panel considering whether to recommend approval for Ampligen. (The panel voted 8-5 against it, citing insufficient safety and efficacy data.)

In recent months, her blog has doggedly tracked the creation of a new, federally commissioned panel charged with reviewing and updating the diagnostic criteria for the disease. The Department of Health and Human Services announced in September that it had requested the Institute of Medicine, an independent, highly regarded affiliate of the National Academy of Sciences, to conduct the study. At a public hearing in Washington, D.C., on Monday, Jan. 27, Burmeister plans to tell the members of the panel why she thinks their project stinks.

Few would claim that describing an illness with enough accuracy for clinicians to recognize it and treat it effectively is simple. But for most illnesses, creating diagnostic criteria — known as a clinical case definition — is not the stuff of high drama and conflict. ME/CFS, however, is not most illnesses.

To those who aren’t sufferers, chronic fatigue syndrome often sounds like it’s just stress related or psychosomatic — and ME/CFS has often been framed that way by medical professionals in the past. Now, Burmeister and other patients, clinicians, and researchers fear that the new, 15-member panel could repeat that mistake.

In general, medical experts in a particular illness or condition debate and create clinical case definitions and guidelines. But no single medical specialty claims ME/CFS. Patients often see clinicians in a range of specialties, including infectious diseases, immunology, neurology, rheumatology, and psychiatry. The closest parallel to a traditional medical society is the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, a scientific and advocacy organization of researchers, health care professionals, and others.

So when the Institute of Medicine announced provisional members of the panel last month, many patients were angry that more than half of the members — whatever their accomplishments in their own fields — were not known to have any professional expertise in ME/CFS. Many clinicians and researchers with experience in the field have already endorsed a set of diagnostic criteria that they say should be used as the starting point for any new case definition.

“I can’t imagine any other field where this would be happening,” said Burmeister, who grew up in East Germany, moved to the U.S. in 1999, and became a citizen in 2012. “You wouldn’t have rocket scientists come up with guidelines for heart surgery. To have a majority of nonexperts on the committee — of course this is crazy.”

A broad or imprecise definition of the illness could have a ripple effect. Patients like Burmeister fear that flawed results will undermine research into organic causes and lead to treatments more appropriate for depression and other psychiatric conditions than for their illness.

Last fall, several dozen top researchers and clinicians in the ME/CFS field signed an unusual letter of protest to Kathleen Sebelius, secretary of the Department of Health and Human Services, strongly urging her to abandon the IOM initiative. Dr. Daniel Peterson, one of the letter-signers and a well-known expert who has treated ME/CFS patients in Incline Village, Nev., for three decades, echoed Burmeister’s concerns about the role of the nonexperts on the IOM panel.

“If I were redefining the criteria for diabetes, I would certainly want 25 diabetologists to render their opinion,” said Peterson. “I wouldn’t want neurosurgeons and psychiatrists and people who have never seen a patient. I can’t imagine being on a committee for some disease I don’t know about.”

In the letter, the experts also criticized the health department’s decision to spend $1 million on the IOM project, given that the National Institutes of Health only spends $5 million annually in research on the disease, far less than it devotes to many less common illnesses.

“Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease,” wrote the experts. “Worse, this effort threatens to move…science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.”

One letter-signer, Dharam Ablashi, a prominent former researcher at the National Cancer Institute and currently scientific director of the HHV-6 Foundation, chided the federal agency. “Why do you want to spend $1 million to reinvent something?” he said. “The key point is, there are criteria out there that are working — they’re not perfect, but they can be modified.”

The Office on Women’s Health at the Department of Health and Human Services, which is co-sponsoring the IOM project, responded to questions by referring to previously issued department statements, which noted that the institute is an appropriate venue for resolving such thorny issues and that its imprimatur would ensure maximum acceptance and credibility for the findings.

“The IOM has a singular reputation for providing biomedical recommendations on difficult, complex and controversial questions in medicine,” read a FAQ from the department about the project. “The IOM process of developing consensus recommendations is widely accepted by professional societies and other medical institutions that disseminate clinical guidelines.”

Not all patients and experts oppose the IOM initiative, and the issue of whether it is possible to cooperate with the panel and not be co-opted by it has been vigorously debated on social media. The CFIDS Association of America, a major ME/CFS organization that has frequently been at odds with grassroots patient advocates, has again caused grumbling in some quarters because of its support for the health department’s IOM agreement. Some signers of the experts’ letter have also been invited to join the IOM panel, and have accepted. Moreover, the panel appears to contain more acknowledged ME/CFS experts than many people had expected — seven out of the 15 members, if early reports are accurate.

Carol Head, president and CEO of the CFIDS Association of America, said she understood the concerns of those who oppose the IOM’s involvement but noted that no one medical specialty owns the illness. “It lacks an established medical society as exists in other diseases, so it made sense to us that the IOM would be a place to start with this,” she said.

The panel is expected to deliver its report in a year, and its guidelines are likely to be widely disseminated and accepted by doctors, so the stakes for patients are high. With any disease, accurate case definitions for both research and clinical care are essential. A case definition that is drawn too loosely and thereby includes too many people who do not have the illness in question will skew research findings and lead to unjustified and potentially harmful treatment recommendations. And case definitions that are too narrow end up screening out people with the illness who need treatment but might not be identified because of atypical disease presentation.

For diseases with reliable tests for biomarkers that indicate the presence of an infection or other abnormal physiological phenomenon, a positive result might be all that is needed for an accurate case definition. But for conditions identified through symptoms, like Gulf War illness and ME/CFS, creating a case definition that includes those with the illness while excluding those without it is far more difficult, especially if some of the symptoms are non-specific and subjective.

In particular, ME/CFS and depression can resemble each another; a loose case definition might end up including people whose primary complaint is depression, not ME/CFS. So it is important but challenging to determine whether depression caused the fatigue and other symptoms or if the patient is depressed because that patient is indeed very sick.

Leonard Jason, a professor of psychology at DePaul University in Chicago and a widely respected ME/CFS researcher, said that a good strategy for distinguishing between the illness and depression is to ask patients what they would do if they suddenly recovered. Those suffering from a major depressive disorder, he said, would likely say they didn’t know. “But someone with ME/CFS would probably begin making lists of all the things that they wanted to do,” he said.

Mistrust and conflict between chronic fatigue syndrome patients and federal health officials has a long history, as Hillary Johnson documented in 1996 inOsler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, a prodigious feat of investigative reporting. When several outbreaks of a persistent, flu-like illness occurred around the U.S. in the mid-1980s, many suspected Epstein-Barr virus as the culprit. The Centers for Disease Control investigated, identified no causal agent, and ultimately saddled the condition with the unfortunate and condescending name — even though the essentially identical illness known as benign myalgic encephalomyelitis (or just myalgic encephalomyelitis) had been identified many years earlier.

In the late 1990s, the CDC was found to have diverted millions of dollars intended for CFS research into other disease programs, and then to have lied to Congress about it. In the 2000s, the agency further enraged patients when it refused to support a movement to change the name to myalgic encephalomyelitis and instead spent millions on an awareness campaign promoting the name “chronic fatigue syndrome.” Patients have also long complained that the agency has focused more on psychological issues than on possible organic causes. In 2010, for example, the CDC published a study that characterized people with the illness as suffering disproportionately from “maladaptive personality features” — compared with a control group, the ill subjects had higher “scores on neuroticism” and higher rates of “paranoid, schizoid, avoidant, obsessive-compulsive, and depressive personality disorders.”

In fact, two-thirds of patients report that their downward slide started with an acute illness, such as mononucleosis or the flu, that never seemed to resolve. And experts and patients agree that the word “fatigue” causes a great deal of misunderstanding among those unfamiliar with the illness. A cardinal symptom, they say, is not just fatigue per se, but what is called post-exertional malaise or post-exertional relapse — the inability of the body to recover rapidly from even small expenditures of energy. Research in recent years has confirmed the presence of this unusual symptom among people with ME/CFS. Moreover, the exhaustion they report is far more severe than the garden-variety tiredness implied by “fatigue.”

Patients despise the name, said Michael Allen, a psychologist who became ill in the early 1990s. “When I hear that word, it makes me nuts, like waving a red flag in front of a bull,” said Allen, who lives in San Francisco. “Normal fatigue is when you’ve just run five miles and you’re tired and you take a nap and the fatigue is gone. But I have days where I’m lying on the couch for hours and I literally can’t move, like I just had major surgery. Like the mitochondria in the cells of my muscles and brain have just stopped producing energy.”

In a blog post this month at Oxford University Press, Leonard Jason, the DePaul psychology professor, described some possible impacts of the poorly chosen name.

“Chronic fatigue syndrome is an illness as debilitating as Type II diabetes mellitus, congestive heart failure, multiple sclerosis, and end-stage renal disease,” wrote Jason. “Yet 95% of individuals seeking medical treatment for CFS reported feelings of estrangement; 85% of clinicians view CFS as a wholly or partially psychiatric disorder; and hundreds of thousands of patients cannot find a single knowledgeable and sympathetic physician to take care of them. Patients believe that the name CFS has contributed to health care providers as well as the general public having negative attitudes toward them.”

Burmeister concurs with that point wholeheartedly, citing a recent visit to the emergency room after her car was rear-ended. “I was very careful not to mention CFS or ME during check-in, because patients have been known to get abused with that diagnosis in the file,” she said. She knows she is lucky to have a supportive husband who has not questioned the reality of her illness. “He never doubted me, and that’s rare — a lot of patients go through divorces,” she said.

Nonetheless, they live separately, although not because they want to. Only a handful of doctors around the country are willing to submit to the cumbersome protocol requirements for administering Ampligen; one of them is Peterson in Incline Village, which is on Lake Tahoe. Traveling back and forth twice a week to receive her infusions seemed too exhausting, so for the foreseeable future she is living in Incline Village most of the time; her husband Ed, also a lawyer with a major law firm, and 3½-year-old daughter, Aimee, live in Menlo Park, south of San Francisco. Burmeister feels the medication regimen allows her to function at a modest level, although she still must guard against overexerting herself.

Being able to see Aimee only once every couple of weeks is heartbreaking. “I would like to be able to be a real mother, to take her on playdates and to the playground,” she said wistfully. “We Skype and talk on the phone, but that’s not the same as being with her. She’s definitely more attached to my husband, which is hard for any mother. I deal with it mostly by compartmentalizing — otherwise it’s too painful to think about.”

Courtesy of Jeanette Burmeister

The recent round of activity involving case definitions began in fall 2012, when the Chronic Fatigue Syndrome Advisory Committee — a body created under the auspices of the Department of Health and Human Services to provide guidance on the issue — recommended that the agency convene a workshop to nail down definitive case definitions for both clinical care and research.

Over the years, researchers and clinicians around the world have created at least half a dozen different case definitions for ME/CFS, based on their understandings at the time. In 1994, the Centers for Disease Control developed what became the most widely used criteria. It required the presence of six months of unexplained fatigue, plus any four of eight symptoms: cognitive problems, sore throat, tender lymph nodes, muscle pain, joint pain, headaches, sleep disorders, and post-exertional malaise.

In 2003, researchers and clinicians developed a more rigorous case definition widely known as the Canadian Consensus Criteria. In addition to fatigue, this definition requires the presence of all symptoms that experts recognized as hallmarks of the illness: post-exertional malaise, sleep disorders, muscle and joint pain, and evidence of neurological or cognitive problems. The Canadian Consensus Criteria is therefore considered by many to be the most accurate case definition and is now often used by clinicians for diagnosis — although there is general agreement that it needs further updating and refinement.

The 2012 recommendation of the Chronic Fatigue Syndrome Advisory Committee to the Department of Health and Human Services included two key elements: that the workshop to develop the research and clinical case definitions should be for stakeholders in the ME/CFS field, specifically doctors, researchers, and patients, and that it should adopt the Canadian criteria as the starting point for making adjustments.

To advisory committee members who supported the recommendation, the health department’s decision to engage the IOM instead felt like a slap in the face. And rather than designating the Canadian criteria as the basis for modifications, the health department charged the panel with assessing a full range of existing case definitions. (The Department of Health and Human Services also decided to pursue a completely separate process for developing a second case definition appropriate for research and examining other research-related issues.)

Mary Ann Fletcher, a member of the Chronic Fatigue Syndrome Advisory Committee who strongly supported the recommendation for a committee of experts, said she was totally baffled by the health department’s action. “This was not ever our recommendation, so I really can’t explain why they took us there,” said Fletcher, a professor at Nova Southeastern University in Fort Lauderdale and a leader in immunology research related to ME/CFS.

The protest letter from the leading experts to Secretary Sebelius, in addition to registering overall objections to the IOM effort, also identified the Canadian criteria as the appropriate basis for further refinements. In her response to the experts’ letter, Sebelius wrote that the IOM approach “was determined to be the most appropriate response” to the Chronic Fatigue Syndrome Advisory Committee’s recommendation. She also noted that the Canadian criteria would be considered, along with others.

The Department of Health and Human Services referred questions about selection and composition of the panel to the IOM. In an email, a spokeswoman for the institute stated that it had pursued the same strategy for ensuring the selection of disinterested panel members that it always uses for its investigations.

But many people with ME/CFS are especially concerned because of an IOM report produced last year under a contract with the Veterans Administration on treatments for Gulf War Illness — now renamed “chronic multisymptom illness.” By focusing extensively on stress-related factors and recommending cognitive behavior therapy and antidepressants as the key forms of treatment, the report caused controversy and drew complaints from veterans.

Under the Freedom of Information Act, Burmeister has requested documents relating to the IOM project and the insitute’s contract with the Department of Health and Human Services, hoping they would shed light on the federal agency’s decisions and intentions. So far she has not received them, which is not unusual; federal agencies often take years before producing actual documents in response to such requests. Undaunted, Burmeister this month filed a lawsuit against the department charging it with violating the Freedom of Information Act.

Whatever the IOM panel decides when it delivers its report, Burmeister believes it is unlikely that she herself will ever recover fully. She misses her past life; she used to exercise five days a week at the gym and loved going out dancing. If she were better, she said, she might start a law firm with her husband to protect the rights of people with disabilities — a cause that she has come to embrace.

As it is, she plans to fight for people with ME/CFS as long as her health allows. “So many friends with this are sicker than I am and can’t do what I’m doing,” she said. “So this is something that’s close to my heart, that has given me a purpose again.”