Thursday, May 31, 2007

Fibromyalgia Myth Busting

Immune Support has a new article about Fibromyalgia Myths: http://www.immunesupport.com/library/showarticle.cfm?id=8009

Like CFS, fibromyalgia is a neurologic, not autoimmune, disease.  The real problem in fibromyalgia is a malfunction in the Central Nervous System that leads to improper processing of signals.  It is not caused by psychological problems; it is not simply a case of depression; it cannot be cured with anti-depressants.

"Research studies have revealed a number of biological abnormalities, including:

  • Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems experienced by Fibromyalgia patients.
  • High levels of “substance P,” a central nervous system neurotransmitter involved in pain processing.
  • Low levels of nerve growth factor.
  • Low levels of somatomedin C, a hormone that promotes bone and muscle growth.
  • Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.
  • Low levels of phosphocreatine and adenosine, muscle-cell chemicals.

Despite the scientific evidence, some medical professionals continue to dismiss Fibromyalgia as a psychological problem, insisting that the symptoms are caused by depression. The fact is that the percentage of FM patients who suffer with depression is no higher than for any other chronic illness. Unfortunately, since it takes an average of 17 years for new research to become part of mainstream medicine, we’re probably going to be fighting this myth for several more years."

 

Certainly, there are patients who, when faced with a massively life-altering condition like CFS or fibro, become depressed.  Patients with other chronic or terminal medical conditions get depressed, too.  Giving such patients an anti-depressant can improve their functioning by lifting the depression, perhaps enough to get them back to work, but the anti-depressant doesn't cure the CFS/fibro. 

There are many CFS/fibro patients who are not depressed -- a series of psych experts over the past 20 years have repeatedly confirmed that I am one of them -- and we are not helped by anti-depressants.  In fact, I've found they generally make me sicker. 

But for those with concomitant depression, it's what I call The 10% Factor -- some patients, with a mere 10% improvement, are able to return to work.  And then there are those at the other end of the spectrum, where a 10% improvement might allow them to brush their own teeth or feed themselves instead of having someone do it for them while they lie in bed helpless with paralytic muscle weakness.  And a lot of us in the middle, where an extra 10% functionality might be the difference between eating preservative-laden TV dinners and having the energy to cook from scratch with healthy fresh ingredients, but isn't even close to being enough to get us back to work full-time.

Since standard blood tests don't detect malfunctions in the Central Nervous System, it's tempting for doctors to say "all blood tests are normal, you're just depressed", but the fact is, they haven't done the right tests to find what's wrong in CFS/fibro.  That requires neurological testing; if your HMO rewards doctors for keeping costs down, he may not want to order such expensive testing when he can write "depression" in the records and be done with it.  It may solve his problem, but it won't solve yours.

There are some fibro-specific drugs in the FDA pipeline.  Since they're still unapproved, I haven't been able to get much information on how they're supposed to work (e.g., pain relief or chemical rebalancing), but that proprietary information will come out later.  There is hope. 

And hopefully when those drugs come out and are advertised as addressing a neurological problem, that will speed up the acceptance of the medical profession of the research showing that fibro is not depression. 

On the CFS/ME front: "A national charity representing severely affected ME patients called for the MRC to stop completely any funding for research into ME that is not biomedical in nature.  Simon Lawrence from the 25% ME Group said "If the funding available for cancer research was going towards researching the personality of patients rather than looking at the physiology of the illness there would be an outcry. For years the severely ill ME patients we represent have had to put up with the MRC refusing funding for biomedical research whilst it gives money to psychological research. ... It is totally unacceptable that a hugely important study looking at geneexpression in ME and which could lead to a diagnostic test, is being funded by patient groups whilst trials of psychological therapy are receiving millions of pounds."

Simon Lawrence pulls no punches when he says "Public money is being wasted on research that will be of no help to ME patients. It is about time serious money was spent on research into the pathology not the psychology of this devastating illness and high time that psychiatrists retreated to their own field of mental health and left ME well alone".

Tuesday, May 29, 2007

What's Wrong with Doctors

Thanks to LKW....

The New York Review

What's Wrong with Doctors By Richard Horton

How Doctors Think by Jerome Groopman

... Groopman presents a forceful and convincing manifesto that, if implemented, would overturn many conventions of modern medical practice.

Groopman's central claim is that there is a common flaw that undermines much of contemporary medical education and training, as well as the partnership between patient and doctor and even the professional values of medicine. That flaw lies in the way doctors think. His disquiet originated from the frustration he felt working among his students and residents at Harvard Medical School. Whereas once they would take part in challenging and detailed debates about the patients they met and examined on rounds, they now "too often failed to question cogently or listen carefully or observe keenly.... Something was profoundly wrong with the way they were learning to solve clinical puzzles and care for people."

... These advocates, led originally by David Sackett and his colleagues at McMaster University in Canada, argue that doctors have preferred to rely on experience and 'expert opinion', as opposed to research and statistical evidence, out of laziness and a misplaced deference to the authority of received medical wisdom.

Worse, the same advocates argue that when doctors do consult the "evidence base," they often do so in ignorance of what makes good and bad science. Groopman views the evidence-based approach, which aims to make clinical decisions follow from statistically valid information in the form of "systematic" reviews, guidelines, or algorithms as ill-informed by the realities, complexities, and uncertainties of medical practice.

...Often patients have conditions or combinations of conditions that do not easily match the supposed evidence. Sometimes patients have problems that are not easy to study scientifically. A strict requirement for evidence before acting may mean that physicians will stop thinking, stop evaluating each patient as a unique human being, and stop applying their knowledge to the particularities of the person before them. Groopman rails several times against the "bean counters" of medicinedoctors who recommend treatments that are seemingly supported by statistics but may not be appropriate for the person they are facing.

There is a still deeper fault line within medical practice. On average, about 15 percent of a doctor's diagnoses are inaccurate. Groopman directs a well-aimed arrow at a system of medical training that more often than not fails to investigate why these diagnoses are missed. Doctors are rarely taught to ask how an error could have taken place, let alone how it could be avoided in the future. Most are unaware of their mistakes. Even if patients remain unwell, no systematic effort is made to find out where doctors may have gone wrong. Doctors are uncertain about their own uncertainties. (Although for some doctors, such as radiologists, Groopman cites alarming research that shows the worse their performance, the more certain they seem to be that they are right!)

...But Groopman reserves some of his most bitter criticism for his colleagues within academic medicine. They have fostered a belief that anyone can take care of patients. This "arrogance" has created a culture at academic medical centers where research is applauded and teaching is taken for granted, where writing scientific papers (for journals like The Lancet) takes precedence over developing clinical skills. He very emphatically offers two examples of inferior, some might say even cruel, care at Memorial Sloan-Kettering hospital in New York City:

In one case, he describes a patient who desperately sought treatment at this prestigious institution. But after his cancer failed to respond to chemotherapy, his doctor simply abandoned him, refusing even to return his calls.

In a second example, a Sloan-Kettering oncologist told a woman in her fifties with spreading bladder cancer that there was no scientific evidence that would support any further treatment. He spoke of protocols, data, percentages, and statistical likelihood of her survival, and the technicalities of research studies. He was oblivious to her needs, to her hopes and fears. And he left her deeply distressed.

Doctors are trained to deal with success, not failure. This hospital may be a cancer center of high international standing, yet Groopman makes the fair argument that the values,attitudes, and behavior of a doctor matter far more than the reputation of the institution at which he works. And here Memorial Sloan-Kettering, at least on the basis of these two instances, falls short of Groopman's high standards.

So much for the prevailing environment of medicine today. But matters take a more sinister turn when one asks just how well doctors think.

Groopman draws extensively on the emerging cognitive science of medicine, which seeks to understand the mistakes doctors make in evaluating the information they gather from a patient's history, the physical examination, and results of investigations. He reviews the errors and biases that most doctors unconsciously succumb to when thinking about what their findings mean for a patient's diagnosis and treatment.

There is a rich and rather disturbing variety of human weaknesses to consider when watching a doctor at the patient's bedside. Physicians can be easily led astray by seeing the patient from only one and often very negative perspective, independent of what the clinical findings suggest. Patients might be stigmatized if they are thought to have a mental health problem, or caricatured if they are judged to have engaged in self-harming behavior, such as alcoholism. This kind of mistake is called "attribution error."

"Availability error" occurs when a doctor makes a decision based on an experience that is at the forefront of his mind but which bears little or no relation to the patient before him. For instance, a specialist in gastroenterology may only think of the gut when evaluating a woman with abdominal pain. He may not think of gynecological causes for her symptoms. The ready availability of his own specialized experience in his assessment of what is wrong with a patient can seriously bias a doctor's judgment.

"Search satisfying error" is yet another source of misshapen medical thinking. It takes place when a doctor stops looking for an answer to the patient's problem as soon as he discovers a finding that satisfies him, albeit incorrectly. He gives up too soon.

"Confirmation bias" intrudes when the doctor selects only some parts of the information available to him in order to confirm his initial judgment of what is wrong.

"Diagnostic momentum" takes over when the doctor is unable to change his mind about a diagnosis, even though theremight remain considerable uncertainty about the nature of a patient's condition.

And "commission bias" obstructs good clinical thinking when the doctor prefers to do something rather than nothing, irrespective of clinical clues suggesting that he should sit on his hands.

Doctors are not routinely taught these cognitive pitfalls. Nor are they trained to learn from their effects. Yet these errors and biases can prove fatal. Most doctors are unaware that their thinking is prone to predictable mistakes. Our systems of medical practice neither seek to detect these mistakes nor feed their lessons back to doctors to prevent their recurrence.

An all too typical error is that doctors simply stop observing the patient carefully. Add to that inattention a tendency to hurry the consultation the economic incentives and pressures to see more patients in less time are immenseand cognitive errors become common. In the face of acute time pressure, doctors will come to rely more and more on shortcuts to make judgments. Pattern recognition based on an instantaneous appraisal of the patient will become the norm. Indeed, the capacity for spot diagnosis is a revered skill among clinically minded physicians. But speed may well create the conditions for further error.

Despite his greater knowledge, the specialist is not immune from these missteps. Specialization can confer undue and sometimes dangerous confidence in those who possess such knowledge. Groopman invites doctors to question any expert who dismisses an unusual cluster of symptoms and signs on the grounds that "we see this sometimes." Specialists' appeals to some kind of mystical diagnostic skill owe more to the high opinion they have of themselves than to any kind of clinical reality.

As most of us who have sought medical help will testify, miscommunication is not uncommon between patient and doctor. Many physicians have demonstrable gaps in their ability to convey important information to patients. They are often especially bad in giving advice about how to use prescription medicines. Electronic decision aids devices that supposedly help doctors to arrive at the correct diagnosis are unlikely to help, even though many extravagant claims are made for the impact of information technology on health. Groopman believes such electronic fixes might actually encourage more mistakes. They are a distraction. They promote a reductive and unthinking kind of checklist behavior. And they divert the doctor away from what should be his primary focus: the patient's own story.

Groopman draws very clear and precise conclusions from his review of the surprising array of cognitive dangers that face doctors. Most important, perhaps, is his claim that "competency is not separable from communication."

Communication skills for doctors are nothing new. There is already great attention paid to communication during medical training. But some critics still argue that an emphasis on communication is not relevant to all branches of medicine. If you are going to come under the surgeon's knife, surely, these skeptics say, you would rather have a surgeon who can cut accurately than one who can converse beautifully. Groopman anticipates this charge. Based on his own labyrinthine experiences as a patient who had operations and many other treatments for pain in the lower back and, later, his hand, he dismisses the accusation of irrelevance: "the surgeon's brain is more important than his hands," he affirms.

In truth, of course, a good surgeon needs both a sound brain and steady hands.

Doctors must also learn to think differently. A solid base of medical knowledge is not enough to be a good physician or surgeon. Research into cognitive errors in medicine reveals that most mistakes are not technical. They stem from mistakes in thinking. Intuition, a clinical sixth sense, for example, is unreliable. But equally, the assumption that medicine is a totally rational process is also wrong. Doctors may be reasonably smart, but they repeatedly fall into common and well-defined traps.

Physicians can guard against these traps by heightening their sense of self-awareness and becoming conscious of their own feelings and emotions, responses, and choices. All too few doctors have this skill today. Indeed, a doctor's training can instill utterly contrary traitsconfidence and certainty, in particular, which might close off an awareness of one's usually unconscious weaknesses. Instead, uncertainties should be acknowledged. Unveiling what we are unsure about would not only be more honest, it would also likely promote a degree of collaboration between patient and doctor that has hitherto been lacking.

The corollary of admitting uncertainty is that doctors should be more aware of their errors and should more freely and openly disclose them. Only then will they be able to evaluate and learn from their mistakes. This statement sounds too obvious even to deserve mention. Yet the prevailing medical culture is still heavily weighted against revealing even the possibility of error. Disclosing uncertainty and error will demand a deep change in medicine's attitude toward emotion. Most physicians fail to recognize, let alone analyze, their own emotional states in clinical encounters. This repression of feeling misses an important variable in the assessment of a patient's experiences and outcome. The emotional temperature of the doctor plays a substantial part in diagnostic failure and success.

Possibly the most radical proposition that Groopman advances from the doctor's point of view, anyway is that the physician should seek a new ally in helping to correct the cognitive errors and biases inherent in his makeup. This new ally is the patient. Patients can ask questions that pull doctors away from the traps they might otherwise fall into.

Groopman concludes:

For three decades practicing as a physician, I looked to traditional sources to assist me in my thinking about my patients: textbooks and medical journals; mentors and colleagues with deeper or more varied clinical experience; students and residents who posed challenging questions. But after writing this book, I realized that I can have another vital partner who helps improve my thinking, a partner who may, with a few pertinent and focused questions, protect me from the cascade of cognitive pitfalls that cause misguided care.... That partner is my patient or her family member or friend who seeks to know what is in my mind, how I am thinking.

What makes a good doctor? Physicians like to think of themselves as members of a profession. But definitions of profession and professionalism change. A century ago a doctor was considered to be part of a social elite. He and medicine was then very much a masculine endeavorhad a unique mastery of a special body of knowledge. He professed a commitment to levels of competence and integrity that he expected society to respect and trust. This commitment formed the basis for a social contract between the profession and the rest of the community. In return for the moral values, knowledge, and technical skills displayed by doctors, society bestowed on them the authority, autonomy, and privilege to regulate themselves. This version of professionalism is now moribund.

Doctors are no longer masters of their own knowledge. For a start, in many Western countries women now outnumber men at medical schools. The public is also far more educated than it was a century ago. Patients have access to the same information as doctors. They may know more than most doctors about their own condition. Meanwhile, doctors increasingly work in teams. Their responsibilities are shared with many other professionals, nurses, therapists, and pharmacists, for instance. The clinical hierarchy might still favor the doctor. And it is true that the doctor still takes final responsibility for a patient's care. But the notions of absolute mastery and control no longer hold.

Ideas of privilege, autonomy, and self-regulation are also outdated. For usually good reasons, doctors have been cut down to size in our society. Partly this graying of their public image is because doctors are now seen as fallible. Society is less willing to bow to a doctor's once sacred authority. As a result, doctors are being made more accountable than ever before to the public. This process has not been without pain. In some countries, such as the UK, they have finally lost the power to govern themselves. Instead, public agencies have the final responsibility for judging their performance.

Competence, knowledge, judgment, commitment, vocation, altruism, and a moral contract with society remain at the heart of what it means to be a doctor. But there are new dimensions to professionalism which herald something of a revolution in the philosophy of medicine. It is these domains that underpin the cognitive science set out by Groopman.

The patient is a far more powerful force in a doctor's professional life today than in past generations. The patient expects to be more the equal partner of the doctor. Medicine's goal is not only to cure or palliate disease. It is also to promote a person's well-being and dignity. Many patients want to be engaged participants in a doctor's thinking, not just its passive recipients. Whereas once doctors spoke of the doctorpatient relationship, they now increasingly talk of the patientdoctor interaction. The inversion is significant as well as symbolic. It denotes a shift of power from professional to patient. Interaction also better indicates the greater equality in their alliance. The word "relationship" often carried a strong hint of paternalism.

The expectations society has of medicine have changed. Doctors have duties to society, as well as to patients and themselves. They are part of an expensive system of health care which has to be managed responsibly. Doctors have to be good stewards of that system and not merely practitioners working with single patients. These wider responsibilities sometimes run counter to a doctor's well-developed sense of independent identity. The pace of change in medicine is also so fast that doctors must demonstrate their continuous ability to keep up-to-date as knowledge advances. They should be willing to concede that they are part of a multidisciplinary health team. And patients expect a little compassion to leaven their doctor's technical expertise.

In research conducted in Britain, doctors seemed to value this more modern description of professionalism, despite their inherent conservatism.[4] Physicians have also developed a strong sense of social commitment, despite their having less power and authority. In the US, for example, nine out of ten doctors rate community activity, politics, and patient advocacy as important aspects of their work.[5] Doctors seem to be adapting to changing social mores. However, rather than expect doctors to somehow absorb these values randomly during the meandering course of their training, some medical educators are now designing programs to teach professionalism, assess and evaluate it, and identify the best conditions for strengthening and protecting professional values in often highly pressured clinical settings.[6] This is why Groopman's argument is so timely.

Good doctoring is about listening and observing, establishing a trusting environment for the patient, displaying authentic empathy, and using one's skills and knowledge to deliver superb care. But a neglected aspect of this professionalism is getting doctors to think about their own thinking. Only by doing so are doctors likely to reduce the number of errors they make. What should they do?

Encouraging patients to tell and retell their stories is essential. Patients' fears about what might be wrong or their anxieties about the future course of their illness should be drawn out into the open. Whatever the doctor's own attitudes about the patient, it is a critical element of any mutually respectful therapeutic partnership that the doctor acknowledges the patient's version of the truth of his or her story.

This acknowledgment may mean repeating tests or reconsidering a long and strongly held diagnosis.

In their encounters with patients, irrespective of the financial incentives to be more efficient and productive, doctors must try to remain systematic and thorough when they take a patient's history and conduct physical examinations. Shortcuts are dangerous. Thinking requires the investment of time. Groopman repeats the same lesson again and again: slow down. The more time a doctor takes, the fewer cognitive errors he will make. (It is just this kind of slowing down that may be more and more difficult under the time pressures imposed by some HMOs and other insurance organizations as part of their demands for efficiency.) And once a decision is made, always retain an element of doubt. That sliver of uncertainty will leave the doctor not only better able to recognize failure early but also free to revise his opinion as new information comes to light.

This change in behavior cannot be brought about at the flick of a mental switch. Groopman gives a telling example of what might be involved in changing the cognitive culture of medicine. Victoria Rogers McEvoy is a former Wimbledon tennis star who now works as a pediatrician in Boston. To ensure that her self-awareness and so her ability to detect her own cognitive errorsis maximal, she prepares herself psychologically before each clinical encounter, just as she used to do before every tennis match. If doctors understood the biases they were prone to make and briefly but formally prepared themselves to be ready for those biases before seeing a patient, a great deal of medical error might be prevented.

But while we are expecting more insight from doctors, it is also fair to ask: What makes a good patient? Posing questions to improve a doctor's thinking is certainly part of Groopman's answer.[7] If the consultation with a doctor is going badly, the patient might ask, "I feel that we are not communicating very well with each other. What is going wrong? How can we do better?" When considering a diagnosis, the patient might suggest, "What else could it be? Is there anything you have discovered that doesn't quite fit? Is it possible that I have more than one problem? What other parts of my body are near where I am having my symptoms?" And when a treatment is being prescribed, the patient might inquire, "How well tested is this drug for the condition I have?"

Groopman's investigation into how doctors think has important potential to recalibrate the way medicine looks at itself. Doctors are imperfect, to be sure. But their errors carry valuable information that can be put to good clinical use. A doctor's mistakes are perhaps best seen as signs of a mind at work. The patient and doctor together share a common purpose in getting this mind thinking straight.

Notes [1] Metropolitan, 2007.

[2] His advice includes: "don't complain," "ask an unscripted question," and "count something."

[3] Eric G. Campbell et al., "A National Survey of PhysicianIndustry Relationships," New England Journal of Medicine, April 26, 2007, pp. 1742 1750.

[4] The quite substantial recent changes in British ideas of professionalism are set out more fully in Doctors in Society: Medical Professionalism in a Changing World (London: Royal College of Physicians, 2005). Full disclosure: I was a member of the working party that gathered evidence for this inquiry, and I wrote its final report.

[5] See Russell L. Gruen and colleagues, "Public Roles of US Physicians," JAMA, Vol. 296, No. 20 (November 22/29, 2006), pp. 24672475.

[6] See Frederic W. Hafferty, "ProfessionalismThe Next Wave," The New England Journal of Medicine, Vol. 355, No. 20 (November 16, 2006), pp. 21512152.

[7] Again through a revealing story, Groopman endorses faith as an additional means to help someone become "a productive partner in the uncertain world of medicine." Although trained in science, many doctorswill resist those pure scientists who consider religion an outmoded and medieval relic of our age. Religious belief many have a powerful and valuable point to play in some patients' response to their illness. See, for example, James Randerson, "The God Disunion: There Is a Place for Faith in Science, Insists Winston," The Guardian, April 25, 2007, p. 3.



Tags: , , ,

Thursday, May 17, 2007

First CFS Detractor Dies

The CFS community bids a less-than-fond farewell to Dr. Stephen Straus, who passed away from brain cancer this week.

In 1988, Straus commented that CFS was a "psychoneurotic condition", and he spent the remainder of his career trying to prove it.

In researching what was then called "non-HIV AIDS", Straus found serious depletion of T4 cells.  He nonetheless clung to the notion that this was a purely psychiatric condition, a rather odd stance for someone whose training was in virology.

His 1992 study demonstrated statistically significant, abnormally low levels of the critical hormone cortisol, precisely the opposite result that would have been expected if his theory of psychological causation had been accurate.

Straus demonstrably ignored the results of even his own research when it contradicted his prejudiced beliefs about the cause of CFS.

Straus's psychologic theory called for patients to heal themselves by reducing stress.  However, Professor of Psychology Phyllis Chesney observes "I believe that CFIDS and other disabled patients are often subjected to a level of stress that is more than a healthy person can bear. It is stressful to be forced to cash in your life insurance policy, mortgage your home to the hilt, spend all your savings, borrow from everyone you know, be denied your rightful health and disability benefits or forced to fight for them precisely when you are totally incapacitated."

Professor Chesney continues "As a professor of psychology, a psychotherapist and courtroom witness, I am an expert in how frequently women are diagnosed as mentally ill when they are not. When I first explored sexist bias among mental-health professionals in Women and Madness in 1972, I did not realize that when western medicine does not understand and/or cannot cure an illness, it first denies that the illness is real by saying it is merely a psychiatric disorder. Once asthma, arthritis, lupus, multiple sclerosis, Lyme's disease, allergies and Gulf War Syndrome too -- were dismissed as primarily psychiatric in nature."

As technological advances led to the development of objective evidence, asthma, arthritis, lupus, MS, etc., were accepted as legitimate medical conditions.  Theoretically, the same will eventually occur with CFS as the objective medical evidence becomes more widely-known. 

Yet, Straus's legacy remains in the number of people whose only knowledge of CFS comes from his numerous public declarations that we're all (regardless of age or gender) "depressed menopausal women", "psychoneurotic" and "hypochondriacs".  Only within the CFS community is it common knowledge that his own research proved him wrong.

As Prof. Chesney observes, many doctors will apply an erroneous mental illness diagnosis to a female patient rather than admit that they don't know what's wrong.  It's been proven true time and again in the CFS community: seriously ill women are quickly labelled as depressed or hypochondriacs (whereupon the search for a physical cause for their symptoms ends) while less-afflicted men get a full medical work-up.  Thanks to the 25-30% of CFS patients who are male, we know that the real problem is, according to the virologist who discovered the AIDS virus, "a virus we don't have a test for yet"; we know that brain scans find lesions similar to those in MS; we know the symptoms all have a neurological explanation.

No thanks to Straus or his hand-picked successor, a stress expert who also espouses a psychiatric explanation even when it requires him to ignore vast amounts of research proving there's a virus involved.

It's rather fitting that the man who insisted that our symptoms were all in our heads died of a problem that was all in his head.

Tuesday, May 15, 2007

Just the Facts, Ma'am

A man should never be ashamed to own that he is wrong, which is but saying in other words that he is wiser today than he was yesterday. – Alexander Pope

The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd. - Bertrand Russell

Once upon a time, there was a viral illness called Myalgic Encephalomyelitis. Which shares part of its name with Poliomyelitis, and frequently occurred in epidemics side-by-side with polio.

Then came the plan by CDC to change the name to the benign Chronic Fatigue Syndrome, so they wouldn’t have to admit there was another viral epidemic so soon after AIDS. Decades of research into ME was swept under the carpet, and CDC set out to convince us that all these patients – even the men, children and 20-something women – were simply depressed because they were menopausal.  That the only problem was fatigue, and that none of the Central Nervous System symptoms were real.

The problem is that CDC can mandate what it’s called in the US, but has no authority in the rest of the world, where it continues to be called by its proper name. And doctors in those countries continued to research post-viral ME.  Some CFS patients got advanced scans showing viral damage, brain lesions, and Central Nervous System dysfunction.

Dr. Anthony Komaroff of Harvard now counts 4000+ studies worldwide showing biological abnormalities in CFS/ME. Yet there are still those doctors and disability judges who stubbornly cling to their absurd opinions that CFS patients are faking, or depressed, or mentally ill, and could go back to work if they'd simply get counseling.

These patients return from a psych evaluation with a clean bill of mental health and the doctors and disability judges still refuse to believe that the patient is mentally sound, but suffering from a virus.

These patients see other doctors who do specialized blood tests proving there is something very wrong, and the doctors and disability judges refuse to acknowledge that those test results exist.  (In my disability decisions, there is not one word about my blood tests.  The judge could not continue to maintain that there is nothing wrong with me if he told the truth about those tests, so he doesn't mention them at all.)

Instead of admitting that new technologies that allow us to find scientific proof of biological abnormalities makes us wiser than we were, some people cannot allow themselves to be proven wrong. Like the Flat Earthers, they ignore any evidence they don’t like.

That the opinion that CFS is fakery was widely held is not evidence that it is not utterly absurd. 4000+ studies prove that it is absurd. The wise man would admit that the facts prove his initial impression wrong. But for some people 400 million studies would not be enough to get them to change their minds.

Our only hope is that as the evidence becomes more widely known, these people will find themselves laughed at the way they once laughed at CFS patients.

Fan Mail

A fan letter from the president of a health blogging site:

"I read your blog. You are an articulate writer and rightfully passionate about your topic. Though I am more familiar than most, with the issues surrounding CFS and Fibromyalgia, I learned quite a bit for the time I spent reading."

Then he invited me to become a guest author on his site.

For each person who has complaints about the blog, there are several others who think it’s great, including a couple who’ve invited me to write for their websites. I must be doing something right to be getting those invitations.

Unfortunately, for all the success that Steve’s consortium of activists (me included) are having with getting people to read and send out the annual Request for Congressional Action, there are still those stubborn people who refuse to accept the truth that CFS is caused by a virus, not a screw loose, and still keep telling us to just "stop whining and go back to work".

The problem isn’t that we lack the incentive to go back to work, but that the ADA says we’re not entitled to the accommodations we need. In the real world, it’s not enough to show up at the office, you have to be able to do the work. When you’re having paralytic muscle weakness, you can’t do manual labor, and when you’re having "fibro fog", you can’t do brain work. I’ve known CFS/fibro patients who were so affected by fibro fog that they couldn’t put together a simple sentence; they couldn’t function in a job that requires them to read or to write memos. At my worst, I have had days when I could not remember how to shape numbers and letters – I couldn’t even function in a receptionist job because I couldn’t take a phone message. And that’s not counting the fact that the law says needing rest days during the week makes me "disabled". Technically, 12 years ago when for a few months I had to take every Wednesday off in order to be able to make it to work Thursday and Friday, I fit the court’s definition of "disabled", excessive absenteeism, even though I was functioning adequately the 4 days a week that I was there.

As long as there are people who won’t acknowledge that they’re wrong, that there are objectively testable neurologic and immunologic abnormalities proving CFS is a biological illness, there will be a need for activists to speak out. As long as there are doctors who cling to the idea that post-viral CFS is really just a psychiatric problem that can be cured with anti-depressants, there will be a need for activists to educate them that anti-depressants are useless; anti-virals have been proven to help.

For as long as that takes, I’ll be here.

Sunday, May 13, 2007

Medical Miracles

We’ve become so accustomed to medical miracles that we tend to assume that people are only disabled because they don’t want to get better.

Certainly, I’ve been accused of it myself.

In the first few years of being off work, I did everything I could to get better: I ate healthy food, did as much walking as I could tolerate, took vitamins and any non-prescription remedy I could get my hands on, slept as much as I could, and tried, desperately, to get well. The missing component, though, was the one that I had no ability to do for myself: the pain and sleep problems were far in excess of what could be treated with non-prescription remedies. I needed a prescription and my repeated requests fell on deaf ears.

Someone suggested that I could get my hands on Benadryl, which is the active ingredient in some sleeping pills, so, just take a couple more every hour until I found the dosage that would let me fall asleep. I tried it. I had an interesting out of body experience, but I didn’t get any sleep that night.  I needed something stronger than even half a bottle of Benadryl.

I have been fighting sinus headaches for 30 years. I have one today where my sinuses are so swollen that my teeth and jaw hurt, too. There again, I have done everything that I can – I moved from a cool damp climate to a warm dry one, and stay indoors almost 24/7 half the year during rainy season and allergy season, but all my bedtime preventive measures last night didn’t prevent me from waking up at 1:15 AM in severe pain. By that point, my face was so swollen that I couldn’t stand the weight of the heating pad on it. With that much pain, I never did get back to sleep.

I already know that Urgent Care will not give me a prescription for anything unless there’s an infection; if my sinuses are just swollen, as they are today, they’ll send me home with instructions to do what I’ve already been doing: I’ve rubbed a liquid pain reliever on my gums, taken Advil, inhaled VapoRub, put a heating pad on it, and given it hours to ease up. If anything, it’s worse than it was at 1:15 AM; it’s spread from my sinus and jaw upward to my eyes and temples.

The first time I had a sinus headache this bad, I went to the dentist and had the most-painful tooth pulled. The tooth was in perfect condition, not even the beginnings of a cavity; as soon as the dental anesthesia wore off, we realized the problem had never been the tooth ... the sinus was still swollen and the teeth around the extraction still hurt. I could have all the teeth on that side pulled and still be in pain, because the problem is the swollen sinus that Urgent Care won’t do anything about because it’s not infected.

A friend with similar problems told me her doctor did surgery to give her some relief. That’s something I can’t do for myself, and if your medical plan requires that your PCP give you a written referral to the specialist, and the PCP won’t write that referral, you can’t get the surgery, even if you offer to pay for it yourself. And without the surgery, there’s no relief.

People who rehab after serious accidents don’t do it themselves. They don’t crawl out of the wrecked car and go directly home: they get weeks of medical care in hospitals and physical therapy. If they need prosthetics to help them function, they get them. On the other hand, CFS patients are typically sent home with the erroneous information "there’s nothing we can do for you", and then blamed because they cannot return to work without the proper professional help. The assumption is made that the patient doesn’t want to work, not that the doctors aren’t able to help.

Eventually I did get an effective sleeping pill. After a few months of sleeping properly, my immune system revved up enough to start attacking the virus that, uncontrolled, was making me sicker and sicker. No amount of valerian, hot baths, warm milk, or relaxation CDs (or combination thereof) had been able to get me to sleep in the previous three years because the problem was too complex for a simple solution. That proved my point that if a doctor had been willing to give me a prescription sleeping pill, instead of excuses, I might have been able to get well and go back to work. I’d done the best I could with the things available to me without a prescription and none of them were strong enough for the massive intervention I needed.

The same thing with pain pills. Hot baths, heating pads, enough Advil to give me an ulcer ... nothing I could do for myself was strong enough. According to Jeanne Hess, RN, the best time to take a pain pill is at Level 3; if you wait till you reach 4-of-10, it may not work. I was dealing with 7,8,9 and 10 with nothing stronger than Advil; for most of a year, it never got down to a 3 where I had the best chance of nipping it in the bud. Yet even reporting Level 7-10 was not enough to get me a prescription pain pill. It’s been suggested that the fact that I made the super-human effort to walk into the doctor’s office (instead of hiring a man to carry me in) and approached the doctor rationally instead of screaming were probably factors in not getting the needed prescription. A doctor who stereotypically expects men to be stoic and women to be helpless and in tears isn’t going to believe that a woman is in severe pain if she’s not hysterical and is stoically standing on her own two feet through sheer willpower.  But I’ve gotten false diagnoses of emotional problems while showing no emotion at all, so I didn’t want to burst into tears and give them more justification for writing "depression and anxiety" in the records when the real problem was neurologic pain, or be carried in to support the theory that I’m just looking for excuses to have someone do things for me because I’m too lazy to even walk.

It took 7 years before I got a prescription pain pill. Again, the change wrought by something that I could not obtain without the complicity of a medical professional was significant.

Medical miracles require a combination of medical help, luck and patient persistence. But without the first one, it’s highly unlikely that a patient will be able to cure herself of something as disabling as severe CFS.  I managed to keep myself out of the hospital, which is a miracle in itself, but once the doctors let me deteriorate as far as they did without proper medical treatment, the self-help I could do was more a matter of not getting worse than of getting better.

This Awareness Weekend, let’s put the blame where it belongs: on the pharmaceutical companies that haven’t come up with a magic pill, on the FDA who haven’t approved the one thing that has been shown to help CFS, on the doctors who think that writing "depression" in the file relieves them of any further responsibility to find something that helps the patient. But let’s stop blaming the patient for not being able to get better when the things they need to get better aren’t available to them. If I could have written my own prescriptions for sleeping pills and pain pills, I have no doubt that I would’ve been back to work full-time in a few months.

It’s never right to blame the victim for things beyond their control. I did right all the things that I could, but there were many things I had to rely on others to do for me, not the least of which was writing prescriptions for the things theexperts say will help.

Friday, May 11, 2007

Awareness Day ... it's more than just knowing the letters C.F.S.

The latest ad for the medical group that doesn’t know the first thing about CFS touts their research into "everything from AIDS to Autism".

Or as Dorothy Parker described Katharine Hepburn, "the gamut of emotions from A to B."

They may be researching everything from AIDS to Autism, but what about Bacterial Meningitis through Zulu Fever?

At least they’re honest that their expertise is limited to only those diseases beginning with A, and does not include things further down the alphabet, like CFS or fibromyalgia. So maybe they learned something from my complaint that advertising "innovative treatment" was false advertising when they were stuck on a single treatment that had long since been proven totally useless – hardly innovative treatment for CFS, even 20 years ago!

But they’re still running the equally false ad insinuating that their doctors consult a whole university of other experts, "because the last thing [a patient] wants to feel is alone." What I felt under their care was Very Alone. If there was a clinical trial that might help me, that’s how I had to find it: alone. They weren’t going to provide me with one shred of information about diagnosis, prognosis, or the newest treatment. If I wanted any information, I had to find it alone, and if I didn’t feel up to spending hours researching because my health had deteriorated too far under their "care", too bad for me. My doctors didn’t consider it their responsibility to find out what might help me when their favorite treatment failed; they considered their responsibility complete when they scolded me for being an uncooperative patient for stubbornly refusing to improve when given pills for a condition I didn’t even have.

I recently received the following e-mail:

The following link to an article written by Rick Vassar entitled "How Good Are Your Drugs?" was an enlightening article that many patients may be interested in viewing. The link to the article is: http://blogcritics.org/archives/2007/04/25/222959.php

The article was forwarded to me from a nonprofit that seeks to promote the best practices to prevent medical error called Prevent Medical Error.

For better health,

Gail Kansky

President, National CFIDS Foundation, Inc.

Readers Digest this month had an article about medical errors with some frightening statistics about their frequency. www.mothersagainstmedicalerror.com want to prevent any other family from losing a loved one to medical error. But there are other types of medical errors besides those that result in death. Some of us are sentenced to a "living death" because of medical errors that didn’t kill us but nonetheless forever changed our lives.

The more people who speak out against medical errors, the more likely steps will be taken to avoid medical errors in the future. As long as doctors are human, there will be medical errors, but there are ways to reduce the number. Listen to what the patient says; don’t substitute what you "think" she meant. Don’t diagnose by stereotype. If you don’t believe the patient, verify with other sources – the doctors who thought I just didn’t want to work would’ve learned otherwise if they’d talked to my bosses. If what the patient said didn’t make sense, ask questions to clarify – don’t just turn things around in your head till you come up with a timeline that makes sense. If the patient isn’t improving with the treatment you’re giving, figure out a new diagnosis or a new treatment – if that requires listening to what the patient suggests or spending a little time researching, swallow your pride and admit you don’t know everything.

Unfortunately, CFS/fibromyalgia patients are likely to be affected by medical errors. Doctors aren’t clear how to diagnose them, so people who have CFS/fibro are told "it’s all in your head" and people who don’t wind up with the diagnosis because the doctor knows just enough about the diagnostic criteria to be dangerous. Patients are told "there’s nothing we can do for you" – there are things they can do, what they can’t do is give you a single pill to cure all your symptoms. Doctors give out standardized medical advice "exercise your way back to health" without being aware that a CFS patient who exercises may wind up permanently disabled, or try to fix a severe sleep problem with simple solutions like "regular bedtime and wake time", without understanding that some cases of insomnia are rooted in pain or biochemistry – if it started while the patient was employed and observing a strict schedule, it’s not going to be solved with a strict sleep schedule.

CFS/FIBROMYALGIA AWARENESS DAY MAY 12

May 12th is International Awareness Day for CFIDS/ME/CFS and is observed with
various activities around the world. The date was chosen to memorialize the
birth date of Florence Nightingale who inspired the founding of the
international Red Cross while bedridden and suffering from a neurological condition
similar to CFIDS/ME.

Please write your elected officials, and enclose the Request for Congressional Action prepared by a committee of patients: http://www.co-cure.org/Congressional_Action07.htm

Thank you!

Dr. Peterson once felt that the solution to CFS lay in science, but now believes that the solution lays in politics.  Only by making Congress aware of the problems can we hope for the problems to be solved. 

Tuesday, May 8, 2007

Michael J. Fox Speaks Out for Research

Speaking at a biotechnology conference yesterday, Michael J. Fox mentioned that one of the drugs he takes for his Parkinson’s has been around since he was 5. He’s amazed that they haven’t come up with anything newer and better in 40 years.

I am equally amazed that in the 50-60 years since the polio epidemics, no one has come up with any drug that helps the fatigue and muscle weakness of polio (which is identical to the fatigue and muscle weakness of CFS). With 2 million polio survivors and 1 million CFS patients in the US alone, there would be a big market for something that would help with the exhaustion and paralytic muscle weakness that characterize both conditions.

The problem is that science didn’t notice that just because the polio virus was under control in terms of new infections, that did not mean there was a cure for those who had already been afflicted. You won’t find what you’re not looking for.

Fox asked "Who's funding innovation today?" At least in terms of CFS research, the answer has always been that most research funding has come from patients. Fox’s foundation funds research into therapies for Parkinson’s. There are plenty of other diseases where patients are scraping together a few dollars from their below-poverty-level disability checks to fund desperately-needed research, while Big Pharma focuses their attention on such ridiculous things as the anti-depressant for dogs that Fox joked about, or turning normal traits like shyness into medical disorders requiring lifelong daily medication, rather than the very real needs of people who are disabled by diseases without a treatment.

Fox criticized them for not putting enough emphasis on risk-taking which could lead to therapies for 20,000 of the world’s 30,000 identified diseases. Now, I will tell you that I’ve learned from college buddies who work in the industry that it takes a lot of work to come up with a new drug, so on one level, the industry doesn’t like to take those expensive risks, but I can also tell you that when SARS hit the radar, CDC announced in just 8 days that a "cure" had been found for it. SARS got a lot of publicity, but was never the epidemic that CFS or polio were.

By contrast, twenty years after I got CFS, they’re still telling me that the best they can do is give me a generic pill for sleep and a generic pill for pain, and a generic pill for every other symptom, each of which has their own set of side effects, which can be disabling in themselves, especially in combination. For example, taking the pain pill so I can sleep along with the allergy pill so I can breathe puts me to sleep for most of the next 24 hours, and in the few hours I’m awake, I can’t think clearly, which means that I can’t work. If you had to choose between sleeping and breathing, which would you choose? It’s a choice I make every night.

Fox criticized "it’s not about the money you spend, it's about spending the money more effectively," and suggested they focus less on getting headlines and huge profits and more on the effect they have on patients’ lives. Just talking about CFS patients, we cost the US economy between $9 and $25 billion a year in lost productivity, and the majority of us who are disabled have been unable to get Disability benefits because of false assumptions that CFS can be faked or (as I was told by a judge) that I could return to work if I’d get counseling for depression. (Depression which the judge’s own psych expert said I don’t have.)

It would be a real blessing both to the patients and to the economy to get us back to full-time work, but there doesn’t seem to be any interest by anyone in doing anything to get us back to work other than bullying. But telling someone to go back to work after they’ve been told by employers that they are too disabled to work is not a long-term solution – you lie your way into a few more jobs and get fired a few more times when it becomes obvious to yet another employer that you’re too disabled to work. Eventually, your reputation precedes you and you can’t get a job at all.

The fact that I’ve started my own business proves that I don’t need someone ordering me to return to work ... I need someone to make it possible for me to work more than 6-10 hours a week. When I tried12 hours in one week, that was enough to put me back in bed for the rest of the month.

This is common for most disabled CFS patients – the problem isn’t that they don’t want to work, the problem is that they can’t work enough hours to be employable. I’m told State VocRehab won’t bother with someone who can only work 1-2 hours a day, nor someone who needs excessive sick days, both of which are typical for CFS patients. If you have a close friend or relative who owns a business, they may be willing to create a job for an hour a day, but a lot of us aren’t in that position; the people I know in this town are either retired or employees or disabled themselves. I wracked my brain and the only business owner I could think of was the one who fired me and wasn’t going to take me back knowing that I was now even more disabled.

My symptoms are not unusual. In the US alone, they’re shared by a million other CFS patients, 2 million polio survivors, and 400,000 MS patients. That’s a good-sized market for any pill they might come up with to treat the combination of symptoms.

But if no one is looking for a treatment for these things, which normally fly under the media radar, I can assure you of one thing with absolute certainty: 20 years from now, CFS patients are still going to be without a treatment that can get them back to work. And, unlike anti-depressants for dogs, that’s no laughing matter.

Monday, May 7, 2007

What do Polio and CFS have in common?

Margaret Williams writes:

OVERLAP OF ME/CFS WITH POST POLIO SYNDROME

Prestigious papers, for example, Annals of the New York Academy of Sciences 1995 (containing 50 papers on clinical neurology, neuroscience, electrophysiology, brain imaging, histology, virology, immunology, epidemiology, with contributors from the US, Australia, Canada, France, Sweden and the UK) point out the similarities between post-polio syndrome and ME/CFS, notably that the mechanism of the extreme fatigue (called "visceral exhaustion") --is exactly the same in ME/CFS as in PPS.

Dr. Richard Bruno writes:

Post-Polio Sequelae Awareness:

In taking about polio vaccination, it should not be forgotten, as it was 50 years ago, that there are still nearly two million North Americans alive today who had polio during the epidemics of the 1940's, 50's and early 60's. At least 70 percent of paralytic polio survivors and 40 percent of nonparalytic polio survivors are developing Post-Polio Sequelae, unexpected and often disabling symptoms that occur about 35 years after the poliovirus attack, including overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, and difficulty swallowing and breathing.

Unfortunately, polio survivors and health professionals are not aware that PPS exist and are readily treated by reducing physical overexertion, "conserving to preserve" polio survivors' remaining poliovirus-damaged neurons, and not by exercising and the "use it or lose it" treatment polio survivors received 50 years ago. Polio survivors and health professionals need to be aware of the cause and treatment of PPS.

* * *

As hard as it may be for those of us now alive to believe, polio is another illness that was once attributed to psychological causes, until someone discovered the virus that causes it, and doctors had to change their thinking to meet the changed science.

Dr. Bruno's book about post-polio suggests that CFS patients had either a mild case of polio or some variant virus that the standard polio vaccine doesn't protect against.  He notes that many of the CFS epidemics occurred alongside polio epidemics.  Although my generation did have the polio vaccine in early childhood, we know from the flu vaccine that the vaccine that protects against 123A does not protect against 123B, nor against 122 or 124.  What's to say that my virus two decades ago was not some variant of the polio virus?  Due to the assumption that polio has been eradicated in the US, no one has ever tested me for the polio virus.

When a CFS patient reports paralytic muscle weakness, as many of us do, they are accused of faking.  There are some insider reports that when Sophia Mirza was hospitalized, she asked for a drink of water and was told that if she was thirsty enough, she'd get out of bed and get it herself, as if this were "hysterical paralysis" and not the paralytic muscle weakness which has been documented by researchers who used a full range of advanced neurological tests to measure muscle function.

Tough love has its place, but it's not in the "treatment" of post-viral paralysis.

A dear friend who was a polio survivor started developing post-polio in the 1980s (precisely as Dr. Bruno notes, about 35 years after she had polio).  The determination was that she had been overusing the healthy muscles in her arms since her legs ceased to function, and that continuing to overuse them in propelling her wheelchair would eventually leave her arms paralyzed, too.  She was switched to a motorized wheelchair to save her remaining muscle strength.

So, it was absolutely no surprise to me when about 20 years later, I found myself in the same situation -- the more I used my hands during the day (typing, knitting, holding myself upright to walk), the weaker my arm muscles were by the end of the day; some days, if I kept busy all day, I was unable to lift the weight of a full fork to my mouth at dinner.  I recognized it as the same thing Sheila had experienced.  The recommendation she received, to preserve her remaining muscle strength through increased rest worked for my hands/arms, too.  If I limit myself to typing about 30 minutes at a time, and then rest my hands for several hours, I can use my hands later in the day.  If I decide to type for an hour or two straight, I can count on needing two hands to lift my glass of water that afternoon, and three will probably leave my hands totally useless the rest of the day.  (The reason I cannot go back to work in any sort of clerical position.)

Yet, even though the medical profession recognizes these symptoms in post-polio as being very real manifestations of a neurological problem, those same symptoms in CFS are still being dismissed as "impossible" and "imaginary".  Telling some people that the symptoms of CFS are almost identical to those of MS or post-polio results in hitting a mental roadblock; they've already made up their minds that CFS is a purely psychological problem and cannot shift gears to process its similarities to accepted neurological conditions.   

 

Saturday, May 5, 2007

CFS/ME AWARENESS MONTH

Thanks to LKW for passing this along:

ME AWARENESS MONTH 2007

Below is a plain text version of the IiME (Invest in ME) Flyer, on their site at: http://investinme.org/IIME%20Newsletter%20Oct%2006.htm

Their May 1 & 2, 2007 International ME Conference has just ended and no doubt will produce copious amounts of press releases and reports for all of us to read, also, as an illustrious group of the best researchers and advocates filled the roster. I applaud all of the massive efforts required to make this happen.

~~~

And I continue to ask:

Why does the the USA have no planned ME Awareness activities?

Why does it not recognise ME? (G93.3, ICD10)

Why does it do NO ME research?

Why does it ignore those of us so horribly ill with such a debilitating neurogenic illness?

LKW

~~~~~

ME AWARENESS MONTH 2007

A national campaign throughout the UK aimed at raising awareness of the neurological illness Myalgic Encephalomyelitis (M.E.) and publicizing events to raise funds for biomedical research into ME. Myalgic Encephalomyelitis (M.E.) is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3). With at least 250,000 sufferers of ME in the UK alone, many of them children, ME is estimated (by parliamentary EDM 260) as costing the UK economy £3.5 billion per year and the true figure may be even greater.

No public funding of biomedical research is currently taking place in the UK so biomedical research projects are funded solely by the work of ME support groups and individuals. At present there is no medical diagnostic test for ME and no known specific treatment or cure.

Despite the impression often given by the press and psychological professionals, ME is not a psychological illness; psychological investigations (which have had the lion's share of research funding in the past) cannot uncover its cause and psychological therapies cannot provide a cure.

The varying symptoms experienced by many severe ME sufferers may include: visual problems, vocal/muscular limitations, general chronic weakness of limbs, cognitive problems such as memory loss & concentration difficulties, problems with balance and fine motor control, muscle pain, malaise, hypersensitivity, sleep & temperature disturbance, cardiovascular symptoms, digestive disturbances, neurological disturbances. ME is a multi-system illness and requires investment in biomedical research to provide treatment and a cure.

The recent case of Sophia Mirza, who died from ME, shows the urgency of funding research into treatments and in finding a cure. ME is five times more prevalent in the UK than HIV/AIDS.

During May 2007 events up and down the country will raise awareness of ME. Two ME charities - ME Research UK and Invest in ME are joining forces to arrange and publicise conferences and Have a Cuppa events for ME Awareness Month 2007.

On 1st-2nd May 2007 Invest in ME will be hosting the second IiME International ME Conference in London. ME Research UK will be hosting their conference in Edinburgh on 25th May 2007.

Other events around the world will be announced in the months leading up to May 2007 - with ME Awareness Day (12th May) being the focal point for the month.

Our aims are:

1. Funding research: With no public funding of biomedical research into ME we are hoping to attract more funding for research activities coordinated by ME Research UK. We hope that the government will recognize the high-quality research being carried out by scientists being funded by ME Research UK.

2. Raising awareness: ME needs more awareness from the public, politicians and healthcare staff. It is now the leading cause for long term absence from school. ME Awareness Month will be an opportunity to raise the profile of ME and allow more knowledge about the illness to be provided.

3. Providing a voice: 25% of people diagnosed with ME are severely affected - house-bound, often bed-bound, left with little help from the medical community, often made to struggle to obtain benefits and left to an uncertain and debilitating future.

* * *

The answer to LKW's questions about why the US takes the stance it does can all be traced back to decisions made early on:

"On a name change petition, Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine." Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses, Katrina Berne, Ph.D., page 10

To now admit that they were wrong is something that a government agency will never do.

We saw this last year when, in the lead-up to Awareness Month, CDC announced that they had found biological proof of CFS, and immediately, almost with the same breath, tried to explain away this biology with psychology.

My problems started with a 105 fever.  While it may be possible to psychosomatic a 99 fever, I doubt there is anyone, even the greatest guru of mind/body control, who can psychosomatic all the way up to 105.  I knew 20 years ago that the problem was a virus; CDC still refuses to accept that.  They populate their studies with patients with psych-based fatigue and then cannot find the post-viral changes that would differentiate those of us with viral onset from people with depression.

Ken Fujioka, M.D. of the respected Scripps Clinic in San Diego says: "For a long time, we've known that viruses can get into your DNA and reprogram your body."  Dr. Fujioka knows that.  Patients know that.  CDC seems to have great difficulty accepting that.  To the great detriment of a million patients in the US alone, who get sicker from lack of treatment.

A fellow patient has observed that CDC does not listen to the patients -- CDC tells *us* what our symptoms are, and if we say that our experience is different, then *we* must be wrong.  The best source of information is first-hand from the person who actually had the experience.  But when we respond to CDC's description of that which they currently choose to call CFS with "I don't know what they have, but it isn't what I have", our own experience with ME/CFS is pooh-poohed so they can continue to espouse their psychological biases. 

I've experienced it myself.  When I tried to explain to a doctor that my problems started in mid-February 1987 with a high fever, I was informed in no uncertain terms that I was mistaken.  This doctor who had never met me before, didn't know what my health had been prior to February, didn't bother to ask me any questions about my emotions, knew better than I did that I didn't have a virus, I had psychological problems related to my marital state.  According to him, I never had a virus.  He didn't have to explain the first-hand observations of the person who cared for me during the virus, other than to point out that he was the doctor and therefore he knew best, and that those of us who had what he didn't -- first-hand observations -- were mistaken because we were not doctors.

He refused to accept the opinion of a Professor of Counseling that I lacked the emotional component required for a psych diagnosis, that the "symptoms of depression" he noted were actually the symptoms you'd expect of someone with the flu.  If he would not admit to a mistake in the privacy of his own office, then what are the odds of CDC making a public admission of error?

Wednesday, May 2, 2007

Dead from Misdiagnosis

Thanks to Lara for pointing out this one:

Now dead at the age of twenty-four and suffering terribly
since the age of twelve, young Australian Jenny Hill had
been through the medical mill since being labelled with the
ME/CFS wastepaper basket diagnosis that had done her health
prospects overwhelming and catastrophic damage.
In an excerpt delivered at her funeral service, Jenny Hill
wrote in 1998:

"I am 17 and I have had chronic fatigue syndrome for almost
6 years. Along with thousands of other children, teenagers
and adults I live in a world of pain, unimaginable fatigue,
paralysis and intermittent Alzheimer's. Despite medical
technology we are still a long way from answers concerning
the cause, the duration or the prognosis. It is one of the
cruellest and debilitating illnesses one could imagine. It
can last from one year, to proving fatal. At the same time
some doctors don't even recognise chronic fatigue syndrome
as a disease, but rather a mental state. It is not much
wonder sufferers become depressed when they see the whole
world passing them by. Life is going on without them. It
is like trying to catch an escalator that is just beyond
your reach."

A simple label to append and an easy box to tick that
generates phenomenal income for the psychiatric lobby,
countless hundreds of thousands - if not millions - of
patients worldwide have also been erroneously labelled
with the catch all wastepaper basket diagnosis of ME/CFS.
Jenny had in fact been suffering from MNGIE (mitochondrial
neurogastrointestinal encephalopathy).

Chris Hunter from the Alison Hunter Memorial Foundation
(http://www.ahmf.org/) writes: "In 2004, two weeks before
Jenny died, the diagnosis of mitochondrial neurogastrointestinal
encephalomyopathy (MINGIE) was confirmed. At the 2005
ME/CFS Research Forum, University of Adelaide, convened
by AHMF, Dr John Duley Senior Scientist, Chemical Pathology
discussed MINGIE in his presentation 'Diagnosis of
mitochondrial and metabolic disorders relevant to ME/CFS'
(http://tinyurl.com/24qsj5).

After Jenny's death and on 5 April 2007, Julie Robotham
published an article on Jenny's case in the Sydney Morning
Herald entitled 'Fight against the unknown'
(http://tinyurl.com/2ben5t). We quote extracts from
this article:

"Jenny first got sick in 1992, aged 12. A bout of flu
progressed into headaches and exceptional tiredness, and
by the next year, with no resolution in sight, she was
referred to a psychiatrist. Three years later a leading
immunologist still thought she was having trouble re-entering
normal life after being knocked around by a virus. He
prescribed gradually increasing exercise - a controversial
therapy for people with presumed chronic fatigue syndrome -
and a self-help book."

"...Jenny frequently felt unsupported and misunderstood,
even occasionally viewed with suspicion as the girl with
no good excuse to be sick."

"All you have is this awkward feeling this girl doesn't
fit in the hole people are trying to put her in,"

".. once the patient is labelled with a [psychiatric]
disorder, it's very hard to reject that diagnosis."

"To admit error, to backtrack from a dead-end, requires
humility and mental fortitude, especially if a patient
is displeased."

"Diseases don't read textbooks."

"Those who coast along on knowledge even a year or two
old risk missing a diagnosis that newer research might
have illuminated."

"It is an argument.....for regular, formal reaccreditation
of doctors."

> > Read the full text of the Sydney Morning Herald
article here http://tinyurl.com/2ben5t > >

Do we really need more SSDI judges?

In the last couple of days, both the NY Times and the Washington Post have addressed the backlog in the SSDI system and the need for more judges.  730,000 applicants are still waiting to get the benefits they need and deserve.

If the judges they currently have would stop playing games with applicants, they could process more files. My application has been appealed and re-appealed and re-re-appealed since 2000. In the time that it has taken for them to keep turning down someone who even their own VocRehab expert says cannot work, they could have processed several additional applicants and worked through the backlog.

But I’ve heard from several people inside the system that benefits don’t necessarily go to the sickest, but to the most persistent. The sickest tend to miss deadlines or give up because they don’t need the stress. (This is why I turned mine over to a lawyer – she’s healthy, so she won’t miss a deadline, and the only stress I have from the process is the financial stress of not having a reliable income for the past 7 years.)

This is something our elected officials have to hear about: how much time and money is wasted by the system in playing these head games with legitimately disabled applicants. From my very first hearing, SSDI’s own VocRehab experts have repeatedly said I cannot work, and each time, the judge has chosen to ignore his own expert.

The fastest and easiest way to clear up that 3/4 million person backlog is to assign some clerical employees to review the files with one goal in mind: if there is a doctor's report or a VocRehab expert saying the person cannot work, then the payments should be automatically approved, on a wholly objective basis.  No room for the judge's opinion that CFS/fibro patients are not as deserving as someone with a different diagnosis.

The amount of money that has been wasted on judges, experts, and government lawyers to keep hearing the same testimony in my case would have paid my benefits for a few years.  Where's the outrage over this government waste?

Tuesday, May 1, 2007

Fog is not an Illusion

http://www.nytimes.com/2007/04/29/health/29chemo.html?th&emc=th

Many CFS/fibro patients complain about mental fogginess, and this has been brushed off in the same way as their illness is brushed off.

Apparently, cancer patients have the same problem, and are also brushed off by doctors when they complain about it.

According to this NY Times article "approaching a doctor does not guarantee help. Susan Mitchell, 48, who does freelance research on economic trends, complained to her oncologist in Jackson, Miss., that her income had been halved since her breast cancer treatment last year because everything took longer for her to accomplish.

She said his reply was a shrug.

“They see their job as keeping us alive, and we appreciate that,” Ms. Mitchell said. “But it’s like everything else is a luxury.”

Another patient described getting sidetracked from one chore with another, “I have an almost childlike inability to follow through on anything,” Ms. Lowen said.  Again, something very familiar to most CFS/fibro patients. 

Being able to think may seem like a "luxury" to doctors who are focused on life or death, but it's not a luxury to a patient who has repeatedly been told by a Disability Judge "you look healthy, go back to work".  If you cannot stay on-task, you can't work.  If you cannot remember what you're supposed to be doing, you can't work.  Even menial manual labor requires a few functioning brain cells so you can learn the simple repetitive task; for a fogged-in patient who cannot even remember what to do with the toothbrush that she's used every day for decades, it's asking too much to remember how to do something she's just been taught. 

The doctor may think he's succeeded by keeping you alive, but not if you wind up dead of exposure or starvation because you cannot work to pay for rent and food and are denied Disability benefits because the judge cannot "see" the fog that prevents you from working.

You'll hear CFS patients struggling to remember their own names.  My parents have lived in the same house my entire life ... at my worst, I had to look up their address because I couldn't remember it.  Yet when I did poorly on a memory test in the Mental Status Exam, it was written off as inaccurate becausethe evaluator could not believe that this score could be legitimate.  #1, he didn't know that this was precisely what the tests should show for a CFS patient in severe relapse, and #2, he didn't realize that I was thrilled to have remembered even the few things that I got right.

Dr. Sheila Bastien, who has examined many CFS patients, found CFS fog to be "worse than traumatic brain injury" cases in litigation.  So there is proof that it's there, but like so many other things about CFS/fibro, there are also people who don't want to acknowledge it as truth no matter how much proof exists, because this would force them to challenge their beliefs about CFS/fibro.