Friday, June 22, 2007

CNN article on Fibro

CNN has a new article about CFS/fibro
http://www.cnn.com/2007/HEALTH/06/21/pain.remedies/index.html  Go most of the way down the page.

"In the past year, some of the biggest headlines in pain management have been about fibromyalgia (chronic bodywide pain in joints, muscles, and tendons) and CFS, two conditions that strike women at as much as six times the rate of men. After years of failing to take these conditions seriously, the Centers for Disease Control and Prevention and other groups have recently mounted aggressive public-information campaigns alerting women to the prevalence of these conditions and the importance of accurate diagnosis and treatment.
Experts have also made dramatic gains in finding treatments that work by focusing on the sleep problems and physical weakness that seem to fuel these diseases. (Could painkillers be hurting your heart? )

Marly Silverman of Pompano Beach, Florida, learned she had fibromyalgia and CFS more than 10 years ago. "It felt like acid chemicals going through my veins," she says, describing the excruciating pain that forced her to quit her job as vice president of a bank after fruitlessly seeking treatment from a variety of specialists.  Today, Silverman manages her pain with a plethora of remedies, including painkillers, anti­spasmodics (muscle relaxants), and lidocaine patches for localized pain. To speed research into these complex and mysterious illnesses, Silverman founded PANDORA, a patient advocacy and research organization that cosponsors a national conference on the latest research into these and related neuro-endocrine immune conditions.

"There's no question that women aren't always taken seriously when they ask for help with a condition that doesn't have a clear-cut explanation."  "The solution is to take a proactive approach, the Shurmans say, even if you need to look in the mirror and give yourself a pep talk and write down a list of symptoms or questions before you head for the doctor's office. "The most important thing is to be persistent," Gloria Shurman says. "If you're in pain, don't ever take no for an answer."


I'll echo what Gloria Shurman said -- "don't take no for an answer". If that doctor won't take your pain seriously, do whatever it takes to get to a pain management clinic. Most PCPs are hesitant to prescribe pain pills because of a fear that they'll be investigated. Pain management specialists don't have that phobia.

At the medical group where I was repeatedly refused pain pills, apparently because they didn't believe my reports of severe pain, the head of the pain management clinic says his policy is "pain is what the patient says it is". If I could've somehow gotten to him, the problem would have been solved and I'd be back to work.

Diagnostic Defiance by Margaret Williams

What is wrong with those doctors and politicians who continue to damage patients who are incredibly sick by denying the very existence of the formally-classified disorder from which these patients suffer? What drives these doctors not only to denigrate but also to misdiagnose these patients through adherence to their own misplaced ideology, as well as to disseminate misinformation about the disorder, thereby ensuring that appropriate support and care for patients is either withheld or withdrawn. As if this were not harmful enough, these same doctors recommend that necessary investigations should not be performed on these very sick people, even though other countries describe these patients as some of the sickest members of society. What is it about myalgic encephalomyelitis (ME) that brings out the worst in these influential decision-makers who currently dominate both medicine and politics in the UK and who follow an ideological agenda that has been referred to as "the hegemony of the left and its stranglehold on the universities, media, civil service and other key institutions (whose) deliberations are inseparable from political manoeuvring" (Londonistan. Melanie Phillips. Gibson Square, 2007. ISBN978-1-903933-90-9)?

Why do such decision-makers persist in dismissing the irrefutable evidence that ME/CFS is not "chronic fatigue"? As has been pointed out so often, it was in 1990 that the American Medical Association was forced to issue a correction that said: "A news release in the July 4 packet confused chronic fatigue with chronic fatigue syndrome; the two are not the same. We regret the error and any confusion it may have caused". What is so difficult about that unambiguous statement that Wessely School psychiatrists are unable to understand?

As these psychiatrists continue to ignore the distinction between chronic fatigue and the chronic fatigue syndrome (which they call "CFS/ME"), are they perhaps unaware of this distinction? If so, as self-professed experts, why are they not aware of this distinction?
Trudie Chalder, a former mental nurse who is now Professor of Cognitive Behavioural Psychotherapy at King's College, London and whose research interests are listed on Google as "epidemiological and aetiological studies of FATIGUE in adolescents and adults" describes herself thus on the KCL webpage: "I am an expert in cognitive behavioural psychotherapy (CBP) and I am particularly interested in CBP for chronic fatigue syndrome". This seems to be further proof - if it were needed - that in defiance of the evidence to the contrary, the Wessely School still sees "CFS/ME" as a mental health issue.

If these Wessely School "experts" cannot differentiate between two different nosological entities with different criteria and symptomatology, by what standards are they considered "experts"?

Why are the UK adult patients' support organisations (the ME Association and Action for ME) not hammering this home as relentlessly as the psychiatrists who continue to obfuscate this cardinal distinction?

As someone recently wrote to Heather Walker of AfME about the disparity between a report that (together with the MEA) AfME had commissioned in 2000 and AfME's 2001 re-defined statements on the benefits of graded exercise: "There's a bit of an irony, because Wessely, after the House of Lords debacle, wrote a notoriously twisted piece called "What's in a name" which he then deleted, perhaps now they have £300,000 plus of taxpayers' money to facilitate what reads like their 'final solution' against those whom they can now barely conceal their anger and contempt. The PACE document is an extraordinary piece of dishonesty and deceit from start to finish, and if you compare it with the application they made in 2002 to the MRC, it becomes ever more sinister (when one spots) how they've toned it down for public consumption, and have made alterations to conceal what they were originally trying to get away with to get the 'right' results for their main sponsors, the Department for Work and Pensions (whom they 'advise', to the very serious detriment of the public affected by ME). Ordinary decent members of the public are being herded into that trial under false pretences. When they publish the 'results', there will be widespread suffering on a scale hitherto unknown (due to) the damage the Institute of Psychiatry and Barts and their supporters have wreaked via GPs and their influence on the DWP --- never mind the research environment which they have managed to devastate over the years. Their latest wheeze is to invent an IoP 'Biomedical' Research Centre to keep control. None of this has happened mysteriously. Individuals are responsible, and they tend to have names".

The need for the distinction between chronic fatigue and CFS/ME remains highly topical. Much has been written recently about the latest prevalence estimates of "CFS" released by the US Centres for Disease Control: one such commentator is UK psychiatrist Professor Peter White of The Centre for Psychiatry, Wolfson Institute of Preventative Medicine at Barts in London, who is one of the three Principal Investigators in the much-criticised UK MRC PACE trial on "CFS/ME".  In his commentary White makes statements that seem to defy both credibility and the principles of scientific research (How common is chronic fatigue syndrome; how long is a piece of string? Peter D White. Population Health Metrics 2007 5:6 doi 10.1186/1478-7954-5-6).

Some of his statements require scrutiny, and the following - taken in order as they appear in his paper-- are examples: "If the disease in question has no biological marker and is difficult to define clinically, the problem of working out the accurate prevalence becomes esoteric. CFS is just such an illness". The Penguin English Dictionary defines "esoteric" as "intelligible to or intended for the initiated only". Why should White suggest that attempts to ascertain the prevalence of a world-wide disorder be restricted to an elite minority, when the disorder has been classified for years as "A serious legitimate diagnosis CDC Priority I Disease of Public Health Importance" by the CDC itself?

It is misleading and incorrect for White to imply that because there is no single definitive biomarker for "CFS", it is difficult to diagnose. There are patterns of consistent and reproducible abnormalities by which ME/CFS can be diagnosed with virtual certainty but these are the very investigations that are denied to UK patients on the recommendations of Wessely School psychiatrists themselves.

White's psychiatrist colleague, Professor Rachel Jenkins of the Institute of Psychiatry, pointed out as long ago as 1991 that "Once one is familiar with the concept, such patients are in practice not too difficult to differentiate from those with true psychiatric illnesses. The physical symptoms should be an aid to diagnosis, although they may be wrongly attributed to psychological illness unless care is taken in eliciting them" (BMB 1991:47:4:241-246)

The key question is: what is meant by "CFS"? If the article upon which White is commenting is referring to what is now known in both the UK and the US as ME/CFS, White would seem to have exposed his own ignorance and biases once again. It should never be forgotten that White believes that the biomedical model of illness should be replaced with the psychosocial model, especially for complex disorders like "CFS" (see www.meactionuk.org.uk/Proof_Positive.htm ).

There is no single definitive biomarker for many other serious disorders, including multiple sclerosis, but competent clinicians who rely on experience and clinical skill and not on tick-box "evidence-based" medicine are able to recognise specific features of such disorders and to offer diagnosis, compassion and support to patients.

What is different about ME? Why are so many UK doctors so intimidated by the omniscience of the psychiatric lobby to the extent that they fail to consider the evidence for themselves and then to speak out against such a pervasive and malign influence? There is an abundance of published evidence that sets out the numerous replicable biomedical anomalies found on appropriate laboratory testing of ME/CFS patients, so why does White disregard this evidence and why is he not publicly challenged by the medical establishment for doing so?

It is futile for White and his Wessely School colleagues to pretend that such evidence does not exist. It has existed in the medical literature for the last 60 years and it continues to mount. It is an invalid argument for these psychiatrists to claim (as they do) that the character of the disorder (ME) has altered over time to the extent that ME no longer exists, when it is they themselves who are responsible for the deliberate broadening of the case definition, thereby diluting and even removing the cardinal features of the disorder.

"Since fatigue is one of the most common symptoms reported by patients in general, delineating a specific syndrome with fatigue as a central feature risks arbitrary decisions about ascertainment". Yet again, White ignores the fact that "fatigue" is not the central feature of ME/CFS. The central feature is something very different from "fatigue": it is post-exertional fatigability and incapacitating exhaustion with concomitant malaise. Fatigue is, however, a central feature of many psychiatric disorders.

"It is no great surprise that half of all doctors do not even believe (CFS/ME) exists". Does White never consider his own role in this scientifically insupportable phenomenon?

"In order to count someone as fatigued - the central criterion for a diagnosis of CFS - individuals only needed to score the median or more of the well population, either for fatigue or inactivity". To reiterate: fatigue is not the central criterion for a diagnosis of CFS/ME but it is for many primary psychiatric disorders.

"Co-morbid psychiatric conditions may have inflated the prevalence". This is ironic, given that White was one of the team who produced the Oxford 1991 case definition of "CFS" that was responsible for including patients with psychiatric disorder whilst excluding those with neurological signs as seen in ME. It was this broadening of the patient research pool that has caused an inflated prevalence of "CFS/ME" in the UK. It is the Oxford criteria that White is using for the MRC PACE trial (thus ensuring that patients with primary psychiatric disorder are included along with those who have genuine ME. This will produce skewed results). White notes a similarly high prevalence in Wessely's UK study of fatigued primary care patients, and - crucially -- that when those patients who had a co-morbid psychiatric disorder were excluded, the prevalence fell to 0.5%. Does this not tell Wessely School psychiatrists anything? It seems that what it tells them is that they must not exclude those with psychiatric co-morbidity, otherwise their catchment will fall.

"Previous longitudinal studies suggest that psychiatric ill health can both follow and precede CFS". What is the implication of this statement? Psychiatric ill health can both follow and precede any severe organic illness and cannot determine the direction of causality in the case of "CFS".

"Our current criteria for diagnosing CFS are arbitrary, and we need to widen the net to capture all those people who become so chronically tired that they can't live their lives to their full potential". How often must it be said that "chronic tiredness" is far removed from ME/CFS? How is it that these psychiatrists consistently deny the unique characteristics of ME/CFS and focus on "fatigue" to the exclusion of those unique characteristics? How does mixing patient populations help the advancement of medical science? Widening the net to "capture" all those who are "tired" not only ignores the existing evidence about ME/CFS but perpetrates a grave disservice upon patients who suffer from it by diluting the case definition even further than at present to include anyone who complains of "tiredness".

As ME/CFS expert Professor Leonard Jason from the US so aptly states, patient assessments that "fail to capture the unique characteristics of these illnesses might inaccurately conclude that only distress and unwellness characterise these illnesses, thus inappropriately supporting a hypothetical construct called functional somatic syndromes. Using a broad or narrow definition of CFS will have important influences on CFS epidemiologic findings, on rates of psychiatric co-morbidity and ultimately on the likelihood of finding biologic markers". (Problems with the New CDC CFS Prevalence Estimates. Leonard Jason. http://iacfs.net/p/1,544.html ).

Why is it that the basic rules of scientific research are not applicable to the work of certain psychiatrists, namely the requirement to define the study population as tightly and as cohesively as possible?

***

As a fellow activist frequently points out, "Chronic Fatigue Syndrome" is an artificial construct created to cover up an epidemic of a severe, contagious illness also known as Myalgic Encephalomyelitis. Government records reviewed by Hillary Johnson in writing "Osler’s Web" reveal the ulterior motive of those who created this name: to portray it as psychological in nature so that disability benefits were more easily denied or terminated, and, intentionally, to make it easily confused with the common problem of "fatigue", when, in fact, fatigue is the least of our problems.

The claim that there is "no biological evidence" of CFS has been repeated so often that it’s accepted as truth. But the truth is, Dr. Anthony Komaroff of Harvard has counted over 4000 research studies worldwide showing biological evidence of neurologic, immunologic, endocrine and other biological abnormalities.

CFS patients frequently report insomnia or unrefreshing sleep. But fixing the underlying sleep disturbance fixes only the "fatigue" that would be expected from not sleeping well. It doesn’t cure the other symptoms – the ones that aren’t known to the general public who’ve been brainwashed into believing CFS=fatigue and nothing more. Like anyone else who doesn’t sleep well, I function better now that I’m averaging 6-8 hours sleep instead of the 2-3 hours I was getting without proper medication, but I still have objective symptoms that can be quantified, not just intangible "fatigue".

Tuesday, June 19, 2007

Sicko!

There are those in the medical profession who see the entire profession as saints and accuse me of making up things when I say that there are incompetents out there who misdiagnose and mistreat patients, and point the finger at one particular institution where the problem seems endemic, with illustrations that even other people I know have suffered at their hands; it’s not just me, and it’s not just limited to CFS patients.

One woman I know was totally ignored in their ER for hours as she got steadily worse; when she became so weak that she could not walk, she was scolded for throwing up on the floor instead of walking to the ladies room, but was not moved up the priority list, nor even offered a glass of water to combat her dehydration or a container to throw up in so it wouldn’t contaminate the floor. Finally, she had someone take her to a different ER, where she was given top priority because it was so obvious that she was in serious distress and couldn’t wait much longer. If the ER is so understaffed that they cannot cope with all the non-trauma patients, then either they need to have more staff on call for the rush periods, or they need to tell non-trauma patients upfront that they would be seen much sooner at another ER instead of letting them wait for 24 hours (or more). And in what nursing school do they teach that screaming at a patient for throwing up on the floor is "compassionate care"?

http://www.cnn.com/2007/US/06/13/hospitaldeath.probe.ap/index.html demonstrates that the problem of ignoring patients in ERs is widespread.

In a hospital at the other end of the state (not the one where my friends and I had problems), "Rodriguez was bleeding from the mouth and writhing in pain for 45 minutes while she was at a hospital waiting area. Experts have said she could have survived had she been treated early enough. ... My wife is dying and the nurses don't want to help her out," Rodriguez's boyfriend, Jose Prado, is heard saying in Spanish through an interpreter on the tapes. "What's wrong with her?" a female dispatcher asked. "She's vomiting blood," Prado said. "OK, and why aren't they helping her?" the dispatcher asked. "They're watching her there and they're not doing anything. They're just watching her," Prado said. Dr. Bruce Chernof, director of the county Department of Health Services, which oversees the facility, has called Rodriguez'sdeath "inexcusable" and said it was "important to understand that this was fundamentally a failure of caring."" According to CNN, when her boyfriend called the attention of the medical staff to the fact that she was vomiting blood, they told him "No, that’s chocolate" and walked away laughing.

Even those who see the medical profession through rose-colored glasses will be hard-pressed to explain why someone vomiting blood should have been ignored in the ER until she died. That’s one of the things that we learned in our First Aid classes should get immediate medical attention from someone with more training than we were getting in our First Aid class. Did the ER personnel not learn the same thing?

According to CNN, more people die in the US every year due to medical errors than car accidents, breast cancer or AIDS.

Just coincidentally, as that story broke, Michael Moore was in the state capitol talking about his new movie "Sicko" http://www.sacbee.com/111/story/219530.html

""There is no room for the concept of profits when taking care of people when they are sick," Moore told a crowd of nearly a thousand nurses who swarmed the west steps of the Capitol. ... "What kind of sick, cruel system is this?" Moore asked his audience. The crowd responded with: "Sicko.""

And therein lies the problem. When doctors are accustomed to receiving bonuses for limiting the number of tests ordered, profit takes precedence over patients. None of the doctors ever investigated whether my insurance would allow them to order the tests I requested; they were just so used to dealing with an HMO which gave them bonuses for keeping costs down that they automatically assumed it would cost them money to do more tests. In fact, under my insurance, it would’ve earned the medical group more money to have their lab do additional tests -- all the tests I asked for to prove that I had a neurological/immunological/endocrinological problem, not some psychiatric problem (for which I didn't meet the diagnostic criteria).

Now, it may well be that some doctors are ordering unnecessary tests on some patients. But if you’re the one patient in a thousand who really needs that test so that they can differentiate between similar symptoms and give you the proper treatment for what truly ails you, that test is not "unnecessary" and should not be denied just sothe doctor gets a cost-cutting bonus. Whatever bonus he got that year, it’s not enough to compensate for me being denied a normal life.

If the subject had come up, I would have told them "I will pay for the test myself, if that’s what it takes to convince you that my problem is not psychological"; but I was never given that option, and later doctors were astounded that these tests had not been done to verify that I truly had post-viral CFS and not a purely psychological problem. They kept asking me "why wasn’t this test done earlier?" and could not come up with a valid medical reason why it had been denied when I asked for it earlier.  If I reported symptoms X and Y, it should have been done, period.

It’s a "sick, cruel system" that makes people sicker, even permanently disabled or dead, in order to maximize profits and bonuses.

The patient’s health must come first. Before profits. Before bonuses. Even before doctors’ egos. What’s sick is not the patients, it’s the system. And the system needs to be fixed, with bonuses for getting patients healthy and keeping them healthy, not for denying treatment.