Saturday, April 14, 2007

Playing the Blame Game

There was an article in this morning’s paper about doctors who blame the patient
http://www.sacbee.com/107/story/154551.html

It’s happened to me. Doctors who ask me about my health/exercise/dietary habits, and because they cannot imagine that it is possible for someone with such healthy habits to be so sick, they accuse me of lying and demand that I confess to being a coffee-swilling alcoholic couch potato who smokes 3 packs a day and a steady diet of junk food, because the extent of my disability requires they blame the patient for bringing it on herself. They just can’t get their heads around the notion that healthy habits are not a 100% guarantee of health.

As Dr. Wilkes notes in his conclusion “sometimes bad things just happen”. I ate right and exercised every day. The only thing that I did to bring this on myself was to leave my apartment during flu season. Somehow I came in contact with someone who had the bug that gave me the virus. Since none of my friends or co-workers came down with CFS, none recalled being sick the same week I did, the assumption has to be that it was a chance meeting with a stranger. If you want to put the blame on someone for my illness, let’s put the blame on the person who was out and about while contagious, sharing their germs with innocent bystanders.

One of my friends has a car that seemingly has a target painted on the side; I’ve lost track of how many accidents she has been in where she had the green light and was T-boned by someone who ran the red light or pulled out without looking; she’s an innocent victim, too. The only thing she’s guilty of is having extremely bad luck. The police have cleared her of blame in every accident.

Let’s address the mind-body connection here. No, I’m not insinuating that CFS/fibro have a psychological cause. But there is evidence that someone who is already sick will feel worse physically when they are under mental stress.

The doctor who lays the blame for the symptoms on the patient will bring on an attack of the guilts that will more than likely make the patient’s symptoms worse.

It was this false assumption that I was lying about my diet and exercise, alcohol consumption, etc., that likely played into the doctors’ refusal to give me pain pills. Pain pills can also be used to party with -- I know one fibro patient who now takes for pain the exactsame pills he used to party with, but with far different results -- so if I was lying about what I did that caused the illness, then it can be assumed that I’m also lying about the amount of pain I’m in so that I can have pain pills to get high on. Or maybe so that I can sell them on a street corner to have some income because I’m not working.

It’s simply counter-productive to blame the patient. It’s more important to look for the real cause, not give the patient the third-degree followed by a heaping load of guilt. Or an unwarranted psychiatric diagnosis. If someone had made more of an effort to find the physical cause for my symptoms early on, I might have gone back to work within a few months. Instead, we missed the window of opportunity because doctors were playing The Blame Game.

“Go home and don’t eat any of the things that you’ve said you don’t eat, and then come back and tell me if you feel better not eating what you already don’t eat” or “go home and exercise every day for two weeks and come back to tell me if you feel as bad as you say you feel when you exercise” has only one benefit -- it benefits the doctor’s profit margin by getting the patient to pay for another pointless appointment.

Patients go to doctors to get help, not to get blamed for having an illness that they have no control over. Yes, some people get cancer because they chain-smoked; some smokers never get it and some people (most prominently Dana Reeve) get cancer without smoking. So, there’s no reason for doctors to automatically assume that every case of cancer could have been prevented by not smoking, or that a patient is lying when they say they never smoked.

Dr. Wilkes, in his article, puts the blame where it really belongs: on doctors’ attitudes. So does Nurse Fransen (see prior blog post).

Don’t let yourself be made to feel guilty because you have CFS/fibro. You did nothing wrong.

I have faced down many doctors who assume (or, as Professor Kingsfield explains, “make an ASS out of U and ME”) that I smoke (not even one puff in my entire life), drink coffee (gave it up 30 years ago), drink alcohol (I got out of the habit of having it in the house when I was married to an alcoholic), eat fast food (since I don’t drive, it’s not “fast” -- it takes me longer to get to the nearest fast food and back than it would to cook a healthy meal at home), don’t exercise (when you don’t drive, you walk; even when I take the bus, I have to walk to/from the bus stop), and don’t want to work (yuh-huh, which is why I dragged myself back to work in 1987 the day after I was first able to sit propped up on pillows, and in 1999-2000 continued to drag myself into work as my condition got worse and worse, and started my own business the day my Unemployment ran out).

Daring to call the doctor wrong may earn me a reputation as a difficult patient, but someone has to tell them that their assumptions are faulty when they blame me for things I have no control over.

Thursday, April 12, 2007

Frozen Shoulder

Although it's not listed as a common symptom, some support groups have noted a lot of members with frozen shoulder. 

I suffered with it for over a year myself, which caused problems with doing the filing at work, putting the dishes away at home, and getting dressed (when absolutely necessary, I did the required contortions, which gave me intense back spasms for at least an hour, but if I was staying home, it was less painful to just stay in my jammies -- which somehow got into my medical records as being too depressed to get dressed with no reference to any physical reason making the process very difficult and painful, and therefore best avoided). 

Since my grandmother had shoulder problems from bursitis, it made perfect sense when the doctors diagnosed that I also had bursitis in my shoulder.  I didn't connect it to the CFS/fibro and neither did they.  It's one of many objective orthopedic reasons that VocRehab says I cannot work, and it's true, it caused problems with many parts of my job when I was still trying to work, and a lot of tasks that I simply could not do.

www.FrozenShoulder.com claims that it does run in families.  They have self-help information and a short list of practitioners.  I haven't tried their treatment and can't vouch for it.

Mine was solved without medical intervention.  I passed out one day and fell with my arm forced above my head.  My most trusted medical expert's theory was that all the lifting/carrying that my job required had probably caused damage, which healed as adhesions, and that fall tore them loose.

Sophia Mirza: death by CFS and inappropriate treatment

Dr. John Greensmith, who is both a doctor and a patient, calls our attention to an article from the Sydney Morning Herald.

For the benefit of those who are unfamiliar with the Sophia Mirza case, I provide the following background. Since I have been criticized in the past for reciting a summary given to me by a UK activist who had read more on this subject than I had, which summary allegedly had an error in it, I am providing the URLs of the documents I have relied on in making my summary, so that it can be verified that I am accurately reporting what I have read:

http://www.25megroup.org/Campaigning/Awareness%202006/Sophia's%20story/sophia's%20story%2006.htm

In 1999, Sophia Mirza had the flu, and never recovered. The following year she became entirely bedridden. The diagnosis was ME/CFS, which is recognized by the World Health Organization as a neurological disease, not psychological. As Sophia got worse, the doctor involved a psychiatrist, who threatened that if she did not enter a mental health clinic which used Graded Exercise (which most CFS patients report makes them even sicker), the police would "smash the door down". Although a lawyer assured her mother that she did not meet the criteria to be involuntarily committed for mental health reasons (she was not a danger to herself or others), the police did, in fact, break down the door, and Sophia was put in a locked room in a mental hospital. She did not receive even the most basic medical care while there, and although she was released from the mental hospital after a court hearing, she relapsed worse than ever and never recovered. As her condition became worse, her mother called her new doctors, who said Sophia was no longer their patient and refused to see her. A post-mortem found inflammation of the spinal cord, and Sophia became the first person in the UK to have CFS listed on the death certificate as the cause of death.

The report on the medical inquest and implications thereof are available online, and I quote from this document verbatim:

http://www.25megroup.org/Campaigning/Awareness%202006/Sophia's%20story/Inquest%20Implications.doc

The General Medical Council’s "duties ofa doctor" (2001) state that doctors must make the care of the patient their first concern and they must not ‘‘give or recommend to patients any investigation or treatment which (they) know is not in their best interests, nor withhold appropriate treatments’’. ... Although severely sick with medically diagnosed ME/CFS, Sophia was abused by the doctors charged with her care by being wrongly sectioned under the Mental Health Act.

She received no medical intervention such as intravenous fluid replacement – the medical intervention she did receive was to be forcibly removed from her home and incarcerated in a locked psychiatric ward. In her mother’s opinion, this contributed to her death.

Even though the pathology precipitating death varies widely, it is clear that there are premature deaths in patients with ME/CFS: it can readily be seen that very ill ME/CFS patients die if they are medically abused, or if their secondary complications of ME/CFS are medically neglected.

* * *

Victims give clues to the answers (Sydney Morning Herald, 12 April 2007) http://www.smh.com.au/news/science/victims-give-clues-to-the-answers/2007/04/11/1175971183260.html

 by Julie Robotham

The development of an autopsy protocol may help unlock some of the mysteries of Chronic Fatigue Syndrome.

Under the microscope, it could not have been clearer. Sophia Mirza's brain and spinal fluid showed indisputable evidence of inflammation and cell death. The discovery, by the neurologist Abhijit Chaudhuri and a neuropathologist colleague, marked the first time a serious abnormality confined to the central nervous system had been identified at the post-mortem examination of a patient whose principal diagnosis was Chronic Fatigue Syndrome. In turn, that ensured the 32-year-old became the first person in Britain to have the syndrome - also known as Myalgic Encephalomyelitis - recorded as the cause of her death.

In Adelaide last month, Chaudhuri and specialists from all over the world took the first steps towards developing an autopsy protocol that would allow samples to be consistently collected and analysed from the bodies of people who die, like Mirza, after a long battle with the syndrome. These would form the basis of an international tissue bank in an attempt to shed light on what goes wrong in the baffling condition, which often strikes young and previously healthy individuals. It could help "establish the condition as a valid neurological problem", Chaudhuri says, and might lead to treatments.

Chaudhuri, a consultant neurologist from the Essex Centre for Neurological Sciences, says the protocol is intended to allow non-specialist pathologists to collect and preserve samples, which could then be examined by a neuropathologist. The move comes amid concern that brain and spinal cord tissues which might shed light on the disorder are being lost because pathologists do not appreciate their significance.

In Mirza's case and in another autopsy on a young British man, "there was no way [their illness] could be explained by a primary psychiatric condition", Chaudhuri says, referring to a widespread assumption that the condition - which typically begins after a viral illness and is estimated to affect up to 140,000 Australians - is related to mental stress.

Daniel Peterson, an American physician who specialises in Chronic Fatigue Syndrome, says its name has allowed it to be trivialised. "These are very complex patients to understand," he says. "We've been held back by biases." Peterson, who is establishing a research centre at the University of Nevada, says he is most interested in forms of the condition that arise after recognised infections, which seem to trigger immune disturbances.

The specialists' meeting in Adelaide was organised by Christine Hunter, via the Alison Hunter Memorial Foundation, which Hunter formed after the death a decade ago of her teenage daughter, who had chronic fatigue syndrome. As the protocol is formalised, the group will seek endorsement from experts around the world, she says, to accelerate its acceptance by the wider medical community.

Elizabeth Salisbury, a senior staff specialist in tissue pathology at Royal North Shore Hospital, says formal guidelines would encourage those conducting autopsies to retain appropriate tissues for later genetic, antibody or biochemical testing. "One of the difficulties with a disease like CFS is [it] is very much an emerging science," says Salisbury, who is not involved inthe protocol's development. "We don't necessarily understand all the pathological changes that account for the signs and symptoms." Salisbury says families of patients who die after having Chronic Fatigue Syndrome or other complex, elusive disorders usually support tissue removal. "They really do want the answers," she says.

Colin Neathercoat, a director of the advocacy group ME/CFS Australia, says the cost of supporting patients with long-term disability from the syndrome is enormous, and more funding is needed for research into its origins and possible treatments. "We would desperately like to see government engage in this growing problem and recognise its impact on the Australian economy, let alone its impact on sufferers," he says.

Dr. Greensmith’s response:

The "indisputable evidence of inflammation and cell death" observed under the microscope, in the case of Sophia Mirza, reported to be the first person in Britain to have had Chronic Fatigue Syndrome officially recorded as a cause of death (Victims give clues to the answers, Sydney Morning Herald, 12 April 2007), restores Myalgic Encephalomyelitis to its rightful diagnostic place. There never was a good reason for CFS to displace M.E. Whatever M.E. is, it certainly isn't fatigue.

Nor was there ever a good reason for M.E to be considered the province of psychiatrists. There is no evidence of greater incidence of psychiatric history amongst M.E. sufferers than in the general population and, while people with M.E. may have understandable concomitant psychological problems, the one is not a prerequisite for the other. M.E. sufferers and researchers have been clamouring for decades that CFS has been holding back research and that, if you don't look for, you're not going to find the neurological evidence, it was Myalgic Encephalomyelitis all along. Then we can get down to the business of seeking treatments towards a cure.

You don't have to be much of a specialist of any sort to reckon that it would be better for all concerned to spend money on neurological testing while M.E. sufferers are still alive.

* * *

Peter Kemp, a Qualified Counsellor, opined on Co-Cure:

I don't suppose anyone can ever truly know whether the tragic death of Sophia Mirza could have been averted by expert and concerted medical efforts. What I do believe,is that the poor woman died without the full care and support of a trusted and trustworthy healthcare infrastructure. Thank God she had her loving mother.

Jodi Bassett dispels the myth that CFS/ME cannot be medically proved:

http://www.ahummingbirdsguide.com/testingforme.htm

"Many of the articles on Myalgic Encephalomyelitis (M.E.) in the mainstream media (and even some of the medical texts on the illness) unequivocally proclaim that not only are there no tests which can be utilised to help confirm a M.E. diagnosis, but that despite extensive testing no objective or quantifiable abnormalities have ever been found in any patients with M.E. whatsoever. Despite their popularity, these are simply absurd claims.  Tests will only all be normal in M.E. patients – as with all illnesses – if completely the wrong tests are done."

* * *

Unfortunately, there are still some (OK, many) doctors who refuse to learn anything about CFS, being firmly convinced (despite voluminous evidence to the contrary) that it's a psychological problem that can be cured with anti-depressants and a kick in the butt.  The Mirza autopsy proves otherwise, and still, doctors in the UK (who should have heard about it by now) and around the world persist in using psychiatric treatments to cure a virus/infection/inflammation.

By some reports, because Sophia's condition was deemed psychological, she was denied even drinking water in the mental hospital, told that if she wanted a drink, she should get out of bed and fetch it herself, despite being bedridden even before she was committed!  Those reports are plausible; many other CFS patients have reported doctors telling them that they could cure themselves by not letting others care for them, but forcing themselves to get up and do for themselves.  Thousands of us who live alone and have no choice but to get up and do it ourselves are living proof that CFS is not caused by doting caregivers, nor cured by getting your own glass of water; I've been getting my own glass of water since February 1987, and struggling to work since February 1987, and it has not cured me.  In fact, pushing myself to go to work, which several doctors suggested would "give me something to think about besides my symptoms" causedme to get significantly worse and lose my job, and has since caused me to lose clients when working sent me into relapse.  (The doctors' explanation for this is not that I lost my job because I got constantly sicker from trying to keep working, but the wholly unsupportable claim that I was perfectly healthy right up until February 2000 and the symptoms only started after I got depressed because I lost my job.)

Peter Kemp and Sophia's mother have both stated that the so-called "treatment" of putting Sophia in a locked ward without even basic medical care contributed to her death.  I have been told by a respected local rheumatologist that the "treatment" I received caused my permanent disability.  Yet no one takes responsibility for such bad outcomes from bad treatment; the innocent victim shoulders all the burden, financial and physical, resulting from medical neglect and incompetence, while the doctors waltz away without a second thought.  

Professor Nancy Klimas, a world renowned immunologist from Miami, was blunt: "Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society." (Co-Cure, 21st March 2005).

Dr. Klimas' words went unheeded by the medical establishment.  Two years after she laid the blame at the feet of "poorly informed" doctors, they're just as poorly informed, and just as stubbornly resisting the notion that all CFS symptoms can be explained by Central Nervous System dysfunction, which can be explained by the results of the Mirza autopsy: a spinal cord inflammation. 

Dr. Paul Cheney’s Testimony before the US FDA Scientific Advisory Committee on 18th February 1993: "The most difficult thing to treat is the severe pain. The most alarming is the neurologic elements of this disease. Half have abnormal MRI scans. 80% have abnormal SPECT scans. Most have abnormal neurological examinations. The most severe cases have neurological findings which are striking".

It's been 14 years since he testified to that in a government hearing.  To this day, the government's informational website still does not have the word "neurological" anywhere on the page For Healthcare Professionals!  Is it any wonder that the only doctors who know to check for neurological abnormalities are those who immerse themselves in CFS literature?

The CDC website also perpetuates the myth that there are no tests for CFS.  Jodi Bassett's well-researched website, to the contrary, lists a number of tests that will be abnormal in CFS/ME.  Dr. Cheney's testimony in 1993 listed a number of tests that would be abnormal.

How many more CFS patients have to die, and have autopsy reports showing major biological abnormalities, before it becomes common knowledge that CFS cannot be fixed by psychiatry?  The medical establishment has been indicted by their own, not just by disgruntled patients, and still refuses to admit that they have made mistakes and those mistakes have led to greater disability and even death for CFS patients.  And when those patients got sicker, the blame was put on the patients for being "non-compliant", because they "refused" to get better when given wrong treatments (including those which are known to be useless or worse).

Even when Sophia Mirza died of a documentable inflammation having nothing to do with psychology, there are still doctors who blamed her for refusing to admit she had a mental illness; they still believe that if she had just voluntarily gone into that same mental hospital, she would have been cured, despite the evidence that she got significantly worse after being hospitalized.  But why should someone who is physically ill lie and "admit" to a mental illness they don't have?  Or subject themselves to treatment for mental illness which can do nothing to cure a virus.  Anti-depressants have repeatedly been proven useless against CFS/ME (they may work on psychologically-based fatigue syndromes, but those are another illness entirely, filed in a completely different section of the World Health Organization's diagnostic manual, the ICD). 

WHO rightly lists CFS/ME under neurological illnesses.  It is time that the medical community took a few minutes to read the book so they understand what they are dealing with and can give appropriate treatment.  CFS has more in common with MS than with depression; until a treatment can be found specifically for CFS, let's try treating it with the same drugs used for MS.  It can't cause any more harm than wholly inappopriate psychiatric treatment, and might even do some good.

Wednesday, April 11, 2007

Sorry seems to be the hardest word

The wave of "I'm sorry" laws is part of a movement in the medical industry to encourage doctors to promptly and fully inform patients of errors and, when warranted, to apologize. Some hospitals say apologies help defuse patient anger and stave off lawsuits.

<snip>

The surgeon said that he realizes an apology could come back to haunt him but that he considers saying "I'm sorry" essential to preserving the bond of trust between doctor and patient.  Otherwise, "patients think I'm hiding something, I must have done something wrong," he said.

* * * *

The final blow to the bond of trust between me and my doctors came from their adamant assertions that they had done nothing wrong. 

Even when I pointed out obvious errors in the medical records, all they did was lie through their teeth, such ridiculous statements as "self-diagnosed means the same as 'diagnosed by a virologist'" and claiming that I told them I stopped working 12 years before I actually did. 

When I pointed out that under HIPAA, I was entitled to have those errors corrected, I was told I had no such right.

I finally contacted the Department of Health and Human Services and had a government lawyer provide me the exact text of the law and a written statement that this law did require them to correct anything I could prove was wrong. 

Then they lied and said that they never told me I couldn't have errors corrected, when I had the original statement in black and white.  Then, instead of just doing it based on what I'd already told them was wrong, they required me to fill out a form and send it to another office, which would then discuss it with the doctors, and decide (probably with the input of a lawyer) which false statements I had proved adequately to warrant being changed.   

Even where the handwritten medical history contradicted the typed history, I was going to have to find proof that what the assistant wrote down was actually what I said, they couldn't just correct the falsified typed information by referring to what was written down by the assistant.  How do you get a sworn statement from your previous doctor who died?

All they really had to do was make a call to say that they inadvertently wrote 2003 instead of 2000 as the first date of disability, and the errors in the medical records would have been immaterial, because I wouldn't have to rely on the medical records to prove I was entitled to the additional three years of back benefits.  But they couldn't even admit to a clerical error.

At any point, they could have settled the lawsuit by admitting they made a mistake and doing what they could to fix the problems that they caused by saying that I wasn't actually disabled at the point that I was essentially bedridden.  They refused to do anything other than blaming me.

Their mistakes will dog me the rest of my life, but they didn't think it was worth swallowing their pride long enough to offer an apology.  They made it quite clear that the source of all the problems was me.  I speak clearly and distinctly, a trained public orator, so it's difficult to see how I could be the problem in their claims that they did not understand me.  In several places, it is obvious that they understood me just fine ... and later dictated something quite different from the handwritten notes.  How can that be my fault? 

How is it my fault that they didn't read the reports from other doctors, when I made sure that those reports were sent to them?  Was I supposed to go to the doctor's house, tuck him in, and read him the other doctors' opinions as a bedtime story?

The only thing I did wrong was to believe them when they said "I want to help you", and to trust them to follow the law in keeping accurate medical records.  Obviously, some people are not trustworthy and honest.  And, unfortunately, some of those people are doctors, whose lies can ruin other people's lives.

Blogs in the News

Cynthia's blog was mentioned in an article at http://www.cfids.org/cfidslink/2007/blogosphere.pdf

That article mentions a number of other CFS blogs -- if you don't believe what you read here, perhaps you'll believe it when you see the same information in other blogs.  I don't lie; the lies are told by the doctors who claim that CFS is imaginary and not disabling.

More on brain damage in CFS

A new group member had an appointment with a new neurologist and commented on < the doc's relatively casual statement that all - yes ALL - CFS patient reveal the same type of frontal lobe damage on PET imaging, varying only by degree of severity.  According to this neurodoc, those with less damage nonetheless have considerable abnormalities.  He added that CFS patients' brains "light up" exactly as ADD patients' brains do in the frontal lobes.  Nobody questions the validity of ADD; in fact, it seems doctors are almost falling over themselves to diagnose ADD.  >

This is the question that has been nagging CFS patients for decades.  The virtually identical symptoms in MS are readily accepted as real, but when presented as part of CFS, are derided as "all in your head".  In the early days, some doctors were misdiagnosing it as "atypical MS", which makes me wonder why some of my doctors didn't make the MS connection when assessing my symptoms, instead of jumping directly to depression/anxiety.  Those who know me well tell me that I come across as confident and self-assured, which is a good sign that I'm not depressed and anxious; apparently, the mere fact that I'm female was enough to prompt a psychological diagnosis from misogynistic doctors regardless of what physical problem my symptoms resemble.

Just why is it that the inability to concentrate in ADD is believable and but when it's part of CFS it is not?  Is it because ADD occurs more frequently in male children and CFS occurs most often in adult females?  Which puts it back to the same misogynism described by Dr. Carol Jessop in the 1980s, when her severely ill female patients were returned to her with erroneous psych diagnoses, but a less affected male patient was awarded a diagnosis of "obviously a virus, but one we don't have a test for." 

Haven't women made any progress in the past 20 years?  Do we still get no respect from male doctors just because we're women?  All the strides we've made in business and politics, even women astronauts, mean nothing if we're still being treated as lesser beings when we go to the doctor.

One of our male CFS activists has as his particular pet peeve that NIH files CFS under "Women's Health" despite the fact that 30% of patients are male.  Obviously, it's filed there so they can pretend it's just something related to hormones and menopause, the same attitude many female patients get from their male doctors.  It belongs under neurology. 

This information that it looks the same as ADD on brain scans proves that it belongs under neurology and is not something related to gender or false assumptions that women will make any excuse to avoid having to work.

How much objective medical information will it take before the medical community accepts that CFS is real, it is organic, it is neurological?

 

Tuesday, April 10, 2007

Testing, Testing, 1, 2, 3, 4....

One problem with medical care today noted by CFS/fibro experts is that the lab test has become all-important. Whereas diagnostics in the old days required listening carefully to the patient and sifting through the possibilities, nowadays it’s become strictly a matter of test results. If the tests are normal, the doctor tells the patient that she is imagining things because the tests are always right.

However, Devin Starlanyl, M.D., doctor and patient, observes "Just because standard testing shows normal values does not always mean everything is fine. It may simply mean that the proper tests have not been run."

How unfortunate that patients are now routinely disbelieved by their doctors!

When the AIDS epidemic began, patients who complained of not feeling well were told that there was nothing wrong, because there wasn’t yet a test for that virus. "All tests were normal". We know now that there is something very wrong with AIDS patients, and there is now a test to prove it.

The same happens to CFS patients. There are many tests that would show their immune system is malfunctioning, and scans that show lesions, but the blood tests that were done on me – both in 1987 and in 2000 – were reported as "all normal" and it was considered unnecessary to do more tests. The heck with what the patient said, the tests said there was nothing wrong. All the doctor had to do was trust his eyes (friends told me I didn’t look well) and ears (I told him exactly what was wrong with me, including my prior diagnosis). But he chose to trust the tests instead and call me a liar when those tests didn’t show abnormalities that they don’t test for.

But, when a new test was done, one that is not commonly part of the basic first-round blood tests, the results were described to me as "off the charts". With the addition of one new test, I went from having no proof that anything was wrong to something seriously wrong. No one had stopped to think that the basic first-found blood tests check for specific things: they proved that I did not have diabetes, that I did not have an autoimmune disease like lupus, that I did not have thyroid problems, that I did not have Lyme disease. But they couldn’t tell the doctor whether I was telling the truth about insomnia, or severe pain, or fainting.

Similarly, for years, CFS patients were told there was nothing wrong with their hearts. Until someone had the bright idea of changing the test. Dr. Paul Cheney comments "Unlike all other measures of cardiac output, this is the only one that can be done in the upright position. Which, as you'll find out in a second, was a critical step. Absolutely critical. All other cardiac output measurements are done in the supine position – laying down." And when a cardiac tests was finally done in the upright position, it documented what patients had been saying all along: "what they found is absolutely astonishing, truly astonishing. When [disabled CFIDS patients] stand up, [they're] on the edge of organ failure due to low cardiac output." "More importantly, all disabled CFIDS patients, all of whom have post_exertional fatigue, have low "Q" and are in heart failure."

The patients hadn’t been lying – the doctors simply weren’t considering that the test had to take into account what the patients were complaining about: difficulty being upright. You feel better when you’re lying down for a reason: when you’re lying down, your cardiac output is within normal limits.

I saw a cardiologist who clearly hadn’t read the CFS material I had sent to him before the test. My physiological response to the test puzzled him. When I got home and mentioned what happened to someone who knows about CFS, I was told that weird reaction is exactly what should happen to a CFS patient. As Dr. Cheney explains "There are two kinds of heart failure. There's the kind that any cardiologist can diagnose in about a minute. That you do NOT have. Which is why cardiologists missed this. What you have is Compensated Idiopathic Cardiomyopathy. ... The disease [CFS] itself is protecting you from a deeper problem that has been totally missed." Succinctly, the CFS serves as a governor so that your heart cannot go into overdrive, which might kill you.

It’s often said that God works in mysterious ways, and that little glitch is one of them. It makes perfect sense ... once someone opened their mind to the possibility that patient reports might be more accurate than conventional testing.

Someone finally had the idea of performing a functional MRI on fibro patients. Instead of them lying stock-still in a tube, this tests what happens when they are moving. The results proved unequivocally that their brains react differently than the brains of healthy people. Again, precisely what the patients had been saying, but which too many doctors had been writing off as exaggeration and excuses because blood tests were normal. But this is something that cannot be measured by the standard blood tests. It’s not caused by diabetes or thyroid or anemia. It is possible to test for Substance P levels, but it’s not a test that’s commonly ordered.

Dr. David Bell, another of the early experts on CFS, observes "Modern medicine prides itself on scientific accuracy. The days of clinical medicine, listening to and trusting patients ... have been replaced with sophisticated machines and tests that do not lie. The art of medicine gave birth to an unruly child, medical technology. ... [The modern doctor] listens to the patient only long enough to decide which tests will give the scientific answer. ... Physicians must discipline the unruly child, medical technology, and not abandon the art of medicine."

And it is important for doctors to recognize that a series of negative tests may mean only that they need to order different tests. Those patients who have doctors willing to continue searching until they find something wrong are at a great advantage over those whose doctors, whether through ignorance or parsimoniousness, stop after the first round of tests. (Some HMOs offer bonuses for keeping costs down, which may lead doctors to refuse to do expensive testing, like sleep studies or MRIs, which might document an actual problem, but cost the doctor his cost-cutting bonus in the process.) Others may have the erroneous impression that the standard tests would discover absolutely anything that is wrong. (The guy who graduated last in his medical school class is, nonetheless, someone’s doctor!)

And, unfortunately, the truth about CFS and fibro is not well-known in the medical community. Too many doctors consider them a "wastebasket diagnosis" when you don’t know what else to call it, with no idea how they’re correctly diagnosed, and too few doctors know what to do about them. Although these doctors don’t want to admit their incompetence, Dr. Bell writes "the uniqueness of the pattern of symptoms in CFS, and their persistence over long periods of time, make this an illness that can be diagnosed clinically, not just resorted to when everything else has been excluded." And he’s right – support groups made up primarily of laypeople can diagnose CFS (or rule it out) with near 100% accuracy. If doctors can’t do the same, it’s only because they’re not interested in learning the symptom pattern. "Historically, the pattern of symptoms has made the diagnosis of an illness", Dr. Bell writes, and so it is with CFS. Someone who knows the pattern will recognize it immediately. Someone who doesn’t know the pattern will continue to disparage it as random symptoms.

At present, the capital of California doesn’t have a single CFS specialist, and none that we know of within at least 2 hours drive. Sometime next year, there will be a CFS Center for Excellence opening in Reno (2 hours away), and we will probably all commute up there for our treatment, but for now, we’re making do with doctors who don’t know much, and, in the words of one of my former doctors, are "not interested in learning". Some of whom don’t even know that anti-depressants are useless and exercise is detrimental. Some of whom have never even heard of Paul Cheney, who was one of the first doctors to identify and research CFS.

Dr. Bell is familiar with that attitude, as well. "By making the diagnosis of depression ... the primary care physician could write a diagnosis into the chart, one that theoretically answered the questions and relieved the doctor from further responsibilities." But the problem arises that repeated research has proven that anti-depressants are useless against CFS, so at some point, the doctor has to face the fact that treating the patient for depression isn’t helping. Unfortunately, the predominant response to that is the accusation that this is a "non-compliant" patient who "doesn’t want to go back to work", rather than an admission that the doctor doesn’t know what has been shown to work on CFS and the doctor is just faking it to avoid admitting ignorance. In fact, the Cecil Textbook of Medicine makes it clear that if "the condition does not respond to psychiatric treatment", then it is an organic disorder.

Nearly a decade before my current relapse, Dr. Bell wrote "That fatigue can be caused by disease in the brain has been known for years. It is an extremely complex area of neurology." Yet, here we are almost two decades after he wrote that, and there are still innumerable doctors who are completely unaware of the CFS/neurology connection. They don’t order the neurological tests that would show a problem, and, of course, blood tests don’t show problems with the central nervous system, so they continue under the misconception that "all tests are normal" without ever considering what tests were not ordered, which might not have been normal if they had been done.

Let's go back to practicing medicine the old way, where the doctor listened to the patient, believed the patient, and diagnosed based on symptoms, and not on whether the wrong tests "are normal".  There is a place for tests in CFS diagnosis: as a starting point to rule out other fatiguing conditions.  But the real diagnosis should be made on the symptoms described in the literature: that combination of exercise intolerance, memory loss, swollen glands, fever, cognitive impairment, pain, and neurological abnormalities.  It's not a wastebasket at all – it’s a well-defined condition that's easy to diagnose if you know what you're looking for.

Monday, April 9, 2007

Do you rely on herbals/vitamins/minerals? Chiro? Acupuncture?

There is a crisis in health freedom.  On April 30, 2007 the FDA will close the public comment period on a "Guidance" which will classify every alternative practice as medicine so that only licensed physicians can carry out the procedure AND vitamins, minerals, herbs, etc., will suddenly become "untested drugs" which will be forbidden.

Bad?  Real Bad!  But public outcry can stop this assault on your health and your freedom.

Spread the word!  Tell everyone in your Circle of Influence, professionals, alternative practitioners, nutrient and herb companies, everyone!  Let them know how important their participation is to make sure the FDA backs off from this repressive course.

Please share this link with them and urge them to take action: http://tinyurl.com/2u7ghc

Yours in health and freedom,

Rima E. Laibow, MD
Medical Director
Natural Solutions Foundation
www.HealthFreedomUSA.org
 
 
* * *
The ONLY treatments that seem to work for CFS/fibro are "alternative medicine".  Do you really think that your doctor, who may be hassled by Big Pharma to prescribe their stuff, is going to write you a prescription for something that he gets no benefit from prescribing?
 
I feel much better since dropping the prescription stuff that didn't work, and going on Dr. Murphree's CFS/Fibro formula (www.DrRodger.com).  There is no way that I want to go back to taking prescriptions that make me sicker with no corresponding improvement in how I feel. 
 
Your doctor was probably told in medical school that chiropractic, acupuncture, etc. were voodoo.  Even though the official position is starting to change, your doctor may be one who still believes that complementary/alternative medicine is just a waste of money and deny you the treatments that have helped you in the past.
 
Be sure to put in a paragraph about your personal experience with CAM: how it has helped you, whether you made equal strides with pharmaceuticals or if your improvement began when you gave up the chemicals and went all natural.