Saturday, April 21, 2007

Why your doctor doesn't know what the research says

Why Doesn't My Doctor Know This? by Kent Holtorf, MD

(excerpts and references -- go to ImmuneSupport to read the whole thing)

A question that is often raised by patients is “Why doesn’t my doctor know all of this?” The reason is that the overwhelming majority (all but a few percent) of physicians ... do not read medical journals. When asked, most doctors will claim that they routinely read medical journals, but this has been shown not to be the case.

There has been significant concern by health care organizations and experts that physicians are failing to learn of new information presented in medical journals and lack the ability to translate that information into treatments for their patients. The concern is essentially that doctors erroneously rely on what they have previously been taught and don’t change treatment philosophies as new information becomes available.

William Shankle, MD, Professor, University of California, Irvine ... “Doctors do not seek to implement new treatments that are supported in the literature or change treatments that are not."2

The Annals of Internal Medicine found that ... the longer a physician is in practice, the more inappropriate and substandard the care.6

In response to this unacceptable lag, an amendment to the Business and Professions Code, relating to healing arts, was passed. This amendment, CA Assembly Bill 592; An act to amend Section 2234.1 of the Business and Professions Code, relating to healing arts, states, “Since the National Institute of Medicine has reported that it can take up to 17 years for a new best practice to reach the average physician and surgeon, it is prudent to give attention to new developments not only in general medical care but in the actual treatment of specific diseases, particularly those that are not yet broadly recognized [such as the concept of tissue hypothyroidism, Chronic Fatigue Syndrome, and Fibromyalgia]...”9

a study published in the March 2006 edition of The New England Journal of Medicine, entitled "Who is at Greater Risk for Receiving Poor-Quality Health Care?" This study found that the majority of individuals received substandard, poor-quality care. There was no significant difference between different income levels, or between individuals who have insurance and those who do not.

1. Lenfant C, New England Journal of Medicine. "Clinical Research to Clinical Practice - Lost in Translation" 2003;349:868-874.
2. William Shankle, MD. Key Note Presentation. International Conference on the Integrative Medical approach to the Prevention of Alzheimer’s Disease. Oct 11, 2003.
3. Phillip Pizzo, MD. Stanford Medical Magazine. Stanford University School of Medicine.
4. Begley S. "Too Many Patients Never Reap the Benefits of Great Research." Wall Street Journal. September 26, 2003.
5. "Science Knows Best." Daily Policy Digest. National Center for Policy Analysis. Sept 26, 2003.
6. Niteesh. C, et al. "Systematic Review: The relationship between clinical experience and quality of health care." Annals of Internal Medicine. February 15, 2005.
7. Balas, E.A. "Information Systems Can Prevent Errors and Improve Quality. Journal of the American Medical Informatics Association. 2001; 8(4):398-9.
8. National Institute of Medicine Report, 2003b
9. California Assembly Bill Number: AB 592 Amended Bill Text; Amended in Assemby April 4, 2005, Introduced by Assembly Member Yee February 17 2005. An act to amend Section 2234.1 of the Business and Professions Code, relating to healing arts.
10. The Principals of Medical Ethics adopted by the American Medical Association in 1980.
11. Asch SM, et al. "Who is at Greater Risk for Receiving Poor-Quality Health Care?" New England Journal of Medicine. 2006;354:1147-1155.


Once again, what CFS patients have been saying for years is borne out by research performed by doctors and health care organizations, and published in reputable medical journals.  This is not a case of CFS patients having a vendetta against doctors, but that the patients have been telling the truth about how few doctors know that anti-depressants have repeatedly been proven useless against CFS.

A good friend has a rheumatologist who told her that he would always listen to her input because "I have to read up on 400 diseases, you only have to read up on one."  Unfortunately, open-minded doctors like that aren't easy to find.  That's why so many CFS/fibro informational websites have a list of good doctors who either keep up on the literature or are open to reading the literature that the patient has kept up on. 

Equally unfortunately, when I tried to get an appointment with my friend's rheumatologist, even my friend's name was not enough to get me in the door when I said I had CFS.  (You can tell where along the continuum a medical group first started dealing with CFS by whether you're sent to Infectious Disease, Rheumatology, or Neurology.  Although it starts with a virus, the symptoms are mostly neurological.)

The research is clear: you cannot rely on your doctor to know what's best.  You will probably have to educate him.  If you accept the treatment he was taught 20 years ago, when many people were erroneously classifying CFS as depression or some other psychological problem, you may end up permanently disabled like so many other CFS patients who deteriorated because they followed doctor's orders to the letter.  The problem was not patient noncompliance, but doctor ignorance.


Thursday, April 19, 2007

What are your rights as a patient?

The Patient's Bill of Rights was first adopted by the American Hospital Association in 1973 and revised in October 1992. Patient rights were developed with the expectation that hospitals and health care institutions would support these rights in the interest of delivering effective patient care. The American Hospital Association encourages institutions to translate and/or simplify the bill of rights to meet the needs of their specific patient populations and to make patient rights and responsibilities understandable to patients and their families. According to the American Hospital Association, a patient's rights can be exercised on this or her behalf by a designated surrogate or proxy decision_maker if the patient lacks decision_making capacity, is legally incompetent, or is a minor.

**************Bill of Rights***********************

*The patient has the right to considerate and respectful care.

*The patient has the right and is encouraged to obtain from physicians and other direct caregivers relevant, current, and understandable information about his or her diagnosis, treatment, and prognosis.

*Except in emergencies when the patient lacks the ability to make decisions and the need for treatment is urgent, the patient is entitled to a chance to discuss and request information related to the specific procedures and/or treatments available, the risks involved, the possible length of recovery, and the medically reasonable alternatives to existing treatments along with their accompanying risks and benefits.

*The patient has the right to know the identity of physicians, nurses, and others involved in his or her care, as well as when those involved are students, residents, or other trainees. The patient also has the right to know the immediate and long_term financial significance of treatment choices insofar as they are known.

*The patient has the right to make decisions about the plan of care before and during the course of treatment and to refuse a recommended treatment or plan of care if it is permitted by law and hospital policy. The patient also has the right to be informed of the medical consequences of this action. In case of such refusal, the patient is still entitled to appropriate care and services that the hospital provides or to be transferred to another hospital. The hospital should notify patients of any policy at the other hospital that might affect patient choice.

*The patient has the right to have an advance directive (such as a living will, health care proxy, or durable power of attorney for health care) concerning treatment or designating a surrogate decision_maker and to expect that the hospital will honor that directive as permitted by law and hospital policy.

*Health care institutions must advise the patient of his or her rights under state law and hospital policy to make informed medical choices, must ask if the patient has an advance directive, and must include that information in patient records. The patient has the right to know about any hospital policy that may keep it from carrying out a legally valid advance directive.

*The patient has the right to privacy. Case discussion, consultation, examination, and treatment should be conducted to protect each patient's privacy.

*The patient has the right to expect that all communications and records pertaining to his/her care will be treated confidentially by the hospital, except in cases such as suspected abuse and public health hazards when reporting is permitted or required by law. The patient has the right to expect that the hospital will emphasize confidentiality of this information when it releases it to any other parties entitled to review information in these records.

*The patient has the right to review his or her medical records and to have the information explained or interpreted as necessary, except when restricted by law.

*The patient has the right to expect that, within its capacity and policies, a hospital will make reasonable response to the request of a patient for appropriate and medically indicated care and services.  The hospital must provide evaluation, service, and/or referral as indicated by the urgency of the case. When medically appropriate and legally permissible, or when a patient has so requested, a patient may be transferred to another facility. The institution to which the patient is to be transferred must first have accepted the patient for transfer. The patient also must have the benefit of complete information and explanation concerning the need for, risks, benefits, and alternatives to such a transfer.

The patient has the right to ask and be told of the existence of any business relationship among the hospital, educational institutions, other health care providers, and/or payers that may influence the patient's treatment and care.

*The patient has the right to consent to or decline to participate in proposed research studies or human experimentation or to have those studies fully explained before they consent. A patient who declines to participate in research or experimentation is still entitled to the most effective care that the hospital can otherwise provide.

*The patient has the right to expect reasonable continuity of care and to be informed by physicians and other caregivers of available and realistic patient care options when hospital care is no longer appropriate.

*The patient has the right to be informed of hospital policies and practices that relate to patient care treatment, and responsibilities. The patient has the right to be informed of available resources for resolving disputes, grievances, and conflicts, such as ethics committees, patient representatives, or other mechanisms available in the institution. The patient has the right to be informed of the hospital's charges for services and available payment methods.


In other words, if you are aware that anti-depressants are proven useless in treating CFS, you have the legal right to ask for a different treatment.  You can legally refuse the anti-depressants and request that the doctor review more current treatment information. 

If you provide the doctor with copies of research or names of researchers supporting your claim that there are better treatments, they are not supposed to bully you into taking what they want you to take, nor refuse to consider proven treatments because it's not the treatment they want to give you.  They are supposed to take the time to educate themselves to the newer and better treatments that you've told them about.  To save having to come back for another appointment (and pay for another appointment), you can take printouts of the research you're relying on so they can look it over. has a lot of research information about treatments that help and treatments that don't; just search the archives.

If they still refuse to give you the treatments proven to work by researchers, you can contact the American Hospital Association ( for information on how to proceed.

There is absolutely no excuse for any CFS patient to be forced to accept any treatment that has been proven useless (anti-depressants) or dangerous (exercise).  It's your health and the final decision is, by law, yours.  Any doctor who refuses to consider a reasonable treatment option you suggest as an alternative, any doctor who verbally abuses you for not getting better with his preferred treatment, is in violation of your rights as those rights were determined by the AHA.

Wednesday, April 18, 2007

Activism, and an astonishing 77%

Apparently some people read the admission here that stress can bring on a relapse and decided to try it, by sending me a series of increasingly obnoxious e-mails. Rather than befoul my blog with that language, let me just say that if I were to censor the profanity, there would be very little left to print here beyond her name and mine, "you" and "are".

This is the sort of nonsense that activists face on a regular basis.

If you speak out about medical incompetence that causes your CFS to get worse because you’re not getting the right treatment, the medical professionals scream to high heaven (I’m really surprised none of them have arranged for a mob hit on Dr. Groopman for saying exactly what I’ve been saying about doctors who diagnose by stereotype!). If you speak out that CFS is not the same thing as depression, you get used to the psychiatric lobby calling you names. And if you set out to educate the general public that you are not just lazy, the psychopaths come out of the woodwork.

The accusations and the names I’ve been called as an activist would turn your blood cold.  Fortunately, I’m used to it. I was an activist long before I was a CFS patient. There’s nothing that I haven’t been called, starting with N****r Lover when I was 5.

The people who attack me for telling the truth are actually rather amusing, in their small-minded way. They can’t accept any viewpoint but their own. And they obviously think that using profanity will upset me. I have news for them. I used to run a landscape crew. There’s not a dirty word I haven’t heard in both English and Spanish (and a few other languages besides).

It never ceases to amaze me that people who have never read my medical records, were not in the room for any of my doctor’s appointments, aren’t even in the same state to know the reputation of those doctors, claim to know that I am lying when I say mistakes were made because the doctors didn‘t know as much about CFS as they led me to believe. According to research by Anderson and Ferrans, an astonishing 77% of CFS patients had negative experiences with health care providers, so it’s not at all surprising that I had negative experiences with 7 of 16 doctors over the past two decades, ranging from mild annoyance because I was left to deteriorate without medication for months to absolute outrage over serious malpractice including refusal to accept a prior expert diagnosis confirmed by another expert. My experiences are not at all unusual in the CFS community, and it would behoove the medical community to take note of that abhorrent statistic, as well as the counsel offered in Dr. Groopman’s book for reducing it.

People who have no idea what my house looks like, because they’ve never been within 3000 miles of it, claim to know for a fact that there’s rotting garbage on the floor because they think I‘m a lazy slob who can‘t be bothered to use a trash can. In fact, there is a trash receptacle near every spot that I sit. But it’s more fun to imagine the worst about someone you dislike and to spread the word to others.

People who have never seen me walk, who don’t know if I need my hands to hold onto a mobility aid or railing to keep my balance, have no problem with telling me to carry my own boxes down to the basement and calling me a liar when I say that would compromise my safety. They are unaware of the neurological and balance problems documented in CFS, so, again, they assume the issue is laziness rather than physical disability, not because it's true, but because of their own ignorance.

In every case, when I have offered to show them the actual proof that they are wrong, they have refused to give me an address or fax number where I can send copies or photos. Just like my doctors who refused to order the tests that would have been abnormal, these people have also made it real clear that they don’t want to see any proof that they are wrong. Their minds are made up, don’t confuse them with facts.

They do, however, want to see where other people have spread scurrilous lies about me. Luckily for them, some people are happy to lie and exaggerate, writing absurd and illogical fiction trolling for attention for themselves, knowing that there are people who will eagerly lap up every false story without questioning the factual lapses behind it.

And luckily for me, there are other activists cheering me on every time I write an article or give an interview, telling me that I’m doing the right thing, and people who know me in real life, who see the fiction writers for what they are: pitiable people who thought they had found a weak-willed sucker to manipulate and were surprised when I stood up for my rights and held them to account for their actions (or inactions) and told them to take responsibility or take a hike.

There are other people who have suffered at the hands of these same incompetent doctors. There are other people who have been taken advantage of by the same manipulators, frauds and professional cleaners who don’t clean. By speaking out, I reduce the chances that someone else will be taken advantage of.

If nothing else, the offenders may think twice about doing it again because they’ve been outed.

Monday, April 16, 2007

It's Impossible! (Or maybe not...)

CFS is a rather unusual disease. Everything about it is counter-intuitive to what doctors consider "common knowledge".

Doctors generally recommend that patients build up their muscle strength and stamina by exercising, but CFS patients get worse when they follow that advice. In 1999 Dr. Paul Cheney, one of the pioneers of CFS research, went on record as stating: "The most important thing about exercise is not to have [patients with CFS] do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA." (Lecture given in Orlando, Florida at the International Congress of Bioenergetic Medicine, 5th-7th February 1999)  If Cheney said it, that's good enough for me to believe that it's true and proven valid, because he is one of three people (Daniel Peterson and David Bell are the others) with the longest history of treating CFS.

Lane, Barrett, Woodrow, Moss, Fletcher, & Archard (1998) found that 37% of patients with CFS had abnormal lactate responses to exercise. Other researchers have found other objective markers that prove the patients are telling the truth when they say they feel worse after exercise – their bodies react very differently than a healthy body, and in ways that prove the problem is not merely deconditioning.

CFS/ME tends to affect the most-used muscles and make them weaker (Ramsay, 1983). When a patient tries to exercise their way back to health on doctor’s orders, the muscles rebel from being overused, sometimes to the point of paralytic muscle weakness. I noticed this myself; whenever I had to use my hands to hold myself upright because my balance was off, by the end of the day I would not even be able to lift a fork from the dinner plate to my mouth because I simply didn’t have the muscle strength in my wrists to do it. After a significant amount of typing, I might not even have enough strength left in my fingers to push the buttons on the TV remote.  Doctors who are thinking only that exercise will build up muscle strength are not aware that, for example, specialists believe that post-polio is a result of overusing the remaining healthy muscles.  Even steel, after sustaining enough strain, will give out, and muscles are no different: push them beyond their limits and they fail.

The solution to these problems is called Pacing. As soon as you notice your muscles fatiguing, switch to another activity that rests these muscles (including the ones in your brain) and uses different ones, or simply lie down and do nothing. Brain fatigue has been noted from reading, working on the computer, even talking on the telephone (which is why many of your friends with CFS don’t want you to call them – at one point, I could manage only a couple minutes on the phone before being so completely exhausted that I needed a nap). Unlike talking face-to-face, where your eyes can assist you in interpreting, on the phone you have to concentrate 100% with your ears, and if, like me, you have trouble with your hearing going in and out, you have to concentrate even harder to follow the conversation. It was at that point that I was trying to find a new doctor, but the severe limitation on how long I could be on the phone before my brain shut down made that process very difficult. Some days, I could only manage to be coherent for one call the whole day. And since I could not multi-task (taking notes while talking on the phone), calls took much longer than they should, because I had to continually ask the person to wait while I wrote something down.

71% of patients in a 1999 study reported pacing was beneficial, and none reported adverse effects. In a 200l AfME study, 89% found it helpful.

In a recent paper on pacing, Ellen Goudsmit, who is both a CFS patient and a Chartered Health Psychologist, noted "One of the most common problems reported to us is the reluctance to stop an activity before it has been completed. This is perhaps the main reason why at least in the initial phase of the illness, many continue to operate well beyond their limits."

And it’s my belief that this is the cause of most relapses: Type A patients who continue to work despite increasing symptoms until their bodies simply shut down to force them to stop. Fortunately(?!), at the stage that I was still refusing to accept my new limits, my body found a surefire way to make me stop and lie down: it issued the signals that I recognize as meaning that I had a few seconds to get my feet above my head before I faint. Quite often, this would mean that I would take a box out of the closet, find what I needed, and have to leave the box in the middle of the floor before I landed on the floor myself. It bothered me to leave the box there instead of putting it away, but adding to the clutter is less injurious than hitting your head.

Action for ME (AfME) suggests that patients plan to do only 50% of what they think they can. One of the many differentiations between CFS and depression that have been noted is that depressives underestimate their abilities and CFS patients overestimate. Personally, I find that my head still thinks that I’m able to function at pre-CFS levels, leading me to say I’m going to do things that I am completely incapable of, unless I stop and consciously think about what I’m committing to. Rationally, there is no way that I am going to walk around the neighborhood for a couple hours distributing flyers for a good cause, not when the day before I walked to the store on the next corner and had to sit down on their floor, wondering how I was going to get back home. So, unless I’ve worked through the plan analytically step-by-step, the odds are that I’m going to "think" I can do at least twice what I’m really able to do. If I plan to do only half what I think I can, I’m actually pushing my limits rather than following the AfME guideline to conserve some strength so you don’t make yourself worse.  I find it better to dispense with the "plan" and just work from a priority list that implies that things on this list will be done in the next two weeks, and that each day I will do as much as I can before I get the signal to stop.

Black, O’Connor and McCully in 2005 tried an experiment in which CFS patients were asked to increase their activity level. The initial data showed that they could do more (although they reported more fatigue, muscle pain and mood disturbance). But in re-evaluating the data, the researchers determined that the patients could do more for only 4-10 days, and after that, the patients could actually do less.  This, again, simply validates as truth what patients have been saying for years: we can push ourselves for a few days (for example, to attend a CFS conference and tell the researchers face-to-face whatwe’ve been experiencing), but after that, our conserved resources are drained and we relapse.

Time and again, research has proved what the patients are reporting is true, even that which is considered by the professionals to be "impossible".

Remember, before the Wright Brothers, it was commonly accepted that it was impossible for man to fly. What scientists believe to be "impossible" is not always as implausible as it sounds.