The Lou Adler Show will address CFS on May 1 and May 2.

The show is based on WOR-710 out of NYC.

To see if it's available in your area, check the list at
http://www.cfids.org/advocacy/2007/gac.pdf
If it's not available in your area, you may be able to get it on a webcast.

Quote of the Week

If we all worked on the assumption that what is accepted as true is really true, there would be little hope of advance.            -- Orville Wright  

 

Thankfully, there have been doctors and researchers who were told "CFS is just depression" and didn't believe it.  They've since proven that there are a number of tests where CFS tests differently from depression.  For just one striking example, cortisol levels are off in opposite directions, proving unequivocally that CFS is not depression, not even close.

There are now 4000+ studies worldwide showing biological abnormalities in CFS.  And yet there are still those who will not accept the truth of these advances and cling to their old beliefs that even the men and the 5 year olds are just suffering from menopausal depression.

 

Why your doctor doesn't know what the research says

http://www.immunesupport.com/library/showarticle.cfm?id=7891

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.

References
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.

 

Tags: CFS, research, malpractice, doctor, treatment, poor quality, New England Journal of Medicine

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.  www.Co-Cure.org 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 (www.aha.org) 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.

Tags: patient, rights, law, legal, treatment, hospital, doctor, alternative, CFS, anti-depressant, help, harm, useless

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.

Tags: attack, abuse, activism, activist, lies, malpractice, negative experience, doctors, profanity, CFS, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, CFS/ME, ME/CFS, CFIDS

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) http://www.meactionuk.org.uk/CRITICAL_CONSIDERATIONS.htm  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 CFIDS.org 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." http://listserv.nodak.edu/cgi_bin/wa.exe?A2=ind0704a&L=co_cure&T=0&P=3911

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. http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0511A&L=CO-CURE&P=R283&I=-3  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.

Tags: CFS, polio, muscle, weakness, paralysis, impossible, research, pacing, Goudsmit, Cheney, exercise

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.

Tags: blame, doctor, CFS, fibromyalgia, guilt, disability, habits, health

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.

Tags: frozen shoulder, CFS, fibromyalgia, shoulder,

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.

Tags: CFS, CFS/ME, ME/CFS, Mirza, malpractice, neurological, psychiatric, mistreatment, death, immune dysfunction

Sorry seems to be the hardest word

'I'm sorry,' hard for doctors to say http://www.cnn.com/2007/LAW/04/11/sorry.doctors.ap/index.html

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.

Tags: CFS, doctors, medical records, apology, sorry

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.

Tags: CFS, fibromyalgia, blog

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?

 

Tags: CFS, ADD, brain, neurology, damage, scans, neurologist

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.

Tags: CFS, fibromyalgia, diagnosis, tests, misdiagnosis, symptoms

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.

Tags: CFS, fibromyalgia, complementary medicine, alternative medicine, vitamins, herbs, minerals, chiropractic, acupuncture

Disrespectful Medical Treatment, Part 2

Angela Kennedy, mother of a CFS patient, and founder of The One Click Group, responded at length to the article on disrespectful medical treatment.  I'll share a few paragraphs of her commentary:

I do feel that even these strategies may not
prevent the terrible problems people with this group of illnesses
experience with their doctors, because of social structures and
distal power relations around medical arrangements in Western
societies, beyond the patient's control.

More importantly, I think articles like this do have the potential
unfortunate effect of putting the onus on the patient to change
behaviour- so that when the patient-doctor encounter is STILL
problematic, the implication is that the patient has not done things
right. 

I say this from experience (last week actually! and it's not the
first time). And I'm not even an ME/CFS/FMS sufferer. <major snip>

I'm not saying don't bother employing certain strategies- I'm just
saying one may still come a cropper, and it is unlikely to be within
your control. If this happens, while learning from the experience,
one should NEVER blame oneself, as this is counter-productive, and
likely to be an inaccurate judgement of the situation. 

I frequently see on these boards similar experiences, where
doctors or others are using behaviour designed to intimidate or
manipulate patients into not asserting their needs.

Research is being done on the power relations within medical
settings, how these are abused by doctors and others etc. I am not
trying to be anti-doctor, but a lot of abuse of patients is
institutionalised, and doctors should be accountable for their
behaviour, which in actuality rarely occurs. This is a difficult
area, because of the status and privilege acquired by one group (the
medics) and the lack of same of another (patients- especially with
difficult to diagnose chronic illness).

Like Angela, I've heard plenty of stories of dismissive doctors from CFS patients and have some of my own. 

Although I've been told by some doctors that I give a darn good medical history, I was told by another doctor "nothing you said made sense".  The information I was giving him didn't fit with what he wanted to hear, therefore, he had to "put the onus on the patient" -- the problem wasn't that he'd made a wrong diagnosis, the problem was with me not saying the right things to fit with the diagnosis he wanted to make.  As Dr. Groopman's book describes, he ignored any information that contradicted his initial diagnosis.  And put the blame on me when the wrong pills that he prescribed for the wrong diagnosis didn't cure me, which was, actually, proof that the diagnosis was wrong.

Angela makes a good point, that blaming yourself doesn't fix the problem, which is actually between the doctor's ears. 

Since doctors don't seem inclined to make their colleagues accountable, patients must.  If a doctor treats you disrespectfully, leave his practice and make sure he knows why you are leaving.  Then make sure other people know why, too.  Track down websites like RateMD.com and go public with your complaints.  

The state medical board took the position that since my doctors hadn't killed me, hadn't amputated the wrong limb, "no harm, no foul".  (Never mind that I've been told I'll never work full-time again as a result of the malpractice.)  As a result, the medical board's records reflect "no complaints", so there is nothing there to warn anyone away from a doctor that a friend and I both had the same attitude problem with.  But websites like RateMD aren't run by doctors, so they're not going to cover up the truth that some doctors should be avoided.

If you're willing to take the chance, sue the doctors.  If nothing else, it'll get your name into the public record as someone who had problems with that doctor as a warning to other patients.  The next time my former doctor is sued, I expect to be contacted to testify that falsifying medical records is his "pattern and practice", which will make the penalties that much harsher because he's done it before, been sued over it before, and didn't take corrective action.

Tags: CFS, doctors, disrespect, malpractice

Disrespectful Medical Treatment

Disrespectful Medical Treatment and Tips For Working With Your Physician
by Jenny Fransen, RN
http://www.immunesupport.com/library/showarticle.cfm/ID/7878

(excerpts)

Unfortunately, during this pre-diagnosis period, many people have met with countless healthcare professionals who were insensitive, disrespectful, uneducated, and who blamed the patient for their pain. They were told they were crazy, “It’s all in your head,” and other damaging comments.

Guilt and shame are also painful emotions felt by many people with Fibromyalgia as a response to disrespect and blame by medical professionals. They are the feelings “I must be bad because I have this,” or “I must somehow be at fault for having this.”

If you have had this experience, it is important for you to know you are not to blame for your symptoms. You are not crazy. You have a real medical condition, and you deserve respectful medical treatment. The damaging comments that were directed toward you were completely inappropriate. You have a right to be angry about this mistreatment.

How can you express your anger toward those who have hurt you? You could write them a letter and express how their treatment hurt you, how you now have received a correct diagnosis, and what they could have done which would have been more helpful.

Lastly, you must not remain under disrespectful medical care. It will only continue to harm your sense of well-being, fuel depression and anger, and continue the cycle of distrust toward medical professionals. You deserve respectful care, and you must have it.

* * * *

I made sure that my doctors were made aware that their incompetence had permanently affected my health.  Proper treatment -- addressing the pain and/or resulting insomnia -- almost certainly would have gotten me back to work within a few months.  That treatment was repeatedly refused by doctors who believed "it's all in your head" and prescribed useless  anti-depressants instead, and it is now the specialist's opinion that I will never work full-time again because I didn't get proper treatment early on.

And I have made sure that other patients are aware that believing that if you persist, eventually your doctor will listen to you and give you the right prescription, can be detrimental to your health.  The doctor who refuses to believe you now will stubbornly refuse to believe you no matter how many times you repeat yourself.  You will never "prove" to him that he is wrong.

Much better to do what I did not -- give him ONE second chance and then look for a new doctor who takes a different approach.  By the time I finally realized that that doctor was never going to give me the pills I asked for, that he didn't know the first thing about CFS (not even how to diagnose it), it was too late, and I have to live with the consequences.

He was unable to admit to himself, or to me, "you would be better off with another doctor".  His erroneous belief that I was just imagining things because I didn't want to work cost me all chance at State Disability benefits, and impacted my SSDI application as well.  No matter how many other doctors, who know CFS/fibro is real and incurable, say that I cannot work, the judge keeps going back to the first doctor's false statement to support denying my benefits. 

Don't let that happen to you! 

Co-Cure.org has a list of "good doctors" for CFS/fibro.  RateMD.com lets you warn others off bad doctors (or praise a good one).

I may not be able to get myself back to good health, but I can make sure that the same doctors don't do the same thing to other patients.  Maybe the doctors will read the studies I cited showing that exercise and anti-depressants don't work for CFS; I wouldn't bet on it.  But I can steer other patients away from them.

Tags: CFS, fibromyalgia, doctors, treatment, malpractice

More from Lakeland, Florida "The Ledger"

http://www.theledger.com/apps/pbcs.dll/article?AID=/20070401/NEWS/704010412&SearchID=73276846005614

'Gray Area' Diseases Prove Difficult to Treat, Understand

Fibromyalgia, chronic fatigue syndrome debilitate victims amid controversy,
dispute in the medical community over unclear causes.

By Gary White
The Ledger, Lakeland, Florida

'YOU DON'T LOOK SICK'

Back when she was a hard-charging sales manager for a large corporation,
Martha Grierson once encountered an employee diagnosed with fibromyalgia, a
disorder about which Grierson knew nothing. The man said his condition
wouldn't allow him to maintain his challenging workload and requested
lighter duties.

Grierson joined her fellow managers in aggressively questioning the man,
concurring with the general assessment that he was a shirker unwilling to
work as hard as everyone else.

In the subsequent two decades, as fibromyalgia has largely taken over
Grierson's life, the Winter Haven resident has often thought of that man.

"I'm so ashamed, looking back, that I was one of the people who sat in on
that management meeting and said terrible things," said Grierson, 52. "I'm
so sorry for it; I didn't know any better. Little did I know I would be
getting the same thing and be given the same response."

Grierson's original skepticism makes it possible for her to understand, if
not easier to tolerate, the questioning attitudes many people hold toward
fibromyalgia, perhaps the most prominent in a category of illnesses with
unclear causes, imprecise diagnoses and no cure or clearly effective
treatment options. The maladies - also including chronic fatigue syndrome
and lupus - generate controversy and dispute in the medical community.

The ailments, their vagueness defying the preferred precision of the
medical realm, attract pejorative labels: "gray-area illness" or
"wastebasket diagnosis."

"'Gray-area medicine' can be interpreted as a euphemism," said Dr. Edward
Lubin, a pain-management specialist at Winter Haven's Gessler Clinic, "and
it leads one to think maybe what we're dealing with is … malingering, maybe
we're dealing with something other than a medical condition. But to be
fair, the gray area exists in the minds of physicians and the diagnostic
process, not in the symptoms and suffering of patients. That's not gray;
they're suffering."

Those with the ailments insist their pain is just as real as it would be if
they had cancer, diabetes or any other established and scientifically
verifiable disease with clear causes and treatment regimens.

"Imagine the aching of a really bad case of the flu, then times it about 10
times," said Polk City's Lynn Anderson, 52, diagnosed a decade ago with
fibromyalgia. "Every inch of you hurts. I feel like I'm about 152. There
are days when I feel so old. It makes you feel like you've aged 10 years or
more."

Grierson talked about her case: "For me, one of the symptoms is feeling my
skin is on fire. At times I can't even stand the feeling of clothes on my
skin."

Lakeland's Laura Bodner, another fibromyalgia patient, described her
quality of life on some days as a negative number on a scale of one to 10.
Bodner, who has absorbed dubious reactions from doctors, said three women
in a stretch of five houses on her street have the disorder.

"For something that doesn't exist," she said, "there's an awful lot of
people with it."

Wayne Furse of Winter Haven, who has been diagnosed with fibromyalgia, says
he takes 25 prescription pills a day, including four types of painkillers,
which provide little relief. (SCOTT WHEELER/The Ledger (2006))


Diagnosing a mystery

The condition of fibromyalgia appears in the Bible, according to Lynne
Matallana, president of the National Fibromyalgia Association, but the term
itself - literally meaning pain in muscle and tissues - didn't arise until
the 1970s to denote a collection of symptoms including chronic joint or
muscle pain, extreme tenderness, profound fatigue and inhibited sleep. The
NFA estimates 10 million Americans have the often-debilitating disorder,
with women diagnosed at least four times as often as men.

Fibromyalgia presents no markers that show up in a laboratory test.
Diagnosis is based on a patient's reported symptoms and a physical exam to
detect persistent pain or tenderness in at least 11 of 18 trigger points
throughout the body. Symptoms can vary and often fluctuate wildly.

Chronic fatigue syndrome (CFS) shares many of the symptoms of fibromyalgia,
and the conditions are considered overlapping, though lethargy rather than
pain dominates in the former ailment. The Centers for Disease Control
estimates more than 1 million Americans have CFS.

The causes of both remain mysterious, and treatment is directed toward the
symptoms - controlling pain and improving function. The ailments are not
considered life-threatening, but the symptoms leave some patients unable to
work and sometimes bed-ridden for long periods.

"We sometimes refer to them as invisible illnesses because you don't look
sick and we don't yet understand the causes," Matallana said.

Dr. Patrick Wood, an assistant professor of medicine at Louisiana State
University, said researchers continue to amass evidence supporting
fibromyalgia as a legitimate medical condition. Functional magnetic
resonance imaging has shown different reactions to cold and pressure in the
brains of people with and without fibromyalgia.

Dr. Roland Staud, a professor of medicine at the University of Florida
specializing in fibromyalgia, said recent research suggests the patients
have a hypersensitivity to pain. It's not that they invent their pain, he
said, but rather their tolerance for pain is much lower than in most people.

But people with chronic pain disorders are hardly freakish exceptions,
Staud said.

"Fibromyalgia is only the tip of the iceberg," he said. "Chronic
musculoskeletal pain is enormously prevalent in the population and … the
majority of those don't qualify for the term fibromyalgia but still have
chronic pain. So what we're dealing with is a huge problem that's been
compartmentalized and underestimated for, really, decades now, and we're
just using fibromyalgia as the most extreme representation of these types
of pains."

pain, lethargy and fog

The pain itself can be extreme, according to patients. Carol Edwards, a
registered nurse specializing in fibromyalgia at the Salazar Family Clinic,
was diagnosed with the ailment in 1989 after suffering for four years. She
has experienced dramatic improvement through an experimental treatment but
said the malady nearly derailed her life.

Edwards, 53, said her feet sometimes burned as if she had walked on
scalding coals and her body became so sensitive she couldn't even stand the
feel of asheet on her bare skin. Under such circumstances, she said,
sexual relations become impossible.

"It's not unusual at all for patients to tell me they haven't had sex in
three to five years," Edwards said. "The inability to have sex is a big
issue that's not discussed a lot. Even pain pills don't take away the pain
enough that they're able to enjoy it."

Bodner said her husband "is afraid to touch me because he's afraid of
hurting me." In addition to pervasive aches, she said she endures "fibro
fevers" as well as seizures related to her fibromyalgia.

While many more women than men are diagnosed with fibromyalgia, males are
not immune to the condition. Wayne Furse of Winter Haven has the disorder,
along with a host of others, including diverticulitis, colitis, diabetic
neuropathy, tendinitis, bursitis and heart problems.

Furse, 51, operated a lawn-mower shop before his health problems began
about a decade ago. He had to give up the business and eventually went
bankrupt. He said he takes 25 prescription pills a day, including four
types of painkillers, which provide little relief.

He said a rheumatologist diagnosed him with fibromyalgia based on his
symptoms of widespread body pain and promptly told him the condition could
not be treated.

"After that one doctor gave me that (diagnosis), several other doctors,
they all just laugh when I say that," Furse said. "They say, 'That doesn't
mean anything. It means he (the doctor) doesn't know what's wrong with you.'"

Millie Haddad of Davenport, diagnosed 16 years ago with chronic fatigue
syndrome, said she now sleeps 18 to 20 hours a day. Lakeland resident
Teresa Kucera, whose chronic fatigue overlaps with fibromyalgia, said she
tries to accomplish one task a day, such as cleaning the bathroom. Kucera
is bothered by "fibro fog," a common symptom of fibromyalgia that forces
her to write notes to remind herself of the most basic matters.

"It's like your motor quits going," said Kucera, who is 54 but said she
feels more like 90. "You just find yourself like, 'What happened?' It's
just a slow decline."


Holding on

Chronic ailments with no clear prospect for reversal can have a devastating
effect on quality of life, and depression among patients is common.

"I have no meaning to my life," Kucera said. "It's just read and think
about things I'd like to do. I would imagine there's a lot of suicides from
these things; I think a lot of people give up and find no worth in their
lives. Sometimes I think it would be just easier to die. It's not something
you can just think yourself out of. I try to hold onto God; that's what
keeps me from completely going over the edge."

Grierson managed 23 employees in her previous corporate job, dressed in
business attire and had the use of a company car before fibromyalgia
prematurely ended her career. She used to draw her identity largely from
her career, and when that ended, she was left wondering who she was.

Bodner, who was forced to give up her work as a security trainer, said
suicide has crossed her mind.

"I've gotten to the point I've thought about it quite a few times," Bodner
said, "and then my daughter will bring my grandsons over or my husband will
come in and put his arms around me, and then it's like, 'Yeah, it's worth
it (to live).'"

Edwards, the nurse, said she has coaxed several suicidal patients into
handshake agreements to give her treatment method six months to show results.

The National Fibromyalgia Association doesn't keep statistics on suicides,
but Matallana, the group's president, said she knows of people who took
their lives because of the ailment. But she said gradual medical acceptance
has lessened the sense of desperation.

"Once the diagnostic criteria were accepted and once people began to
understand this illness … you don't hear of people feeling as hopeless as
you used to," Matallana said. "I haven't heard of a suicide case for many
years. I think we are living in a time when there is much more hope. That's
why we work so hard … to let people know they are not alone, to hang in
there, things will get better."

Patients say Polk County lacks an active support group for people with
chronic pain disorders, but some find comfort in online communities. The
confounding nature of the ailments, and the persistent skepticism
surrounding them, creates a need for validation in many patients.

Grierson has discovered an informal support group among fellow patients at
her doctor's office.

"I began to meet these wonderful women you would see week after week in the
waiting room," she said. "You definitelydepend on seeing each other, and
you share these intimate details of your life. You find out they're feeling
the same way, and it definitely helps an awful lot. That helps (guard)
against that feeling that it's all in your head."

Grierson said she often thinks of her first experience with fibromyalgia in
the early 1980s, when ignorance about the ailment made her unsympathetic
toward an employee in her company who had recently been diagnosed.

"I look back and just shudder about the way I spoke to that poor young
man," she said. "I was a horrible human being, and today I just can't
imagine treating somebody that way. It (fibromyalgia) has made me a much
better human being. If I had to lose everything and go through a lot of
suffering to gain that compassion, as trite as it sounds, I think it had to
be worth it."

Still, she added, "I wish there had been an easier way to get there."

http://www.theledger.com/apps/pbcs.dll/article?AID=/20070401/NEWS/704010426/1004/NEWS08

Doctors Differ in Approaches Used In Treating Malady

By Gary White
The Ledger

ABOUT THIS SERIES
Fibromyalgia, chronic fatigue syndrome are hard to treat and difficult to
understand.


Monday: Mystery ailments derail lives and expose sufferers to hostility
from loved ones and doctors.
The treatment for fibromyalgia varies according to the doctor administering
it. Patients often wind up seeing a rheumatologist or a pain-management
specialist, and the most common medical approach involves reducing the
symptoms - widespread muscle or joint pain, weakness, burning sensations,
extreme skin sensitivity and fevers - and increasing the patient's capacity
for activity.

Dr. Edward Lubin, a pain-management specialist at Winter Haven's Gessler
Clinic, said the most important element of his treatment comes at the
beginning. Many patients arrive hoping for a sudden and permanent fix, and
Lubin stresses the need to regard fibromyalgia as a chronic disorder, like
diabetes or hypertension, lifelong ailments with symptoms that can be
managed through consistent treatment.

"The first thing they need to understand is the adage, 'Chronic pain is
chronic,'" Lubin said. "There are patients who will never be able to wrap
their arms around the chronicity or durability of their pain and how much
we understand it to be chronic. That makes for at times a very difficult
practice."

Lubin, who trained at Yale and Harvard, uses various methods to combat the
symptoms of fibromyalgia and similar maladies, including nerve blocks,
nerve excision, steroid injections, radiofrequency ablation and various
kinds of injections into trigger points, as well as pain medications
ranging from anti-inflammatories to morphine.

He also sometimes prescribes antidepressants or refers patients for
psychiatric counseling. The Food and Drug Administration has not approved
any medications specifically for fibromyalgia, meaning any drugs are
prescribed "off-label."

Dr. Roland Staud, a professor at the University of Florida's school of
medicine, said several drugs are nearing submission to the FDA for the
treatment of fibromyalgia. Staud is also involved in studies of cognitive
behavioral therapy, which he considers an essential element in treating
chronic pain. There is continuing scientific debate over the pain centers
stimulated by fibromyalgia, and Staud focuses his research on the spinal
cord as the source of pain transmission.

"When it is difficult on the physical level to reduce pain generation, then
we need to also affect the central mechanism, which is, for example,
negative mood, anxiety, fear, anger - all these things come into play in
chronic syndromes like fibromyalgia," Staud said. "This acknowledges the
mind-body connection that everybody has. It doesn't just marginalize this
as purely a psychological syndrome."

Dr. Patrick Wood, an assistant professor of medicine at Louisiana State
University, has also devoted his career to studying chronic pain disorders.
In Wood's view, fibromyalgia results from the failure of patients' brains
to make and use dopamine, a chemical involved in transmitting signals
between cells.

Wood said experiments with drugs that mimic the effects of dopamine have
shown promise, and he stressed the difference between this approach -
targeting the source of pain - and the prevalent strategy of managing the
symptoms.

"Our treatment of the symptoms has been sort of a shot in the dark because
we don't really understand what it is we are treating," Wood wrote in the
January issue of The Journal of Pain.

One Lakeland doctor takes an entirely different approach. Dr. David
Reifsnyder, an infectious disease specialist, suggests many patients
diagnosed with fibromyalgia and similar maladies actually have an
undiagnosed viral or bacterial illness, such as chronic mononucleosis,
chronic mycoplasma, Lyme disease or even cat scratch disease. He said in
other cases he finds a simple cause of the symptoms - for example, a bad
reaction to a medication.

"In my own personal experience, (in) about 95 percent of the people I see
with either chronic fatigue syndrome or fibromyalgia, the cause is found,
and the vast majority of those respond to treatment and recover
completely," Reifsnyder said.

He said many of his patients are referred by other local doctors, who are
happy to pass along patients with seemingly intractable ailments.
Reifsnyder has long-term patients who now live as far away as California
but still come to Florida to see him.

Reifsnyder, who operates a solo practice, devotes a full hour to a
patient's first visit to take a thorough medical history, looking for clues
to any undiagnosed chronic illnesses.

"Often patients come out of his office crying with relief," said
Reifsnyder's wife, Nellda, who works in his office. "One patient said,
'This is the 44th doctor I've seen.' They're very angry. They say no one
has listened to them."

This is actually a very common complaint among CFS/fibro patients -- as Dr. Groopman's book says, doctors leap to conclusions in the first few seconds of an appointment and thereafter don't feel they need to listen to the patient.  Even when I was struggling to continue working, I was being tagged as a malingerer by doctors who didn't listen to the fact that I was continuing to work as much as I could, but couldn't manage a full-time schedule.

FIBROMYALGIA

What is it?: A chronic pain illness marked by widespread pain, stiffness
and tenderness in muscles; general fatigue; sleep problems; burning
sensations; extreme skin sensitivity; and memory problems. Symptoms often
fluctuate widely in intensity.

How is it diagnosed?: No laboratory tests confirm fibromyalgia. Diagnosis
is based on patient histories, self-reported symptoms and a physical
examination. The main diagnostic guidelines are widespread pain in all four
body quadrants for at least three months and tenderness or pain in at least
11 of 18 specific points.

Who has it?: The National Fibromyalgia Association estimates 10 million
Americans have fibromyalgia, at least 80 percent of them female.

Prognosis: Not considered life-threatening.

Treatment: Most doctors focus on symptoms, reducing pain and increasing
activity through medication and physical therapy. Other options include
sleep management, nerve blocks, psychotherapy, antidepressants and
acupuncture. An experimental treatment used at a Mulberry clinic involves
the non-prescription drug guaifenesin and the avoidance of plant-based
products.


CHRONIC FATIGUE SYNDROME

What is it?: An illness typified by profound fatigue not lessened by rest,
as well as muscle pain and memory or concentration problems.

How is it diagnosed?: The syndrome has no specific diagnostic test.
Diagnosis emerges from a patient history of severe fatigue lasting at least
six months and the presence of at least four of the following symptoms:
substantial impairment in short-term memory or concentration; sore throat;
tender lymph nodes; muscle pain; multi-joint pain without swelling or
redness; headaches of a new type, pattern or severity; unrefreshing sleep;
and post-exertional malaise lasting more than 24 hours.

Who has it?: The Centers for Disease Control estimates more than 1 million
Americans meet the definition for CFS.

Prognosis: Not considered life-threatening.

Treatment: The standard approach aims to reduce symptoms and improve
physical functions. Doctors might recommend lifestyle changes, including
avoidance of overexertion, reduced stress, dietary restrictions, gentle
stretching and nutritional supplementation, as well as medication to treat
sleep, pain and other specific symptoms.


LUPUS

What is it?: A chronic autoimmune disorder that can affect almost any part
of the body, most often the joints, skin, kidneys, heart, lungs, blood or
brain. Symptoms often mimic fibromyalgia and other illnesses.

How is it diagnosed?: No single laboratory test determines the disorder.
Diagnosis is based on a medical history finding at least four of 11
symptoms, including rashes, inflammation of the heart or lung lining,
seizures, arthritis and blood abnormalities.

Who has it?:The CDC "conservatively" estimates lupus affects 239,000
Americans, about 90 percent of them women.

Prognosis: The disorder can cause fatal complications. The CDC estimates
more than 1,000 Americans die from lupus each year.

Treatment: Varies depending on the organs affected. Anti-inflammatories,
sometimes including steroids, anti-malarial medications and drugs that
suppress the immune system are often prescribed.

GULF WAR ILLNESS


What is it?: A general label for an array of health problems experienced by
veterans of the Persian Gulf War of 1990-91. Symptoms include chronic
obstructive pulmonary disease and other lung problems, cancer, dizziness,
fatigue, reduced muscle function and skin problems.


How is it diagnosed?: The syndrome itself is not diagnosed. The Department
of Veterans Affairs medical facilities make individual determinations based
on symptoms and service.


Who has it?: About 30 percent of the 700,000 Americans who served have
registered in an illness database established by the American Legion.


Prognosis: Reports have suggested higher than normal rates of premature
death. As of 2005, figures from the Veterans Administration showed at least
11,620 of the roughly 700,000 deployed troops had died since returning.
More than 250,000 had filed for medical benefits.

Tags: CFS, lupus, fibromyalgia, Gulf War Syndrome, treatment