Saturday, April 19, 2008

More on RSM Conference

From Christine Gow

RSM conference on `CFS'

To: Dr John Scadding, Dean,
Royal Society of Medicine

Dear Sir,

As someone who has suffered from the dreadful
symptoms of M.E. for the last 18 years. I am deeply
concerned, perplexed and saddened to hear of the
forthcoming RSM conference on `CFS', as you like to
call M.E, being held on April 28th and to note the
heavy bias of speakers who for the most part are
made up of psychiatrists and the very real lack of
biomedical Researchers to give this Conference a
balanced and equitable overview of M.E.

I wonder why this is, given that it was recognised
and classified as a neurological disease by the WHO?

The reality for children and Adults with M.E. in the
UK continues to be dire and I list some of the
reasons why this is so:

Sparcity of funding being given for the excellent
biomedical research being carried out by scientists
such as Dr Kerr, Dr Gow, Professor Malcolm Hooper,
Prof.Garth L. Nicolson PhD, Dr Paul CheneyM.D.,
Ph.D, Dr Vance Spence, to name but a few and which
will ultimately lead to realistic help and treatments
which can allow us to regain our health.

The lack of compassion and belief shown by certain
members of the medical profession and the NHS

Due to the debilitation of M.E. the majority of people
cannot speak up in protest at the horrendous
experiences they are subjected to.

The Lottery of being denied DLA, or having it and
then losing it, because we do not fit the criteria that
has now been cleverly worded by health insurers on
behalf of the government, which excludes us,
regardless of our healthcare needs.

Being at the mercy of medical professionals, who do
not seem to be aware of the extensive biomedical
research which has already proven the organic nature
of ME.

A lack of knowledge about how to diagnose
children/adults with M.E., which leads to
misdiagnosis, inappropriate treatments and adds to
an exacerbation of our existing health problems.

Denial of physical tests that can show the physical
abnormalities that are now known about and found in
Children/Adults with M.E.

Large amounts of money being given to CBT and
GET, Which I personally find deeply insulting and
offensive to my intelligence and would be more likely
to cause me a relapse, when through my own efforts
I have managed over time to return to employment
and wish to continue with this status quo, even if it
is at the expense of any social life.
The blurring of the name Myalgic Encephalomyelitis
to the ragtag one size fits all CFS, which trivialises
and in no way describes this multisystem
neuro-immune-endocrine-vascular disease and which
for lack of good diagnosis and treatments people are
dying from.

Perhaps on my behalf, since I am excluded from
attending this conference, you could ask Professor
Wessely and his cohorts which of their therapies will
talk my mitochondria abnormalities back to health

The sad fact is that it is costing society and
government coffers far more money having large
sections of society, who have M.E, on long term
benefits, not by choice, at an age when they would
normally be healthy, productive, employed, and
contributing to society instead of expending the
money needed on biomedical research and
treatment, which would allow us to regain our
health. Very short-sighted indeed.

It is shameful and untenable that not only do we
have to contend with an illness that has been
likened to certain end stage cancers, this we live
with every day of our life, but then are denied any
treatments other than CBT or GET, unless we can
find ways to fund them ourselves, which is difficult
to do when you are forced to live on disability

To finish with. I would like to ask why there appears
to be some secrecy surrounding the organisation of
this Conference. Can you tell me why it was set up
and by whom? Who decides who is invited? Have
members of the press been invited to attend? Can
you also assure me that no delegates invited to
speak are affiliated or have interests on behalf of
any health Insurance companies? Will there be a
transcript available that I can access?

Lastly, I would like to finish with a well known quote
by Abraham Lincoln:

"You can fool some of the people all of the time and
you can fool all of the people some of the time but
you can't fool all of the people all of the time.

Christine Gow

Shocking Prevalence of Drug Errors; 22% preventable

<P _extended="true"><B _extended="true">CHICAGO, Illinois (AP) -- Medicine mix-ups, accidental overdoses and bad drug reactions harm roughly one out of 15 hospitalized children, according to the first scientific test of a new detection method.

<DIV class=cnnStoryPhotoBox _extended="true"> <DIV class=cnnImgChngr id=cnnImgChngr _extended="true">That number is far higher than earlier estimates and bolsters concerns already heightened by well publicized cases such as the accidental drug overdose of actor Dennis Quaid's newborn twins last November.
<P _extended="true">"These data and the Dennis Quaid episode are telling us that ... these kinds of errors and experiencing harm as a result of your health care is much more common than people believe. It's very concerning," said Dr. Charles Homer of the National Initiative for Children's Healthcare Quality. His group helped develop the detection tool used in the study.

<P _extended="true">Researchers found a rate of 11 drug-related harmful events for every 100 hospitalized children. That compares with an earlier estimate of two per 100 hospitalized children, based on traditional detection methods. The rate reflects the fact that some children experienced more than one drug treatment mistake.

<P _extended="true">The new estimate translates to 7.3 percent of hospitalized children, or about 540,000 kids each year, a calculation based on government data.

<P _extended="true">Simply relying on hospital staffers to report such problems had found less than 4 percent of the problems detected in the new study.

<DIV class=cnnStoryElementBox _extended="true">The new monitoring method developed for the study is a list of 15 "triggers" on young patients' charts that suggest possible drug-related harm. It includes use of specific antidotes for drug overdoses, suspicious side effects and certain lab tests.
<P _extended="true">By contrast, traditional methods include nonspecific patient chart reviews and voluntary error reporting.

<P _extended="true">The researchers said their findings highlight the need for "aggressive, evidence-based prevention strategies to decrease the substantial risk for medication-related harm to our pediatric inpatient population."

<P _extended="true">The study was to be released Monday in the April issue of the journal Pediatrics.

<P _extended="true">It involved a review of randomly selected medical charts for 960 children treated at 12 freestanding children's hospitals nationwide in 2002. Triggers mentioned in the charts promoted an in-depth review of the patients' care.

<P _extended="true">Patient safety experts said the problem is most likely even bigger than the study suggests because it involved only a review of selected charts. Also, the study didn't include general community hospitals, where most U.S. children requiring hospitalization are treated.

<P _extended="true">Study author Dr. Paul Sharek said evidence is needed to show whether a big push to prevent medical errors in recent years has put a dent in the problem since 2002, when the data were gathered.

<P _extended="true">Homer, of the children's health-care initiative, said some hospitals have started using trigger methods similar to those in the study. But he added, "we still have a long way to go."

<P _extended="true">Among triggers on the list was use of the drug naloxone, an antidote for an overdose of morphine and related painkillers. Symptoms include breathing difficulty and very low blood pressure.

<P _extended="true">More than half the problems the study found were related to these powerful painkillers, including overdoses and allergic reactions.

<P _extended="true">While 22 percent of the problems were considered preventable, most were relatively mild. None were fatal or caused permanent damage, but some "did have the potential to cause some significant harm," said Sharek, who is medical director of quality at Stanford University's Lucile Packard Children's Hospital.

<P _extended="true">Other triggers included use of vitamin K, an antidote for an overdose of the blood thinner Coumadin; use of a blood test that detects insulin overdoses; and a lab test that identifies blood-clotting problems that can come from an overdose of the blood thinner heparin and other drugs.

<P _extended="true">Quaid's twins got accidental life-threatening heparin overdoses in a Los Angeles hospital shortly after they were born last November. The actor and his wife, Kimberly, have since formed a foundation to prevent medical errors. The babies recovered and Quaid said in an interview with The Associated Press on Saturday that "they appear to be normal kids, very happy and healthy."

<P _extended="true">Quaid praised the new study for raising awareness about an under-recognized problem, and said he'd never envisioned having to play the role of public health advocate before the harrowing experience. He called it "the most frightening time" of his life.

<P _extended="true">Quaid's advice to parents of hospitalized children?

<DIV class=cnnStoryElementBox _extended="true">"Every time a caregiver comes into the room, I would check and ask the nurse what they're giving them and why," Quaid said.
<P _extended="true">Allen Vaida of the Institute for Safe Medication Practices said trigger methods like those used in the study can help. Still, a more comprehensive approach is needed, he said, to detect the most serious, least common errors like those involving the Quaids.

<P _extended="true">Voluntary reporting by hospital staffers is still needed, along with methods to detect errors in time to prevent or lessen any harm to patients, Vaida said.

<P _extended="true">* * *

<P _extended="true">And this doesn't even address the primary drug error faced by CFS patients: being prescribed something that is proven useless against your disease.

<P _extended="true">I've said it before, I'll say it again: research has repeatedly proven that anti-depressants are useless against CFS.  Any doctor who thinks that's the correct treatment is either misdiagnosing or well behind in his journal reading.

<P _extended="true">The only time anti-depressants have any effect is if you have depression in addition to CFS.  Then it'll take care of the depression, but it will not do anything to help the CFS that made you depressed in the first place.

Thursday, April 17, 2008

How to Find a Doctor

How to find a doctor online

Story Highlights

Decide priorities: Is doctor's politeness as important as successful outcomes?

Look for specific criticisms, not just negative general characterizations

If many people make similar observations, criticism, it's worth noting

    By Elizabeth Cohen, CNN Medical Correspondent


    Empowered Patient, a regular feature from CNN Medical News correspondent Elizabeth Cohen, helps put you in the driver's seat when it comes to health care.

    These days, more people are using electronic word of mouth to find good doctors.

    ATLANTA, Georgia (CNN) -- Traditionally, people have found doctors by word of mouth: Find someone you trust, and ask whom they use.

    These days, many people are using electronic word of mouth. Put "doctor ratings" into a search engine and you'll come up with a list of sites where people rate physicians and make comments.

    Last month, Angie's List -- the place you go to find a good plumber -- joined the club by starting a doctor section, and even Zagat's, the folks who rate restaurants, is launching a doctor rating service.

    A lot of doctors aren't crazy about these sites and point out that random, anonymous opinions don't truly measure a physician's quality. But many consumer health experts say these sites are here to stay, and can be helpful if used properly. Here are five tips for smart surfing on physician rating Web sites.

    1. Decide what you care about

    Are you looking for a long-term medical partner like a pediatrician or internist, or are you looking for a specialist for a short-term relationship?

    This is important because many of the comments on these sites have to do with logistics ("a very dictatorial front office" writes one reviewer on about a gastroenterologist) or character ("Dr. X is quite pretentious," writes another reviewer on the same site). Nasty secretaries and a haughty doctor can be bad news if this is someone you'll be seeing often. But if the doctor's going to yank out your tonsils and you're never going to see her again, do you really care that she's full of herself and her office staff is mean?

    "The 'what' is as important as the 'who,' " says David Lansky, president of the Pacific Business Group on Health. "If I want a heart surgeon, I'm going to look for different things than if I'm looking for a primary care doctor."

    2. Look for volume

    It's a matter of statistics: The more reviews you read, the more likely you are to get an accurate assessment. "I would check a lot of different Web sites," says Carol Cronin, executive director of the Informed Patient Institute. "Look across them, not just within one."

    Speaking of volume, a common concern about doctor rating sites is that one angry patient can make multiple nasty comments, using a different name each time (or, conversely, that the physician herself could go on and make multiple glowing comments).

    But Martin Schneider, chairman of the Informed Patient Institute, says these sites have ways of detecting when one person is making several comments under different names. Back in the 1990s, Schneider was president of a now-defunct doctor rating site called "Even back then, we had to the technology to stop that from happening," he says.

    3. Look for specifics, not adjectives

    "A general statement like, 'Dr. Smith is really a jerk,' doesn't tell you much," says Steven Findlay, a health care analyst for Consumers Union. "It doesn't get to the quality of care they deliver."

    Findlay says to look for reviews with specific examples of what the doctor did right or wrong. "Let's say someone's writing about how a doctor handled a kidney stone," he says. "You want to know how quickly that doctor got you to an X-ray. How quickly did they assess the X-ray? Did you get the medicine you needed? Did the doctor monitor the case and follow-up?"

    4. Look for patterns

    Once you've found specifics, look for patterns. Five complaints that say the same thing are statistically more meaningful than five complaints about different issues, says Dr. Robert Wachter, associate chairman of the department of medicine at the University of California, San Francisco.

    "If I look someone up and they have five dings all on a similar theme and I have a choice, I'm going to go elsewhere," says Wachter, who ( blogs on health care quality issues.

    5. Use reviews along with objective information

    While patient reviews might be useful, they have several clear drawbacks, our experts say. First, many doctors have just a few reviews or none at all. Second, even if a doctor has 20, 30, 50 or 100 reviews, that's still only a small fraction of his entire patient population -- and a warped fraction at that.

    "The person most likely to write is the one who's most enthralled with the doctor, or the one who's most pissed," Wachter says. "You're getting a skewed view."

    Wachter and others urge patients to check out objective information about a physician. Some sites with doctor ratings also include objective information, and there are other places to look, too.

    You can find out if your doctor is board certified by going to the American Board of Medical Specialties Web site. For information about legal judgments, go to the Federation of State Medical Board's site and click on your state. The National Committee for Quality Assurance can tell you whether a physician has met certain quality standards for treating some medical problems.

    One more place to check: your health insurance company, which has access to information about your doctor that no one else has. Several insurers have set up systems to measure physician quality.

    But would an insurance company, out of self-interest, recommend the cheapest doctor rather than the best one? Both Findlay and Wachter say while this was a concern in the past, they both say insurance company data on doctors are now trustworthy.

    * * *

    I urge all CFS/fibro patients who've suffered at the hands of a doctor to speak out on these doctor-rating websites.  Save some other patient the hell of dealing with someone you know isn't CFS-friendly; some of them will act like they believe in it while stabbing you in the back with nasty comments in the medical records.

    If he didn't listen, say so.  If he reversed cause-and-effect in your medical records, say so.  If you brought in a printout and he refused to even discuss it, say so.  If you were verbally abused for not improving when the problem was that he wasn't giving you the right medication, say so.  If you got a psych diagnosis because he didn't like your CFS diagnosis, say so.

    It's a few minutes of your time to write a review, but it will be a great benefit to others.  

    Chicken or the Egg

    With regard to the article:

    "Memory for fatigue in chronic fatigue syndrome: relationships to
    fatigue variability, catastrophizing, and negative affect."
    Journal: Behav Med. 2008 Spring;34(1):29-38.
    Authors: Sohl SJ, Friedberg F.

    and the abstract posted on Co-Cure:

    The authors suggested that "Recall discrepancy was significantly
    related to the variability of momentary fatigue. In addition,
    catastrophizing, depression, and momentary fatigue were all
    significantly related to recall discrepancy. Catastrophizing,
    depression, anxiety, and momentary negative affect were all
    significantly associated with momentary fatigue.The findings
    suggest that momentary fatigue in patients with CFS is
    related to modifiable psychological factors."

    I may have misread the authors' hypothesis, but as I understand
    it, they are saying that if the psychological factors could be reduced
    CFS patients would have fewer incidents of momentary fatigue.

    Is it possible that the reverse is the case?  That is, could this again
    be a situation where no conclusion can be drawn about the CAUSE
    of what is an apparent CORRELATION, without first making a
    statement about the nature of the disease itself.

    Perhaps patients who experience [surprising, debilitating] episodes
    of momentary fatigue are MORE LIKELY to feel "depression, anxiety,
    and momentary negative affect," and also be MORE LIKELY to

    When you cannot do something that you are used to doing in every day
    life, it is very disconcerting.  The direction of causation should run
    from the abnormal experience (caused by the illness) to the
    psychological effects of having an abnormal experience.

    As a simple example, an ambulatory patient could find it frightening
    to be left alone in a large place because patients with ME/CFS often
    have episodes of memory loss where they have no idea where they
    are, how they got there, or why they are there at all.  Would this not
    lead quite naturally to feeling anxious?

    A person who was competent in various avenues of life - as a
    parent, or a cook, or a driver, or a teacher, or a physician, or a
    lawyer, or an executive - who suddenly was unable to recall
    simple words or phrases, or what the conversation was about in
    the first place, would be expected to feel all kinds of things -
    fear, anxiety, depression being among them. 

    What is it like to sink into Alzheimer's?  What is it like to have
    Parkinson's?  What is it like to have M.S and suddenly find
    yourself getting worse?

    Sudden weakness - sudden loss of ability - suddenly loss of
    memory in a highly verbal society - is disconcerting to
    a functioning person, whether adult or child.  Momentary fatigue
    and momentary loss of memory translates into momentary
    inability to do something that normally you could do, that other
    people around you do with ease.   It then seems perfectly
    normal to experience:

    Depression - because you have been rendered impotent, and
                             thus sad;
    Anxiety - because you don't know what this means, or how
                    long it will last, and the uncertainty is frightening;
    Momentary negative affect - you have, in a very real sense,
                   suddenly lost yourself - lost who you were;
    Catastrophizing - fear of it this strange experience happening
                   again, or worse - happening more often

    The remedy would depend on the direction of causation, so it
    is important to understand which comes first.

    If the psychiatric experiences are the result of physical
    and mental insufficiencies, however short, that the patient
    cannot control and that render the patient "less" than he
    or she was before, perhaps a better understanding
    of the disease can relieve the psychiatric distress.

    As I read the abstract, I understood the study to either be
    neutral about causation, or to assign causation to the
    physical abnormality - until I read the last line:

    "The findings suggest that momentary fatigue in patients with
    CFS is related to modifiable psychological factors."

    That suggests the authors believe if the psychological
    experiences are themselves altered (by some type of
    psychological therapy), the patients will have fewer or
    less intense experiences of momentary fatigue or
    loss of recall. 

    Surely an understanding of the psychological
    impact of momentary memory lapses or weakness -
    being able to explain to the patient that THIS is what
    we call "depression," and it is normal; THIS is what
    we call "anxiety," and it is normal; THIS is what we call
    "catastrophizing," and it is normal - can help with
    the psychic pain of having a debilitating disease.

    But modifying psychological factors is NOT going to change
    the disease process itself - any more than it will mend
    a broken leg, cure cancer, alter the progression of
    Alzheimer's, or reverse ALS.

    Once again with this disease, we find it necessary to
    warn that when working with correlations, one should
    not make assumptions about causation without being
    certain that the PHYSICAL problem isn't leading to the
    PSYCHOLOGICAL distress - rather than the other way

    Mary Schweitzer, Ph.D.

    * * *

    As one of many patients with unwarranted psychiatric diagnoses made by MDs (and dismissed by psych evaluators), I think this is important to note.

    When I say "I can't", I mean that I have tried and failed, not that I am depressed and afraid to try.

    When I say that I have concerns about walking down a flight of stairs and crossing busy streets alone due to daily fainting spells that come without warning, that's a reasonable concern based in reality, not anxiety. 

    And it's certainly not catastrophizing to think that on a street where people regularly drive at high speeds, someone might run me over if I've passed out in the middle of the street and they don't see me lying there in time to stop, or that I would become injured if I fell down a flight of stairs and landed on concrete.  Those are logical results of losing consciousness with no one around to catch me or direct traffic around me.

    But it's easier for doctors to assign unwarranted psych diagnoses than to think outside the box to find the tests that will show something physically wrong.

    Similarly, there are numerous instances in my medical records where the easy answer required the doctor to reverse the order of cause-and-effect.  If you believe the doctors, I didn't lose my job because I was sick, I got depressed because I lost my job; and I didn't stop exercising because I was sick, I got sick becauseI stopped exercising.  My version makes sense, too ... it just wasn't what they wanted to hear.


    Wednesday, April 16, 2008

    CFS/FM Emergency Fund

    One Click reports:
    4.  Emergency Fund Set Up To Help ME/CFS Labelled Patients.
    Chronically ill people generally have little to celebrate about, but that’s all about to change. Members of Reaching Out, a website dedicated to helping those who suffer from Fibromyalgia and Chronic Fatigue Syndrome/ME, now have an exciting program to rely on during financial emergencies. “We started the fund,” commented Sparrow Ivy, “because we saw so many members having to choose between filling their monthly prescriptions or paying rent.”
    Dr John Ivy, Press Release, Reaching Out

    Tuesday, April 15, 2008


    As you travel the road with CFS, you will learn some important things.

    (1) There are those people who will believe that the doctor is always right, and

    (2) doctors are only human and humans make mistakes.

    Dr. Groopman’s book discusses the many ways that doctors make mistakes, errors in thinking, and one of the most common is "diagnosis by stereotype".

    The first time I saw a doctor for CFS, I was newly-married. Being of the older generation, he instantly saw the problem: he assumed that I’d gotten married with the expectation of quitting my job and now my husband wouldn’t "let me". Didn’t factor into his thinking at all that my new husband was a full-time student, and I’d have to be pretty stupid to turn down the lawyer I was dating the year before to marry someone who’d be a student for another couple years, if my goal in getting married was to stop working.

    My husband had come into the appointment with the intention of backing up what I said about the objective symptoms. But he was raised that the doctor is always right, and therefore, when the doctor said I was imagining things, my husband was easily convinced that he was also imagining things. All those things that he had seen and heard for himself could be disregarded because the doctor said they never happened.

    My boss, on the other hand, was not so easily brainwashed. Making a career in litigation, you see a lot of medical mistakes. His reaction was "how can he say it’s nothing?" given all the objective symptoms my boss and other co-workers were noticing. If the doctor wasn’t doing anything, how did he expect me to get better? If the doctor couldn’t see these problems, he needed to look again, because they were that obvious to the people around me. My boss kept after me to keep looking for answers because there was clearly something very wrong with me physically, no matter what the first doctor said.

    Unfortunately, the first doctor having planted the seed that I simply didn’t want to work was all it took to affect my marriage. Even after getting the CFS diagnosis from a specialist a few months later, it weighed on my husband’s mind that the doctor said I didn’t want to work. Therefore, when I asked for help around the house, that must mean that I was just too lazy to do the chores myself, because the first doctor said I wasn’t really sick, and "doctors are never wrong".

    Because patients usually don’t go back to doctors they’re dissatisfied with, the doctors rarely see the results of their mistakes. Support groups do: the broken marriages, the permanent disability, the endless poverty because the patient didn’t get the right help in the crucial period where it would be most effective to reverse the relapse.

    Anti-depressants have been repeatedly proven useless against CFS in research settings. Yet, that’s all a number of doctors were willing to give me, even those who diagnosed CFS. When I didn’t get better, it wasn’t their fault for giving me the wrong pills, it was my fault for "not wanting to get well". Again, the doctors’ attitude begs the question, why would someone with no other means of support except her own working make the choice to not work? Do I truly look that stupid that I would choose to live in dire poverty when I have the option of living quite well on a paralegal salary?

    Never mind that at the very time that they claim I said "I don’t want to work", I was in fact running my own business. It wasn’t particularly successful, because I wasn’t getting the medical help I needed to be able to work effectively: my business partner counted up 17 days in one month that I e-mailed her that I could not work on my half of a project due to a blinding headache. Other days that month, I could work 5 minutes out of an hour before I had to lie down on the verge of passing out. What my business partner was seeing was not someone who "doesn’t want to work" but rather someone who was trying to work against the odds and could not succeed because the doctors were doing precisely nothing to deal with her symptoms.

    Funny how the people around us see very different things than the doctors do!

    Doctors (and judges) who want to see depression, anxiety, desire for alimony, or something else, will discount the patient’s reports when they don’t match up to what the doctor wants to hear. I was told "nothing you said made sense", not because what I described to the doctor is incompatible with CFS, but because he was looking for depression and the symptoms I described contradicted what he wanted to hear.

    This attitude is amply demonstrated by a study in which the patients’ reports of their pre-illness activity level are corroborated by friends and family, and the study authors devoted much of their page count to explaining why these substantiated reports could not be believed – it’s not that the reports are not true, but that they are not what the doctors expect to hear, andtherefore, must be discounted in order for the doctors to reach the conclusion they want to reach. (A case control study of premorbid and currently reported physical activity levels in chronic fatigue syndrome BMC Psychiatry 2006, 6:53doi:10.1186/1471-244X-6-53

    Monday, April 14, 2008

    Caveat Emptor -- UNUM

    If your disability insurance is through UNUM, beware of their latest tactic: they want to define your "regular occupation" as what you were doing after the doctors said you were disabled.  The doctor signed the form saying that I was disabled in March, and they want to say my disability began that August, therefore, the job that I was doing immediately "before disability began" was what I did between March and August, not my long career prior to becoming disabled.
    My "usual and customary employment" apparently is not what I did full-time for nearly 20 years, the job that was written on the application form.  They want to define it as the part-time job that I'm doing now because I can't do that job any more.
    And, since I am now working more hours per week than I was several years ago, if they are allowed to define it in the way that they want to define it, they won't have to pay benefits, because I'm not disabled from working the number of hours I was working on their preferred "date of disability".
    Atty. Steve Bloch in Pennsylvania is running a class-action lawsuit against UNUM.  Atty. Ray Bourhis in California has already sued UNUM and won (and written a book about it).  Atty. Harris Steinberg in California has recently sued a different disability insurance company and won $14M.  Atty. Jesse Kaplan in California has experience with fighting similar battles.  I have contact information for all of them.  Or you can call your local County Bar Association and ask for a referral to someone who does "long term disability insurance" law.
    Several of these lawyers have told me that if they refuse to accept medical information simply because it's not written on their form, that's "bad faith" -- two magic words that no insurance company wants to be accused of.  In 2000, I had a letter from one doctor making the diagnosis and a letter from another saying that I was unemployable due to my symptoms, and to this day, they've refused to accept that information because it's not on their forms.  The law says that it doesn't have to be on their forms, it's enough that it was provided in writing on the doctor's letterhead.
    You can also report such underhanded tactics to your State Department of Insurance.  Several years ago, most states banded together to force UNUM into a settlement for illegal conduct, so there is probably someone in your state keeping a very close eye on what they are doing who will be very interested to know that they're still misbehaving.
    UPDATE 4/16/08
    One of the lawyers I've contacted is sending me a retainer agreement because this attempt to change the terms of the policy is so blatantly illegal.  Once that arrives, I can't talk openly about my own case, but should still be able to pass along general information about UNUM's illegal acts. 

    Sunday, April 13, 2008

    A Doctor Speaks as a Patient to the Royal Society of Medicine

    From: Dr Speedy

    as a GP with ME I can't say I am very impressed
    with the RSM so i have send the Dean of the RSM
    the following email:

    Dear Dr Stradding,

    On your site it says you are organising a conference
    about CFS at the end of April.

    "The aim of this meeting is to take a broad look at
    chronic fatigue syndrome, examining its nature
    and definition, pathophysiology".

    1.         If I look at the list of speakers, I am
    delighted to see that you have banned everybody
    who knows that ME is a neurological illness as
    defined by the WHO since 1969.

    Now which CBT psychiatrist will mention this? NICE
    didn't in their ME guideline….

    So would it not have been a good idea to have a
    neurologist like Dr Chaudhuri at your conference??

    2.         Who will mention that in 1988 the
    psychiatrists changed the name from ME to CFS, then
    in 1991 they changed the criteria to tiredness only,
    and they created a completely new disease, or I
    should say a wastebasket. They introduced names
    like Yuppie Flu and Chronic Fatigue, and now many
    doctors believe ME is about tiredness and they think
    ME, or CFS as they want to call it, equals TATT. And
    as you know, we as doctors hate TATT (Tired All The

    3.         That ME is something completely different
    was demonstrated for example by Dr Ramsay, the
    infectious disease specialist, in 1979 when he
    published a paper that demonstrated muscle
    abnormalities. Now which psychiatrist will mention
    this and the fact that we can now demonstrate
    mitochondrial dysfunction in ME patients very easily
    with a blood test??
    And the worse the test results
    the worse the ME. And I realise that CBT is so good
    that we can actually talk the mitochondria back to

    4.         Who will mention that ME patients are not
    allowed to be blood donors???

    5.         Who will mention that you can DIE from
    ME??? And no, I am not talking about suicide, I am
    talking about dying from ME like for example Sophia
    Mirza a few years ago. Did she die from false illness
    beliefs, malingering, suggestibility or was it just
    plain laziness??

    6.         Who will mention all the genetic
    abnormalities in ME patients as found by Dr Kerr???
    And yes I know, a few sessions of CBT and the
    genes are back to normal.

    7.         Who will mention the fact that the MRC has
    turned down all research into the cause of ME and
    finding a cure and only sponsors CBT psychiatrists???

    8.         Who will mention that in children ME is now
    the main reason to be off school long term??? Would
    it not have been a good idea to have a paediatrician
    like Dr Speight at your conference who is the most
    experienced ME paediatrician in the UK???

    9.         Who will mention the fact that at least 25%
    of ME patients are bedridden and many are tube

    10.       And even more important, who will mention
    Dr Stein's excellent psychiatric ME guidelines that
    demonstrate that CBT is useless, or the Canadian ME
    guidelines that do the same???

    11.       And who will mention the recent article by
    two Dutch psychiatrists in The World Journal of
    Biological Psychiatry, April 2007, who stated that:
    "The psychiatric and psychosocial hypothesis DENIES
    the existence of CFS as a disease entity." And that
    "In CFS cognitive behavioural therapy (CBT) is most
    commonly used. This therapy, however, appears to
    be INEFFECTIVE in most patients

    Which is not surprising as CBT is just as effective for
    a neurological illness as watching grass grow….
    which is a lot cheaper actually…

    So why has the RSM, a Society of Medicine as I
    always thought, not lived up to its own conclusion of
    1978: "it is hoped that as a result of the meeting,
    sufferers from this miserable illness will, in future,
    be more sympathetically managed."

    The only thing that the CBT psychiatrists have done
    is made the suffering of ME patients worse and now
    you at the RSM are kindly hosting their yearly
    psychiatric conference.

    But please remember that you or your loved ones can
    get ME as well and then you will realise, just as I
    have learned the hard way, that CBT is all about
    denying ME as a severe and debilitating physical
    illness, and that you are now supporting them, and
    denying ME just like they have done with MS, TBC
    and many other physical illnesses in the past.

    But let me add that I hope that you or your loved
    once will not get ME as I now know what a delightful
    business this is.

    Kind regards,

    Dr Speedy, a GP bedridden with ME.




    One of the best letters EVER from Dr Speedy, not
    just in response to this CFS conference on 28 April
    2008 but such a brilliant, succinct overview of all the
    problems that ME sufferers face. Such a shame that
    he has to be one of them to know it from the
    receiving end. We are delighted to put it on our
    website here
    with the others, 10 so far. His is #8 I think.

    Well done Dr Speedy

    Best wishes

    * * *

    I agree with Dr. John -- it's when the MDs among us speak out that other doctors are more inclined to listen.

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