Friday, January 25, 2008

Thoughts on Thought

There's another "change your way of thinking" therapy for CFS being touted in British newspapers, which looks like a pyramid scheme, because every one of the interviewees has gone on to become a practitioner.

But, as one of our many British activists points out, "If psychological therapy cures you, you did not have ME in the first place."  ME -- the original CFS as described in the Incline Village epidemic -- requires an infectious onset.  You can't cure a virus by talking about it, or by changing your thought pattern to "I am well, I am healthy, I feel terrific".

The problem is, too many ill-informed doctors have mixed up Chronic Fatigue SYNDROME with plain old chronic fatigue, which can have psychological origins, or be caused by another medical condition.  Their patients are misdiagnosed, which benefits no one: the patient never gets the right treatment to get back to work, because the doctor has (a) given them a wrong diagnosis and (b) generally believes that there is no effective treatment for CFS.

There are effective treatments for CFS, but they are not the anti-depressants that most such confused doctors push at patients.  Several anti-virals are in the research stages, which have shown good results. 

If you can't get into one of those research trials, the first step is to fix the quality of sleep.  CFS patients generally linger in the lighter stages; you need something that will get you into the deeper stages of sleep where healing takes place.  Be aware that some "sleeping pills" are little more than knock-out drops; they'll render you unconscious for 8 hours, but won't get you down to Stage 4 sleep.  After much experimentation, we've found that I need to mix a standard sleeping pill (to put me to sleep) with a prescription pain pill (to control the pain enough so I can get into Stage 4, and not just lay there with my eyes closed).

This does not mean that CFS=insomnia.  It means that poor sleep makes many medical conditions worse, even though it's not the initial cause.  When you're getting good sleep, your body can start to heal itself.  Your immune system gets stronger and starts to control the virus.

But the only "thought process" that has been shown to work for ME/CFS is the one Ellen Goudsmit has researched: pacing.  You change your thought process from "must do everything that needs doing" to "must take care of health even if everything doesn't get done".

When I first read the cardiopathy research (http://dfwcfids.net/index.php?option=com_content&task=view&id=364&Itemid=702) and started thinking of myself as a heart patient rather than a CFS patient, I realized that no one would fault a cardiac patient for resting; they don't have to prove they're sick-not-lazy.  That made it easier for me to justify a cleaning lady on a regular basis -- if I was diagnosed with a heart condition, people would scold me for trying to do my own cleaning and stressing my heart, so why not leave the heavy cleaning to a healthy person? 

Just the change of giving myself permission to let things go made a big difference in my health.  I'm now resting enough to get healthy, instead of constantly pushing my limits and getting sicker.  Or, as Ellen calls it, "pacing".

But the improvement in my health comes from the increased rest, not from thinking differently about my symptoms.

Thursday, January 24, 2008

CFS on "Balanced Health"

 CFS IS THE TOPIC ON "BALANCED HEALTH"

Get ready for a full hour of TV devoted to chronic fatigue syndrome!


Balanced Health, "a show created to help folks discover simple and balanced solutions to achieve higher levels of health and energy," airs on the Total Living Network.


An episode dedicated to an exploration of CFS will air on Friday, January 25, and repeat on Tuesday, January 29. Check local listings* for times.


Featured guests are Morris Papernik, M.D., of Chicago's Rush Presbyterian St. Luke's Medical Center, and CFS patient Jane Barber, a graphic designer stricken with the illness in 1992, also of Chicago.


Media outreach continues and we'll keep you posted about opportunities to see CFS covered by print and broadcast news outlets as details are confirmed. Check out all the media coverage of CFS as it occurs by visiting the Spark! campaign web site at www.cfids.org/sparkcfs/media-coverage.asp.

* The Total Living Network is available nationally on SkyAngel Satellite TV Channel 9714. It is also available in the following markets:

  • Chicagoland & Northwest Indiana - Comcast analog and digital cable and on PAX DT 43.6
  • Rockford, Illinois - WCFC-TC 51 and Insight Cable Channel 15
  • Las Vegas, NV - KEEN-TV Channel 17 (analog)
  • San Francisco, California - KTLN-TV**
           -- Analog Channel 68
           -- Digital Channel 47.1
           -- Comcast Channel 25
           -- Direct TV Channel 68/209
           -- Dish Network Channel 68

                ** KTLN-TV is Channel 25 except
                             -- Fulton Channel 68
                             -- Hamilton Channel 68
                             -- Los Trancos Woods Channel 29
                             -- Oakmont Channel 68
                             -- San Bruno Channel 68
                             -- Walnut Creek Channel 70/25
                             -- Woodside Channel 29
 

Patients Talk Back, Vol. 7

N.Y. Times Protest. Letter three

From: FMS Community To: N.Y. Times

Continued discussion on Alex Berensons article on Fibromyalgia.

Once again we have protest letters to send to your paper. This is the third installment so far. We would like to see the Times do another article that delves into the issue. We would like the reporter to actually talk to more than one or two prominent sources so they can relate real facts, not those shoveled out by a certain group of so called experts. Thanks to relentless research CMP, Chronic Myofascial Pain has been moved from its status as a syndrome to a real disease. Fibromyalgia is finding many new voices that show that it may be a central nervous system problem and the American government has given it credence in their guidelines for filing for disability. You can not let Mr. Berensons' article be the final word on this subject.. Millions of Americans and people around the world are living with chronic pain, unable to live a normal life. We have long relied on the NY Times to give us unbiased, factual reports on our world and we hope that you will do the right thing where Fibromyalgia is concerned. Single mothers with FM or CMP are trying to hold down jobs but often fail. There children are suffering because reports like this give states the ammunition they need to withhold needed state funds to care for their children. Men who are used to working a long, hard week find themselves without a job, struggling to find a way to care for their families. We respectfully ask that your paper runs another article showing the other side of the coin. Show how millions of americans are living well below poverty level because of the disease. Show how many people go to work daily and then find themselves unable to function at home after work. We ask that the N.Y. Times stands up and does the right thing.

The FMS Community http://fmscommunity.org turnip@fmscommunity.org

****

My name is Rebecca. I am 37, and after five years of the same symptoms, I was recently diagnosed with fibromyalgia. Mr. Berenson, fibromyalgia is a real condition that causes intense pain! It is not simple muscle aches. Further, after my diagnosis the pain was more tolerable rather than less. I was more focused on the pain when I went from doctor to doctor without a diagnosis. I do not ‘obsess’ about the pain. I worked for several years undiagnosed. Presently, I am back in college working toward my CPA. I am also a mother to two teenagers. I keep myself busy and do what I can to ignore the fibromyalgia and get on with my life. I do take Lyrica and for me it works well. Yes, I agree that drug companies are out to make money, but that doesn’t make fibromyalgia a fake disease. Moreover, you should know that there is a possible biological factor linked with Fibromyalgia that presently they are researching at the University of Washington. It is a form of the bacteria called mycoplasma. They have found that several people with fibromyalgia are infected with these bacteria. Mr. Berenson, just because the mainstream medical profession has not yet discovered the cause of fibromyalgia does not mean the disease doesn’t exist. If you remember, for several years the cause of AIDS was unknown. Your doctors are right that fibromyalgia infects mostly middle aged women. It seems that the doctors in your article assume women are whiners. I wonder if more men were infected if the same doctors would have the same opinions. Would research for the cause and cure become more important? Mr. Berenson I am angry. Your article will prejudice further doctors and researches. You have just made the cure and treatment that much farther out of reach.

***

Shame on Alex Berenson for writing an article that was woefully underresearched, and extremely biased in order to validate his uninformed and incorrect hypothesis. Shame on the New York Times for printing such unscientific material about a disease(Fibromyalgia) that affects millions of Americans. From now on, I will find it impossible to trust the information that you print in "Science Times" due to the fact that you do not require rigorous research.

Even the most superficial exploration of the literature easily available on fibromyalgia will reveal the following:

Fibromyalgia is a functional disorder of the central nervous system, in which pain and other inputs processed abnormally, and are amplified before reaching the conscious areas of the brain. This is a conclusion reached by the majorityof FMS research scientists after many years of painstaking work.

Many studies have disproved the notion that fibromyalgia is caused by depression. Dealing with fibromyalgia make trigger anxiety or depression as may any chronic disease, but many fibromyalgia sufferers do not experience depression.

The HPA (hypothalamic/pituitary axis) and the autonomic nervous system are not functioning normally.

Biological tests do exist that identify abnormalities in neurotransmitter levels in persons with fibromyalgia, for example, serotonin, norepinephrine, substance P, and nerve growth factor , among others,have been measured in many trials, and are consistently found to be present in levels which are abnormal in persons with FMS.

Please Print a New Story That Is Well Researched, And Contains Up -To- Date, Valid Information On Fibromyalgia Syndrome.

Yours truly, Ruth Hardy

***

Dear Sir: I was diagnosed in 1992 by a Rheumatologist. I believe the syndrome is real as well as the diagnosis. I think that Dr. Wolfe has changed his attitude because he can not find any real tangible cause, and joins many other Dr.'s in just brushing off these patients as chronic complainers and people who can't deal with life. Don't dismiss this syndrome for what it is. A malfunction of signals to the brain. I myself am taking Lyrica and the benefits have changed my life. I have been able to return to work, I can now exercise which prevents the weight gain they claim as a side effect. I have also been taking different medications for 18 years and the dosage and the drug have stayed the same throughout, still doing what they were prescribed to do. I don't know where they are getting their information from but they are very wrong. I have been on Lyrica, 200mg per day for over a year and it has not lost it's efficacy and the side effects are non existent at least for me. The burning, indescribable, pain that was widespread throughout my body is now gone. I have always been a positive person and even without the Lyrica, depression was a real problem when I had chronic pain. Now my life has endless possibilities, I now feel like a productive part of society again. It is unfortunate that I live in an economically depressed area in Canada. With the chronic pain I became withdrawn, lost all my friends, was unable to attend family functions, unable to work in the profession I loved. Most of the Dr.'s I saw had the same attitude that Dr. Wolfe now has. Some Doctors are unable to deal with chronically ill patients and obviously he is one of them. He should either retire or retract his statements as they seem to based on his personal opinion and not that of a Doctor dealing with chronic pain patients. I am living proof that the syndrome does exist and if more money was put into research they would find the switch that is disrupting the sympathetic nervous system. Sincerely, Melodie Anne Zinyk

***

I was very angry to see that some people still do not see Fibromyalgia as a REAL condition or disease. I've met people who have it and I definitely have it. This is not something that is in my head or a desire to get some weird type of attention. Just because some people don't understand it, doesn't mean it is not real. Just because people didn't physically see the earth as round, doesn't mean that it wasn't round. My muscles are physically tight, my sensitivities to light, odor, and noise are real, my migraines are real, my daily constipation is real, my muscle spasms are real, when I do too much and my body gets worse is real. My guess it is a breakdown of the nervous system. How can anyone take away the hope of finding out what is the real cause of this disease by saying it isn't real! If you start to put this into peoples minds, there won't be a chance to find out the cause of this horrendous condition. It steals everyday of my life. I live to get through the day. I never thought I would have to worry about being ill. I thought I'd work even after retirement, because I love to work and be around people. Today, I can't work and can't handle the odors, noise, sounds of being around people. All my dreams are gone. Don't take away my hope that one day, I may be well and cured. I don't think these pills are going to be the answer either. I've tried them and they do have really bad side effects and had to stop taking them.

Thank you, Judy Hundt

***

I am deeply grieved by this article. I have been suffering with FM since at least 1999, when I had a hysterectomy. I am hypothyroid and have had two leg surgeries and 3 c-sections. I was it a hit and run car accident when I was 19 years old, no fault of my own. I have degenerative disc and joint disease proven by MRI's. I was diagnosed in 2006 and sought medical help in 2003 with testing by a neurologist and rheumatologist. . I also have peripheral neuropathy--pain and numbness in my hands and feet. This condition has taken away joy from my life and the ability to work. I have applied for disability and my hearing is in March. It has been 14 months. My income is $200 a month. I was in nursing school and had to quit because my pain prevented me from completing the course. I knew I could not perform physical duties. Being in chronic pain "fogs" your memory and brain and normal function is gone. Why do some doctors assume fibromyalgia is not real? It would be real if they or their wife had it. I try to be positive everyday but I am no longer a responsible, working adult contributing to society and I am scared as to what will happen to me with no income and no medical care! Please listen to the comments and pleas for help. Jane Moore Texas

***

I have Fibromyalgia. I have all the symptoms and then some. I’m on several medications to take the edge off of the pain. I cannot believe that anybody would want to make up there sufferings from Fibromyalgia. I should be having the time of my life. My daughters are women now. Off on there own. I have 7 grandchildren whom I love very deeply. I have babysat for them for the past 11 years. They are the only reason I get up out of bed in the morning during the week, after I do my body stretches of course. Thank God for grandchildren. Now I only care for one of them. Sebastian is 8 months old. He keeps me moving, which is a good thing. My husband is a wonderful man. He is the only reason I get up out of bed on the weekends. He can see the pain I go through daily. I’m always pushing myself to take care of all the housewife responsibilities. Even if it is only one chore a day. When 1pm comes around I’m finished. I’m exhausted. I’m thankful my husband understands and cooks dinner and cleans up. I would love to not be in pain and cook a wonderful meal for him like I used to do. I would be able to park my car and walk to the entrance of the store without being to tired to shop. To take my grandchildren to the museum, parks, and other places. It’s so exhausting these days. Wouldn’t it be wonderful to be able to do all the hobbies I used to take such pleasure doing. I would like to see Wolfe and Berenson with Fibro for a week. Lets see how they do. You really need to be tough and strong willed to have Fibro it’s a struggle everyday. Mema, Rochester, NY

***

After many years of struggling with chronic pain and trying to escape the diagnosis of Fibromyalgia, I have finally accepted that this condition exists in a very real way for me. Obviously, the author of the article in the NYT has never experienced the pain, confusion, exhaustion and disappointment of being unable to accomplish goals in his life. It is so sad that this journalist would target a community that has struggled to find a voice for understanding from a skeptical society. Each individual struggling with FMS tries to find a process that will work for them. Some are able to control symptoms with medication, alternative medicines, treatments, therapies or a combination of all of these. Society seeks the "magic pill". Drug companies market them to us. However; each of us must decide what we will use and in what combination to be able to function on a daily basis. I personally have found that drugs, overall, do not offer a cure for this nightmare. A combination of chiropractic, acupuncture, tai chi, a neural blocker, and sometimes just a good cry offers a respite. No Mr. Berenson, the pain never does really go away. Most of us try to blame, allergies, the weather, the phases of the moon....anything that will keep us from dwelling. And there are millions of us, so trust me, no "Dwelling" is going on for the majority of FMS victims.

Drug companies are largely trying to help, but ultimately, their bottom line dictates just how much "help" they can really offer. Knowledge of drug companies care more for their bottom line makes this patient wary.

Doctors, for the most part, are struggling to remain understanding and do try to help. It is discouraging for doctors and therapists to watch the roller coaster pain and lives of their patients with fibro. Doctors would like to offer the magic pill, but, generally, the magic only lasts so long before something else happens. For me it was a liver that could not tolerate the increasing levels of a drug that were needed to make my life easier. So I had to "get off" the med. Now there is an adventure! I kept close notes on the withdrawal and offered the information to my doctor who had consulted with the drug rep. The drug rep told her that there was NO PROBLEM weaning from the drug. I would very much like that rep to use the drug and then come off it and call me.

I pray that Mr Berenson does not have to ever watch a loved one "live" with Fibromyalgia. He may see pain like he has never seen before. He may see guilt. He may see someone trying to function on a day where every breath is agony and the touch of clothing against skin intolerable. And because of his belief that this condition is "largely imaginary", he will see a loved one trying to hide the pain and when they are unable to do so, turn away from him to spare him the "embarrassment" of having someone close to him have a "pretend" ailment. I am sorry for you Mr Berenson and anyone who read your article at the NYT and then allowed it to be published because you missed something very important. For if you had looked just a little closer you would have seen thousands and thousands of people who display courage and strength of character so much greater than the drug company bottom lines, or the doctor's denial of this condition. Perhaps your next article should be written after spending more time in research with the people you have maligned. You can't catch it if you were wondering. You may be surprised at the people you meet. Perhaps you should begin to contact US; the people who are living each day with fibromyalgia, not the doctors or the drug companies who can only TRY to help. What do you say? Are you up to the challenge? Contact The FMS Community and see if people will give you the time of day you denied them. Terry Gould

http://fmscommunity.org


 

FM Net on NY Times article

      New York Times writer Alex Berenson bashes pharmaceutical companies on a regular basis. But on January 14, 2008 the Times took his distrust of the drug industry too far with an insane article titled: "Drug Approved. Is Disease Real?" It's a tale about how Pfizer, Eli Lilly, and Forest Laboratories fabricated fibromyalgia so that they could make a fortune selling their drugs to patients who do not really have a disease at all-just problems adapting to the aches and pains of living!

      The article trampled the reputation of fibromyalgia patients, their doctors and scientists in the field. Berenson dredged up antiquated beliefs held by three die-hard doctors who truly believe millions of Americans are faking fibromyalgia. The stale theory that pain was not real unless it could be documented with a blood test or X-ray permeated the article.

      In response to Berenson's front-page feature in the NY Times, Fibromyalgia Network solicited statements from researchers and physicians across the country. Visit our website to read what the experts have to say about fibromyalgia and share their comments with anyone who doubts that your symptoms are real.

      As for the editors at the NY Times, do not hesitate to voice your opinion and let them know that they flubbed up by attacking people with fibromyalgia, a real disease. E-mail addresses for the News Department, the Public Editor, and the Managing Editor of the NY Times are given at the end of the web page postings from the experts. Feel free to include in your response a few of the valid points made by the experts and ask in your e-mail that the editors at the NY Times publish a quality article on fibromyalgia, its pain and symptoms you struggle with daily.

      If you or someone you know has fibromyalgia, don't let the NY Times set back the progress made in the field these past 20 years. Read the comments from the experts and let your voice be heard-even if it is a brief complaint.

      Kindest regards,

      Kristin Thorson, Editor
      Fibromyalgia Network
    

--------------------------------------------------------------------------

      Fibromyalgia Network ... Helping Patients Since 1988

      Add us (kthorson@fmnetnews.com) to your e-mail address book to
      ensure that you receive updates on services and savings!

      PO Box 31750 | Tucson, AZ 85751-1750 | (800) 853-2929 | www.fmnetnews.com  
      © 2008 Fibromyalgia Network

Wednesday, January 23, 2008

Activists intervene in Wrongful Termination Suit

As is mentioned in the following article, the National ME/FM Action Network
has been granted permission to "intervene" in the case between Mr. Keays and
Honda at the Supreme Court of Canada.  In accepting our application to
intervene, the Supreme Court is recognizing the importance of the case to
the ME/FM community and is indicating that our organization has a
perspective that could be helpful in deciding the case.  We were invited to
submit a "factum", a written document outlining our views.  In our factum,
we discuss the nature of accommodation required for ME/CFS, the need for
effective remedies for breach of the duty to accommodate and the importance
of incorporating the Human Rights Code into contracts of employment.
Recognizing the difficulty and costs of getting expert witnesses familiar
with ME/CFS, we ask the court to allow judges to access authoritative
websites.  Finally, we ask for the opportunity to present our arguments
orally at the hearing on February 20.  On January 15, the Court announced
that we will be allowed to give an oral presentation.

We are very grateful to the law firm Paliare Roland Rosenberg Rothstein LLP
who are representing our organization.  The firm has extensive experience in
both employment law and in appellate work, a perfect combination for this
intervention. 

SUPREME COURT OF CANADA SET TO HEAR APPEAL IN KEAYS V. HONDA

By: Hugh Scher, article published in Quest no. 76, winter 2007-08

On February 20, 2008 the Supreme Court of Canada will hear an appeal from
the Ontario Court of Appeal of their decision in Keays v. Honda.  The trial
judge in this case granted the largest ever punitive damages award in
Canadian employment law history when he awarded punitive damages of
$500,000.00 against Honda for its outrageous and high-handed conduct founded
upon its discrimination and harassment of Kevin Keays and intentional
efforts to evade Honda's responsibilities under human rights law.  In
addition to this, the trial judge awarded damages equivalent to 15 months'
reasonable notice, nine additional months of notice for reason of Honda's
bad faith in the manner of termination of Keays and an award of
reimbursement for legal costs in the amount of $610,000.00, inclusive of a
bonus premium of $155,000.00 to Keays' counsel Hugh Scher because of the
significant risk assumed and results achieved in this case.

The Ontario Court of Appeal upheld in principle all aspects of the trial
judgment finding that Honda wrongfully dismissed Keays from his employment
and engaged in bad faith in the manner of termination of Keays.  The Court
ruled that Honda committed a litany of acts of discrimination and harassment
against Keays which justified a substantial award of punitive damages.  The
Court of Appeal upheld the trial judge's award of 24 months' notice for
reason of the wrongful dismissal and bad faith.  Justice Goudge, who wrote
for a unanimous court on all other issues, would have upheld the trial
judge's award of $500,000.00 in punitive damages finding that it was a
proportionate response to the blameworthiness of Honda's misconduct, the
harm caused to Keays, Keays' particular vulnerability and the need to deter
this large employer and others from wrongfully terminating in order to evade
their duty to accommodate under human rights law.  Justice Rosenberg found
that a substantial award was justified but reduced the quantum from
$500,000.00 to $100,000.00 finding the award to be disproportional and that
certain of the trial judge's findings of fact were not supported by the
evidence.

The Supreme Court of Canada is being asked to affirm the trial judge's award
of punitive damages as well as to grant additional damages for
discrimination and harassment against Honda.  Honda seeks to have the
decision of the Ontario Court of Appeal set aside.

The Supreme Court of Canada has granted nine intervention applications from
disability and women's organizations, human rights commissions and employer
representatives who wish to make submissions to the Court with respect to
the legal issues in this case.

The National ME/FM Action Network is one of those interveners.  Additional
interveners include the Council of Canadians with disabilities, the Injured
Workers Network of Ontario, LEAF, the Canadian, Ontario and Manitoba Human
Rights Commissions, the Canadian Manufacturer's Association, and the Human
Resources Professional Association of Ontario. 

This case offers the Supreme Court a unique opportunity to consider the
relationship between bad faith conduct, discrimination and harassment in the
employment relationship and to determine the best way to compensate victims
of such conduct and to punish the perpetrators.  The Courts below have
affirmed the paramount importance of human rights protections to ensure
meaningful access to social and economic life for people with disabilities.
However, a 30-year-old precedent from the Supreme Court prevents Courts from
providing compensation for discrimination and harassment.  The Court will be
asked to reconsider this decision and to increase the number of tools
available to Courts to address discrimination and harassment. 

This case raises legal issues of fundamental importance to people with
disabilities across Canada and is being watched very closely by people with
disabilities and employers across the country because of its significant
impact.

The trial award of punitive damages is by far the largest ever in an
employment law case and represents one of the largest awards ever in
Canadian history.  Should it be maintained by the Supreme Court of Canada it
would send a significant message to employers and insurers that people with
chronic fatigue syndrome and related conditions must be taken seriously and
that their claims to equal treatment, respect and consideration and to their
just entitlement to benefits must be respected or employers and insurers
will face significant penalties.

Note on Author: Hugh Scher is a partner in the law firm of Scher & De
Angelis where he practices civil litigation with a focus on  employment,
insurance and human rights law especially in the area of disability rights.
He serves as counsel to the National ME/FM Action Network, ME Ontario and
Fibromyalgia Society of Ontario and has represented dozens of individuals
from across the country with Fibromyalgia and Chronic Fatigue Syndrome in
disputes with long-term disability insurers, the Canada Pension Plan,
employers and Revenue Canada. Mr. Scher served as our counsel in the Lowe v.
Guarantee Insurance (2005), O.J. (O.C.A.) and is counsel to Kevin Keays in
Keays v. Honda.

Tuesday, January 22, 2008

Myths and Facts -- THIS patient talks back

Doctors throw around all sorts of theories about why you have symptoms.

"You're fat."  I was 5'7", 125 pounds when I got sick.  The bottom number on the weight chart for my height was 135, so I was definitely NOT fat ... I was underweight.

"You're menopausal." OR "It's just normal aging."  I was 28 when I got the virus that resulted in CFS.  I was neither menopausal nor middle-aged.

"You need to exercise more."  I was exercising every day when I got sick, and walking at least an hour a day when I relapsed.  How much more exercise do they think a woman with a full-time job has time for?

"You're out of shape."  I double-dare any of the doctors who came up with this theory to lift more weight proportionally than I was able to lift.  I could (and did) lift/carry people who weighed twice as much as I did, and did it without breaking a sweat. 

If you're married, you "resent your husband making you work", but if you're not married, the cure is to get married.

"You're lazy."  Excuuuuuuuuuuse me?  Someone who has had 2-3 jobs most of her life is not lazy.  The lazy one is the doctor who can't be bothered to investigate further when the basic first-round blood tests come back normal.  In fact, neither CFS nor fibromyalgia will show up on blood tests for diabetes, anemia, etc.  There are tests that will show abnormalities, but they're not among the tests that are routinely done in a basic exam.

"It's all in your head."  A 105 fever was not "in my head".  One of the fundamentals of hypochondria is that no one knows you're sick until you tell them.  I had symptoms that other people could see for themselves.  When I dragged myself back to work because I needed the money, my co-workers commented that I looked like hell.  For some reason, everyone EXCEPT the doctor could see these symptoms.

"Secondary gain."  Well, maybe if you have a doting husband who will take a second job to pay the bills and hire a maid so you can avoid your responsibilities around the house.  I don't have one of those.  No one takes care of me except me.  If I don't work, there's no money (and SSDI, if/when I get it, is not enough to pay the bills, much less to hire a weekly maid service).  Being sick costs me far more than I'm getting in return -- since my Unemployment ran out in summer 2000, I have received not one cent of government benefits.  No one does my chores unless I pay them.  It's costing me tens of thousands of dollars every year in lost income, paying for medical insurance that would otherwise be provided by an employer, etc.  And my most recent SSA statement shows that my retirement benefits are already down by $200 a month because I haven't been contributing at the level that I did when I was working full-time.  There is absolutely no gain in this for me, only losses.

And then, the ever popular "depression" diagnosis, regardless of whether the patient has any of the emotional requirements to justify that diagnosis.  People with psych training keep sending me back to the doctor with the observation that I don't have any of the emotional components required: the symptoms I have are those of physical illness, it sounds like flu to the psych expert. 

The doctors ignore the psych experts, because they don't want to hear that the ball is back in their court.  That would require them to take the time to sit down and figure out what's really wrong.  Or admit that they don't know everything and call in a specialist.  Early on, I got the name of a specialist in my medical group who said he could help me; under medical group policy, I needed a written referral from my doctor, who refused to give it to me.   

The problem is not the patients.  The problem is the doctors who are unfamiliar with the research, and expect the patients to get better from treatments that have been proven useless.

With both CFS and fibro, there is plenty of research showing biological abnormalities.  It is irresponsible and slanderous for anyone to say "it's not real".  That proves their ignorance to those who know the facts.  The problem is, too many people don't know the facts, and will rely on articles like this one in forming their opinions.  "If the Times says it, it must be true."  That ensures even more discrimination against the disabled.

Maybe some people are jealous that they have to work and I have all this free time.  But I can guarantee you, if they had to live under the same conditions I do, they would choose to go back to even the worst job, rather than endure the non-stop pain, the poverty, the loss of independence, the verbal abuse...  My "free time" is taken up with doing chores, which now take at least twice as long because I have to move slowly, and require at least twice as much time to rest (e.g., doing half an hour of housework means an additional hour lying down, sometimes more, plus half an hour soaking in a hot bath to ease the pain enough that I can stand to lie down with my whole body in contact with the bed or couch).

Patients Talk Back, Volume 4

Second Protest Letter the the N.Y. Times What can I say? Your response has been over whelming and the letters are powerful. We sent out one protest last night and tonight we have sent the second round to the Times. I have not had a response from the paper yet, but if I do hear from them I will post it here. With that said, here is the second mailing. Jane

*************

To: N.Y. Times

From: The Fmscommunity.org 501(3)

While we sent you a letter protesting Alex Berensons' recent article on Fibromyalgia and his quoted sources yesterday, we have received many more mailings on this subject. As an organization that exists to protect patient rights we feel that it is important to make sure the very people that Mr. Berensons' article could hurt, have a chance to be heard. It is estimated that one in every fifty people in this country suffer from Fibro or another form of chronic pain. That is a lot of people that may be looked down on thanks to Mr. Berensons' careless reporting. We respectfully submit our second round of protest letters. Jane Kohler

fmscommunity.org

turnip@fmscommunity.org

********

I was married in 1996. I'm 50 years old. Do you really think I would jeopardize our wonderful marriage by all at once (pretending and complaining) of horrific pain in my body. My husband works 10 hour days, comes home to cook dinner and help me fold laundry, vacuum or any other house hold chores that need to be done. Do you know how guilty I feel to have to have him help me with every day chores. I always try my best to keep our home clean. Sometimes I sit on the floor and just cry because I'm to tired and drained to lift my arms up to wash a few dishes. I am not collecting any disability. I've put us in the poor house because of $300.00 a month prescriptions, Vitamins, supplements and more in medical bills and CO-pays. We had to sell our home and buy a ranch home because I couldn't go up and down the stairs. I have many allergies and not just seasonal allergies. I am also allergic to ALL Opiates, a lot of anti-inflammatory drugs. I am in agony. My pain is unbelievable. I recently just got over the flu, I thought I was going to die with the pain. I have been diagnosed with Fibromyalgia in 2004. I believe I actually had it in high school. In one incident, I was swimming across the pool when all at once my arms gave way and I sunk to the bottom of the pool. My arms were felt like they weighed a ton. To weak to hold me up. I was pulled out from the bottom of the pool by my teacher. In 1979 I was diagnosed with Viral Spinal Meningitis. I was very sick for 3 months. I always felt tired and achy over the years. I thought everybody else felt that way. In 1980 I was diagnosed with Spastic colon, and stomach ulcers. In 1996 Tennis elbows, (Osteoarthritus) right and left elbows. I had Ulna nerve transposition surgery done, for pinched nerves. It still hurt to pull and push, carry with my arms. In 1998 I had constant pain in my lower & upper back, then it started down my leg. I had a Lumbar disc removed. In 2000 I was diagnosed with Osteoarthritus in my knees. I wore knee braces for years. In 2001 I was diagnosed with Carpal tunnel right wrist, I had surgery done on that. I always had terrible pain with menses. In 2004 I had to have a Hysterectomy. I was finally diagnosed with Fibromyalgia, TMJ, RLS, and CFS. I never knew I wasn't actually sleeping all these years until I was put on medication to help me sleep. My husband would wake me up alot during the night asking me where I was running to. That was my RLS. In 2006 I had Rotator cuff repair, Acromioplasty, and Exc. Distal Clavicle for Osteoarthritus in my shoulder. In 2006 I was diagnosed with Hypothyroidism, Plantar Fascitis, and Tenosynovitis in both feet. I could not put my feet onto the floor in the morning, I'd have to crawl to the bathroom. I had Fasciotomy surgery on both feet. I have been to acupuncturist which helped a lot but we have reached a point where I was at a stand still with the pain. I can slide my hand down my arm and feel the nodules in my muscles, and they hurt a lot when touched. I have these nodules at the bottom of my feet as well as throughout my body, just imagine walking on them. For just a few days I'd like to see Berenson walk in my shoes (on them nodules). We need to find a cure for this devastating disease. Bereson needs to keep his opinions to himself. I have tried Lyrica and unfortunatly my hands and feet swelled up and were very painful. I hope Berenson hasn't stopped any one from searching for other drugs that may help me. Gail Simons, Rochester, NY

Wow, that must mean that people diagnosed cancer, arthritis, and any other condition must also live under a cloud. It is pretty sad that all people who have been diagnosed with a condition are forced to catalog their pain and get even sicker. What a totally absurd thing to say. I have had fibromyalgia since I was 8 years old (1970). I was not diagnosed until 1994. My symptoms have not changed much since that time, except that the pain is worse. Boy all those years in between before I was diagnosed as the pain worsened and other symptoms appeared I sure did concentrate much more because I secretly in my mind knew that I had fibromyalgia. My condition got worse BEFORE I was diagnosed, not after. I also do not constantly think about my aches and pains, I just try to live with them the best way that I can. I have had doctor’s tell my parent’s that I was faking it and as an adult have heard the same thing. In fact, the neurologist who was the last doctor to see me before my diagnosis fired me as his patient because I was ‘faking it’. The best thing the jerk could have done was send me to a rheumatologist who diagnosed me the next week. I was given medicine that within a couple of weeks completely cleared up my ‘flu-like pain’. I have many times taken myself off of the medicine thinking that maybe this isn’t fibromyalgia, but guess what? By late that evening I can’t even get out of bed because the pain and muscle fatigue is so bad that I can’t do anything but cry. I know this won’t convince any of those doctors who don’t believe in this condition, but maybe they should ask their peers how many have fibromyalgia and ask them to relate to them in ‘doctor speak’ how they feel. If I could just breathe on people who don’t believe there is fibromyalgia and give it to them for even a month then maybe they would understand that it is real. Lyrica does not work for me because it causes to much sleepiness, but I pray that it works for someone that they may be relieved of this. Beth August, San Antonio, Texas

My very active, healthy husband was diagnosed with this horrendous disorder 11, almost 12 years ago. His children and I watched as his health got worse and the pain got greater. He worked his labor job every day, until the pain was so intense, he couldn't stand to be touched. He couldn't even put clothing on, because the slightest weight sent this strong man into tears, the pain was so excruciating. I then began to research this disease, and I love how dr.s will tell you "THERE ARE NO CONCLUSIVE TEST TO PROVE FIBROMYALGIA" . HORSE HOCKEY. in a 1996 medical journal, it states that the only conclusive test for fibromyalgia ISN'T DONE BECAUSE IT IS EXPENSIVE, INVASIVE, AND DANGEROUS!!!!!!!!!!!!! It is a spinal tap that shows an elevation of substance P in the spinal fluid, and a decrease of substance S. Since his diagnosis, I have spent 3000 hrs in a medical library, researching every new thing out on this disease, more I guarantee you than this author has, and definitely more tha n your doctors have the time (or the inclination ) to do. Many of my husbands dr.s have said that I know more than they do, and have me go and retrieve these articles for them to review when we come in next. DON'T TELL THESE PEOPLE THEY ARE NOT REALLY SICK YOU, JERKS. NOT UNTIL YOU LIVE IN THEIR SHOES. Not until you can't stand clothes on your skin, can't bear for your loved ones for your loved ones to hug or kiss you, until your grandchildren walk into your home, ready to jump on your lap and have you read to them, only to stop and look hurt as they realize your too flared for them to even hug. Do Not tell me this doesn't exist, I live with it every day as I watch this beautiful, loving man struggle to live a normal life. Karol A. Rawlings

I know now that Fibro is real. I was finally told by my doctor what I have be fighting for years. I grew up with endometriosis, had a hystrorectomy at 27 because of it. I spent 20 hours in hard labor with my first child, I have had three C-Sections, and each time I was out of the hospital within 2 to 3 days after, not feeling that much pain, up and walking hours after the surgeries. To sum this up, the pain I have gone through most of my life, I have learned to live with, and continued to go to school, to work, and to live. Never seeing all those things as being very painful. I had an accident 7 years ago and shattered my ankle during a show I was singing at. I watched, along with the paramedics, my ankle swell to 4 times the size within minutes. I told them to wrap it and that I was going back on stage and finish the show. They told me I had to go to the hospital since it was 2 hours away from where I was. I have been through two surgeries and now have pins in it. I have not been able to walk great with it; some days are good, some are not. I started having trouble about 4 years ago. It started with just trying to walk, then it was hard to get out of bed to stand. Going up and down stairs in a house full of them has been the hardest. Then I had trouble with my hands and feet falling asleep alot. Here I am four years later, never really knowing what Fibro was or why I was feeling so awful. I take all natrual herbs and try to eat right, natural foods that is. I do not like taking meds. I got to the point where I couldn't get out of bed after working too much. For days I am bed riddin', not able to get up to go to the bathroom, the pain is so unbelievable. I would rather deliver three kids at once then deal with that pain. It's not just pain, your hair, your skin, to have clothes touch your skin is so painful. All you want to do is stay as warm as you can and not move. My jaw and face feel like someone beat me so bad, and my fingers ache, your ears ring, it will wake you up out of a sound sleep, when and if you fall asleep. To roll over in bed is like being a burn victim trying to roll over and let the sheets just rub up against the raw skin. Your insides and outsides hurt, ache. sometimes it's a non stop pain, and other times it can be a non stop thobbing pain, you can feel a pulse throughout your entire body and each beat hurts. It gets to the point where all you can do is cry, but you don't want to move or shake with a sob because it will make you feel worse. I consider myself to have a very high tolerance to pain as you read earlier. When I went to my doctor and told him what I was feeling and how bad I felt, he was stunned, because I don't go to the doctor but maybe once every 1 to 2 years. I only go if it is extremely necessary. He knew I was not feel well by the look on my face and what I said to him. All I knew at that point was I wanted drugs and I needed them now! He knew then that I was really in pain because he knows I don't t like aking asprin. I don't like to take any kind of meds. So if you tell me this is in my head, I'll tell you, live in my shoes for 1 hour, that is all you will need, while this pain is going on and we will see who believes and who doesn't. I didn't believe that that type of pain was even possible. Yes, Fibro is real! It is not a disorder it is a disease. Get it right, you have an education, use it. Stephanie M. Scribani

January 15, 2008 Alex Berenson New York Times Health 620 8th Avenue New York, NY 10018-1405 Dear Alex Berenson: Introduction: I am a Fibromyalgia (FM) activist and patient advocate (and lifelong patient), I have presented at patient conferences and have moderated and facilitated at medical conferences for the past 17 years, longer than any currently active lay person in the FM community. I read medical journals and belong to medical societies in order to best help people with FM. It was with dismay that I read your article yesterday entitled Drug Approved. Is Disease Real? This is 2008. That is no longer a valid question, yet it appeared yesterday on the front page of the NYTimes. You have not done your homework. And you have helped destroy the lives of FM patients by presenting uncaring, lazy doctors with tiresomely old mis-information. As you can deduct from the angry rhetoric of 2 of the 3 well known anti-FM physicians you quoted, FM has gotten bad press. You have perpetuated it here. At least 5% of the general population suffers from this horrible disease and can find no medical support for it. They lose their jobs, their spouses, their homes, their raisons d’etre, and many commit suicide. I am the unfortunate recipient of a suicide note from a Kevorkian aided FM patient suicide and the beneficiary of a portion of the estate of another FM patient who died at a young age. I know of many other suicides, and they continue. Why? Patients with chronic pain and other unfortunate symptoms of FM, have been accused, by their families and friends, of somatisizing, known in lay terms as hypochondria. They then go to doctors who refuse to treat them, refuse to recognize their pain, tell them it must be all in their heads, and ship them off to psychiatrists who know little about how to treat pain. We call it lovingly IAIYH - ‘it’s all in your head. ‘ Since so few people, lay or professional, believe them, they often wish to end it all. They’re probably better off dead. Living like this is hell. I have a data base of c. 1100 patient recommended doctors who believe there IS an FM (clearly they read), treat patients with respect and kindness, and help them deal with their very real disease. I’ve also received over 20,000 pleas in the past 17 years for help in finding decent doctors. This may shock you, but in the New England Journal of Medicine recently there was a paper about doctors not reading. They only read, according to the paper, information they receive from pharmaceuticals and what they learned in medical school. Hundreds of thousands of papers and research efforts (all funded, of course) have addressed FM, yet you chose to read and focus heavily on Fred Wolfe and Norton Hadler who have been totally disrespected in the FM medical community for over 10 years, because of their vitriol and stupidity. One of them is said to work for an insurance company which is why they claim that people invent pain for financial remuneration. By the way, if Fred Wolfe thinks this is an imaginary disease, why did he write, with other doctors, a paper in 1995 about its prevalence in the general population? Prevalence of an imaginary disease, eh? Moreover, Fred Wolfe and many other doctors wrote the 1990 ACR criteria for categorizing FM; he was no more important than the others as you implied in your article. Did you interview any of the most important FM investigators/clinicians, besides Dan Clauw whom you quoted only briefly? They would include Leslie Crofford, MD in Lexington, KY, Muhammud Yunus, MD in Peoria, IL, I. Jon Russell, MD in San Antonio, TX, Robert Bennett, MD in Portland, OR, Patrick Wood in Washington, DC, Manuel Martinez-Lavin, MD in Mexico City, Don Goldenberg, MD in Newton, MA, Harvey Moldovsky, MD in Toronto, Hugh Smythe, MD in Toronto, and Roland Staud, MD in Gainesville? Why are hundreds of thousands of lazy, careless doctors willing to accept the vitriol of Dr’s Wolfe, Hadler and Ehrlich while their patients suffer intractable pain? They claim that there are no objective findings to prove FM’s existance. This is most certainly not true, and they’re making excuses. They don’t want to find them. FM may be harder to treat than cancer, arthritis and cardiac conditions, but there are lots of diseases that have no objective findings and are hard to treat. They include migraine headaches, trigeminal neuralgia, kidney stones, rotator cuff tendonitis, and many more. (1) Did their Hippocratic Oaths state that they should only treat the easiest health conditions and ignore everything else? Moreover, doctors can’t be sure that what they do for people with FM (PWFM) is going to dramatically help them. They want to cure, but their egos are at risk. ‘Though they can’t cure PWFM, they can help them tremendously. I’ve saved hundreds of stories about mean, uncaring doctors, and 2 publishers were loathe to print them in a book, because ‘one wants to be nice to doctors.’ It’s just not important, in this country, for doctors to be nice to patients. Do you have any idea the damage you’ve done? This will affect, not only PWFM, but also people with other awful chronic diseases, such as Chronic Myofascial Pain, Sjogrens, Chronic Fatigue, Migraine Headaches, Irritable Bowel Syndrome, and many more, because doctors will take your article as proof that they’re right. I can hear the ‘I told you so’s’ now. I am sending to you via snail mail, a copy of this letter and just a sampling of short papers written several years ago by some of the most important and responsible doctors in the FM Community in response to the Wolfe/Hadler/Ehrlichman’s perfidy. This is ancient history, yet you are printing it now on the front page of the NYTimes. I’m also including a couple of good, short explanations of FM, and a copy of a Reference List from a medical paper, in addition to the reference lists at the end of each article, to prove to you that the medical community worldwide is on to FM and is working like crazy to find its etiology so that they can effectively help PWFM and related chronic illnesses. Sincerely, Betsy Jacobson BA, Barnard College (Betsy has worked tirelessly for the FM Community since 1991)

Fibromyalgia is;A Real Disease. I was slim & doing aerobics 2 hrs, 5 days a week.height 5/3 weight 130lbs size 5/6. I was up at 6 down by 11. I power napped for 10 minutes & off I went . Raised 2 kids fed 7 in the house,had boarders, I had energy. Then In the 90's I was getting tired. And one day I hurt so bad in my right ankle, went to the Dr & was sent to a specialist. I was handed Fibro info and told to learn about it as that is what I have. Each day was pain here pain there. I thought I do not have this.I do not want this. I go back to the specialist and, he says Yes you do have Fibro. I say this to you, I had a huge tolerance to pain. And now I do not . My tolerance has been taken and my energy. I also Have a rash from my shoulders down to my back never goes away. I have pain when I stand up to long and pain when I lay down to long. I even get escalating nerve pain where I go to the hospital for ex rays . I get meds so I can live with that pain. I do not ever sleep well 2hrs then 1 then 1 then 2. Obsess over aches and pains? No! Not true it is real! I may ache for a week, then get a day of rest . Are you living in my body? NO! I am not over weight. I am Ticked to hear someone say it is not real. Well it is and I have," Fibromyalgia!" My Dr., Believes in my tiredness my pain & all the extras that come with this . I am very thankful for him. I hope you do not get Fibro, For those that do. Please Have some Empathy as then you will believe. My point is: Does not Matter who has it, Men,boys or Women,children,Big or Small . We are real people with Fibromyalgia! Kim Madinsky - Abbotsford B.C.

Patients Talk Back, Vol. 5

I read this from two different sources, your official publication being one of them. I looked at this from a different view point. To me, there was both pros and cons in the discussion of fibromyalgia being a disease. There seemed to be an opinion that a pharmaceutical stands to make a profit from their approved drug. My, My. Isn't that what capitalism isall about? Isn't that what research is all about? Yes, research gives us clues as to what is going wrong or right but in the end, it is for the benefits that reward everyone with cure, relief, or profit. My point of dissension is with Dr. Ehrlich who claims people with fibromyalgia do not adapt. HORSE FEATHERS!!! Everyone I know through support groups and exercise groups with this "affliction" are extremely adaptable. We spend most of our wake time trying to adapt and solve myriads of small, everyday problems just to make our own lives a tiny bit easier. We share ways to do things that get the laundry, cooking and cleaning done, get supplies off of shelves, pick up dropped items, exercising within our own limits, and stories to bring out a smile or two, that is if we have any energy at all. We find ways to make ourselves useful , again within our own limits. Most of us are willing to try nearly anything that may help. True, chemical sensitivity takes its toll and limits the use of medications. Still, most of us find something that works for awhile. I think Mr. Berenson might have been more positive about fibromyalgia research and caring for sufferers but he did present thoughts from both sides. It is unfortunate that the title of the article raises the question of authenticity and immediately raises that red flag yet one more time. I am sure it will not be the last time such a thing happens. Let's rejoice in the current research and findings that are slowly making an uncontested state of legitimacy. Marion in Southern CA

For those of you who do not suffer from this, there are several things to say. 1. Feel Blessed 2. If you can remember the most wicked case of the flu, one where it put you down and hurt to comb your hair, that is our good days. 3. We have been told everything from it's in your head to taking powerful narcotics that kill the pain. 4. FMS people don't sleep, they pass out from sheer exhaustion 5. people who don't have a clue, mainly Doctors don't like us as patients because we don't fit in a box. It's easier to send us on to someone else than for them to try and understand us. 6.Suicide is rampant among us sufferers and in my opinion it's because people don't believe them nor do they try to understand something that we the FMS sufferer sure don't understand. No support. You're a whack job. get over it. You don't look sick. 7. It's miserable. It's real and it effects men as well. 8. I laugh in so called medical doctors faces who say it doesn't exist. It show their lack of training and their lack of professionalism and their lack of caring. 9. You may have good days, sort of, and there are real bad days. You don't get over this without help and if you did you probably didn't have it to begin with. 10. I have been a sufferer for ten years and the only relief I got was from a chiropractor in South Lake Tahoe who specializes in FMS patients only. That is not a free plug but honest fact. Barry

I've just read this article which I found on the front page of the Health section of the NYTimes' and find it sadly lacking in info on the disease while working very hard to question both Lyrica and Fibro. If this article had been on the financial page I could maybe understand questioning it as a new drug but not here, it's too personal, to full of distortions and ignorance to be where I found it. He has basically dismissed the disease as one more complaint from middle age women ( actually it's more women of childbearing age) while choosing to make them also sound weak and complaining, not strong enough to cope with the pains that come with life. How very sad this man is, how thoughtless he is to write these things without knowing the stories of the people he dismisses. With only a nodding acknowledgement of talking to one person with Fibro, then on to the statements of Dr.'s that don't want to acknowledge Fibro exist, mostly the denial comes because they would then have to treat it and it's a no win situation for them because we don't get "well". These words were actually told to me by my former Rheumatoligist along with the statement that Fibromyalgia patients take too much time and it's not worth it to him financially. He would make much more working with people with RA. He is still a Dr, and has become fairly well known in the area explaining the virtues of Embral for RA, I even saw him on a local noon day talk show. He became a highly paid Dr for his appearances and doesn't have to deal with us complaining Fibro patients anymore. There is not one of us, these Fibromyalgia patients whose illness Mr Berenson dismissed in this article, that doesn't have painful and traumatizing stories to tell or years of being told it's all in our heads because the lab work doesn't say what's wrong. My heroes are the Drs. that have had the strength and courage to stand up against their peers and tell what they know, that this is a real disease, cause unknown maybe, but a real life altering disease. Fibromyalgia is NOT "vague complains of chronic pain", it is a problem of the central nervous system, it has specific ranges of physical pain points, combines with a number of defined illnesses such as IBS, sleep disorders, TMJ, migraines, chronic fatigue syndrome and many other diagnosed problems. Not everyone will suffer all of these or at the same timelines in their lives, but it's specific enough to have come to the attention of the doctors that took the time to listen to their patients not just a lab test. There have also been neurological studies that prove many of the changes in our central nerve system, in the way our brains perceive pain but these don't show up in blood work, so to some it's not important. One of the simplest ways to understand the disease, from the pain problems to the legal aspects of it is here. It's a clear cut article about Fibro that was presented in written form before Congress in 1998 but still as relevant today as the day it was written. It's been known as a syndrome, which is a combination of symptoms when all added together made the syndrome. MS is a syndrome, Lupus is a syndrome and many more start out being known as syndromes and then acknowledged as diseases. To be dismissed by this man, Alex Berenson, without personal knowledge of Lyrica or Fibro, is so far from being helpful that I will not be reading another thing wrote by him as I have no faith in his ability to professionally cover a story. Personally I was put on Lyrica almost 3 years ago for diabetic neuropathy and shingle pain and am extremely grateful for the relief I've had from it. It was not being used as a Fibro drug back then in my area but as a Fibro sufferer for 33 years, ( yes, before it had a name) I knew I had received relief from it without knowing that people in other areas, like Louisville,KY, were in clinical studies for the use of it for Fibro. I only knew why I was given it here and not only was it amazing for the nerve damage but had given me some relief from the Fibro pain. I won't say it's the miracle cure, a miracle answer, for us. I will say that I have personally receive help from it, know of others that have had various degrees of help from it and if it can help one other person the way it has me I will be grateful for it. No, it's not a cure, but it's possibly a way, a chance, to become a little more like our "old" selves. And that's all we want, just to be our old, normal selves. Nothing fancy, just us again. Pat Bennett pkb413@gmail.com

To Whom It May Concern: Fibromyalgia is a real syndrome and a survival characteristic to prevent a person from flat out driving themselves to extinction. How do I know this? I’ve had fibromyalgia for 33 years. You will hear the same kind of stories from fibromyalgia sufferers. They went on through the pain and kept doing and doing and living through one trauma after another and never getting any relief. I am one of those people. I grew up with alcoholic parents. I worked hard in school often on honor roll. While going to school I worked nearly fulltime at McDonald’s (this was before laws were passed to prevent working high schooler’s half to death) and I was responsible for housework and laundry for the entire family. In my senior year of H.S., I had a car accident that caused my face to hit and break the steering column of the car. I was wearing a seat belt. How many H.S. kids do you think wore seat belts back in 1973? I split my lip in half and had to have 36 stitches to put it back together. I waited 4 hours for the plastic surgeon and stayed still while they stuck needles straight into the wounds to numb my face. You can’t tell I ever damaged my lip I healed so well. After graduation I went into the U.S. Navy, where I had a wisdom tooth extracted (my personal dentist said it would never need removing) and the dentist (quack?) caused an infection which went untreated for nearly 3 months before a competent oral surgeon cracked my jaw again and according to his words, ‘took out the dead and traumatized bone’. I’ve suffered from vertigo ever since. I later received an ‘Honorable Discharge’ from the United States Navy. A short time later I developed a hypothyroid condition and then severe migraines. After the birth of my 1st daughter the hypothyroid condition magically cleared up but a whole new set of symptoms came into play. The dreaded PMS symptoms, and irritable bowel. I didn’t have PMS for a few days each month. I had it for the whole month. About the only time I felt half decent was when I was actually on my menses. I’ve had boils erupt, unexplained rashes, blurry vision, fatigue, pain (joint and muscle), muscle tension, cramps, muscle weakness, heart palpitations, hot flashes and so much more since my early twenty’s. With each trauma in life the symptoms worsened and I fought harder to overcome them. I’ve fallen down a flight of stairs, given birth to 3 daughters without the wonder of an epidural or any other pain medication. Natural childbirth I believe they called it back then. I struggled through 4 years of college while taking care of 3 daughters, being a Camp Fire leader, camp counselor, faith formation instructor, and even chairperson of the faith formation committee. In July of 1998 I had a hysterectomy with a whoops (a severed artery to an ovary) and nearly bled to death and didn’t have any transfusions, but I was back for my last year of college the next September and still raising 3 daughters, with a sick husband on permanent disability. Then the real trauma hit. I woke up one night in 1999 to my house burning and my oldest daughter and my little 16-month-old granddaughter died. Then the next year on the same day my husband succumbed to cancer and 6 weeks later my brother committed suicide. I kept right on plugging along working part-time, taking care of my two teenaged daughters, getting them to therapy and grief counseling and hurting an so exhausted. I’ve never taken street drugs, seldom ever drank, quit smoking years ago, yet my body and the medical profession have betrayed me. I am an intelligent person who has an incredible creative process, yet I cannot work. Do you have any idea how angry that makes me? And the feelings of guilt, we won’t even discuss. Doctors and lay people who judge me just a ‘big wuss’ or ‘pansy’ are cruel and uninformed. I don’t know why the doctor changed his mind, whether he had a wife with fibromyalgia and they divorced and now he hates her, so fibromyalgia no longer exists or if they took his grant money and he’s ticked off or whether he’s just gone round the bend, but I resent a newspaper, that is read nationally and taken seriously by its readers, printing an article without the latest findings from other doctors who have more current information and printing the opinion of one doctor, who after all is only a man, as though he is a god who can ‘giveth a syndrome and then taketh away the syndrome’. Did I mention my favorite symptom of fibromyalgia? Fibro fog. It is a lovely part of the syndrome where your thoughts go fuzzy and you simply can’t remember things. I was donating blood one day and I literally had to look at my driver’s license to find out my name. Just this afternoon I was saying the ABC’s and was not sure if I was getting them right or not. Yet, right now I can write this letter and be mostly coherent or at least it seems so to me. I am most disappointed in your newspaper. I though better of ‘The New York Times’. Ah, well, I’ve been to enough doctors, that I’m pretty good at handling disappointment. I just thought editors and news journalists were more attention and detail oriented. Live and learn. Sincerely, Dianne R. King-Fitch, Ocean Park, WA

The first thing I wonder after reading the article is how much of the current Fibromyalgia literature has the author read and/or understood? The author is basically implying that all of the wonderful research that has been done related to Fibromyalgia not only has no validity, but that it's generators are just trying to come up with excuses for non-existent symptoms affecting a large number of us fat, lazy, complaining, ignorant, unable-to- cope -with -life middle-age women. I wonder how many personal stories or case studies has the author made himself familiar with before making judgment. Does this author realize that it is statistically extremely unlikely that ALL of the authors of every article describing fibromyalgia research or experience could be incompetent’ I think it also statistically unlikely that ALL persons receiving a diagnosis of Fibromyalgia are merely displaying behaviors related to hysteria, hypochondria or depression/anxiety. If the author has any training in the sciences, where is the point-by-point discussion of the rationale behind his statements, and the research behind the mere opinions he is offering as an attempt to refute actual data? This article is just another in a string of opinions offered without basis in fact, to explain away information that for whatever reason the author just does not want to recognize as legitimate. A lot of us "Fibromyalgics" can tell you that the pain we experience is not something that any human being should be made to "just tolerate " . (There is also a Patients Bill of Rights that describes the right to be treated for pain) Pain is interruptive of daily function, concentration, relationships and overall well-being (Does the author truly need to be convinced that pain is just bad?) We are honest, hard-working and intelligent. I wonder what the author thinks the motivation for us would be to give up all of the activities we love, to lie about how hard it can be at times to walk or to just take a shower and get dressed; to stay home when your friends and family are going somewhere and you stay home alone because you don't feel well enough. I can state very specifically what types of symptoms I have experienced, and what has worsened or improved them. It is repeatable; that is, my body responds in a predictable manner, consistent within the framework used to describe fibromyalgia, including the presence of central nervous system sensitization. I think that many Physicians that have not read or just not subscribed to current research related to Fibromyalgia are unwilling to channel in any positive way their frustration with the difficulty in knowing how to deal with the variance in each individuals presentation of symptoms. This requires a desire on the part of caregivers to listen, and to work with each individual until the most effective combination of interventions is arrived at as a result of the patient-caregiver partnership. Didn't they used to place people with Parkinson's disease in mental institutions because they hadn't yet created a medically-based definition/diagnosis to account for such "strange" behavior? I wonder how the author would feel if he went to his physician with a description of some symptoms that were causing him to be unable to function in some manner, and the physician, who one should be able to trust to at least offer a referral to another physician that DOES have an understanding of the problem if he does not, merely gives you a dirty look, forgoes any examination or the taking of a medical history and tells you to go home and "just tolerate what the rest of us do". Cynthia The article from the New York Times concerning fibromyalgia was a real insult to those of us who truly suffer the pain (whether it is real pain or perceived pain) of fibromyalgia. The quoted researcher has done indescribable damage. I know that you are not the source of the words. I take two medications to control the pain (with others in case of breakthrough) and anyone who might see me when I have been out of the medication due to failing to get the script refilled on time would realize immediately that something was seriously wrong. I will end up in bed with an electric blanket turned all the way up, several blankets piled on top to weigh down on the muscles, in fetal position, unable to sleep or get comfortable enough to be calm. After several hours of that, I am near hysteria; and there is no one else around for whom I might perform. It is often all I am able to do. On most days, having had my medication, I have just the usual pain and aches of other 70 year old women; and as long as I am careful about the things I do and manage my energy, I function like a real person. But there are still those places where I cannot stand to be touched: the pain when touched in those places is extreme unlike any pain I have known. And those are those 18 fibro points; and they are very real. And they are very painful. Linda Traylor alert59@hotmail.com

I had been hospitalized , lost my job, and apt. etc. I took the first clerk job I could get with a 2.00 pay cut just to get some money coming in. The job was at Walgreens. I got written up by the manager supposedly because some customers complained that I did not smile enough. This happened twice in a couple months. I tried to explain that the vertical lines around my mouth were permanent, hereditary some of it, as my mom and dad had them as well as since I was in pain all the time, my face had become kind of set as I clenched my jaws all the time or sometimes gritted my teeth. ( I also have TMJ) I had NEVER been written up at any other job any where before for anything. However I was due to receive health insurance and I know they got wind of my health problems and wanted me out of there. They did not want to insure me. I quit as I had also developed nerve pain, tingling, and numb areas in my left thigh from hip to knee and could not STAND to have fabric touch the skin etc. I was also trying to work 8 hours a day, 7 days a week and I could not make it. I lasted 5 months. Total humiliation....being almost fired for not being able to fully smile because you hurt so bad. I fugured it would be better to quit than to have a firing on my record if I ever tried to work again. IF I did not have prayer and my faith....I would have nothing. You cannot be an atheist and have Fibromyalgia and the rest of it. At least I wouldn't think so! I look forward to meeting my Lord someday...pain free! I do hope that someone comes up with something for me before that.....I do still have hope! Take care....we got to just keep on keepin on! What else can we do? Petra

I WOULD LIKE TO CHALLENGE MR BERENSON TO SPEND A DAY IN MY BODY. WE ALL KNOW THAT IS IMPOSSIBLE, BUT MAYBE IF WE COULD GET SOMEONE TO STAY WITH "ALEX" FOR A DAY AND EVERY MINUTE OR SO GIVE HIM AN INDIAN BURN ON HIS LEGS, ARMS, FEET, NECK, OH HECK LETS JUST GIVE HIM A LITTLE ELECTRICAL SHOCK EACH MINUTE ALSO. THEN WE CAN FIND A WAY TO CRAMP UP HIS ARMS AND LEGS, MAKE HIM A LITTLE FUZZY IN HIS THINKING AND WHAT THE HECK LETS GIVE HIM THE WORST CASE OF BODY ACHES HE HAS EVER HAD. I IMAGINE HE WOULD SURVIVE THE 24 HOURS BUT NOW LET'S TELL HIM THAT EACH DAY FOR THE REST OF HIS LIFE WILL BE A REPLAY OF WHAT HE HAS JUST GONE THROUGH. I HAVE SUFFERED FOR YEARS EACH AND EVERY DAY WITH MORE PAIN AND DISCOMFORT THEN MOST PEOPLE WOULD EVER BE ABLE TO HANDLE, BUT EACH DAY I WAKE UP AND LIVE MY LIFE. YOU MAY NOT SEE THE EFFECTS FIBROMYALGIA HAS ON MY LIFE, BECAUSE LIKE OTHERS, I HAVE LEARNED TO LIVE WITH MY LIMITATIONS. I CHOOSE NOT TO PISS AND MOAN MY WAY THROUGH LIFE, I WOULD RATHER LIVE IT AND IF A MEDICATION COMES ALONG THAT MAY HELP ME DO JUST THAT, WHO ARE YOU "ALEX" TO DISCOURAGE ME AND MANY OTHERS FROM FINDING OUT FOR OUR SELVES IF IT WILL WORK. STICK TO WRITING ABOUT THINGS YOU KNOW RATHER THEN SPECULATING ON WHAT LIFE WITH FIBRO IS LIKE. COLLEEN CURTIS-BODNAR ROCK, MI

Patients Talk Back, Vol. 6

I have had Fibromyalgia for many years and I am NOW 42 yrs old. I have been in widespread pain all my life never knowing what I had. I have been through every test you can think of from blood tests, x rays, scans, and etc. No they don't have any tests to diagnose this illness and they go by what you go through, what you say, and how you feel everyday. There are MANY Doctors and Specialists that do not believe in these illnesses, they are the ones that need to be educated on a NEW illness out there, but this Illness has been there for many yrs they just didn't know what it was then. There is so many illnesses and diseases every day that are out there in the world and do they know what they are? No they don't! That is why there is researches going on everyday.Since when are you a medical professional anyhow? If you are in the mecial profession why are you out there looking for something to help us get better in the first place instead of writing mean columns in the New York Times about something you have NEVER experienced !! As far as I know you are just a newspaper journalist. Just close your eyes and imagine your body seizing up on you to where you can't move your body because your body feels like rigamortis while you are alive or imagine you are on fire from a extreme burning sensation, or pain that is so excruciating that you wish you only had a normal body. Just think of times where you can't even do anything but lay in bed all day because you can't move a muscle and why? because every muscle in your body hurts. I have pain 365 days out of the yr 24/7. Yes we deserve a answer to all our pain, yes we deserve something to relieve all our pain like any other illness or disease that deserves their right to feel better, whether it be Lyrica or anything else that MIGHT help us. I just turned 42 yrs old this month and I have been told my MEDICAL Doctors and Specialists that I am not able to even push a vacuum cleaner, I am not able to rake the leaves in my yard, push a lawnmower, enjoy a normal life with hard play on the weekends, and to top it all off I have been told that I can never work again on ANY job. Yes I am only 42 yrs old and you know what I would NEVER wish this upon anyone. My family and friends have watched me go through this all my entire life and never had any answers to why I have such Chronic Pain. I have the most WONDERFUL Doctor now and yes HE DOES BELIEVE IN ME and DOES BELIEVE that there is such thing as FIBROMYALGIA. There is no curefor this Illness but there is ways to help us to deal with the pain. Everyone is different with medications, some can take things and some cannot. I help run a Local Fibromyalgia/CFS/Chronic Pain Support Group in Northern Wisconsin. I hear of many that have tried Lyrica and some of the members got relief and some have not. I have even been on Lyrica and it has not worked for me. I am on NO pain killers and in fact I have been told there is nothing left for me to try because NONE of them help me! No I am NOT as YOU say a Chronic Complainer in fact My Doctors and Specialists BELIEVE I was born with this Chronic Pain. My mom has Fibromyalgia and my Brother has Fibromyalgia too and NOW I believe my son has it and he is only 17 yrs old. I have tried MANY medications and my medicine cabinet would look like a drug store IF I had kept them all and since nothing helps that means I have to deal with my pains everyday but I have come to know the use of alternative ways, herbals, juicing, & vitamin supplements, yes these help some but I still deal with my EXTREME PAIN EVERYDAY.Something out there will hopefully help me one day, but it takes money to find the right thing for me but that is something that I don't have is MONEY. Since I am not able to work anymore ( I have worked for many yrs as a workaholic in the medical field helping others) I am in the process of fighting for my right to my social security benefits but have I no answer yet and if I get denied I will fight it to the end because my Doctor said to since I am not able to work the rest of my life. i feel like my home life is very fragile because I used to be able to work FT but I am a fighter!! I will tell you I have the most supportive 17 yr old son you could ever imagine and my new husband is learning and he has been there for me all the way. We 3 pray to God in Heaven that someday there will be a cure for this Illness. This should be considered as a Disease, if you feel like you said that this is not a Disease then why does a lot of people have it? A lot of our symptoms are the same and some are not but if you get educated in this you will come to see that the majority of our symptoms are pretty much the same. I hope and pray that you will never get this illness nor any of your family will ever get this illness - maybe somewhere along the line someone in your family has it now and you might be someone that doesn't believe in it and so you write columns in the New York Times like this to show you -YOURSELF don't believe in it. We try so hard to find things out there that will help us and for people like you to run us down in the dirt because we hurt is SO WRONG!! There are so many different diseases and illnesses out there - for instance: High Blood Pressure, AIDS, Cancer, MS, Alzhemiers, Dementia, Ptsd( (a Military trama), and more and you think you have the right to run us down because we have FIBROMYALGIA? Did you write a column on those others too because you did not believe in them either? It is sad that there are people like you out there that don't believe in anything. I will pray for you for you to live a perfect life and not ever have any pain! This ILLNESS IS REAL & DEBILITATING!! It would be good if they could find us a CURE or at least something that can kill our PAIN. We need more people with FREEDOM of Speech to stand up for our rights to tell about Fibromyalgia and the many other Chronic Illnesses out there. We need a CURE just like they need a CURE for Cancer and all the other diseases out there! Thank you taking the time to read this free of speech that I have too. The Holmes Family ~ Northern Wisconsin We Support Fibro Friends!!

What is one to make of Alex Berenson whose front page N.Y. Times article insinuating that fibromyalgia doesn't really exist all but sent medicine back to the dark ages? And to think that for 18 years I've been hoodwinked into thinking I was in pain! Mr. Berenson apparently has no first-hand experience with chronic pain or he wouldn't be quite so quick to take sides with the likes of Dr. Wolfe and other doctors who have no patience dealing with a difficult but very real disease like fibromyalgia. These doctors have fragile egos and are easily disgruntled by symptoms that are not easily "fixed" by aspirin and 5 minutes of their time. The thought of actually listening to a patient and having to try several treatment options to alleviate the painful condition is just too much for these captains of compassion. I know this from first-hand experience because I have fibromyalgia, as does my daughter. In my capacity as a hospital chaplain, I participated in a very detailed seminar on fibromyalgia at our hospital and overheard the rude running commentary of the non-believing practitioners expressing their disdain for any and all silly women who have the gall to want to be treated with respect and, even worse, want relief from their daily, unrelenting pain. At the end of the seminar I revealed myself as afibromyalgia sufferer to these "gentlemen" and you should have seen their guilt-reddened faces and heard their profuse apologies. Yes, to many physicians, fibromyalgia is a joke. Those of us with FM have had the misfortune to be their patients at one time or another. They usually just suggest that it's "all in your head." How helpful. If you don't know how to treat something, just claim it doesn't exist. Problem solved. Fortunately, there are many doctors who are helpful and compassionate and actually succeed in helping their fibromyalgia patients. They realize that real symptoms require real treatment. The fact that fibromyalgia sufferers report many of the same set of symptoms only strengthens the definition of this condition, the same as Lupus, MS, arthritis or for that matter, any disease. The fact that Pfizer will make money on Lyrica should not be held against it. You would think that Lyrica is the first drug being advertised on TV. According to Mr. Berenson's logic, because we see ads on TV for Lipitor, it is proof that high cholesterol does not exist as a health problem. Despite the gloom and doom expressed by unbelievers, Lyrica is making a significant difference in the pain level of my 33 year old daughter. I intend to see my doctor and ask to give it a try. He listens to me. If he didn't, I wouldn't be his patient. I'm hoping that Lyrica may actually work, Dr. Wolfe's dismay not withstanding. (I hope he is not too upset that Bayer has made a fortune on aspirin.) Janice B. Bennett, Chaplain Round Lake Beach, IL

I am a 51 yr old women, who has been diagnosed with Fibromyalgia about two years ago. The Doctors were not sure what I had, for many years, they just knew it wasn't normal with all the symptoms of pain I was displaying. When I was diagnosed with this Fibromayalgia, I still had no idea of what it was. I did a lot of research on it, and found that it was exactly what I was going through. I have been seeing a Pain Therapist for almost 2 years now. I've just now come to grips with the whole realization this last year, of how devastating Fibromayalgia has been on me. I don't work out of my home, because I can't, anymore. I remember day after day, night after night, being in pain, it was so bad, I would just lay there and cry. I really don't know how many people are on pain killers, I've tried one drug prescribed for me, however they recalled it, so I went off of it, and haven't been back on any since. I go through this pain on my own, with only aspirin once a day. At times the pain is unbearable for me, but I suffer through it. I have a 12 year old daughter, living at home, and life has been turned up side down for us both. Many days and nights in bed, where she had to bring food to me in bed, help me walk from room to room, and at times I couldn't even let her touch me. The reason she couldn't touch me was, when someone has Fibro, just a little touch against your skin can make someone scream with pain. If you know how if feels to have a bad case of the flu, with aching, pain, and fatigue this is how life is for Fibro suffers most the time. I can be walking in the mail with my daughter, and feel as if I just got ran over by a truck, I can't walk or move any longer, I have to seat , wherever I am, and rest right there. This fatigue is just another symthm of Fibro. I now have a walker so I can walk with my daughter as much as possible. This is a real condition, and I think you should thank God you don't have it. I, as many others along with me will agree, we didn't ask for this, we don't gain anything from it, nor do we like it. But sometimes in life, you just have to deal with the cards life has dealt you. On a scale of 1 to 10 for pain, I would have to say I'm at a 4 to 5 on a daily basis. Other times, I go as high as a 10 and more. I sleep with heating pads, sometimes all over my body to relax the nerves so therefore I can relax and sleep. No one can tell me this is not real. Do a study on the Fibromyalgia family members and find your missing data there...if you can't or don't want to believe in the people who really have this awful burden. Just another Fibormayalgia sufferer Debra

have tried to convince myself that my pain and burning in my muscles plus lack of ability to sleep and process new info etc., etc., are all normal processes for years. At first I thought I was going crazy and I even told my husband at one point he needed to find a different wife to grow old with because I truely could not understand how my body and brain suddenly seemed to be failing me. I rapidly lost my ability to do my job as a bank teller and could hardly move every morning. I was lately getting hopeful for a cure. Who s Alex Berenson and would he like one day in our shoes?

Dear NYT, How could you be so irresponsible as to print any comments from one who is so stupid as to make medical decisions when he is not qualified. So much form your image as a real newspaper. Next time anyone on your staff is ill, by all means, send him or her to this idiot for treatment. In fact, why go to a medical doctor at all. There is a "witch" in Trenton, Georgia, that has hastened a few to early deaths because she thinks she can make medical decisions without a medical background for money. Buy her herbs. God forgive you all for making millions of lives more miserable than they already are. Sincerely,

2 master degrees, minor is science

http://fmscommunity.org  

Fibro and Fatigue Today newsletter

www.fibroandfatigue.com 
Fibro and Fatigue Today: January 2008

 Fibromyalgia: Is it a Real Disease? ARE YOU KIDDING ME!

 Ads for a new drug recently approved by the U.S. Food and Drug 
Administration to treat fibromyalgia are hitting the airwaves and sparking 
new debates within the medical community over the very existence of the 
disease.

 A recent article was published in the New York Times over the 
"'controversy' surrounding fibromyalgia," said Robert Baurys, 
founder of the Fibromyalgia & Fatigue Centers Inc. and Fibromyalgia 
sufferer himself. "I found it almost amusing that this kind of denial  continues in the medical community given the research and information  provided by physicians, researchers, drug companies and every expert under  the sun, we can clearly see the disease does exist."

As most of you know Fibromyalgia is characterized by muscle and joint 
pain, flu-like pain that can be severe and constant, a feeling of 
exhaustion, specific tender points, body aches and muscle stiffness. It 
can also be accompanied by irritable bowel syndrome, sleep disturbance, 
headaches, anxiety, depression and a variety of other symptoms. Many 
patients suffer with these symptoms for years before getting help.

 I was particularly taken aback by the headline on the Times piece: 
"Drug Approved: Is Disease Real?" "Is it real?" said Baurys. 
"Hmmmm, let's ask the millions of adults in this country who suffer 
the effects of fibromyalgia, or the thousands who walk through the doors 
of our Centers looking for answers and relief; better yet, ask the 
numerous national advocacy organizations comprised of folks like you and 
me if fibromyalgia is a 'real disease' and what you would learn is 
astounding."

"Many in the medical community are lagging behind and simply don't understand what fibromyalgia is and how to treat it, therefore, 'it 
doesn't exist.'
Often, patients find their concerns dismissed by 
physicians and are considered lazy or crazy. The fact is, the condition is 
very real."

 Pfizer is the firstdrug company to have an approved fibromyalgia 
medication, Lyrica, on the market. Lyrica works by reducing the extra 
"electrical" signals sent out from damaged nerves in the body. The 
Fibromyalgia and Fatigue Centers have been using the drug in conjunction 
with other treatment protocols since it was approved in summer 2007.

"There is no such thing as a miracle pill, but Lyrica is helpful in 
treating some of the symptoms". "The key isn't a 'one pill 
pop' cure, but rather treating the underlying factors which often are 
infections or conditions that must be treated in other ways for full 
recovery. Lyrica was designed to be used in combination with other 
treatments so that all of the underlying issues are resolved. Used in this 
way, it provides optimal results."

"Treatment requires an extensive knowledge of the specialized field and 
focus on the underlying causes rather than just the symptoms," said 
Baurys. "Tremendous advances have been made in the understanding and 
treatment of this disease. Successful treatment requires a comprehensive 
approach, determination by the patient, and support by those in their 
lives. It's our goal to develop individual treatment plans that lead to 
significant change and positive outcomes for our patients."

 Sadly, there is so much garbage and gimmicks out there that it can be 
difficult for the uneducated public to decipher what's real and
what's not. "So, kudos to the American College of Rheumatology, the
FDA, Pfizer, advocacy groups, treatment facilities and those physicians 
who care enough to research the answers."

 Either we are all crazy and lazy or indeed, fibromyalgia is coming to the 
forefront.

 To read more about the NY Times article click on the link below:
 http://www.nytimes.com/2008/01/14/health/14pain.html?_r=1&oref=slogin

* * *

This is the same problem faced with CFS: there is scads of research proving that it's real, but doctors who haven't read the research don't know that.  It's easier for them to blame the patient, call her "lazy" or "crazy" than to find time to read the research and find out what treatment does work.

Don't waste your time trying to educate doctors who tell you your CFS or fibro is all in your head.  I've tried and they won't listen.  Don't make the mistake I did of thinking that if you try every anti-depressant under the sun you will eventually prove to them that anti-depressants don't work and they will agree to give you what you tell them will work -- as a result of all that wasted time, I'm told I deteriorated too far and will never work full-time again.  All because the doctors didn't know what they were doing and were totally uninterested in learning from a patient who knew more about CFS than they did. 

As Dr. Yunus says, "it's not the patients who are disturbed, it's the physicians who are psychologically disturbed, because they ignore the data."  It may be easier to diagnose "lazy" or "crazy", but it is unethical.  Doctors are supposed to "first, do no harm"; they do a great deal of harm when they allow a patient to suffer needlessly and get sicker due to their ignorance of the correct treatment and denial that a documented condition exists.

Monday, January 21, 2008

Teaching Cynicism and Arrogance along with Medicine

http://www.sacbee.com/107/story/643277.html

Inside Medicine: An Unfortunate Part of Learning Medicine By Dr. Michael Wilkes -

Every medical school has a formal school curriculum that is geared toward ensuring that students can pass their national exams and become licensed doctors. Training geared toward passing exams is a relatively easy task given that we accept highly intelligent students with proven track records in academics.

However, every medical school also has a hidden, or untaught, curriculum that is not written at a Web site or in any catalog, and about which the faculty is largely unaware. Many researchers who have studied medical education observe that students come to medical school with a strong sense of social-mindedness, altruism and community service.

However, the researchers observe that for some students, interest in the patient, altruism, and social awareness decline as the student advances in the studies. Some refer to this as cynicism, selfishness or arrogance.

As an American Association of Medical Colleges publication points out, the final year of medical school is when students reach a pinnacle of cynicism – becoming even more cynical than residents or faculty members.

This is not the fault of our formal courses or the printed curriculum. Our lectures and discussions strongly emphasize ethics, professionalism and issues related to respecting and understanding the patient as an independent decision-maker. But the influence of coursework pales compared with the power of the untaught curriculum – the influence of exposing students to what we actually do with patients and colleagues rather than what we say we should do.

For medical students, the most powerful influence on their learning, and in shaping behaviors and attitudes, comes from observing residents and faculty members in their practices.

We can teach extensively about the appropriateness of respecting different cultures, different beliefs and different health practices, but when thestudent hears a resident dissing a patient's mistaken notions of disease, or hears them making fun of a patient's body, the lesson is clear – to be a part of the "club," this is the expected behavior.

Students are extremely observant. They see us ignoring patients who don't speak our language, not entering the room of the patient who has a terminal prognosis, not offering to help the overworked nurse who is trying to answer three patient call buttons at the same time, poking fun at other medical specialties, and minimizing the time spent with a person who belongs to a social group we don't like.

Residing, as medical students do, at the bottom of a strictly defined hierarchy, their goal is to excel and fit in to their surroundings. They watch the doctor's every move – where we stand when we are in the operating room or at a patient's bedside, what we wear, how we talk about our family life, what we drive, and how we treat staff members with whom we work.

After all, students are graded subjectively on their clinical performance, which includes how they behave and interact with the doctors. A heavy part of medical school is being socialized to be a doctor.

Given that there is a strong social drive – and academic need – to belong to the group, be it with surgeons, psychiatrists, pediatricians or the like, it is not surprising that students model the behaviors they see.

For some, these behaviors learned from observation slowly get incorporated into how they will act when they complete their training. Other students can turn their behaviors off as soon as they leave that course or clinic. Still others don't alter their beliefs – they perceive the medical teaching environment as cynical for teaching students one thing in the classroom and quite another in the clinics and hospital.

Unfortunately, these last students often are subject to grade retaliation for not "working to fit in with the team" or for "disagreeing and confronting a resident or other senior member of the team."

Perhaps the lesson for us all – doctors, students and the public – is that our behavior is watched, and that those around us can learn important unintended lessons by what we do, rather than what we say.

About the writer:
  • Michael Wilkes, M.D., is a professor of medicine at the University of California, Davis. Identifying characteristics of patients mentioned in his column are changed to protect their confidentiality. Reach him at drwilkes@sacbee.com.