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.
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