To: The New York Times
From: The FMS Community.org 501(3) and members.
The recent article by Alex Berenson has generated widespread interest among those living with chronic pain. The article did present some valid medical facts and we defend Mr. Berensons' right to free speech. However, we believe that free speech should be tempered with caution when you hold a position such as Mr. Berenson, who has the ear of many trusted readers. As a journalist Mr. Berenson has the responsibilty of presenting the facts in a non-biased manner. Instead this article leads the reader to a forgone conclusion decided by the author. He is not a medical professional, nor is he a chronic pain patient. He spoke to very small amount of people with their own agenda to gather his facts and then presented them as if it was the view of the masses. Shame on the Times for running this piece without offering both sides of the issue. If taken to heart by medical professionals this piece could set health care for those with chronic pain back years. We have fought long and hard for acceptance by the medical profession and for valuable research funds. There will always be a small sector of any population who will abuse a diagnosis, not work towards their own recovery and use a condition as an excuse not to work. But the majority of people with Fibromyalgia are hard working people with many hobbies used to hard work and a social life. They would give anything to regain the ability to work a long week and then play hard on the weekend. We are mothers, fathers, aunts, uncles, grandparents. We could be your sister or brother, perhaps a loved childhood friend. We are people who want the pain and fatigue to go away so we can work and pursue the things we love. While the FMS Community does not condone the idea of bestowing a life with Fibromyalgia on Mr. Berenson, we hope you understand why many of our readers wish he could walk a mile in our shoes. In protest we ran your article in our monthly newsletter, giving full credit to the NY Times and Mr. Berenson, here are the responses our readers wanted you to see.
Imagine having the Honk Kong flue 24/7. Imagine being in so much systemic, physical pain that your body goes into a full on siezure because it can' handle the onslaught of a disease that causes pain receptors to go into overload. Imagine not being able to lift your child when he/she cries, or the simple act of having your husband or wife touch you because the pain is so horrendous, it's impossible to get near you. Imagine the hospital and doctor bills ruining you financially, and the loss of family and friends, marriages, and jobs. Imagine loosing everything because of a disease that literally robs you of the ability to live a normal life . . . and then imagine that no one believes you . . . oh wait, we don't have to imagine it. It's very real and it is chronic. It is a lifelong disease that has changed the course of many a productive life, including my own. I was diagnosed with Fibromyalgia in 1990. I invite this doctor who is still living in the dark ages to talk to those of us who have had to deal with his kind of mentality for 20 plus years and longer. Fibromyalgia is now an epidemic and please, he and his kind can pat themselves on the back for that. Fibromyalgia mimics much of the symptoms of Multiplesclerosis, yet we are treated as if we are attention/drug seeking individuals and we are shamed into isolation. This disease is nuerological/immunological in nature and we treat it like arthritis. It is not even in that category. The quality of our lives have been devastated and it has taken nearly 30 years since FM was first noticed, for the medical community to even begin to acknowledge its existence. We have an even larger problem now because we are bombarded with "snake oil" remedies and the pharmaceutical companies that make a fortune coming up with myopic drugs they tout to be effective, yet the very nature of some of their side effects closely resemble symptoms of renal failure. Most of these drugs are so expensive no one can afford them and a large number of our population have been forced into poverty can't possibly pay for them. Fibromyalgia is a very real and pervasive disease and it has ruptured the fabric of many lives. I encourage all who want the truth to research this disease and then make an informed judgement based on the experiences of doctors and patients alike who are comitted to educating the public on this very real disease. Rayn Cumiskey
People who have suffered (YES, the key word to this condition IS suffering!) from this condition do NOT need people like this making light of a terrible health crisis that is affecting millions of people around the globe, & trying to make us all look like a bunch of psycsomatics to say the least. He is doing a TERRIBLE disservice to those of us whose lives have been reduced to rubble thanks to THIS! Just when scientists are finally starting to acknowledge how REAL & DEBILITATING this is, & drs. as well who never believed us, along comes someone like Berenson who takes away our credibility! HOW DARE someone who is healthy be allowed to do something SO HURTFUL to allllll of us whose lives are being devastated by something so misunderstood!!! I know, nobody can understand anything until you walk in their shoes, & this is a prime example of just HOW true that is, but he had a huge forum writing for the N.Y.Times & managed to completely disregard us as human beings, let alone SICK ones who have finally begun to find SOME HOPE in dealing with this never ending pain, exhaustion, weakness, brain fog & any & all of the other horrible symptoms all of us suffer from on a daily basis! The joke among all of us who hear about people who don't believe this is real is: "IF we could breathe on them to give it to them, they would ALL have it!. I hope you don't consider this too unsuitable to send, because I know all of us feel exactly that way, even though we wouldn't want to see anyone have to suffer as we do on a daily basis. THAT would be the only way someone could truly understand where we "come from" trying to make it through life on a daily basis as best as we can. We are ALL VERY strong people who have to endure feeling horrible on a daily basis, & the key word daily is HOW horrible we will feel as to whether one day is better than the other. Let's hope that Berenson will realize when he gets all of our comments that he needed to reserve his opinions to himself & NOT give himself the opportunity to bash all of us people who can only hope that someday SOON, there will be relief for ALL of us people who never asked or deserved to have something ruling & ruining our lives as this has done to all of us! THANK YOU again for giving all of us the opportunity to set the record straight, & I am SO glad so many people responded to the terrible negativity in that story! Sincerely, D. Tevlin
I find it amazing that one person can act like the suffering of millions doesn't exist and that Pfizer is only saying It does to make money. Personally I don't care how much Pfizer makes on Lyrica, if it helps us. They are in the business to make money, they aren't philanthropic. I am 60 yrs old, and have had this syndrome since I was a child, so there goes several of his erroneous comments, I wasn't middle aged, and Pfizer didn't give it to me nor did the doctors who named it. A child cannot dream up this syndrome to suffer from. Actually, for a long time I thought everyone had pain like I did. Also, since it was given the name fibromyalgia 15 yrs ago, I had it long before it had a name. Of course aspirin won't help us, since its not an inflammation, what a brilliant man he is. When I was younger I used to say I wouldn't wish this disease on my worst enemy. Of recent years, I have a list of those who I would wish a months worth on, The doctors who tried to make me feel badly by being ignorant, the DEA and their "war on drugs" that has more innocent casualties then Iraq, and now this man who thinks he knows what he's talking about. I feel that the Times should not have published this article without first considering the damage it was doing. I realize the point was that Pfizer stockholders are getting rich, but in doing this he publicly laughed at our suffering. We have enough problems with doctors and families taking us seriously without his misguided help. I have my issues with the newest Lyrica ad where she is reading her journal entry. I challenge Pfizer to find any journal written by a true fibromite that is worded so nicely, and without a few four letter words. Paulette DiPiazza Spotsylvania, VA
I am a 62 year old lady who has suffered with fibromyalgia for approximately 22 years. I would like to tell Alex Berenson and his article, a few things that this disease does to ones life. I was in a serious accident almost lost my life, had several operations to put my face back on, had cancer and my husband left me with two children to raise. I worked several jobs to keep my children with food and clothing. After, several years of this I began to hurt throughout my whole body and nobody knew what was wrong with me. I've had two back surgeries ,one being a fusion and almost died from staff infection because our immune system can't fight off these type of things like normal people, who can stand pain, who don't complain do. As the years went by each year getting worse with more stabbing, burining,steady pain throughout my entire body. I kept trying to work until when I came home at night I would sit in the car and cry until my husband came and got me out. I would go in the bed and stay there until morning and then do the same thing day in and out. Yes, we think we are crazy and have depression, anxiety, and all the things Mr. Berenson described. So after years of pain we get a doctor who cares and finally tells us we aren't crazy we have fibromyalgia and there are alot of people who suffer with this we find out. I would like Mr. Alex Berenson to live in my body for 24 hours with no meds and tell me then if its all in my head. He would be begging for help for the pain. We live for years before we go on meds hoping that there will be someone who will help us. Now we have a name but no help. Yes, we try all drugs because when we wake up and our feet hit the floor, we scream inside , does he know how that feels in a everyday morning rountine we struggle through. I don't think so. I feel like unless you've lived in our bodies and hurt from the time you wake up and until you shut your eyes, that is if the pain will let you get sleep for 22 years you had better not complain about a headache or the flu because it doesn't even touch the edge of what we live through. Living under a cloud, yes, we do a black cloud that doesn't leave us alone for a minute of our lifes and gets worse ever waking hour. Thank God for the Dr's who understand us and try to help us with meds. That is our only hope that someone will find a medicine that will give us a few minutes, a hour, or maybe a day that we can smile and say our pain level is better today. I am sure there are alot of us who would trade, if not all of us with Alex Berenson for a day or until he begs for his life back because he obsess's over pain and the symtons it brings to us. Well, here's one gal that's not 5'2" and overweight with fibermyalgia or whatever the medical association decides to name it, that would like to give mine to Mr. Alex Berenson my fibermyalgia. Sincerely, Mandy Darbe Chattanooga, Tn.
The article by Alex Berenson on Fibromyalgia is based on hearsay and opinion, not on scientific data. I am shocked that the New York Times would publish such poor journalism. This 'report' is not balanced. It is the responsibility of the Times to publish an article on the current research findings by fibromyalgia experts. For example, fibromyalgia patients show elevated glutamate and substance P in spinal fluid. Also, heart-rate variability studies show that FMS patients have abnormal studies, indicating dysfunction of the autonomic nervous system. There is a wealth of research data, and Mr. Berenson did not present ANY of it.
I hope that none of the author Berenson's relatives ever experience the symptoms of Fibromyalgia. How tragic would it be not to have a support system. We need the people around us to be understanding and believe that what we feel is real. Without the support of my husband and family, I am not sure how I would get through each day. How dare he suggest that the pain I feel is from being diagnosed, I do not obsess over my symptoms. I was relieved to find out why I had the symptoms, it did not make the pain worse, nor did it consume my life. I use antidepressants, inflammation meds and a pain pill as needed. I do home therapy using stretching and strengthening exercising. I feel like I am in control of my illness, I do not spend any more time with my doctor then I used to. I am not a hypochondriac! I am not sure what Alex Berenson has against Fibromyalgia, maybe he needs an unexplained pain to take his mind off his self-righteousness. Thank you to Lynne Matallana for running the National Fibromylagia Association, the newsletters are very informative and are full of tips to help us live with our disease! Sincerely, Deb Link link@westriv.com
I read your article with great interest since I suffer great pain from that illness. Since childhood, I've had events of illness lasting longer than any influenza should but with very similar symptoms. Thankfully, these bouts would end and my life would continue like anyone else's. I married, had children and had a career I loved. After years as a hobby gardener I trained as a florist and looked forward to going to work each day unless I was again visited by my mystery illness. As the years passed the events seemed to come closer together and last longer until I seldom felt well and pain free. I continued to go downhill until I was in so much pain I couldn't even walk and was pushed in a wheel chair by family members if I went out of my house. After many visits with many doctors, I was diagnosed with Fibromyalgia at the University of Kansas Hospital and Medical School in Kansas City, KS. The diagnosis was made based on my extreme response when Fibromyalgia Tender Points on my body were pressed. Pressing on other places did not elicit the same response. I was treated with some older anti-depressants and although they made me sleep a lot, they didn't affect the pain level I experienced daily. After seeing a Rheumatalogist, Dr. Letournea in Topeka, I was put on a combination of Ultram and Ibuprofen and within three days I was out of the chair and ready to go back to work. That medication combination worked for me for several years but then it seemed to have lost it's effectiveness and I was once again struggling with daily activities. At that time, the Cox II inhibitors were introduced and I began to take Vioxx with wonderful results. I took a computer course and set out to find a new job, not quite so physical and I did. Under treatment with Vioxx I was even able to take a long planned trip to Ireland and Scotland. I felt like I was once again my old type A personality and I had a tiger by the tail. That worked for several years but then, on a routine visit to see my family practitioner, she pointed out to me that my blood pressure had risen higher each time I had a visit to the Dr and was now at a very dangerous level. She said that she had heard some rumors that Vioxx was doing that to people and that I had to get off of it because I was at risk of stroke. She refused to prescribe it anymore and my health took another downward spiral. Even with the Ultram and Ibuprofen I was in such pain and so fatigued that working was out of the question. Since no alternative seemed to work for me, and I was quickly running out of options, I applied for Disability through Social Security. At the first round I was refused but by the second round I'd deteriorated to the point that anyone could see that I was very ill and my case was approved and I retired at the age of 59. As to Dr Wolf, he and I are both living in Kansas. I'm in Topeka and he's in Wichita. At one point in searching for help early on in my illness I was referred to him for treatment by the Dr who diagnosed the Fibromyalgia. He was on the staff of University of Kansas at Wichita. At that time he was touting himself as THE fibromyalgia specialist in the Mid-West. He left KU, and built himself a clinic in the shape of a pyramid and began trying to heal illnesses by the power of the pyramid. Of course, no one got well so he decided that we all must been faking our illness or the pyramid would have worked. He is a fool and a charlatan and not someone who should ever be quoted in a serious discussion about Fibromyalgia although he is on a regular basis. He is the only Dr who I've ever heard that holds that opinion and he is very vocal in that misguided opinion. After the Vioxx scare, I'm not quite so quick to put another substance in my body as I was with Vioxx. I think I will just wait awhile and see what kind of results are obtained and what the side effects turn out to be but I will say that I would take the Vioxx again in a minute. I'd love to have another chance at pain free living and would take it full well knowing it couldend my life. With me, the quality of life has always been more important than quantity. I'd love to get up in the morning and dress for work. I'd love to be out in the world interacting with people and earning twice what Social Security benefits allow me. I'd love to travel to other places I'd planned to see one day. Maybe Lyrica will be the drug that will give me back my life. I'm watching to see. Gayla Templeton Topeka, Kansas
I can only respond as a person who has suffered from Fibromyalgia since 1991 and has done everything possible to care for myself, follow my Dr.s advice and keep a positive outlook at all times. For someone who believes this disease does not exist, I can only hope he contracts it some day so he can discover how real it is. Thank God there are medical professionals who do believe in the disease and continue their research to find solutions for each of us. For me, I was going downhill and had to take a medical leave of absence. During that time, I found a wonderful treatment "team" who has worked together and I am now improved dramatically and back to work full time which was my goal. The insinuation that we are overweight, lazy hypochondriacs is what has kept this disease from getting the focus and research it deserves. Shame on him for presenting himself as an expert, much less a professional. Carol L. Thomas
mr. alex berenson.... God did not put u on this earth to judge us (fibro sufferers). i kindly ask u to not critize me and any of the other human beings suffering w/this horrible disease. if u have never experienced this malady i am so happy for u!! but please don't criticize any of us unless u have walked in our shoes. deal? in 1988 my internist blew it off as arthritis. wonder what he thinks of it now? just hold ur tongue (or fingers in this case) until u r a little more familiar with it. it can really knock u on ur tush sometimes!! off to bed u go, armed with rx's u have been given to help and it takes time to get thru that. oh....heating pads and electric blankets also help bunches. thank u so much for taking the time to read this and other letters in re: to fibro take care, be safe and don't get too cold!! u can always come to phoenix for R&R bring ur family and enjoy our winter. have a wonderful and blessed week. yours truly.................judi rhodes
Hi, I am 57 yrs old and have been living with chronic pain since I was 21. All the Drs. I saw insisted that there was something wrong, but couldn'tsay what. I was told I had everything in the book but could be helped by no one at all. Finally I found a rheumotologist in NYC who said I had non-specific vasculitis, even though a biopsy turned out negative. At Mt. Sinai hosp in NY the interns drew the spots where my paid was with marker-trying to understand where and why it was there. I was treated me with steroids (which did no good) and other very dangerous medications like cytoxin and immuran. Nothing helped. The only thing that gave me any relief was plasma Pherisis (a blood transference procedure) that I went through every 2 weeks for 8 yrs. At one point in time I was on 125 mgs on prednisone (because I was told it would keep the disease from getting worse and effecting my organs) and percocet around the clock with no relief at all. A chance in climate helped immensely and I was able to get off most of the paid medication I was on, but the condition kept getting worse. I developed IBS (probably from all the pain medication) and Chronic fatigue (which may or may not be from living with chronic pain for so many years) In the 90 ?s I was finally diagnosed with fibromyalgia. I finally had a name and some camaraderie with others who for years had no idea what was wrong with them. But the public wasn ?t convinced. My eldest son was in college at the time and mentioned it to his fitness teacher who insisted it was a disease of laziness and exercise would cure me. I wonder if you have any idea how much it hurts when your 18 yr old is convinced your making yourself sick because you ?re lazy? Now this article has stated fm doesn ?t exist ? How much more do we with this disease have to put up with from the medical professionals who are supposed to help us? Mar
To whom it may concern, In August of 2001, I had been diagnosed with numerous health issues one of which was Fibromyalgia. The constant debilitating pain effectively ended my working career at the ripe old age of forty-one. After reading the article in the New York Times titled "Drug Approved. Is Disease Real?", I became outraged by Dr. Frederick Wolfe's statements that I immediately wondered who pressured or paid him to recant his earlier diagnostic guidelines associated with Fibromyalgia. Could it be the health insurance companies not wishing to pay claims of the millions suffering from the disease? Did Dr. Wolfe considered the possibility that depression, social anxiety and the economic anxiety that comes from losing ones ability to earn a living are by-products of the disease rather than the cause? His words are spoken like any other who has never had the displeasure of living with this sort of pain. How much pain does this man consider normal? How can he deny the disease or a biological cause when brain scans show differences in the way Fibromyalgia sufferers process pain? Why would our brains process pain differently if there was no such cause or disease? I agree there is a certain amount of pain and discomfort associated with the natural aging process, but the constant varying degrees of pain that I have to live with on a daily basis goes far beyond anything considered normal at any age. It is not normal to be in so much pain that you can't sleep, lie, sit, stand or perform daily activities without hurting. It is not normal to be in so much pain that you can't bare to have clothes or human hands touch your body. And...it is not normal to be in so much pain that it makes one crazy enough to consider the relief that suicide would bring. I wish this man could experience for one year, first hand the pain Fibromyalgia suffers have to endure for a lifetime, then come back and give us his professional opinion as to whether or not the disease exists. Theresa M. Obrecht Farwell, Michigan
No comments:
Post a Comment