As the president of an all volunteer national Lyme disease patient group, I read your article on Lyme treating physicians being profiteers at the expense of Lyme disease patients with dismay and disbelief.
Not only have you done a disservice to those doctors courageous enough to treat this political disease, but you have also done an injustice to patients, an injustice which could cost them their life saving treatment.
If you are wondering how that is possible, it is indicative of the lack of homework your reporter has done on Lyme disease, the most prevalent vector-borne disease in this country. You have allowed your publication to be sucked up into the unsettled science, the politics, and the vested interest of Lyme, yet you have not explored any of those areas enough to understand the issue at all.
If Mr. Whalen had done his job, he would have realized that medical societies that hold the interests of their patients paramount do not wage war against patients. When they do, society should ask why.
He would have presented how the doctors he portrays as the experts and the underdogs could have a huge vested interest in the disease, and how these same physicians are primarily researchers who have relatively minimal experience with Lyme disease patients.
In fact, they do not believe in chronic Lyme disease, so certainly they cannot be experts in that area. Coming from that perspective, they have formed a closed club of like-minded individuals who have banded together to shut down all patient treatment for this seriously debilitating disease.
How do they do that by excluding input from all who are stakeholders in the process, the patients, treating physicians, even their own infectious disease colleagues who disagree with them.
The IDSA contends that its recommendations are not binding on physicians. This is simply not true. If the IDSA had wanted it guidelines not to be binding it would have acknowledged that different treatment options exist and deferred to the clinical discretion of the treating physician.
However, this group of researchers has the arrogance to presume that neither patients nor their treating physicians are competent to make medical decisions. Restrictive guidelines like the IDSA's play right into the hands of insurers and government agencies that do not want patients to get treatment because it is too costly for CMS (Centers for Medicare and Medicaid Services).
With Forbes blessing, the restrictive IDSA Guidelines that are signaling a death knoll now for Lyme disease patients, will tomorrow become the guidelines that signal the death knoll for patients with other difficult to diagnose diseases.
Forbes ignorant sensationalism of the Lyme disease issue is a sad commentary on the dissolution of once ethical media that has chosen to align itself with medical entities driven by vested interest and to splatter mud to increase its sales at the expense of tens of thousands of sick patients is a cheap trick more suited to a supermarket tabloid than once reputable Forbes.
Pat Smith President Lyme Disease Association, Inc. PO Box 1438 Jackson, NJ 08527 888-366-6611 Toll free info line 732-938-7215 (F) LymeDiseaseAssociation.org
Posts: 8337 | From the other shore | Registered: Jul 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
All of these letters.. which I've reread twice now.. are just so good!!!!
You guys have a deeper understanding of Lyme issues and are smarter than most of the medical profession!
I was actually intimidated when I saw your letters and didn't want to post mine!! That brings me to the point.
Just because they say you can use 500 words.. you certainly don't have to use them all.
A short, one line... or one paragraph letter is often better then the Tincup style- you know- long and drawn out.
Their letter is so FULL of stuff it is hard to focus on what direction to go. Hence, I did 4 letters so far... addressing a number of things.
And don't forget to get family and friends to chip in and help. THEY have seen what you have been through.. so ask them to help you.. and all of us in return.
If anyone is on chronic fatigue boards or fibro boards.. they may want to respond... as they were kicked too.
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Michelle said..
"Tincup, go ON with your bad self!"
HA! YOU are a funny one! You got me laughing this morning. THANKS!
posted
Here is my personal letter I'm mailing to Mr. Steve Forbes. I'm also e-mailing a short response under 500 words. I'm the mother of Kalyn Faggart. I was basically told by NC Medical Board to take my daughter home and let her go blind when I approached them for a waiver of the limitations they have placed on one of her treating physicians. You guys have written some great letters. It's nice to see so many people with this much knowledge about this disease and the politics of it. I'm currently pushing Kalyn's case into court following the denial by the Board. In the meantime, I'm taking her out of the state for treatment.
February 28, 2007
Mr. Steve Forbes 60 5th Avenue New York, NY 10011-8868
Dear Mr. Forbes,
As a parent of a teenager who is afflicted with the horrendous tick-borne disease of Lyme, I'm writing you to express my total disgust for Mr. Whelan's article entitled Lyme, Inc. Mr. Whelan has taken irresponsible journalism to new heights. Congratulations! Maybe he can now advance his career to a more suited line of work--that of supermarket tabloid reporter. He is an absolute disgrace to a magazine of Forbes stature.
What is more upsetting is the fact that Mr. Whelan was in personal contact with people who provided him with factual information which would have allowed him to present both sides of the Lyme debate. Instead he chose to take untruthful pot shots at the courageous physicians who dare (for the sake of their patients) to treat this politically controversial disease.
My fifteen-year-old is suffering from Lyme disease. My own state's Medical Board has chosen to adopt the controversial IDSA guidelines, which are currently under investigation, as the standard of care for Lyme patients. What that has meant for my daughter is that even though her treatment was working, once she reached the time limit set by the Board she was forced to stop in spite of the fact she was not completely well. For her this will mean definite blindness. I even approached the Medical Board asking for a waiver in her case alone and was denied. Yes, I said denied! I was basically told to take my daughter home and let her go blind. Do you find this hard to believe? Then I urge you to do what your journalist, Mr. Whelan, failed miserably to do, research the facts. I submitted letters from two other treating physicians, ophthalmologist and neurologist, asking for her treatment, which has been the only effective method of treating the Lyme Papillitis, be resumed. Also included were ten case studies on Lyme Papillitis from the Pediatric Journal of Medicine proving this form of treatment to be effective in eight of the ten cases. The Medical Board arrogantly ignored all requests, medical records along with supporting evidence for continued treatment and sentenced her to a world of darkness for the rest of her life based on the controversial IDSA guidelines.
Not willing to accept this sentence I have chosen to take her out of state to another physician who can effectively treat Lyme Papillitis and she is responding beautifully. Thank God for physicians who are courageous and care enough about their patients to take on this fight even when faced with the type of persecution handed out by Mr. Whelan and Forbes magazine.
Another family member contracted Lyme disease six years ago and was not diagnosed until two years after the onset despite the fact that a tick was removed and immediate flu-like symptoms were present. This was followed by joint pain and muscle deterioration that even the specialists at well-known medical teaching institutions could not explain. However, when asked about the prospect of Lyme, all said Lyme was not prevalent in NC therefore it couldn't be Lyme. Two years later this family member was treated successfully by a local ID physician for Lyme disease. Following long-term IV treatment and oral antibiotic treatment, he now enjoys a normal healthy life once again. He has been completely well for over two years now without a relapse and with no further medication.
He was allowed treatment that my daughter is now being refused by our state. He received the chance to regain his health while she has been sentenced to blindness.
Why did your magazine not investigate such issues as my daughter's case? Where were the interviews of people who have experienced a full recovery as a result of effective diagnosis and treatment? Why is there such a controversy over Lyme disease within the medical community? Why are patients forced to suffer and literally fight the medical community for their care? Why do they then have to pay out of pocket for the treatment required if they are lucky enough to find a Lyme literate physician? Why are physicians with a huge vested interest in the disease and who are primarily researchers who have had relatively little experience with Lyme disease patients allowed to ``set the standard of care''? How are they able to set these standards by excluding input from all who are stakeholders in the process, the patients, treating physicians, even their own ID colleagues who disagree with them? These are all questions that I have been adamantly searching for answers to.
The IDSA also contends that their recommendations are not binding to physicians. However, from my daughter's case one can easily see that they are definitely binding when Medical Boards choose to adhere to their ``voluntary'' guidelines as absolute scientific fact and punish physician's who violate these ``voluntary'' guidelines by suspending their license.
Articles such as the one your reporter, Mr. Whelan, has published serve no purpose but to inflict more harm on the thousands of suffering patients by insuring they have an even tougher fight to get proper diagnosis and treatment. If Mr. Whelan truly believes there is no problem with diagnosis and treatment of Lyme disease and that the IDSA standards are correct, then I invite him to come spend some time on my forty acres of wooded property in NC and play with some of the many deer and deer tick that roam the woods. I have plenty to go around as two members of my family have already contracted the disease from this very property where Lyme is NOT ENDEMIC! I'll gladly share with him! Maybe then, he would have a well-rounded picture of what Lyme really is and would be much less inclined to print such biased garbage in his future articles.
Forbes should be ashamed for lowering itself to this level of irresponsible journalism. One can only assume that the level of irresponsibility exhibited in this article is reflective of every article Forbes prints. If that is the case, there is no use for me to ever pick up the trusted Forbes magazine again. I will definitely by-pass Forbes in future visits to the newsstand unless Forbes takes efforts immediately to correct the falsehoods presented as truth in this article. I would hope that a more rounded, factually correct, informative article will be forthcoming in the next issue. It will take a lot to undo the damage your magazine article has caused to patients such as my daughter who are the collateral damage in this Lyme War and courageous physicians who dare treat this disease.
Sincerely,
Posts: 1 | From North Carolina | Registered: Feb 2007
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bettyg
Unregistered
posted
welcome kalyn's mom to the board. OUTSTANDING LETTER TO STEVE FORBES! SO GLAD YOU JOINED US.
other letters sent to forbes are scattered here on medical, support, & ACTIVISM.
i just sent you my 45 pages newbie links/advise by private message, PM, to help you and perhaps use some of the valuable links from me and TREEPATROL'S NEWBIE ARCHIVE of over 1000 links for your court case! good luck from us all!
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posted
These letters gave me chills and made me cry. They were all so well written. Just wonderful!!Thank you for taking the time to write.
Posts: 263 | From Georgia | Registered: Feb 2006
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Thank you for your classic example of yellow journalism as appears in Mr. Whelan's article: Lyme, Inc. His statement that Lyme disease docs are parasites living off patients is completely untrue, and his understanding of Lyme disease is incomplete and erroneous.
The Center for Disease Control recognizes that Lyme disease is a very real illness.
Once it is established in the body due to inadequate or inappropriate treatment, Lyme disease is both difficult to treat and difficult to live with. It can affect many parts and systems of the body.
A few brave doctors care enough to venture into this field, in spite of the disease's multi-systemic nature, and lack of effective standard treatment guidelines. A wealth of knowledge is required to effectively treat Lyme disease.
Most Lyme doctors spend over an hour with their patients due to the many difficulties this disease presents. This is four times the amount of time that the standard mainstream physician spends on a patient. Lyme doctors are not rich...,although most surely would be if they would drop their Lyme patients and only practice their specialty, be it General Practice, Internal Medicine, Infectious Disease, etc.
I personally regained my health only through the talent of my LLMD. This happened after seeing over a dozen ``mainstream'' doctors who were unable to help me. It took over two months of the IV antibiotics (that Mr. Whelan disdains), and several years of combined oral antibiotics, but, I am currently in the best of health, thanks to my knowledgeable and courageous Lyme doctor.
As a professional researcher, myself, I am surprised and disturbed at the blatant, biased sensationalism Mr. Whelan presents as journalism
Yellow journalism is not only unprofessional; it is a danger to the public!
~Spotted OK,OK, I didn't really let the pony sign it...............
Posts: 72 | From Loudoun county, VA | Registered: Dec 2003
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posted
I think someone posted about the insulting statement in the article that Chronic Lyme, Chronic Fatigue and Fibromyalgia are "psychosomatic". Functional somatic syndrome is not the same:
Just to clarify...
The functional somatic syndromes comprise a large group of symptom-based disorders that are poorly understood and inadequately treated. Nevertheless, they have a major impact on the health-related quality of life of affected patients. These disorders include (but are not limited to) fibromyalgia, myofascial pain syndromes, chronic headaches, temporomandibular disorder, chronic fatigue syndrome, irritable bowel syndrome (IBS), interstitial cystitis and pelvic pain syndromes. Reliable and specific biological disease markers to assist in diagnosis have not yet been identified.
Still an upsetting article, but this makes me feel a microscopic shred better.
Posts: 38 | From behind the definitions | Registered: Sep 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
GREAT letter Kalyns Mom- my daughter has been in full remission for over 5 years+ due to longterm abx and yours deserves to be- get her to a good LLMD- I know you had one- but what a shame you are made to travel for care on top of all the rest she faces- a true shame-
Welcome to the board- Best wishes, Sarah from CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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