Last week I wrote a post on the NY Time Article, Drug Approved. Is Disease Real? that was frustrating and upsetting many Fibromyalgia patients.
Well, it appears the article did more than frustrate andupset FM patients. It also drew responses from physicians, researchers, and scientists. The Fibromyalgia Network says on their website that they have been hit with calls and emails from upset patients since the front-page article appeared on January 14th.
The FM Network went on to say that patients feel that the article’s headline stirs up controversy that has not existed for quite some time over FM. The FM Network continues to say,
Statements such as, “diagnosing the condition actually worsens the suffering by causing patients to obsess over their aches that other people simply tolerate,” strike a blow against the progress made in the field and belittles patients by questioning the validity of the illness.
Here are some of the responses received by doctors and PhDs:
Daniel Clauw, M.D.
Professor of Medicine in the Division of Rheumatology
Director of the Chronic Pain and Fatigue Research Center
University of Michigan in Ann Arbor
Unfortunately Drs. Wolfe, Hadler, and Ehrlich have been saying the same thing for 20 years. When they began making these pejorative and uninformed comments about fibromyalgia and the people who suffer from it, they could be “excused” for these comments because there were very few scientific studies regarding fibromyalgia.
We now know that the statements these doctors made are actually false. Data show that after being diagnosed with fibromyalgia, people feel better, and their health care utilization goes down, likely because they no longer have to keep searching for what is wrong with them.
However, we must all realize that we will never convince the Wolfe’s, Hadler’s and Ehrlich’s of the world that fibromyalgia is a legitimate disease by using scientific data. Scientists develop hypothesis, test them, and then discard them if they are found not to be true. These three doctors had formerly been scientists, but are not approaching fibromyalgia as such. They have firmly held personal beliefs that will never change despite overwhelming scientific data. Patients should do their best to not focus on the fact that the glass is seven-eights empty to these three doctors. To the majority of health care providers in the U.S. the glass is becoming half full. They feel this is a real disease and they are beginning to learn how to treat it. We continue to make tremendous scientific advances in the study of pain and fibromyalgia, and even more effective treatments are just around the corner.
Roland Staud, M.D.
Professor of Medicine, Division of Rheumatology
University of Florida in Gainesville
Alex Berenson’s article (New York Times, Monday, Jan. 14, 2008) on fibromyalgia (FM) was not well supported by the facts. In addition, only one (Dr. Clauw) of the medical experts quoted by Mr. Berenson, is currently involved in FM research. Importantly, many if not most of the arguments raised about the validity of FM in the New York Times article, have been refuted in the past.
In recent years the discussion amongst chronic pain researchers has almost entirely moved away from questioning the validity of chronic FM pain to exploring the mechanisms of this heterogeneous illness. It is now well accepted that the majority of FM patients show evidence for abnormal pain processing (peripheral and/or central sensitization, inefficient pain inhibition), dysfunctional hypothalamic-pituitary-adrenal axis (HPA) and autonomic nervous system, and increased levels of neuromodulators (substance P, NGF) in their spinal fluid, just to name a few. Generally, FM pain is strongly associated with relevant neurobiological abnormalities known for their important contribution to pain processing.
Chronic pain is difficult to treat and drugs alone achieve only moderate pain reduction despite a wide variety of available medications, including pregabalin (Lyrica). Lyrica, however, is the first FDA approved FM medication rigorously tested in large randomized clinical trials and thus represents an important advance.
Therefore, I strongly recommend a follow-up article in the New York Times that offers a more accurate view of the current knowledge on fibromyalgia.
Benjamin H. Natelson, M.D.
Professor of Neurosciences
Director, Pain & Fatigue Study Center
University of Medicine & Dentistry of New Jersey
Too many doctors and apparently one journalist, the author of the (New York Times, Monday, Jan. 14, 2008) front page article questioning whether fibromyalgia is a disease, are medical materialists. By this, I mean that they believe that if they cannot hold an abnormal lab test in the palms of their hands, then, the patient has nothing wrong. By taking this stance, they allow countless numbers of patients to fall between the cracks of classical medicineleft to their own devices or to the burgeoning alternative medicine industry.
When I took the Hippocratic Oath, I did not pledge to take care of only patients with heart attack, cancer and stroke. I pledged that I would do everything in my power to help reduce suffering and improve health. Putting an article on the front page of the New York Times that will make doctors, relatives and friends of millions of Americans with fibromyalgia say that their symptoms are just a “physical response to stress, depression, and economic and social anxiety” is doing them a major disservice. This is an opinion that ignores the published literature and is the same as saying that nothing is wrong. It means that the doctor chooses not to believe the patient and is uninterested in helping him or her. This is the antithesis of my view of medicine.
The argument as to why fibromyalgia is not a disease is that “no biological tests exist to diagnose fibromyalgia, and the condition cannot be linked to any environmental or biological cause.” But the same criticism can be leveled on migraine, some forms of epilepsy, depression, schizophrenia and torsion dystrophy.
Perhaps the word “disease” is the problem. It might be better if we substituted the phrase “clinical disease entity” or syndrome. In the 18th century, there were no diseasesjust clinical disease entities. Medicine has advanced well beyond this category, but it is important to remember that syndromes still exist. The torsion dystrophy example is particularly interesting. Its a syndrome where young Ashkenazic Jewish boys, among others, develop odd muscle movements which eventually leave some unable to walk. In the 40s and 50s, these children were psychoanalyzed into their wheelchairs because all the experts said the problem had to be psychological. Today, we know something about the underlying pathophysiology and genetics of this disease, and it is a diseasedespite all standard lab tests being normal.
Thats the story too for fibromyalgia. Our laboratory has shown that the brain of the patient with fibromyalgia shows pain when the body is touched with a warm rather than a painful stimulus. Other laboratories have shown that following a painful stimulus, the FM patient’s brain feels non-painful stimuli as pain; many other studies on biological abnormalities in fibromyalgia exist. Moreover, the existence of several classes of drugs that do provide substantial pain relief should make it clear that the patient has an underlying problem that is treatable.
The real problem here is that discussion of a significant health problem, widespread pain with body-wide tenderness, has deteriorated to a polemic. Rather than argue points of view, we need more federally funded, peer-reviewed research. Based on the successes in the history of medicine, research has always paid off. It will here too.
Charles W. Lapp, M.D.
Director, Hunter-Hopkins Center, Charlotte, N.C.
Assistant Consulting Professor, Duke University Medical Center, Durham, N.C.
Alex Berenson’s January 14 article on the front page of the Times queries, “Is [Fibromyalgia] Real?” How can Berenson a young journalist and novelist with no obvious medical credentials presume to challenge whether fibromyalgia (FM) is real when scientists with greater knowledge and understanding have already concluded that it is real?
The diagnosis of FM is accepted by such venerable institutions as the National Institutes of Health, the American College of Rheumatology, the FDA, and the World Health Organization. Those who suffer with FM know it’s real; those with FM pain that interferes with sleep, and movement, and concentration know it’s real; those who want and need to work but are disabled by FM know it’s real.
It is distressing that a few individuals such as Fred Wolfe and Nortin Hadler have been given such credence in the Times when the vast majority of authorities think otherwise. These men cling to an antiquated philosophy that says, “If you can’t see something obviously wrong with a person, then the symptoms must be in the head.” In a sense, FM is an invisible illness. You cannot see pain, or sleep disruption, or bone-crushing fatiguebut these are all real.
In addition to fibromyalgia, Hadler for one also discredits carpal tunnel syndrome and chronic low back pain. For those who have these painful and disabling problems, they are as real as rain. Other skeptics disregard “invisible” illnesses such as irritable bowel syndrome and PMS.
Skeptics will always exist. There are some who believe that AIDS is not real. As is the case with FM, the skeptics are clearly wrong but entitled to their beliefs. They don’t usually get a forum on the front page of the New York Times, however.
Berenson’s article is clearly one-sided, giving a few skeptics a greater voice. I sincerely hope you will balance their perception with the wider-held perspective that FM is a real disease and a real cause of morbidity and disability. As a specialist who treats men and women with FM, I am grateful for the companies that research medications for the management of this disorder.
You can click on the link below to read the rest of what doctors had to say:
Update: A Letter to the Editor was written to the NY Times regarding the above-mentioned article. Click here to read, Disease or Not, the Pain Is Very Real.
There is no doubt in my mind that fibromyalgia pain is very real for those who suffer. Recent studies support that the nerve endings in those suffering with fibro have been altered. Other studies also support that power of the mind/body connection – also witness the NIH created the Department of Complementary Alternative Medicine in support of this.
With that said, our office has had great success in relieving fibromyalgia pain – permanently. We know that the pain of fibro is “from” the mind and not “in” the mind. We know that fibro patients are not making it up; that they are not hypochondriacs and that it is not their fault.
We used hypnosis to regress to cause (not just direct suggestion – which is most commonly used and will not last unless the root emotional cause is found). Once the unresolved emotion is identified and resolved, the pain goes away – permanently.
We have been working hard to spread this message – but unfortunately it is not well received by those who have fibro and who have been fighting the “it’s all in your head” thing for more than 20 years. Strangely though, most of these people do accept that there is a mind/body connection for ulcers, diverticulosis and so forth.
There are other obstacles to “embracing” hypnotherapy. Some see it as “mind control” because of stage antics (hypnosis always requires a willing subject) or have the fear of divulging secrets or being unaware of what you are saying or doing (you always are alert – your subconscious mind is simply sitting in the front seat along side your conscious mind instead of it’s usual spot in the back seat). Others think it is part of the occult (it is a natural state of the mind in which you go in and out during the course of the day).
But, I believe one of the biggest obstacles that needs to be overcome is the secondary gain that some people receive by being so disabled. The attention, the care, the doting that is given or demanded is enormous (note not all people need this). The need for the secondary gain is a by product of the unresolved emotion too (catch 22). The people that we have helped did not have this secondary gain need and were willing to try anything to be rid of pain and drugs.
Drugs as a last resort – doesn’t that seem like prudent thinking?
Hypnotherapy to the root cause requires no ongoing costs, no horrific drug side effects and no strict lifestyle regiments.
Why aren’t more people jumping at this? The only thing they stand to lose is pain. This is just one more puzzling piece to the whole fibromyalgia question.