İMarilyn Kerr RN March 8, 2001
What would I do if I had the energy to take on some projects?
1.HOW ABOUT ADVOCATING FOR SOME GOOD TREATMENT?
We have 15-20 years of alternative and orthodox medical experience by
nationally-known specialists and experts in Chronic Fatigue Syndrome/Fibromyalgia Syndrome
(CFS/FM). Not one of them has effected a cure. While there are certainly patients who have
improved, there is a continual misgiving about the lack of
a. proof of the efficacy of the CFS/FM specialist's protocol
b. standardized testing to quantify "better'?
2.HOW MUCH BETTER IS "BETTER"?
I am concerned about the exorbitantly high fees being demanded by several of our nationally-known CFS/FM Specialists. While these doctors are being visited because of their renown, before one takes out a major loan, takes money from savings, or re-finances one's home in order to pay for their fees, perhaps the patient should ask that doctor the following:
"What is the percentage of your patients that have been so improved by your medical protocol that they have been able to return to work?"
If they answer that question honestly or at all, you will find that the percentage is so miniscule that their protocol is no better than just placebo.
Question patients of those doctors when they say they are "better." In my experience, such patients' account of their "improvement" is ephemeral or is no better than others have attained from a local, far less expensive, non-CFS/FM-literate doctor.
All of these doctors include diet changes and nutritional supplements. You can do that on your own. Any doctor can address sleep, pain, and even immune deficiencies. Finding that doctor may be difficult, but it will be far less expensive than traveling hundreds of miles and paying out thousands of dollars for a protocol already outlined on that doctor's website.
We must hold our nationally-known CFS/FM specialists responsible and accountable for the years without any replicable cures nor any significant, sustained, measurable improvements in our health.
Through the years of reading online messages and articles, while a patient may have an initial lessening of their symptoms (sometimes, dramatically), other than Dr. Teitelbaum, none of our experts has published long-term follow up studies of their protocols.
While standardized tests are now being used to assess research patients, none are being published by these nationally-known CFS/FM specialists. We are dependent on long-term studies done by researchers who may have some other agenda, affiliation, or are influenced by insurance and/or pharmaceutical companies.
It's ridiculous that when asked, some of our doctors claim that they are simply too busy to do research. As is common in academia, why haven't our doctors hired or enlisted the aid of a collaborator?
The easiest research for these doctors to do would be a backward chart review. The process for that would be to open patient charts and, based on the desired criteria, document pertinent data. A chart review would make that doctor accountable to the community and bring to light many items of interest:
(a) The percentages of treatments and medications that have been most efficacious?
(b) What are the percentages of the combinations of alternative and orthodox medications, body work, etc. that have proven to be most beneficial?
(c) What were the triggers/onset in their patients and in what percentage did they occur?
(d) What was the usual course of the disease?
(e) What percentage of patients improved and what testing was used to quantify that improvement?
(f) What has been the long-term outcomes of their patients?
As these doctors become older and with few, if any, young doctors in the wings, they owe the community such accountability.
The old saw that "each patient is different" used as an excuse for there not being a standard protocol is just that. An excuse. While there may not be a perfect cookbook for treating CFS/FM patients, there certainly could be a treatment plan more explicit than there is now.
For instance, several doctors have published very detailed protocols with rationales. Their basic science appears to be worthy but, like others, they apparently haven't followed through with long-term studies of those patients. Other doctors' protocols are often so vague that they are worthless.
In a high percentage of these CFS/FM protocols, exercise is prescribed. Even if the doctors are blind to the research on post-exertional malaise, the CFS/FM specialists must also be deaf because most CFS/FM patients cannot participate in rigorous exercise for any substantial period. And there are many anecdotal reports online that following a doctor's order for such exercise has adversely effected patients for months afterwards. Prescriptions for exercise are an example of the insurance companies' agenda for blaming the CFS/FM community for their own lack of progress. It is used as a "refusal to follow the treatment plan" when we fail. And it is also used by some doctors to blame ourselves for our own disease.
For all their charisma and exorbitant fees (usually not covered by any insurance), the best these renowned CFS/FM specialists can provide is palliative care. In other words, because there is no hope for a cure, treatment is geared to merely alleviating our symptoms. Even AIDS and cancer patients are given more hope and help than that.
With approximately 100 overlapping symptoms associated with both CFS and FM, most doctors address only one or two symptoms per visit. No wonder patients stay with their doctors for years and develop secondary depression - switching medications frequently and presenting more symptoms in subsequent visits takes time.
We must demand more from those doctors!
3.THE NEED FOR STANDARDIZED TESTING
Whether the presently available laboratory tests developed under research protocols are actually bona fide markers for CFS/FM or not, a standardized group of tests should be developed and recognized. This "CFS Panel" should be readily available to any patient who wishes to find out whether they have CFS/FM.
The prejudice of the medical community lies in the fact there are no government-sanctioned laboratory tests to prove the existence of CFS/FM. Advocating for that would be infinitely easier than trying to change the name of the disease. And the process of finding and standardizing such tests will, by default, produce research as to the cause, to the treatment, and perhaps, to the cure.
4.RESEARCH
Presently, research proposals and completed research are reviewed by "peers" who may know nothing about CFS/FM and/or who may have prejudices against it. Certainly, the various specialty Boards are not appropriate when it comes to adjudicating CFS/FM research. Proposals for CFS/FM research should go through a nationally recognized "College of CFS/FM" so that they can be peer-reviewed by doctors who are CFS/FM-literate.
One only has to note in which journals CFS/FM research is published. Few have ever been printed in the most prestigious journals. And there is one major journal that has never published anything on CFS. Surely that's no accident or oversight.
5.TILTING AT WINDMILLS
I don't care what my disease is called. All I want is recognition and treatment for my symptoms. It is ridiculous to blame all the problems encountered by CFS/FM patients as having resulted from having the words, "chronic," "fatigue," and/or "syndrome" in the name!
The present medical bias against CFS/FM patients has little to do with the name. The beginning of the bias occurred in the mid 80's when the illness was defined as Chronic Reactivated Epstein-Barr virus and was nicknamed the "Yuppie Flu." The media, perhaps because of pressure from the insurance companies, characterized those with "Yuppie Flu" as malingerers, stressed, and seeking secondary benefits. Prejudice from the public, our friends, and family will change when the medical community finally does the appropriate research to find the cause and prescribes appropriate medical treatment.
Another basis for our collective problems has be placed firmly upon some people in our community. Though such folks can be found in any disease, these more strident, aggressive members of our community (and who are often self-designated "leaders") are not doing us any favors, but in fact, are detriments to our community.
On an individual basis, one can forgive their sometimes hysterical behavior as being symptomatic of impaired mental cognition secondary to CFS/FM. But when such individuals are in positions of responsibility and trust, their behaviors feed into the prejudices and biases of the mainstream medical and governmental communities. We all suffer as a result.
Even the years wasted in attempting to get the name of our disease changed from CFS to some yet-undecided name plays into such prejudices. This fight has often been used against us as an example of how well we really are - if we have the energy to fight so long and so hard for this then we must not be as sick as we say we are.
While our own CFS/FM specialists commiserate with us and understand our community's need to change the name, their blatant absence on the front lines (or even in the rear guard) indicates that they know that it's a fight that's foolhardy and not ever going to be successful. Those same specialists may understand that this ridiculously long fight is a symptom of our community's inability to make the appropriate decision to drop it. But the mainstream medical and government organizations aren't empathetic to that. They only see patients more concerned about the name of their disease than they are about getting appropriate testing, research, and treatment.
Such emphasis has put the cart before the horse.
Instead of fighting for a name change with government officials who can only recommend such a change to the real powers that be - which, in this case are probably the insurance companies - our energies would be more effectively used in striving for real treatment for both ourselves and for the community.
Just ask yourself, "What would I be doing if I wasn't using up my precious energy in the name change furor?"
6.THE HOUSE DIVIDED
Instead of splitting ourselves into "subsets," we must join together to force researchers to find the actual cause(s) of CFS/FM. This disease impacts every system in our body and becomes worse if not appropriately treated. The medical community has already split us into CFS and FM camps. Allowing them to further split us into "primary," "secondary," triggers, onset, and every other variable noted within the population simply weakens us and effectively pits one against another. No matter the cause, the results are the same. We are all just somewhere within the continuum of the disease.
Understandably, if one has been granted disability for CFS, one could imagine that it might be in danger if the diagnosis were changed to FM or vice versus. But I not suggesting changing one diagnosis for the other. I am suggesting that we simply add the other diagnosis. It only can strengthen one's case. Our own CFS/FM specialists have publicly stated that they believe that with a 75-90% overlap of symptoms, both CFS and FM are the same entity. Apparently, only the patients believe differently.
Rather than fearing a change in diagnosis, we should be fighting that they be accepted as the same disease. Previous research done to prove their separateness had obvious flaws secondary to bias. When definitive research is done and the cause is found, the researchers will not only win the Nobel Prize but will be falling all over themselves in selecting an appropriate name.
Apparently, only our CFS specialists are willing to embrace FM as a concurrent diagnosis. It is the rare Rheumatologist who would do the same and it is certainly not supported by their peers and overseers.
Within the FM community, "Primary" and "Secondary" FM has been adopted. Whether one wishes to recognize it or not, there are ingrained biases in such nomenclature. Even in online discussions, it is readily apparent that "Primary" FM has more status of some sort than those with "Secondary" FM. No matter the trigger, onset, or course of the disease, the case definition of FM remains the same.
7.WHERE DID FIBROMYALGIA GO?
I am still perplexed why the US FM community has allowed their disease to be deleted as a diagnostic code (729.1) in October 1999.
One's doctor may tell the patient that they have FM, we see research being done on FM, and there are articles written about FM, but as far as organizations who determine need for medical treatment and services based on ICD codes (the insurance companies and the Long-Term Disability carriers) are concerned, that patient has "malaise and myositis" and may even has had the prosaic term "fibromyositis" added.
In other words, in one fell swoop, millions of people previously diagnosed with Fibromyalgia Syndrome disappeared from public accountability. They were replaced by folks who are "fatigued" and who have an "inflammation" of a muscle. Since the diagnosis was deleted, medical schools and doctors receiving Continuing Medical Education are being told that FM is a temporary, non-debilitating disorder comprised of simple aches and pains.
Around the same time, CFS was recognized by the Social Security Administration as a "medically determinable impairment." With these two so similar diseases - one discredited and virtually eliminated - and the other now a valid cause for disability, it would seem more feasible, prudent, and reasonable for people with FM to accept (or fight for it if necessary) CFS as an additional diagnosis.
8.THE FUTURE
With the CFS and FM communities aligned, they would become a force to be reckoned with. Such a block of voters could effect some real change for their benefit. One could envision respect, research, appropriate treatment, and an end of the vague feeling of helplessness.
Infighting between the leaders of the CFS/FM community is counter-productive and must be discouraged. After years of abuse and disrespect from friends, family, and the medical community, truly uniting the CFS/FM communities can only change our situation for the better.
Index of CFIDS/FMS Info Pages
Since July 2, 2001