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Judging Essiac Testimonials and Recovery Stories
According to respected CancerGuide author
Steve Dunn on his site's essiac information page:
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So if there isn't good scientific data, what about anecdotal cases? I think that that cases can provide evidence in a limited way
(See my Article on Evaluating Alternative Therapies for more on this.) Many of the articles I have read cite a few anecdotal
cases, but in my experience most of these cases are either inadequately documented or, (and this is quite common) the patient
had concurrent conventional therapy. Often, the conventional therapy is played down as something which could not possibly
have been responsible for the good result, and in fact it is often true that such a good result would indeed be quite rare with
conventional therapy. But even when the prognosis with conventional therapy is quite grim, a few, sometimes a very few,
patients may have an extraordinary response. Given that Essiac is so popular, it isn't surprising at all that there are patients with
a poor prognosis who used Essiac along with conventional therapy and who did much better than expected. Although it is also
possible that Essiac did help these patients, you really can't tell either way, so this type of case is not good evidence for Essiac.
While there is probably little harm in using Essiac tea, no one should rely on Essiac as a primary therapy for cancer -- the
evidence just isn't there.
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Steve Dunn has a valuable criteria in his article for Evaluating Alternative Therapies.
Limitations of Cases and Testimonials
There are two problems with testimonials. The first is the
numerator/denominator problem. Even if you are convinced that some
patients have been helped, you have no idea how many were not helped. Even
if a treatment works rarely there may be an impressive number of
testimonials or cases. This is a fundamental limitation of relying on
testimonials. Nonetheless, testimonials can establish that a treatment
works some of the time. The second reason that testimonials can be
misleading is that there may be another explanation for the patient's
survival. In fact, the vast majority of cases and testimonials I have
looked into are not valid evidence - even when the patient is convinced
that the therapy saved his or her life. In order to show effectiveness in
a single case, you need to know that:
- The patient definitely had biopsy/pathologically confirmed
cancer.
You can't know if someone got better unless you actually know they were
sick in the first place!
As an example, I was told of a patient who was "cured" of a brain tumor by
an alternative treatment that seemed scientifically absurd to me. I later
found out that the patient has been "diagnosed" by a quack method called
"applied kinesiology." There had never been an X-Ray or scan that showed
tumor, much less a biopsy. Obviously, this patient never had a brain tumor
in the first place.
A biopsy is necessary to have a solid diagnosis of cancer. Most
conventionally diagnosed patients do get a biopsy, but this is not always
the case. Even patients who are diagnosed by doctors using conventional
methods can be misdiagnosed. While this may be uncommon in general, it
might be a common explanation for unexpected recoveries from cancer.
Therefore, it is important to be sure that the diagnosis was biopsy
confirmed.
- The patient definitely had observable tumor in their body when treatment
started.
Although spontaneous remission happens, it is quite rare in general, and
exceptionally rare except for kidney cancer, melanoma, neuroblastoma, and
lymphoma, so knowing that a patient had tumors that went away or shrunk
under treatment is evidence that the treatment did something. If a patient
had all disease removed by surgery or other treatment, then the fact that
they stayed well afterwards may only indicate that the surgery or other
treatment cured them.
I have talked to people who had a locally advanced cancer removed who
swore they were cured by an alternative therapy. Although their prognosis
was indeed relatively poor, there was no reason to believe they were not
just lucky.
- No conventional treatment could possibly have resulted in the patient's
survival.
Again, even if a patient was told chemo probably won't help, and then had
a great response while also taking an alternative treatment, you can't be
sure they were not lucky enough to have an exceptionally good response to
the conventional treatment.
- There is objective evidence that the patient actually got
better.
This means either observed shrinkage or disappearance of tumors on x-rays,
or on physical exam conducted by a physician, preferably independent of
the alternative clinic. I would also accept extremely long survival (Many
years) without symptoms in patients who had growing tumors before starting
the alternative treatment and who would have been expected to die much
sooner. A few alternative practitioners have developed their own
questionable tests for cancer, and you should never accept the results of
such tests as proof that there has actually been a response to
treatment.
- The case is not just sales material!
I have seen altogether too many vague testimonials on the Internet put
forth by people who are interested in selling a product, often as part of
a multi-level marketing scheme, but who know nothing about cancer or
cancer treatment. These cases are almost always absurd or completely
lacking in details. My advice is to ignore all such sales pitches.
Since different cancers often respond to the same treatment very
differently, it is important that you find evidence that the treatment
works in your particular cancer, if at all possible (this may
be difficult).
Independent Qualified Review of Cases as Evidence
You can see how tricky it is to determine if a case is really valid or
not. It is far better if a qualified expert who is independent from
the proponents of the therapy has already examined cases and found
them to be valid. Sometimes, such "best case" evaluations do exist. Such
an evaluation should include summaries of each case and you should be able
to tell if the criteria I just described have been considered. You also
need to consider is whether the expert is really independent. Such best
case series still do suffer from the numerator/denominator problem.
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--- Permission for use of material granted by Steve Dunn, CancerGuide,
cancerguide.org.
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