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NEURONTIN GUINEA PIGS: An Example of the Lack of Medico-Scientific Communal Responsibility by Judith Fleet Wisdom (1)

I write the above as a consciousness-raising act. It continues the point I have oft made, that we are using many treatments with no experts (doctors who are most interested in the use of the treatment and collecting, even informally, clinical if not research data about it) available to us.

I have long maintained that we PWCs need a central clearing house which records and updates ongoing research projects and ongoing information on treatment protocols. And publishes this information.

It would be a place our docs (and maybe us ) could go to register information about a treatment and get feedback. Or to find out about research into some aspect of the disease that we are interested in.

I know, for example, that one physician (Jay Seastrunk, M.D.) is deeply into Neurontin for this disease. There may be others. But he has only "published" private papers. And he is impossible to reach by phone. He possesses valuable clinical information and hypotheses. He might even have some data collection going on. But we don't know. And he is not atypical at all. He is working hard. Has many patients. The problem is not that of any one doctor who treats CFS. The problem is that neither the government, our advocacy organizations, or groups of physicians have seen to it that a central clearing house is established.

Thus, we and our doctors are on our own. Even smart CFS/CFIDS/ME docs are disconnected from those who are most involved in certain treatments. Mine just asked me if via the Net I had heard anything more about this particular physician having said anything further about Neurontin. And this physician (mine) reads widely.

He is giving Neurontin to me gingerly because it is helping me, and because I gave him the Neurontin papers written by Jay Seastrunk, M.D. And because another doctor he respects, to whom he spoke once, said good things about the drug.

But we need more "backup." And backup that is not accidental but "there" and reliable.

Example: I am going up very slowly compared to most, increasing 100 mgs every 4 days, and sometimes 50 mgs when the symptoms of upping get too tough.

I am at 3200 aiming for 3600 mgs. though I understand Jay Seastrunk and others have sometimes gone as high as 5000 mgs.

It was long ago that I suffered daytime intense somnolence. Early in my Neurontin dosage. Thus, I thought that symptom was long in the past.

But, today, with an increase, I suffered such somnolence it was incredible. I was "drugged." Someone called and my speech was slurred! It was so embarrassing. I am taking a break right now but I am still feeling drugged. My hands are swollen.

It is no emergency. But I'd like to be part of something. Some data. Some feedback. I have a friend on Neurontin who is having horrid pain and can't stand it. I have acted as a buddy for him. This is wildly primitive.

It was only quite by accident that I was able to find out that weeks of upper respiratory symptoms were being found to be associated with a middle level of dosage!

Why should we, who suffer so much anyway, with the illness and the treatment of it, suffer more by being kept so in the dark because no group of physicians or patient advocates has said a central agency for such information MUST exist for us and/or our doctors?

It would help increase the size of the sample , even in the pre- formal research stage of data collection and evaluation. Clinical experience, pooled, is so valuable. It is where scientific hypotheses and research get generated. This forwards the state of knowledge. And also helps patients and their doctors deal with often quirky drugs with an often quirky illness.

I think that is not too much to ask for such a clearinghouse, such a resource, but apparently it is. Every doc is in his or her own little nook and cranny, and we are the guinea pigs, of our own choice. On our own. And our experiences constitute information wasted. Not to mention that we and our docs have nowhere to turn for some feedback and advice.

With conventional uses of drugs you can turn to the manufacturer or find someone doing research.

It is a crime that this is happening.

It is both a matter of human decency and a matter of science. The absence of such a resource as I refer to is related to the issue of scientific responsibility that goes beyond the individual scientist. And the CFS medical "community" hasn't seen this. All is anarchy, competition, and chaos.

(1) The author was a sociologist of medicine, teaching in a Family Medicine Training Program and writing her dissertation when she fell ill with CFS.

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