A response to the excellent Post and discussion PD-by-the-Book-may-be-Wrong

Death is a serious medical condition with a broad impact. It is surprising that while there is reasonably consistent acceptance of the definition of clinical death there is a broad range of opinions in the medical community regarding conditions leading to death and its onset, which we shall denote as pre-death (PD). Certainly experience indicates there is early-onset PD, rapidly progressing PD, “normal” PD, and an unending variety of named PD realizations.

There seem to be as many prescribed PD treatments as there are practitioners. PD treatments are directed towards two goals: 1) curing PD and 2) providing relief for the symptoms of PD. Drug therapy is very popular and has generated vast incomes for the pharmaceutical industry. With all this attention it is disturbing that no cure for PD has been discovered. Indeed there is surprising the little scientific evidence that the most expensive PD drug therapies provide substantial benefit beyond a consistent regimen of 1. Eat a sensible diet, possibly with some supplements, 2. Get plenty of sleep, and 3. Exercise vigorously.

The scientific evidence that exists has been generated mostly by funding from the institutions that corner the profit generating market, aka, the pharmaceutical industry, and consistently supports the use of their products. The professional community aggressively discourages comments from the PD sufferers regarding possible treatments, or even which symptoms torment PD sufferers. Discouragement can take several forms: mostly comments are simply ignored, but for comments where consistency creates a little traction, the professionals dismiss them as being antidotal. In this latter case there is abundance of self-defined savants in the PD community who jump on the bandwagon, eager to castigate those PD sufferers who choose to share what little they have learned rather than to suffer in silence.

This situation might be amusing if the outcomes were not so grave. There is little science in the “scientific” evidence presented by the professionals and far less in the tirades issued by the savants. For example:

1. Do they understand the difference between correlation and causation?

2. Do they understand the meaning of independent samples?

3. Is it appropriate to cherry-pick the results, publishing only results that are supportive of their agenda?

Based on accepted practice, it is appropriate to wonder if “Medical Science” is an oxymoron.

Disclosure: I am a retired scientist from MIT and the National Center for Atmospheric Research and have served on a panel for the National Academy of Sciences (Radar Meteorology).

Explanation 1. The numbers, which are generated as evidence of success in a double-blind trial, are correlation coefficients and do not infer cause-and-effect.

Explanation 2. Comparison statistics require that the sample populations in the test be independent, not just different. For example if there is any positive/negative correlating supplemental treatment, genetics, etc. in the TEST and CONTROL groups then the sample populations fail to be independent. To select randomly and to know enough about the test group and the control group to guarantee that there are no correlating supplemental treatments, genetics, etc. probably would require a “quadruple blind” trial (subjects, group selectors, test administrators, test evaluator).

Explanation 3. It is scandalous that cherry-picking has been widespread and accepted in the medical research community. While recent actions have been taken to reduce cherry-picking, no effort has been taken to measure and publish the level of cherry-picking in historical studies, which are cited so often in our current discussions.

5 Replies

  • Great points! What do you propose as a solution? I have volunteered for a study on efficacy of Isradipine. This study is funded by the MJF Fdn. But what do you propose? There is a tautological edge to the finding that exercise is helpful for a disease that immobilizes people. How do you get from little or no movement to walking 6 miles an hour???

  • Hi racerCP,

    And more to the point from the viewpoint of a participant, how can it be possible for any such participant to maintain some degree of motivation, some degree of interest in the trial, rather than succumbing to death by tedium?

    Also 6mph, 6??? that's a run or a jog not a walk. Instead of dying of tedium it will be plain exhaustion, lol.

  • The answer is it is something I enjoy. Guess I would rather die of exhaustion than tedium.

  • Pete, my first response was too flippant. First, as you know each person's PD is different so it is difficult to compare. Secondly, I have been DX'd at 73 after I retired so I have the time. Thirdly, I have always enjoyed exercise, walking, running and swimming so to have the time and excuse as a remedy is good. I also walk in an inspiring atmosphere, Central Park, with a 4, 5, 6 mile laid out route filled with people running and exercising and I have two friends who meet me at 6 a.m. Now, what is there to do between 6 a.m. and 7:30 a.m. that is more pleasant than being outdoors and meeting friends. I still have PD and it has progressed a bit in the last year due to stress and just nature of the beast but I am pushing back.

    Your comments are always intelligent and cogent.

  • Thank you for your intelligent comments. Have you read a new book, BRAIN STORMS: THE RACE TO UNLOCK THE MYSTERIES OF PARKINSONS DISEASE, by Jon Palfreman, a fellow sufferer and award winning science writer? He gives a rundown of what is known of PD since it was first recognized by Parkinson and theories and avenues of present research. Sad to say there is little real and accepted knowledge of genesis or course of this disease. One little statistic he mentioned: Late DX of PD, after 70, has a life expectancy of five years post DX. A bit frightening because it deals with mortality at a time when US life expectancy is nearing 80 for both sexes. Have you encountered statistics on progression and mortality of later DX Parkinsons and if so can you share it?

    I am also reading THE END OF MEMORY, A NATURAL HISTORY OF AGING AND ALZHEIMERS, which I find relevant to PD.

    Look forward to reply if possible. You can send reply to personal email if it is available on website.

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