Ne mors quidem est malum

My title is a quote from Cicero concerning the immortality of the soul, not an exhortation to suicide. As usual I have a new twist on an old saying.

For all the ink that has been spilled in disputes over the organic nature of ME/CFS, over a period of half a century, there has been one major oversight -- autopsies of deceased sufferers. (If you don't believe that time span, check the date of the Royal Free Hospital outbreak in London.) I'm not claiming these have never been done, only that a systematic approach has been absent, if not actually thwarted. From Dr. Ramsey's 1978 review we learn that some patients caught in that outbreak never recovered.

Even without making any assumptions about increased mortality connected with morbidity one can consult standard mortality tables to see that there must have been many opportunities to make detailed searches for evidence of pathology. (I know one U.S. patient was hit by a truck while crossing the street on an electric scooter, which, while unfortunate for the individual, does eliminate confounding problems introduced by a long, slow decline with complications.) Anecdotal evidence suggests that automobile accidents are a particular hazard for patients who have not accepted the limitations of the disease. Fatigue and cognitive impairment are well-known major contributors to accidents.

At this point, we may expect to hear from adherents of various psychosocial models that this is simply wasting money on what they know to be a functional psychological illness. At present it is getting hard to find physicians who will confidently assert that even bipolar illness or schizophrenia lack an organic component, so I'm going to make a radical proposal: Autopsy all those who die with presumed mental illness. The cost of treatment of these, to say nothing of lost productivity, is out of sight. The effectiveness of present treatment is very limited. Discovering a means of preventing or effectively treating any such illness would be a major long-term saving for health care.

Why has this not been addressed? Because most major healthcare systems can spend less if a disease is classified as mental. (As your First Sergeant might say, "That sounds like a personal problem.") Where is this not true? Norway is one example. In that country treatment for mental illness is taken seriously. You seldom meet the mentally ill living/dying on the streets of Oslo. Secondly, Norwegians can't expect to shift the costs of mental illness to Swedes or Danes; no matter how an illness is classified they know Norwegians will be paying for treatment. Treating normal organic diseases in hospitalized patients with mental illness is more expensive than treating patients who have the organic disease alone.

Now do you understand why a breakthrough in treatment of CFS took place in Norway?

Why has the simple and obvious step I'm proposing for research on this disease never been done here?


There are two reasons that I think partly answer your question, and they overlap: gross disinterest, and gross neglect. I suspect that the cost issue is probably a secondary consideration, coming into play when someone starts considering ideas like the one you proposed: it will cost so much money and then cost even more. So its a disincentive not a block in my view, one of a whole bundle of disincentives. A huge part of it though is government, public service, medical and scientific intertia. If it aint broke, don't fix it. The fact it is clearly broken gets overlooked because it does not suit prevailing views. Are not these the best of times? To me the answer is no, these aren't, and we could be going backward. A rational analysis of the cost of inaction would, I strongly suspect, show that spending more on research including large scale autopsy studies would be costly in the short term, neutral in the medium term, and seriously cost saving in the long term. Those who focus on cost benefit in three to five year cycles as in government, or one year for some corporations, simply do not factor in the long term value in doing something.

Society should be doing far more toward solving long term problems rather than lamenting the cost of expensive band-aid measures. Cost cutting sounds nice to some (those layabouts, they should get a job, cut disability benefits), but solving the problem is the only way to get a permanent solution. Cutting costs on dealing wth disability makes the problem worse, and increases the eventual burden, in my view. Cutting research is just crazy, and not increasing research is very damaging in the long run.

Bye, Alex
Interesting idea about autopsies for anyone who dies with a presumed mental illness. Certainly I think it's a good idea for CFS (which might even show it's not a mental illness).
Now do you understand why a breakthrough in treatment of CFS took place in Norway?
Or, according to the Rituximab paper authors, it was a that couple of oncologists who followed through a chance finding that a patient with leukaemia and CFS showed a dramatic improvement in their CFS symptoms on chemotherapy. This is in the best tradition of science - follow a lucky lead. The authors did a successful pilot on non-cancer CFS patients, then the main study using university/hospital funds they could access. The government had been, by it's own admission, neglectful of CFS patients until they saw the study results.
Do you think the first CFS patients to have been treated for leukemia/lymphoma were Norwegian? As luck has it you can ask an American oncologist/hematologist, Dr. Michael Snyderman. The problem is not a shortage of lucky leads, it is official willingness to follow them.

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