SOPHISTICATED INVESTIGATION

Much reported controversy surrounds the public health agencies and their handling of investigation into the disease Myalgic Encephalomyelitis. Surely the most advanced nations with legions of medical scientists would be motivated to meet the challenge and discover the cause of an epidemic striking down its citizens, which leaves large numbers permanently disabled. Yet the response of the public health agencies has caused particular skepticism. This has raised many questions.

Now this question may sound very odd, but consider:

How would you Disguise a Disease ?

I doubt there could be too many ways . . . But if that were your intent, Let's see, where would you start --

Camouflage! First declare it is a New illness. (Brilliant!) Declare that there is no epidemic! (Tremendous) Spread the word it is not serious. (Spectacular!!!) Create a smokescreen by using a vague definition so that you can mix in many non-cases, and thus claim it is very hard to identify; then

Cover your tracks! Give the Disguised Disease a variety of New names. (Yes, a trivial absurd name, splendid!) Disassociate it from its previous established name, research, case studies, descriptions and diagnostic ICD classification. (Fantastic) Lets see what else could we do to disguise a disease

Create Confusion! We could tell Drs that this disease is “mysterious” and that there is no need to investigate, “Don't do any testing” (you won't find anything) Its a Mystery.

What else... Oh, yeah, Confuse some more, Rewrite the definition every few years. While expanding the inclusion of non-cases and making the whole field more frustrated.

My god, that should be enough? Wait, also we could use the stall tactic. You know, wait several months before allowing Drs to even consider the vague criteria, surely by that time there won't be much of the originating virus left to find. Once the acute phase and fevers are gone, so will most of the evidence.

Say, how about some icing on the cake? Well, how about a little appeasement for the patients. (Yes, we'll need to keep them confused)

We could for example tell them that we are taking this illness seriously. We could even declare that we are recognizing it as a Priority One illness. But then not do any significant research and use any funds for other projects. We could make it the least funded disease in America, who would care we have already spread the word that its not serious and hinted that it may be a mood disorder, you know “neuroendocrine”.

We could tell patients that we value their input and then ignore their concerns. We could establish important sounding committees. Ask them to participate in subcommittees that would hold things in place for a couple of years, then do it again every few years.

If all else is not enough we could bury it further under an umbrella of uncertain conditions.

Does the above sound plausible. Oh, C'mon - We'd never get away with it. TOO OUTRAGEOUS !

(They would hang us if they caught on. We would need the support from everybody all the way to the top to keep this going. Heck we got that years ago, back when we were denying AIDS, remember)

- - - - - - - An alternate approach - - - - - - -

Now, if you wanted to seriously INVESTIGATE this disease and not cover it up but search for a cure? Then, an alternate approach will be needed: To Discover, Study, Diagnose, Treat and Cure.

I would think the legitimate process is you find the genuine article. Use the strict criteria that give you the – Definitely seriously ill patients.

Immediately go to the archives and learn from the experience of those that have worked on this in the past, study and utilize the wealth left to you by your predecessors. This history will have many clues and patterns as to origins and natural course.

Focus major investigations at the origins, when the disease is in its beginning stages and zero in on any localities where an outbreak may be underway. This process may uncover the defining characteristics, which can signal the onset of this disease, what exposures may be in common. This can assist discover the causes or prevention.

Identify it. Study it. Examine it. Investigate it from every angle, with every diagnostic technology available until there is a clear understanding of what it is. Uncover what causes the disease state. Once this is accomplished then you can proceed to determine who has this disease and who does not.

What are its boundaries? What is the range of severity? Require the registry of every death of these patients.

Investigate and qualify what the sequelae are, the additional conditions that develop over time. What are the factors that define the chronic disease state?

What is the range of pathology? What factors may cause the diversity of pathology in different individuals? It is surely a large area of investigation and may require new perspectives on disease. And a new diagnostic test.

However, I believe Dr Ramsay accomplished the first step in the process. He developed a clinical description whereby certain definite cases can be identified. And recent research appears to be pointing the way with important discoveries in immunology, metabolism and neurology.

Nonetheless, even if you do not have a Nobel prize, how would You proceed? (send your answers to: _ _ _ _ _ _ _ _ _ _ _ )

Does this sum up the dichotomy between logic and reality and where we are? Can this be all an accident of modern science? Are we to believe that all the government scientists are just naive?

Sophisticated Investigation: what would be the result?

Should Sherlock Holmes and Colombo require years of appraisal of the evidence? How many cigars and pouches before revealing questions would be asked?

Sophisticated Investigation, or How to Disguise a Disease

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This essay is dedicated to the thousands that have died from Myalgic Encephalomyelitis since the acts of malfeasance by the public health agencies in 1988. As well as the hundreds of thousands that have contracted this debilitating condition which has been spreading unchecked and ignored. There are now millions worldwide and the numbers are growing.

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