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Where would we be without the CDC?


Senior Member
Just pondering a hypothetical question - where would ME be if the CDC had not intervened at all, or else had played a neutral role?

Most of us would hold the view that the CDC's intervention (since the mid-1980s) has been harmful: that their actions have contributed to the deligitimisation of very real disease and undermined serious research into that disease.

Putting aside the possibility that they could have actually fulfilled their legal mandate in the context of ME, imagine a world where the CDC had (since the mid-1980s) neither actively assisted our cause, nor got in the way of those willing to try to help. Imagine they had not done anything to directly harm us. This is a world in which:
- The name CFS had never been invented;
- The CDC had not initiated the Holmes, Fukuda or Empirical sets of diagnostic criteria;
- CDC and NIH staff had not gone around the country making fun of 'CFS' or ME;
- The CDC had not disseminated misleading information about ME (eg through their website);
- Researchers had never been pressured/obliged to use diagnostic criteria they knew (or should have at least suspected) to be flawed, if such questionable criteria had existed at all.

So where would ME research be now? More advanced? More heavily researched? Having followed a different path?
Would we still be so widely ignored within the medical world?
Would there still be institutional bias (eg against publishing studies on ME; discrimination against researchers wishing to research ME)?
Would we be treated any better (by doctors; in terms of community empathy & support)?
Would the Wessely-ites have got as far in their campaign?
Would we all be considered to have ME?

What you you think?


Senior Member
Sth Australia
I blame the CDC for the whole CFS issue. If they hadnt missed diagnosing the Lake Tahoe ME patients and not made up the whole CFS illness. Most of us would be far better off today.

If it wasnt for the CDCs missed diagnoses and their need to come up with a name for an illness they didnt know... . the Wesselites would of never happened.

Maybe one day the CDC will be blamed everywhere for the whole mess and held accountable, cant deny they've damaged what was a historically known illlness and ME.

How can they not say that the 80s CFS outbreak which Cheney and Peterson investigated was not ME?. Can they tell anyone why it wasnt ME? Can anyone contact them and get an answer to that question?
(the CDC viewed CFS and ME as separate illnesses and made that clear for years after they introduced CFS)

The CDC should be on its hands and knees saying sorry for all the patients which have been mistreated as psych patients due to what it all started, for all the heartache its caused, not just in America, what they did ended up spreading wild wide.

Ive even had my Aussie doctors look up on their website when dealing with me. They are responsible for WORLD WIDE abuse of ME patients and hopefully one day there will be a world wide class action for the abuse they've caused. I'll be one of the first to join it!!

No one can doubt where all this ME/CFS mess did start from (lake tahao..umm I dont know if im spelling it right)... and the fact this mess has been allowed to continue to this day is irreshensible. (note thou they did say on their website that ME and CFS were different illness.. they never clarified exactly how.. so no doctors could tell the difference). How can they not be responsible for the public perception of ME even if its wrong?

The CDC themselves couldnt even define what ME is.. I myself asked them. They sent me on a wild goose chase onto other places which didnt know either.

No court could deny it if they looked back into it that those patients that Cheney treated, had an illness which had been known as historically as ME!!! Hopefully one day a court will be looking into it.

If CFS hadnt been made up, certainly ME would of been "seriously" and better studied. The CDC has set medicine in the illness of ME back 25 years.