A response by LK Woodruff

You are clearly coming from a very, very different place than many of the rest of us. You are a staunch 'CFS' (only) person, to the point where I often wonder whom you work for, the CAA or the CDC. Also your remarks appear to be based primarily on just the past 3-4 years; not on everything that's occured over the past 20+ years. We have all been led down the path, on both sides of the pond, by 2 groups who have become good buddies (Reeves, Wessely). And the levels of obfuscation are extreme....

If you want me to go thru your entire post, section by section, I will take the time to do that. Just let me know and then give me a few days....

But here are the salient points::

CFS (Fukada, et al) was written in the '80's for what the USA CDC determined was a 'new and emerging illness'. Little has been done about it, however, in the ensuing years. Don't kid yourself: it remains #51 of 52 on  the NIH research funding lists, and receives a measly approx
$4M per year, which is next to nothing when one knows how many, many Million$ other illnesses receive (see recent CO-CURE posts).

'CFS/ME' is the UK (Wesseley School) version of the same thing, except now we now know that they are handsomely paid by the insurance companies for their obfuscation (and subsequent ability to deny patient claims).

(cf) or 'chronic fatigue' is a symptom...which many, many other illnesses also present with.You can't base any relevant illness research on 'fatigue'. Yet the USA CDC continues to try to do so???

CFIDS is the name the CAA made up, in an attempt to draw attention to immune system problems. It is not formally recognized by anyone, including the WHO. And there were a lot more support groups and cohesiveness...until Kim McCleary took over. And now their bread and butter doesn't come from the patient membership, who's numbers have dropped off significantly, but from their lucrative new contracts with the CDC, who keeps them in business and fills their coffers regularly - and tells them what to say.

Every individual or organization who's worked with the CDC seems to end up spouting the CDC's special brand of PR, instead of
expanding the CDC's thinking/approach. That's interesting...and also very non-productive.

And here's the most horrific sin of all:

ME (Myalgic Encephalomyelitis), G93.3, Neurogenic - continues to be ignored!!!!!!!!!!!!!!!! If that were your diagnosis instead, and you were as horrifically ill as these patients are and knew you weren't going to live to old age as a result and NOTHING was being done for you, don't you think you'd also eventually become very ANGRY over the lack of any meaningful research or intervention?!?!

It is not ok to always be angry, as that is not productive and drains a person dry. But anger isn't the driving force for many of us. It is, instead, frustration and HUGE dissappointment. And we have the RIGHT, and I would even go so far as to say the MORAL DUTY, to question what all has--or hasn't--taken place and ask why there are so many holes in the stories. -->It doesn't add up, and even those of us with neurocognitive illness deficiencies can see that.  We have every right to demand that new directions and focuses be followed now. And to state that what's occurred to date is not helping anyone.

We have every right to demand that OUR ILLNESS (ME) be studied seperately and properly, instead of lumped with other more trivial illnesses. It's already been classified differently by the WHO, after all. So no one needs to reinvent the wheel here, they just need to build on the existing foundation.

Those who don't 'get that' clearly are in different camps...or operating out of fear (of asking for more info &/or suffering repercussions, or having to make changes in their lives because of the answers they receive, etc.) I prefer to have more control of my own destiny.

Lastly, much of what both the CDC and the pharmaceutical companies have focused on in recent years relates--broadly or tightly--to effects of war.

I am a very fair person. I am honest to a fault. In fact, I insist on dealing with REALITY--which is why this entire situation is so uncomfortable and distasteful for me--and expect others to do so, also. Particularly when it comes to SCIENCE (which the current USA Bush administration has made clear they don't believe in.) What a conundrum....

I may be very, very, very ill. But I am still not stupid.

LK Woodruff

For more information (and my own response to this ignorant post by Cort) see: M.E. advocacy and 'CFS' advocacy are not the same