Letter to Fred Friedberg and All CFSAC and IACFS/ME Officers

November 27, 2010

Posted by Cort Johnson

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4523-PastFuture..jpg(This letter was sent to me by someone who wishes to remain anonymous. He advocated for CFS 20 or so years ago and, like so many others, re-emerged with the XMRV announcement. Looking at the CFSAC meeting was like deja vu for him in too many ways. He is certainly not alone. Mindy Kitei bemoaned the lack of urgency she felt she saw at the meeting and I thought back to when the CFSAC panel refused to endorse the CFIDS Associations call for Dr. Reeves removal – until after he left the panel. In that case personal issues – the desire to maintain good relations on the panel – appeared to trump the need of the ME/CFS Community. The lack of progress over the years prompted him to write this letter.

These aren’t easy issues. It’s not easy to make progress at the federal level. My brother, a lobbyist for the textile industry, empathizes at our plight – it’s very difficult. At the same time this is where the money is and this is where we need to make a difference and to operate effectively and efficiently as possible.

There are ways to skillfully deal with any situation – to operate effectively without drawing much blood and there are times when too much belligerence produces its own ‘push-back’. One thing is clear; the opportunity we have is to support, prod, cajole and push both the federal officials and our representatives to make a difference; not to work hard or do the right thing or put their time in but basically to have what they do make a difference.

Opportunities for that will be coming up. The State of the Knowledge Conference is slated for sometime around April. It should come with a promise of a major grant package – an RFA with enough money attached to double or triple or quadruple ME/CFS funding. The time to expand ME/CFS funding is now. )

Letter to Dr. Friedberg and All CFSAC and IACFS/ME Officers

Thank you for your call to write to the people at CDC re: the opening for “CFS” program director. Attached is the letter I sent.

What I didn’t include in the letter to the CDC was my anger with our own docs. Why? If they had stood their ground and hadn’t accepted the CFS name, it would have never have caused the tremendous damage that it continues to cause. If the docs hadn’t published their own private, unindexed, secret journal with a fringe publisher, their work wouldn’t have been hidden or discredited. [Our med school head librarian said they would never stock anything from that unqualified publisher.] If our docs hadn’t sat on a government committee and agreed to do nothing but dance for 20 years, they might have been respected. And early on, our docs consistently refused to make use of patient professional skills for public relations and writing until patients just boycotted your organization. You not only made no stand on definition, diagnosis, or treatment in 20 years (!), you actively trashed patient and public books and efforts.

I know your reasons for all the above; I’ve been around for over 20 years and know many of your members and the whole history. We heard them all: “The CDC is the official group for naming this disease and we had to comply”, or “We had to go with the cheapest publisher”, or “The respected journals wouldn’t publish our work”, or “We have to be nice to NIH because they fund us”, or “We have to be polite and not aggravate the government committee because they won’t support our work if they don’t like us “, and last but not least, “We have no use for patients’ skills; they are only patients and we need to be more professional and scientific.” Look where all these excuses have gotten you.

I don’t for one minute disrespect our docs or fail to appreciate all they have done. It’s just that their techniques have failed from the start. If our docs are going to be effective, they have to stop whining and stand up, stop requesting and start demanding. I watched the last two CFSAC meetings and found myself screaming – not so much at the dull government babble but at our own docs. If one more doc “asks a question” by starting out with a feigned compliment and then a string of appositives dancing all around the real point they were trying to camoflage, I fear I will smash my television set.

The third day of the October meeting was infuriating. What a waste, spending all that time letting the government people rattle on about how they do their job. You should have been TELLING them what you need and DEMANDING that they serve you, not the other way around. Your job is to define your needs; it is their job to figure out how to do it. Wanda seems to have a good grasp on all the government resources, so if our docs would stand up and make their demands, the system does have the potential for helping them.

Hint: If our docs would restrict themselves to no more than 30 words for a comment, the sharp focus would stand in stark contrast to the rambling government people. But to be fair, the government people almost have to ramble because our docs give them no clear requirements. How could anyone sit there for 20 years and not REQUIRE the government to do anything? The fact that our docs didn’t even know that the recommendations were never acted upon speaks for itself. Our docs are not even minimally focused on accomplishing any defined goals, just talking about them. I know, I know; they have put in much time and effort. I’m speaking of focus and efficient use of time.

I’ll bet that many of your members will agree with my feeling, having learned that none of the tactics over the last 20+ years have worked. The only reason for attention now is the resurrection of the virus possibility, not due to any strategy of our docs, and WPI is showing many of the same public relations errors.

We still love our docs. Absolutely. We just call for a complete reversal of attitude, to stand up like the HIV docs did. Don’t say it requires having a virus; we had a retrovirus 20 years ago but nothing happened. You have a much stronger community behind you than you did 20 years ago. We original advocates have mostly died off, due in part to the physical efforts we made to communicate in the old days. Now with the internet, it is a breeze by comparison. If you will check out the multitude of advocacy websites, they mean business and the professional talents are still available if the docs could ever see fit to work with them.

I have wanted to express this feeling for a long time, and dare I hope that our docs will become sensitive to just sitting around and talking? Produce! Not just the science, but the public relations to make it work.

Please don’t forget to read my attached letter to the CDC.

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