Saturday, June 13, 2009

Re: CFS Patient Groups Cowed by CDC?

After recovering a bit from the bad crash I had from testifying at the CFSAC meetings May 27-28, I was taken aback to read John Anderson's blanket condemnation of all patient advocacy groups in the United States.

First, let me suggest that anyone reading this take a second and go to the two webcasts of the meetings on those days. Just clicking on them will help, because showing interest will more likely convince them to continue broadcasting them. You can easily speed through the boring parts by putting your cursor on the bar underneath the video and moving it faster (and there is a fast-forward function, too). And for the first time you can hear the testimony - some of it heartbreaking. If watching is too much, just click on it to show your interest.

Both videos are available at:
http://videocast.nih.gov/PastEvents.asp?c=39

There are two videos, one for each day, and a podcast - just scroll down past meetings that have taped since then until you get to CFSAC day 1 and CFSAC day 2.

You probably should hear all of Dr. Reeves' testimony from day one - I've had to listen to it for fourteen years and there's no way to describe the insinuations and ill will towards patients it reveals, without listening to it yourself. Note that when asked, Dr. Reeves refused to address the CDC stakeholders' meeting - he simply mumbled something about allowing patients to speak more than once and that therefore you couldn't get an accurate count of just who was dissatisfied, and he thought it was just individuals with strong opinions.

You can then imagine how frustrating it was to testify after Dr. Reeves, but be limited to only five minutes. In the 1990s, we were permitted to ask questions of the formal presenters - but since 2003 we have had to squish our responses in to the same five minutes we had already prepared. Reeves had mentioned British psychiatrist Peter White more than once, so I had pulled up a quote from my hard drive that reflected White's true views on our disease and read it off of my computer while still trying to stay in the five minute boundary.

That effort would have been difficult for me had I been well. It pretty much destroyed me the way I am now (15 months off Ampligen). I could not move after I gave my testimony; friends had to come up and help me back to the wheelchair and collect my belongings. I spent the next day of the meetings on the floor.

I went through that effort because it was important to be there, important to give testimony, important to see us how we really are. I live in Delaware and can take the train to the meetings, so I believe I should be there, no matter what it does to me.

And then I read that we were all too easy on CDC.

Go back to those taped meetings of the CDC. If you pull the little button under the screen to the 3 hour mark (3:00:00), you will be just into Pat Fero's testimony and will catch many of the rest of us, too. So you be the judge.

I don't believe Pat Fero of the Wisconsin ME/CFS Association was "easy" on NIH when she presented hard evidence that they were lying about even the paltry sums being spent on CFS. For that matter, I don't think the Association's president, Caroline Fibrence was overly gentle, either. She spoke about the problem of reasonable accomodations for our illness at HHS. As we all were, she was taken aback by Dr. Reeves comments and criticized the short notice we got for the stakeholders' meeting. She would like to have gone, but two weeks was not enough time. "That's not how you do it if you really want to hear from people, and I consider it a slap in the face." Dr. Reeves "sounded nice," but was just reporting things that happened a long time ago. Caroline has a background in epidemiology, and criticized the way the paltry sums allocated for "CFS" is spent on other projects. "Too little, too late, and needs to be far more focused."

Meghan Shannon, of the original Medical Professionals with CFIDS/ME and "Our Bodies, Ourselves," followed with a critique of the entire NIH/CDC program, starting with the invention of the useless name "chronic fatigue syndrome." Shannon said "nobody in this room has chronic fatigue syndrome because there is no such thing." We have Myalgic Encephalomyelitis (M.E.), post-polio syndrome, cardiac conditions, cancer, or need some other correct diagnosis. Shannon also had documents showing that the Social Security Administration had tried to track CFS in the early 1990s by using the word "fatigue" as a marker. Instead of finding CFS patients, they came up with a lot of patients who had applied for disability because of cardiac disease and cancer. What a coincidence.

Now - this is just a TINY BIT of the testimony given during those two days. I was too sick to report on the whole meetings, as I have sometimes been able to do. You have to go to the website yourself, and watch it. There were three windows for public testimony: noon and 4 pm on the first day; 2 pm on the second day. (That's roughly 3 hours into the first day and at the end of the first day, and at the end of the second day.)

You'll find Pat's testimony at precisely the 3 hour mark (3:00:00) on the first day's tape along with several more of us. Pat got cut off abruptly after 5 minutes 30 seconds, but one of the public members later read more of her evidence about NIH's misallocation of funds into the record.

I don't think any of us who testified were "easy" on the government - nor had we been during years of CFSCC and CFSAC meetings that Mr. Anderson certainly didn't show up for.

My current written testimony can be found on my blogsite. I folded in both the submitted written testimony and the essay entitled "Orwellian NewSpeak", along with the quote from Peter White, into my five-minute oral testimony:

http://cfsknowledgecenter.ning.com/profiles/blog/list?user=32qw535d82un8

I have to agree with one thing that Mr. Anderson said - three years ago, when I first testified about the skewed data sets being produced by Reeves' new questionnaires, modeled after psychiatrist Simon Wessely's, the CFIDS Association of America was still cooperating with CDC on their public relations campaign. (That's where the 4-7 million estimate came from - it includes patients who are mainly a bit depressed and do not have CFS-Fukuda.) The PR campaign was lovely, but the only source for information was CDC's website, and if that's where you went for information, you learned "there are no tests and there are no treatments."

The CAA is now fully aware of the problems with CDC, I believe. They were just late coming to a conclusion many of us reached years ago, and unfortunately helped publicize the definition and questionnaires that are now such a problem. I would like to see them do more overtly to put a stop to the use of those questionnaires.

From years of listening to his testimony and reading his publications, I knew by 2006 that Dr. Reeves was no longer using CFS-Fukuda. Those questionnaires that he claims "operationalize" CFS-Fukuda diagnose something very different. As Dr. Leonard Jason's study has shown, the questionnaires leave out those who are seriously ill, such as myself and the original cluster outbreak patients, and instead include patients who should be getting treatment for depression, not "CFS". It is imperative that these questionnaires no longer receive the stamp of approval of the U.S. federal government. It is imperative that all who participated in that program be removed from CFS studies at CDC and NIH.

As I mentioned, I have testified about much of this before - about my fears that CDC and NIH were too cozy with British psychiatrists, about the failure to identify subgroups through biomarkers, and about poorly designed studies that should have been replaced on the CDC's website with better studies conducted off-campus.

Much of my previous testimony is available here:
http://www.cfids-me.org/marys/essays.html#cfscc

We used to get 50-100 in the audience at the meetings in the 1990s. In contrast, very few patients attended the CFSAC meetings between 2003 and 2008, after the rules changed.

It has been frustrating to have only five minutes to speak, frustrating to have to listen to misstatements and not be permitted to question them, and frustrating that the minutes would not reflect word-for-word what happened in those meetings.

Just the addition of video-streaming on internet has been a great change from the past.

But the testimony was a change, too. I believe we all know what is on the line. If CDC is permitted to go through with their plans to bring us in line with the UK's "NICE" guidelines (which Reeves actually mentioned!), our treatment will get even worse. Yes, that is actually possible.

At THESE meetings, the May 27-28, 2009, meetings, even the IACFS/ME (International Association for CFS/ME) called for an end to the current leadership at CDC with regard to CFS, an end to the questionnaires, and the use of Centers of Excellence and outside experts. They were not particularly easy on CDC or NIH.

I do not belong to a "national" patient advocacy organization in the U.S., but that does not mean I do not have organizations that speak for me. There are a number of excellent state and regional patient organizations out there. Both Pat Fero, of the Wisconsin CFS-ME Association, and Rik Carlson, of the Vermont CFIDS Association, joined me and Meghan and other advocates in writing a report for the Obama-Biden transision team on health care reform last December. It was chosen to represent my home state of Delaware on the White House's health reform website. You will find it here:

http://www.healthreform.gov/communityreports/delaware/delaware_19711.html

The Vermont CFIDS Association and the New Jersey CFIDS Association have each sponsored medical students to encourage more information about the biomedical research on our disease, and how to treat patients. PANDORA, which is mainly out of Florida but is becoming more national, testified at the CDC Stakeholders meeting and at the CFSAC, and both times made it clear we need the CDC's program on CFS to end. PANDORA has also been very creative in finding different organizational tools - a walk-a-thon with wheelchairs (and healthy wheelchair-pushers), an E-Bay auction going on right now, a contest for best video, and more.

There are also strong patient organizations in Northern Virginia, Massachusetts, Connecticut, New York, Charlotte NC, Chicago - way too many for me to mention.

And, of course, it was patients organizing in Nevada and California that created the HHV-6 Foundation, which has already held two pathbreaking international conferences on viruses and ME/CFS. (Note: Dr. Reeves was invited to last year's meeting in Baltimore but he refused to attend.) For information, see: http://www.hhv-6foundation.org

The same collection of patients helped get the Whittemore-Peterson Institute off the ground, with the driving force the Whittemore family, but a lot of work all around. The WPI is already finding success working with micro medicine, genetics, immmune and viral markers. They have a number of young scholars who are actually enthusiastic about our disease! Imagine that. For information, see: http://www.wpinstitute.org/about/about_mission.html

All of this was accomplished by patient organizations despite the apathy of the CDC and FDA.

I know that these patient organizations work hard with their own state legislatures and federal representatives, and an organization consisting mainly of patients and their caregivers has very limited resources. My own attendance at the CFSAC since 2003 was sort of a promise to my friends, because at the time I was better due to Ampligen and, after all, I could at least go down and report what went on. I can understand why active patient advocacy groups were reluctant to spend the money and the time to go to Washington for meetings where our input was summarily dismissed.

I would like to see an umbrella group form of these state and regional organizations, with each including a representative and not having one person in charge, paid or unpaid. I think that would be the quickest way towards a true national organization that would represent the grassroots, and in the future perhaps we can see more participation in the CFSAC meetings from those outside the DC area.

Finally, I support both InvestinME, an organization in the UK run by parents of patients and dedicated to information on Myalgic Encephalomyelitis - see <http://www.investinme.org> - and the National ME/FM Society of Canada - see <http://www.mefmaction.net/Default.aspx?Page=home>, to whom we owe the Canadian Consensus definition and guidelines.

I have met overseas advocates through the IACFS/ME, and as it increases its international visibility, the U.S. patient advocacy community can hopefully be brought into the history of M.E., and both problems and solutions from around the world.

So I also have hope for a direction I would like to see advocacy take in this country and the world.

And if I had one wish, it would be for the U.S. Congress to hold an investigation into what really happened with "CFS" research at CDC and NIH. If it ever gets opened up, they will find a public betrayal even worse than what happened at Justice or State.

All those state organizations out there: call on your representatives in Congress and tell them we need a congressional investigation into how British psychiatrists came to control the direction both CDC and NIH have taken towards CFS. We need an investigation into precisely who gains from the popular belief that CFS is a minor illess, if an illness at all - and who gains from the concept that CFS is a "medically unexplained syndrome", or MUS. Someone is gaining. It is not us.

As for whether patient advocates have stood up to CDC and NIH, all Mr. Johnson has to do is watch the video of the CFSAC meetings himself, and he can see that there are patient advocates who have always been there, speaking truth to power whether power wanted to listen or not. We haven't gone anywhere, and we don't intend to.

Mary Schweitzer

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CORRECTION:
Reading it again just now, I see that after writing CDC and NIH so many times, I once wrote CDC and FDA where I don't think that makes much sense. Oh well, too difficult to fix!




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