Discussion in 'General ME/CFS News' started by Sasha, May 22, 2013.
How about he trades places with one of us, and then see how he feels about that.
That's a she.
I suspect what she meant was, why do more research on Empirical or even Fukuda since it doesn't tell us anything about ME.
Yes. she was stressing that without the correct criteria, research is useless. She was trying to push them in adopting the CCC criteria as a start since it is preferable to Fuduka and Oxford..
I think that it was Dr. Friedberg who weighed in with comments about the CCC's having too many symptoms and the ICC's having too many symptoms and selecting psychiatric disorders. (I wish that Dr. Friedberg and Dr. Friedman had more distinct names.) The ICC excludes primary psychiatric disorders.
The whole show is to me a tug of war over reality, what is real. Our side is winning the arguments now but those on the other side aren't conceding victory because they control the power--either the rules or the money and resources. They can still hold up the works and gum up the works with poorly designed research projects--those drive me to despair much more than no government sponsored research efforts at all. I was pleased to hear the hard-hitting critiques of the CDC study, which does not include a two-day exercise test to document PEM. Unger was vague about post-exertional cognitive testing as well.
I noted in passing that in the CDC study a morning cortisol would be taken, but know that that is the most useless time of day to pick up the kind of low adrenal function many of us have. We should not be tested the same way that those with adrenal disease and adrenal failure are tested because that is not the problem. Our problem typically is not absolute organ failure. It is that the HPA axis flags and underperforms during the day. I am talking about this one test area because it is something I know about. Far more appropriate testing would either be the 24 hour cortisol test or the saliva test 4 times a day.
Again and again I have seen the CDC going round and round wasting time, resources, energy and hope, doing studies uninformed by our experts or the knowledge already in the field. All of this creates such delay and muddies the water further for the next efforts. In my opinion, the CDC does not seem able to function scientifically. I wish these sorts of public employees were fired for both their lack of results and lack of accountability to the patients who are suffering.
I feel good though about how our people stood up for us today and weren't led astray by the excuses, circular logic, distractions or abstractions brought in to make us lose our way and stand yet again on the sidelines of our lives, caring more for other people's comfort than our own, more for whether other people think we are nice and no trouble than for what we need to insist on, because it is true and necessary.
I thought at the previous meeting, Mary Ann Fletcher made a comment about the CCC versus the Revised CCC, and they picked the Revised CCC.
I can easily believe it's an innocent mistake because I think that healthy, happy imagery portraying patients is quite prevalent in public information about serious disease. I think the people designing their page could easily think, 'Let's not distress patients about how they might end up by showing other patients in bed on a drip', even if they were aware that that's how bad it could be. Take a look at Cancer Research UK's homepage, complete with radiant Angelina Jolie (who has just had a preventative double mastectomy):
Here's the front page of NHS Choices - everybody is healthy-looking and smiling:
I'll stop believing it's innocent if they don't quickly change it, though!
Sing, I am going to have to watch all this on video when it comes out as its the wrong time for me, and I haven't seen the details of the CDC study, but ...
If the CDC are again choosing poor or useless tests to run, and ignoring the evidence in designing their study, then there are two choices as to why. The first is entrenched incompetance at the CDC. The second is deliberate incompetance at the CDC. Which is it?
Dr. Unger is bogged down using questionnaires. She now acknowledges that no one case definition is going to solve the problem, and she wonders which symptoms go together. Without a panel of experts to guide her, she's hoping that treatment trials will guide the process, that patients will be stratified according to which subgroups respond to therapy. Of course, she doesn't mention which case definitions we'd use to design those treatment trials. “We have to be creative,” she says. “We can't do all this at once!”
I remember Dr. Unger saying something like, It's early times, or We are just getting started, on a few occasions. Also, It's complicated, and There are many ways to look at this. My feeling was that these kinds of statements help defuse anger and bring listeners around to a tolerant attitude. She, and they, the CDC, then don't seem like a formidable opponent or entrenched obstacle, but reasonable human beings to work with, YET, what are the facts on the ground? Our advocates in this meeting are not letting consequential actions by the CDC pass or slide, but confronting and objecting to the major things they note which haven't been or aren't working. I feel they are doing a very good job within the time constraints of this meeting.
Thank you, Alex, for being willing to go through the video later. You will be able to be more careful and precise in your comments than I. What obscures my mind is a fuzzy memory for details. Then you see the winged dragon for my avatar--that is for my capacity for fire and taking to flight in a battlefield. Getting mad or being inspired. Such characteristics are not well supported with PEM!
But most of us are like this, and still we have to try to get clear and be assertive. The people who are supposed to help us and do the thinking are obscured for their own reasons--institutional, personal, control issues, or ignorance. We need to get hold of what is going on and speak out.
I would really love somebody to ask the CDC "Look you are all smart people, you didn't get here by been stupid. What the HELL is the real deal, why are you sabotaging the progress and going around in circles and looking inept and we all know you cannot be that stupid and holding the jobs you do. What is your REAL motive to hold back research??????!!!!" I am an extremely logical person and the current situation just does not make sense to me!!! And IT IS NOT MONEY because the trials they do achieve to start, are half Ars structured and do not account for all we know today.
I would like to adopt Mary Ann Fletcher as my mother and Eileen Holderman as my sister.
I think it's typical bureaucratic buffoonery tied to arrogance. They consider themselves to be THE authority on disease, so any work they didn't do isn't really valid. Since they bumbled around in psycho land with Reeves all those years, they're 20 years behind the research, but still think they have to do all the groundwork themselves.
If they would actually read all the recent research and talk to current experts (not only each other), they could forward research in the field. Since they choose to learn everything for themselves, they'll be at least 10 years behind the forefront of medical knowledge on ME/CFS for another 10 years.
I had some hope that Dr Unger would bring them into the 21st century of ME/CFS research, but I'm coming rapidly to the conclusion that doing so would force the CDC to admit how badly they bungled ME/CFS info for so long and so they won't catch up until everyone whose toes might be stepped on is dead. Losing Reeves just wasn't enough.
When I was a young female engineer in the '80's we used to say, "To really make progress, we're going to have to wait for some men to die." And in fact, things are much better today for my daughter, an engineer. All the old guys who couldn't cope with the notion that women can actually be good engineers have retired and/or died. I think we're in the same boat with the CDC -- all the folks who laughed at and ridiculed us at the CDC all those years are going to have to retire or die before they can make any progress in the field.
The problem is that everyone but us (and a few others who are similarly devoid of 'credibility,' but for far more understandable reasons) also consider them to be the authority, which means they are the authority. For many other diseases, this probably makes sense. Not ME.
It's like PACE. It doesn't matter what we think, because what we think doesn't matter. It's appeal to authority, but exercised by people who like to say that this is a faulty way to establish a hierarchy. We talk about PACE as being 'discredited' as though anyone but us actually thinks that.
The CDC has the power to not worry about being seriously questioned, and that doesn't change easily. It is because of them that there can not be any biomarkers, because their definitions have precluded cohorts where biomarkers can be consistently found. I suppose it would be strange to think of this as being by design, yet I have difficulty coming up with any other answer.
No biomarkers, no pathophysiology to target. No consistent response in drug trials. So the FDA couldn't provide much help even if they did want to.
How does this change? That's the question. For now, the CDC is the authority, and that's the paradigm in which we have to think, not the one we'd like to think exists.
Mary Dimmock: Stop this Babel! (all the different languages of sets of criteria)
Who is the guy who defended the Oxford by saying it's part of the state of science. He's the one Holderman accused of playing word games.
I wish now I had been up to preparing something. Had I known the CDC was going to be hearing testimony, I would have liked to give them an earful.
I thought there was some very good representation by patients in that last bit - Mary Dimmock, Bob Miller, Lily Chu spring to mind.
What's happening next? Is it discussing the prioritisation stuff? I haven't heard everything today so I'm a bit at sea.
Next is a presentation from levine and Corbin regarding how to get clinicians involved.
At 2:45 there is the public Q&A.
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