Yesterday's question and answer session was a grinding bore. The tone was set by an incredibly irritating moderator from the UK. Who was this guy? Where do they find these people? He was like a bad English actor, a bit drunk, a bit incoherent. The session quickly evolved into a series of incredibly stupid questions. Each questioner, deeply ignorant of the subject, felt the need to say whatever came into their heads. And then there was the obligatory researcher griping by a woman who needed to have the door closed on her publicly. These guys and gals have no shame. They have no ability to restrain themselves, and this inability allows the situation to fall apart very quickly. Towards the end, an oncologist from Buffalo, pictured above, asked the only good question of the day. His question got some of the members of the panel to focus on what is at hand. This fellow's name is Dr. Michael Snyderman. Hire this guy - he is great.
Hopefully there were other people at this conference like Dr. Snyderman - men and women who can identify the problem and focus their minds on it. Make no mistake, in spite of the circus idiocy of this conference, the WPI is building allies, accumulating collaborators. It is obviously slow going, but it is happening. The WPI is holding all the cards. They just need to keep doing what they are doing, picking up the smart folks and forgetting about the rest. Seeing Dr. Snyderman in this sea of crap gave me hope - and no, the Patient Advocate had no idea about him previously.
Absolutely true. The moderator, Dr. Jonathan Stoyle (National Institute for Medical Research, UK)was a shame. All the Q/A session was disgusting.ReplyDelete
Thanks for this,ReplyDelete
and here's the you-tube play-list for those that missed it.
Take plenty of deep breaths, and remember to relax your muscles, this video did seem to make mine very tense.
Stoye was a complete bulky holding the microphone & stopping judy. Myra mclure needs the door slammed shut on her publicly. The whole q@a was a disgrace, great work by mindy asking the questions that needed to be asked.ReplyDelete
And great work by judy for keeping her cool.
It took me till the wee hours of the morning to calm my insides down after witnessing such a spectacle as the Q & A portion turned out to be.ReplyDelete
Dr. Stoye and Dr. McClure were both so rude and condensending I really give credit to Dr. Mikovits for not slapping them silly.
Minday was spot on and I am looking forward to both her and Hillary Johnsons report. Imagine what they saw and heard there that we were not privy to!
Talk about attitudes! Whew! The air was full of attitude and ego.
It is just mindboggling to me that on top of all the ignoring and indignities we have had inflicted upon us by the "powers that be", that Holmberg has still done **nothing**.ReplyDelete
We are almost a year out from the CFSAC meeting where he lip serviced everyone with how the blood safety people had been up all night dealing with the XMRV news. How there would be no repeat of the HIV nightmare. What a joke. At the time, I thought that if nothing else, the blood safety would drive this issue and we'd get some help.
It's still just the WPI, fighting the fight against all odds. I'm starting to despair that nothing is going to change in my lifetime.
I watched it via the webcast and thought it was very dissapointing. It seemd certainly more about ego's than giving us solid information. The only positive things i took from it were the ever impressives Mindy's line of questioning and how much we are all depending on Judy to ignore those other idiots.ReplyDelete
From his age, specializations, publications and experience, I'm guessing (and, this is only a guess) he is Dr. Ellis Levine, haematologist and oncologist. I would expect a haematologist to have a special interest in attending this meeting. Can anyone on-line either confirm this hypothesis or shoot it down?ReplyDelete
McClure was indeed condescending but it was only to be expected. I was really amazed at the guy in the front row (don't know name) who was insisting on XMRV/prostate cancer connection be "divorced" from the XMRV/MLV/CFS issue. I took that to mean: "How dare you compare this serious male illness to the one that depressed/crazy women get".ReplyDelete
Oncologist from Buffalo says, "Since you can't give the virus to a person to reproduce the disease and fulfill Koch's postulates, how do you expect to answer the question if you don't do an interventional study and show improvement?" Good question indeed.ReplyDelete
I didn't find the Q and A boring at all. I agree there was a lot of posturing and egos (John Stoye — how did he rate a "get out of jail free" card?), but also good information. Rewatching the program and reading the transcript has allowed me to see things I missed the first time. Also, it's good to get a sense of who the "players" are. I've already emailed Dr. "leads the imagination astray" Mellors to ask what he meant by "transferred parenterally." Lots of fun to be had.ReplyDelete
Thanks for your great review...I laughed aloud from my bed when I read the title to your article. I knew exactly what you meant - hire that guy! Just says it all! Thanks for sharing your impressions, it's a great relief to hear that I wasn't alone in my dissappointment. Stoye is certainly a baffoon!ReplyDelete
Sorry guys, but I expected that nothing would come from this conference and indeed, nothing did come from this conference. Too many egos and too many people there who were determined to muddy the waters on Retrovirus research - Our US idiots, the CDC and the UK idiots, McClure and company.ReplyDelete
This was just a show and a wasteful show at that. Further, expect nothing to be done that Dr. Collins directed be done. It is the people below him that have been in their positions for years and decades that make things happen or drag their feet long enough for such that the Head person leaves and whatever they wanted implemented did not get implemented. Just the way Washington works (and doesn't work).
There are just too many people who do NOT want any real research done on CFS/ME or this new family or Retroviruses. They are all bound and determined that doubt be cast and nothing be done. But that's NOT how it's going to work THIS TIME AROUND. Now we have the Internet and we have millions of sick and advocates that will not allow research to be dropped, damaged and neglected. This isn't the Defreitas period pre Internet when a very serious research study could be killed off by the CDC and then funding taken away by the NIH for any further research.
So, we sick and our advocates must continue to scream and carry-on and beat on the officials. We also must go public and ensure that every person in the US and abroad is aware of the 30 plus years of deliberate damage and neglect to retrovirus research that may well have helped cure many diseases (not just CFS/ME/FM) but also the cancers. When the public finds out that this retrovirus family has been in the nation's blood supply, unchecked because of damage control by the Feds, and that the virus can do extreme damage THEN and only then will action be taken. The public, journalists, Congress, muck rakers, public interest groups, and Federal oversight orgs WILL finally understand and force the hand of these Federal/UK idiots. Those idiots will not be able to foot drag for the next several decades as done in the past.
So, please scream, yell, email, and hit the new Major Media Campaign - ME/CFS Worldwide Patient Alliance - http://www.causes.com/causes/511536
Read what this group is up to, join and donate. In the next week or so this major ongoing media campaign will be moving to its own website. This media campaign will be the vehicle with which WE sick are able to craft the message that must get out to the public, etc. and craft it in ways that every single person can understand - and understand how it impacts on them and their family and not just a few million CFS sick.
I think you all saw that the governments will not do much to help us. And that means we must do it ourselves. We must push to get the funding for research and clinical trials. We need to ensure that the blood supply is protected since our government is more concerned about damage control than actually protecting the public. We need to get the right person into the new CDC/CFS job and not just another Reeves clone or a "roll over and play dead on command" type of person.
Hit the Causes link and join/donate. When the move to the new website is made, thousands/millions will follow and learn. And the newspapers like the Wasington Post, New York Times, TV, journals, etc. etc. will be handed information that they can understand and use as speedy background for their stories.
We have no real choice but to force the issue via very public means like a major AD in the Washington Post for starters. Then next the New York Times, and so on down the line.