Suzanne Vernon Speaking in Colorado--Any Questions You Want to Ask?

[Cort]

The world does look differently to those who are severely disabled by ME/CFS and who have lost all ability to function normally, who have lost their homes and any potential means of ever supporting themselves, who have become isolated and abandoned by family, friends and their government. The CFIDS Association does not speak for them.

If this organization, who continues to say it advocates for us and continues to solicit our donations, cannot speak for the weakest among us, who will?

Cort, I think your insinuation that Dr. Yes has a skewed vision because of his very precise concerns is insulting.

Instead of continuing to spend such enormous efforts defending the CFIDS Association for not being that bad, your efforts would better serve all of us if you were to insist that these "features," which have been brought to your attention repeatedly, be immediately removed and a strong statement made against them.

I hope the CFIDS Association does NOT change its name to ME/CFS until they begin to speak for all of us and begin to draw a clean and distinct line against the damage the CDC and its misguided "research" has done to us.

In general I don't think they should be removed.When I read the CAA's stance on these subjects I find them to be quite nuanced and mild and careful to state that they only have limited value to some patients. I don't have a problem with that at all. This is a big population - some people with benefit from anti-depressants - does that mean that depression causes their disorder - obviously not.

If you want to figure what the CAA is doing its easy to check out their webinar series or read their ELinks. When last I looked I didn't see any Wessely's or Whites or Kuppevelds or Reeves etc. there. I see alot of Lenny Jason and other researchers and CFS doctors there. I see very, very little that Wessely would be happy with. I see alot that Dr. Klimas and Dr Peterson would be happy with.

I'm not saying that the CAA is everything to everybody at all! If you're from the UK and you're getting hammered with CBT and GET - you're probably not going to be happy with them. I would like them to be more aggressive on the advocacy front but to say they are espousing a psychogenic view of illness as Akrasia just did is not true.

No they are not completely anti-CBT - you're not going to get that from them and for many people that's not enough but they're not pro-CBT either; they have never stated its a cure for CFS and they have always drawn the line at it can help with some symptoms in some patients. They are certainly not calling for more CBT studies - they think that's been done to death.

Check out their research program to see where they stand on what's causing CFS.

 

[Cort]

Humm, here's a really stupid question, does anybody have any information on what Susan Vernon's talk was about?

How dare you George!

 

[George]

I know, I'm a cheeky little pup. (grins)

But like for real, what did Dr. Vernon talk about??? I can't find a reference to it on the CFIDS site. I don't care about politics or what have you, I'm a straight up information slut and I want it all however I can get it. (big grins)

So any info would be appreciated.

Thank you.

 

[urbantravels]

My mom went and told me allll about it. It seems it was a round-up of recent developments - nothing my mom mentioned was at all news to me - probably most of the presentation was drawn from recent CAA webinars since it all sounded so very familiar. Report on the CFSAC meeting, plug for the Biobank, and questions from the audience. I believe a big theme of the questions was "How can I get my doctor to have a clue?"

Dr. Vernon apparently stressed the enormous level of research activity of the past year and recent months and indicated that the audience should be very encouraged with the pace of developments. What exactly she said about XMRV, etc., I could not parse for you based on what came through the mom filter.

 

[George]

My mom went and told me allll about it. It seems it was a round-up of recent developments - nothing my mom mentioned was at all news to me - probably most of the presentation was drawn from recent CAA webinars since it all sounded so very familiar. Report on the CFSAC meeting, plug for the Biobank, and questions from the audience. I believe a big theme of the questions was "How can I get my doctor to have a clue?"

Dr. Vernon apparently stressed the enormous level of research activity of the past year and recent months and indicated that the audience should be very encouraged with the pace of developments. What exactly she said about XMRV, etc., I could not parse for you based on what came through the mom filter.

Thanks UrbanTravels. Yeah, mom filters what can ya do???? (snicker, grins)

 

[xrayspex]

I am all for once and for all making explicit that "fatiguing issues" of a generic and varied nature is one thing & is what the the CDC has been "studying" & implying is same thing that they started looking into back in 85 at tahoe-----thats one sort of chronic fatigue----then there is something that is viral related (either ongoing or hit and run) that is M.E. most likely and what really happened at tahoe too most likely and is also perhaps xmrv whatever that turns out to be------I am interested in the latter and not at all the former and I do not relate to the former, I know my psyche and I was a top athlete before I got disabled by whatev's happend in '89 to me, I still exercise as much as I can, walking cus too rigorous gives me PEM and that ain't good......so dont need help in the mental dept.

so, will the real chronic fatigue please stand up? the CDC seems to want to stay with the neurotic first type of CF given Doccie Unger's behavior, ok, good to know where they stand. Now, if CAA is parting ways with CDC and not going to put CBT/GET education stuff for docs on their site and are going to get behind M.E., hey I am cool with that, I just want all the players with CFS to be explicit about where they stand and not to muddy the waters by mixing them up.

It helps me to think of things this way when people want to muddy the waters, what would be your first line of defense to cancer and aids patients? you wouldnt be talking a lot about CBT etc they get treated like they have a real disease and get respect, thats all I want from organizations, same consideration, any mention of therapy and exercise I wouldnt want to be emphasized any more than it would be in a holistic Tx plan for those other illnesses.

Cort, I like your site and appreciate you having made it and for me it would be helpful too if as we all go forward you were just always real explicit with us on which form of CFS you are trying to represent.

peace
out
xrs

 

[Angela Kennedy]

That's not true either - the CAA has never stated that CBT or any behavioral therapy or exercise or whatever is a cure for CFS and they've been very careful to state that it has only limited effects and they vigorously protested the CDC starting to do CBT studies. That sounds pretty mild to me and I think you're putting words in the CAA's mouth.

Exactly how am I putting words into the CAA's mouth?

 

[*GG*]

If this organization, who continues to say it advocates for us and continues to solicit our donations, cannot speak for the weakest among us, who will?


Gracenote, Good point!

 

[voner]

Hey:

I was at the meeting in Denver, Colorado with Dr. Vernon. And most of it was as has been stated -- a summary of recent biomarker research, especially the research that CAA has funded. It was quite helpful for me -- especially since I had just seen presentations the CFSAC presentations online by Dr. Nancy Klimas, and Dr. light. She reviewed their data.

She also emphasized the importance and her emphasis of trying to tease out different subgroups of ME/CFS/FMS/Gulf War illness XMRV or no XMRV

It lasted for three hours. And she took questions until they finally kicked us out of the room -- she appeared willing to take questions forever.

Outside of the science (she has a gift for transferring complicated science across to nonscientific people), she did address the recent patient ACT! e-mail/fax/phone call campaign I would guess half the audience, probably more, was not aware of the campaign. her feedback was similar to what we're have heard on this forum. The scientists were agitated -- Dr. Vernon seemed to be a bit agitated/perplexed with the scientists comments, and she appeared (TO ME) to be fully supportive of the results of the campaign. She really did come across as extremely patient oriented.

If I find my very terse and poorly scribbled notes -- and find something novel -- I'll post it on this thread.

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She did talk about something that confuses me a bit -- I'm hope somebody can fill me in here.. she talked about a $1.2 million study that was being funded that was putting together the WPI, CDC, NIH to work out all their differences. Maybe my memory is slipping here -- but it didn't seem to be the blood working group -- because she mentioned that in early November they were meeting to work out the details of how to proceed with the project.. I'm hope I've not spreading misinformation here -- but that's what I seem to remember
///////////////

And since I might be spreading rumors -- I do remember one other thing she mentioned that the the Dr. Light(s) of Utah had found some things that they evidently were not allowed to talk about since they were in a legal "quiet period". This indicates that The Lights have found something that can make a product of or patent or . ??? any ideas out there?
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she also did explain the detailed biochemistry (I don't know the technical term here) of vaso-constriction . I thought that was pretty interesting. Too bad I can't remember the details -- maybe someone else can.

I had never interacted with her in person. I was very impressed. No paternalism. no ego ( that says a lot -- a unique research scientist)Lots of empathy. Every question that was asked was met with a response that validated the person that asked the question, no matter how seemingly nave the question was. And vice versa -- no matter how detailed the question was and complicated -- she would answer it and then explain it at a more simple level also.

One week later -- that's what I remember I was hoping somebody else would report in, so I wouldn't have to embarrass myself.

 

[ahimsa]

voner, thanks for sharing your thoughts on the talk. Very interesting!

she also did explain the “detailed biochemistry” (I don't know the technical term here) of vaso-constriction . I thought that was pretty interesting. Too bad I can't remember the details -- maybe someone else can.

I was interested in this little bit that you mentioned about vasoconstriction because I believe it is part of the problem (always? most of the time?) in people who have Orthostatic Intolerance. At least in my case it seems to be there. I have a type of Orthostatic Intolerance called Neurally Mediated Hypotension and one of my prescription drugs is a vasoconstrictor called midodrine (brand name Pro Amatine).

 

[jspotila]

//////////////
She did talk about something that confuses me a bit -- I'm hope somebody can fill me in here….. she talked about a $1.2 million study that was being funded that was putting together the WPI, CDC, NIH to work out all their differences. Maybe my memory is slipping here -- but it didn't seem to be the blood working group -- because she mentioned that in early November they were meeting to work out the details of how to proceed with the project….. I'm hope I've not spreading misinformation here -- but that's what I seem to remember…
///////////////

I think this refers to the NIAID study that will be run by Dr. Lipkin at Columbia. It is separate from the blood safety working group. He will be collecting samples from 4 locations in the US, then blinding the patients/controls and sending identical sets to several labs, including WPI.

 

[voner]

jspotila:

thanks. that sounds like it.

 

[George]

Voner!!!! Lick lick slurp, slurp. (there now you don't even need a bath today, grins) Thank you so much for posting the information!!!!

 

[voner]

George: you're too funny!!

I found my little tidbits of notes on the talk by Suzanne Vernon and the extended questions thrown at her the few things that might be of interest are:

 ahimsa: here's what my notes say about vasoconstriction:

Brain (high lactate levels in the cerebral spinal fluid) -> mitochondrial dysfunction -> inflammation (cytokine cascade, etc. - I assume) ->= oxidative stress -> vasoconstriction

I do remember her saying something about certain products of oxidative stress that go into the bloodstream and then attach to the walls of the blood vessels and then that seems to cause a physical constriction in the blood vessels. Hopefully -- somebody that understands this better, or was at the meeting and took notes on this might fill in the details. Also - at the end of the post I put a web link to most of the slides that she showed. They fill in most of the details of this.....

 Early in her research data presentation, she showed s few bar graph slides and she said this demonstrates how there is Gene expression that results in an inflammatory process occurring in the 48 hour period after a ME/CFS patient performs aerobic exercise -- kind of a visual demonstration of postexercise malaise". I hope I got that part right. But the interesting thing I thought was that she said that if you aerobically exercise ME/CFS patients, and then 24 hours later exercise the patients again -- back can cause the total collapse -- and the various biomarkers etc. really skyrocket sound familiar? I was taken with this slide because it was a clear and simple way to show postexercise malaise", which is hard for healthy people understand. They just think it like having sore muscles after a heavy workout


 There were numerous clinical questions, and Suzanne did mention that she was not a clinician, but she had picked up a few "clinical pearls" from Dr. Cindy Bateman.. what those pearls were -- I don't remember.. but it did give me the impression that between Cindy Bateman, the DR. Light group, Dr. Singh, etc. in Utah they were obtaining valuable information between the interactions of the clinicians and researchers. I suspect that is true also with Dr. Nancy Kilmass group, etc.


 and then in our discussion of Patient Activism - which she was actually pretty darn supportive of - in my opinion.. she mentioned that it might be the valuable to look into a group called "Circle of Moms"... which if my foggy memory is somewhat accurate -- it sounded to me that the Circle of Moms group/site was similar to the Patients like Me" software that Cort want/wanted to put together. Here is the site:

http://www.circleofmoms.com/

i haven't looked inside the site...

here is a CAA Link that you can download - it contains most of the slides that Suzanne showed, including more detailed information about vasoconstriction, and the exercise-induced "biomarkers"..

www.cfids.org/webinar/slides-100510.pdf

That's it! Summary - just like has been posted before - mostly info like in the OCT 5th CAA Webinar (which I didn't see)..

WOOF!

 

[Cort]

I use Wii Fit Plus - which has a balance board. Just standing and adjusting my balance seems to have helped me with some of the "wobbliness" that has been part of my challenges. There are some gentle stretches, LOW intensity things - and they are all short. So it fits what a physical therapist told me to do - one minute of moving, then several minutes of resting and recovery. I have found it HAS helped me to keep some muscle tone.

We also have Wii Fitness Coach - which isn't as great of a program, but I do some of the core training (Pilates type exercises lying down)...however I can't at all do their cardio section...which seems to frustrate the program (I keep picking "flexibility" and "core" and "yoga" to work on, and it keeps suggesting I do cardio. We agree to disagree).

We also have Wii Active. That is more aggressive (although there is an "easy" setting). It's frustrating because most fitness programs focus on aerobic/cardio work...which is what I have to limit. I do better with walking, Pilates, gentle stretches, and upper body resistance work with stretchy bands. But the Wii has helped me. I LOVED exercise before getting sick...so I need something that helps me do tiny bits and not push too much. And I'm only able to do that now, because I'm not in a bad crash or flare at the moment.

I've got to check this out. I wonder if it retrains the brain how to balance the different parts of the body. One of my pet theories is that the brain has trouble putting the different parts of the body efficiently.

I opened up a new thread on Wii http://www.forums.aboutmecfs.org/showthread.php?8356-Wii-Board-for-ME-CFS&p=133041#post133041