The IACFS/ME Conference in Ottawa: Sept 22-25, 2011

[Boule de feu]

Hi - I was at the patient day on Thursday. It was great.
I know everyone will get full coverage soon here and from the event organizers but maybe some people are impatient for latest like me.
I asked Dr Klimas a question after the formal Q & A (what research other than her own was looking most promising to ME patients?) and recorded it Her answer is about 7 minutes and it is here: http://www.box.net/shared/4xu9ex3khgp6fb7sts4c
I was slow on the record button but the context becomes clear
Let me know if any problem accessing - I think I set up security right.
Background: I was gathering stuff for the next edition Of MEAO (ME Association of Ontario) newsletter (mi Oct).. so we'll probably have some transcripts of this and other reports ... later.
The other voice you'll hear (besides me) is of Dr Dr John L Whiting whose comments to the DSM-5, Sunday 19 June 2011, got a lot of circulation on internet. "CSSD - the creation of a new weapon, a new law!"

.... I guess I can erase that XMRV positive from my profile now

Thank you for this, Rafael.

"Lipkin is definitely on board..."

Pneumonia, pregnancy and deep coma... let's push the reset button.

I love her enthusiasm and her drive.

She is so involved and convinced that she will get to the bottom of things.
She gives me hope. Never give up. =-)

 

[Cort]

I heard online saying that Chenney is presenting his MAF 314 result on this conference. How come his work is not listed in the agenda?

Its a poster. Lots of interesting work does not make it into the conference presentations.

 

[Cort]

I don't know if I'm reading Cort's very interesting Twitter correctly but see Clauw is changing the name of interstitial cytisus to reflect it's CNS origin and wonder if this could tie in (the bladder etc are smooth muscle) with Shapiro/Lights muscle abnormalities = problem of the nervous system structures called dorsal root ganglia ? The thought is keeping us busy speculating with problems in the pelvic area being very common here. Any thoughts much appreciated.

I don't know if he ties it into DRG - very interesting about the smooth muscles, though - that could indicate autonomic nervous system problems. Mangan went to IBS, Interstitial Cytisus, TMJ, etc conferences this year - he said they all were talking about the ANS and they all sounded like CFS patients, just a bit different.

A New Working group called the CoMorbid Pain Working Group has just been formed at the NIH which includes CFS to look at the interconnections of all these diseases. Mangan says the group has high institute support.

 

[Cort]

Peterson - Australia Connection

Dr. Peterson has apparently a strong connection with researchers at Bond University in Queensland Australia lead by Dr. Staines. That group has 5 posters at the conference - all prelminary data suggesting that

• MECFS patients have unusual immune responses to vaccination and vaccines may contribute to the disorder
  
• the genes involved during pregnancy may be differently expressed in ME/CFS. They investigated this because many women with CFS feel better during some stages of pregnancy
  
• The purinergic system was targeted by the Lights in their gene expression studies and the Staines/Peterson studies thus far suggest that was correct
  
• microRNA expression in people with MECFS may be shutting down perforin activity in NK cells and interferring with cell suicide (used to kill infected cells)
  
  

 

[Boule de feu]

I don't know if he ties it into DRG - very interesting about the smooth muscles, though - that could indicate autonomic nervous system problems. Mangan went to IBS, Interstitial Cytisus, TMJ, etc conferences this year - he said they all were talking about the ANS and they all sounded like CFS patients, just a bit different.

A New Working group called the CoMorbid Pain Working Group has just been formed at the NIH which includes CFS to look at the interconnections of all these diseases. Mangan says the group has high institute support.

Too bad for Dennis... Like you said he has done so much in such a short period of time.

I'm not surprised by his comment. Many of us do have all of these co-morbid conditions. I'm not surprised these patients are very similar to us... it is us! ;-)

 

[Cort]

Too bad for Dennis... Like you said he has done so much in such a short period of time.

I'm not surprised by his comment. Many of us do have all of these co-morbid conditions. I'm not surprised these patients are very similar to us... it is us! ;-)

The good thing is that these other fields appear to be slowly realizing thatand hopefully findings in one field will inform findings in other fields. Put all these fields together and you have alot of resources.....I think the new Working Group is a very positive step....Clauw, as mentioned earlier, believes a similar problem pervades many illnesses - not just the so-called morbid disorders - and the medical field is on the way to realizing that and that it costs the system an enormous amount of money.

10% of chronic pain patients are responsible for 90% of costs. They are resistant to opioids (which Clauw believes are way over prescribed) and other treatments.....Clauw noted the the opioid receptors in FM patients brains are already filled up.

 

[Anne]

Thanks so much for reporting, Cort!

Anything on the new treatment guidelines being developed by 1) the IACFS/ME and 2) the ICC group (apparently these are two parallel but somewhat overlapping developments)?

 

[Dolphin]

Thanks so much for reporting, Cort!

Anything on the new treatment guidelines being developed by 1) the IACFS/ME and 2) the ICC group (apparently these are two parallel but somewhat overlapping developments)?

The treatment guidelines are in the last section of the conference as I recall - should be covered soon.

 

[Enid]

Thank you very much for answering my question on smooth muscles Cort - yes of course under the control of the ANS. So too the "hollow organs" - blood vessels, gastro tract, bladder, uterus iris, some kidney cells etc. So many here have these problems so we speculated.

Have a good trip home Cort - so much for you to take in from the Conference.

(Forgot to mention respiratory tract smooth muscle)

 

[CBS]

Cort,

You wrote in a tweet

Jones proposes that sense of self is interrupted by constant barrage of signals from body....self becomes body sensations in #CFS

Which Jones were you referring to? And could you elaborate on the rest of Jones' comment? I find this statement quite shocking and I'm trying to put it in context. I imagine that most, it not all, serious diseases when left untreated would eventually result in a "barrage of signals from the body."

 

[Dolphin]

Cort,

You wrote in a tweet

Jones proposes that sense of self is interrupted by constant barrage of signals from body....self becomes body sensations in #CFS

Which Jones were you referring to? And could you elaborate on the rest of Jones' comment? I find this statement quite shocking and I'm trying to put it in context. I imagine that most, it not all, serious diseases when left untreated would eventually result in a "barrage of signals from the body."

Sounds like James (Jim) Jones who worked alongside Reeves and is still there. He wrote a paper previously buying into Peter White's interoception theory.

 

[ixchelkali]

Hi - I was at the patient day on Thursday. It was great.
I know everyone will get full coverage soon here and from the event organizers but maybe some people are impatient for latest like me.
I asked Dr Klimas a question after the formal Q & A (what research other than her own was looking most promising to ME patients?) and recorded it Her answer is about 7 minutes and it is here: http://www.box.net/shared/4xu9ex3khgp6fb7sts4c
I was slow on the record button but the context becomes clear
Let me know if any problem accessing - I think I set up security right.
Background: I was gathering stuff for the next edition Of MEAO (ME Association of Ontario) newsletter (mi Oct).. so we'll probably have some transcripts of this and other reports ... later.
The other voice you'll hear (besides me) is of Dr Dr John L Whiting whose comments to the DSM-5, Sunday 19 June 2011, got a lot of circulation on internet. "CSSD - the creation of a new weapon, a new law!"

.... I guess I can erase that XMRV positive from my profile now

Rafael, thanks for this. It's a real upper after a week of downers, and made me feel more hopeful. It was almost like being there. Interesting question you asked, too.

 

[ixchelkali]

The only bad news to come out of the conference is that Dennis Mangan, head of the NIH effort on ME/CFS is retiring. Dennis was like a breath of fresh air, he immediately sat down with patients, changed the website name to ME/CFS, put up a ListServ, re-energized and expanded the CFS Working Group, got the State of the Knowledge Workshop going and initiated the CASA project....

He is retiring on Oct 31st because of family matters. He did not intend to leave so quickly. It will not be easy to replace someone with that kind of initiative.

The federal officials in charge of ME/CFS have been completely changed over the past year and a half. Vivian Pinn, in charge of the Office of Womens Health Research which CFS resides under at the NIH retired Aug 31st, Eleanor Hanna left earlier this year, Unger replaced Reeves and now Mangan is retiring.

Mangan said the acting director of the Office Of Womens Health is completely in sync with his plans which is good. Hopefully they will find a good replacement for him.

Darn! Mangan was a breath of fresh air at the NIH, and I was starting to have hope for their program. I hope he's right and it doesn't end with his retirement. We just get somebody decent and they leave.

 

[mellster]

I am really interested in the smooth muscles stuff as well. Knowing that pathogens might be well at play in IBS, it is also possible that they aren't or at least not forever. My IBS feels like my smooth muscles aren't smooth at all and constantly misfire or cramp in the gut so I get aches and a feeling totally opposite to what would be called a "fluid" body (if that makes any sense). Otherwise food moves through fine and gets reasonably digested, so I hope there will be a way to "calm" the ANS (I don't have any IBS/cramping at night) during crampy hours.

 

[Cort]

Cort,

You wrote in a tweet

Which Jones were you referring to? And could you elaborate on the rest of Jones' comment? I find this statement quite shocking and I'm trying to put it in context. I imagine that most, it not all, serious diseases when left untreated would eventually result in a "barrage of signals from the body."

Jones from the CDC on interoception. It was a very strange study looking at signals going into the insula I think. About all I understood was that it suggested that sensory information was flooding the brain at high rates - that was the easy part. There was alot on self/non-self - honestly it was almost incomprehensible.

Miller from Emory/CDC who presented it said he didn't understand it either. The study was so 'different' that I imagine that it will get little play simply because few people can figure out what he's talking about. I imagine that Jones will be retiring soon and the CDC is giving him his last shot.

 

[Cort]

Darn! Mangan was a breath of fresh air at the NIH, and I was starting to have hope for their program. I hope he's right and it doesn't end with his retirement. We just get somebody decent and they leave.

He's very happy with the acting director and with the members of the CFS Working Group - so however comes in will have a good start. It certainly is a shame for us to lose him. We'll just have to hope that someone good steps in...You never know...

 

[CBS]

Jones from the CDC on interoception. It was a very strange study looking at signals going into the insula I think. About all I understood was that it suggested that sensory information was flooding the brain at high rates - that was the easy part. There was alot on self/non-self - honestly it was almost incomprehensible.

Miller from Emory/CDC who presented it said he didn't understand it either. The study was so 'different' that I imagine that it will get little play simply because few people can figure out what he's talking about. I imagine that Jones will be retiring soon and the CDC is giving him his last shot.

Ironic given the amount of self delusion it must have taken to devise this twisted piece of self-serving BS (http://www.cfids-cab.org/rc/Jones-4.pdf). I definitely could use some of what he's been smoking.

 

[Enid]

Wow ! and I thought we had the prize psychobabblers here.

 

[Dolphin]

2009 and 2007 conference DVD sets

http://digivisionmedia.com/lectures/iacfs/iacfs-2009-full-conference-set/ - $299

http://digivisionmedia.com/lectures/iacfs/iacfs-2007-full-conference-set/ - $149

 

[mellster]

PHILADELPHIA, Sept. 26, 2011 (GLOBE NEWSWIRE) -- Hemispherx Biopharma, Inc. (NYSE Amex:HEB) ("Hemispherx" or the "Company") announced that it presented new data on a blood test for Chronic Fatigue Syndrome (CFS). CFS is a severe disorder consisting of profound fatigue and a variety of other debilitating symptoms that affects up to 4 million Americans. CFS places an economic burden on the Unites States estimated at more than $9 billion annually. The data presented at the IACFS/ME Biennial Conference held September 22-25, 2011 in Ottawa, Ontario, Canada is based on Chronix Biomedical, Inc.'s ("Chronix") technology, which analyzes DNA released into the bloodstream by dying and damaged cells and has the potential to detect genomic alterations unique to diseased cells. Previously, Chronix utilized Next Generation Sequencing (NGS) to generate sufficient DNA sequences to provide the statistical power to identify alterations in blood DNA from patients with breast and prostate cancer vs. normal healthy controls. The aim of this recent CFS study was to find signature DNA sequences from patients with CFS compared to healthy controls with respect to their diagnostic predictive value, as well as, to potentially provide new insight into CFS biology. DNA extracted from serum samples of CFS subjects and normal healthy controls was sequenced and compared to the human genome. A total of about 10,000 high quality sequence reads were generated from each serum sample and four genes were identified by Multivariate Regression that separated CFS patients from the normal control group with a c-value of 0.95. These results support additional studies with a larger CFS cohort using more powerful Massively Parallel Sequencing platforms with the aim of reduction to validated clinical assays for the diagnosis and evaluation of CFS and to explore whether the technology can be used to identify how different persons with CFS will respond to Hemispherx's experimental drug Ampligen(R).

Chronix and Hemispherx previously announced (March 3, 2011) the filing of a joint patent application for a blood test for CFS based on this technology. Chronix and Hemispherx are currently planning to validate the ability of the approach to identify how different persons with CFS can respond to Hemispherx's experimental drug Ampligen(R). The blood test for CFS is experimental in nature and has not been evaluated by any regulatory agency. It is currently limited to investigational use.