Discussion in 'General ME/CFS News' started by Gamboa, Jul 31, 2011.
2011 Ottawa, Ontario, Canada
Thanks Cort - this is one Conference I/we really look forward to hearing about. Dare one think things are on the move now.
I hope that you, Cort, or someone else here will relay what Dr. Byron Hyde says on Saturday night. As one of the great old-timers in the business, so to speak,
one of our "Elders", I expect he still has valuable contributions to make!
Thanks, Cort. I also expect interesting news from this conference. Now i just looked at the workshops on Sept 22 and i have to say i'm a bit disappointed by them. There's not much about actually finding and treating the causes in there (except for the first one) and too much about managing, etc. I'm quite tired of the approach of telling PWCs how to cope, adapt, excercise, etc. In the end the job of researchers and physicians is to restore our health, at least as much as possible, in my opinion.
I feel the same way.
As someone who has been ill for thirty one years I agree with eric that we need hard science here.
Behavioural interventions are just an excuse for doing no proper science.
This is wearing thin. How much longer do they expect to get away with this self-serving approach?
Oh good Cort. I'm glad you will be there. I am also signed up for all 4 days and am hoping to be able to post information but had a colonoscopy today which has wiped me right out. I hope after a good sleep today and tonight I'll feel better tomorrow but , as we all know, with this illness I'll probably be worse.
I'll be dragging myself in one or another so will introduce myself to you at some point over the 4 days.
Gamboa (Claire )
Good luck to all of you attending the conference. I hope it will be enlightening and not too tiring for you.
Thanks for making the effort to represent us.
Thank you, Nielk.
I'm a bit anxious to go. My health is not the best right now, but I am very curious to see what they have in store for us. I'm sure many of us will give an update the minute we can. Take care. BDF
There is mention of a video recording in this thread. I will send off an email to get more info on that, but does anyone know if we able to purchase the papers from the conference? I emailed the conference organisers a few months ago but have not heard back.
In the past, I think one could buy the abstracts - but they were quite dear (low 3-figure US, IIRC).
Similarly, video recordings of the 2009/2007(?) conference were a lot dearer than I recall any or nearly any other recording I've seen e.g. $195? That's why I'm hoping for some feedback - not alone will buying it be out of my range, I don't think we can depend on many other people buying them either.
Dolphin, there will be a DVD to buy--don't know how much for, though I know that this conference needed much more financial backing than it has received so far, so it will be very
helpful if some can contribute this way. I know that Cort here and I am sure others will write summaries of parts of it. The information will be disseminated one way or another, don't worry!
We found out yesterday that everyone who participated will get a free copy of the DVD.
We also got Dr Byron Hyde's encyclopedia... FREE! =-)
There was one question about how the WPI will react to the BWG news.
Annette said that if it turns out not to be this pathogen, there will be other pathogens to look for. They will do whatever it takes to figure out what causes ME. They are committed to figure out what causes ME.
(anyway, something along those lines... by the time the questions were on, I was totally out of it.)
Dr. Byron started by saying that his views were totally different from all of the other speakers. He explained that most CFS cases were missed diagnoses.
Dr. Bested did a very touching interpretation of the "Way we were". The song was about PACING and how important it is for ME patients.
The disability guy was VERY knowledgeable. Too bad I won my case, I would have hired him on the spot! ;-)
Dr. Nancy Klimas - Energetic, convinced and convincING, as usual.
Dr. Komaroff - We need more doctors like him!
For some of us, these sessions were very informative. Personally, I did not get much out of it. My brain fog was so severe by 11 a.m. I had a hard time keeping my head up - too dizzy! However, the lady who was sitting right besides me said that she was "overwhelmed" by all of the info she got. She could not wait to go home to tell her daughter everything she had learned. This was all very new to her. Her daughter has been sick and bedridden for one year. She was very desperate to figure out what was wrong with her.
From FB IACFS/ME Action page:
It is 0630 and I am up and ready to begin another day of the conference. I was so tired after spending almost two hours after yesterdays session with a group of almost twenty me/fm sufferers sitting around Dr. Leonard Jason pouring out their hearts about their lives while suffering from those illness. Two of those people also had their partners sitting beside them for support which was wonderful to see. I was so tired after that I came to my room and went straight to bed.
The first day began with Dr. Hyde announcing that each participant of the conference will receive compliments of the Nightingale Research Foundation the book The Clinical and Scientific Basis of ME/CFS. A booklet Definition of Myalgic Encephalomyelitis (ME) was also distributed. There is also a short book Missed Diagnosis available in print or electronically on Lulu.Com.
Midway into yesterdays agenda it was unanimously agreed upon that all the information presented at this conference will be available on line and through CDs. It is important that everyone involved with promoting the validity of these illnesses, or is it one illness? I believe it is one illness with differences in severity and outcomes, but no doubt that there is enough pathology evidenced now that it would be criminal not to proceed as fast as we possibly can with education and more research.
The stunning facts that Dr. Bested released and aired on CBC Radio, Ottawa, from the extensive statistical research done by the ME/FM Action Networks Margaret Parlor confirms that the increase in the numbers (23% in CFS and 13% Fibromyalgia) with three quarters of million people inflicted now. These statistics are alarming and should alert government officials that something has to be done and done quickly.
Pathology is showing in peoples blood vessels, From what? Medications? Some drugs like Statins can cause serious pain. why? Why are there so many atrophied thyroid glands, liver and kidney damage?
Dr. Komaroff spoke and said Is it cause of symptoms (effects on the brain)) or is it the cause of the cause of the symptoms that makes wrong energy metabolism that we all have to live with and why? Spec scans show reduced areas of signal cognition for speed memory and attention with autonomic dysfunction, causing sleep disorders and Neuroendocrine problems, affecting possibly every system in our bodies.
Test after test shows abnormality from measuring lactic acid in spinal fluid. There is an increased anerobic metabolism in inflicted patients resulting in higher levels of lactic acid.
Why are there an decreased number of natural killer cells and increased cytokines, more oxidative stress and damage done to the mitrochondria or the powerhouse where energy is created in our bodies.
Dr. Jason spoke about ways for people to deal with this debilitating illness by non pharmaceutical intervention, which I thoroughly agree with. I take no medication except thyroid hormone and treat myself holistically by the exact methods he referred to in his lecture.
Sleep hygiene is very important and we need lots of rest and relaxation rest is repair rest means restore and wind down at least an hour before trying to sleep. You must feel sleepy, being tired will not put you to sleep, sleepiness will
It is important to resolve the anger that may come from being ill, misunderstood and perhaps maltreated, but anger is self destructive and has to be resolved.
Dr. Ronald Staud spoke on Fibromyalgia, which the information will be available on line. Pain is very complex and the synaptic transmission of pain can be measured with functional MRIs and other scanning, so yes the pain is very real. One thing to keep in mind is that increased anxiety increases pain signals and pain sensitivity. Increased pain shows increased atrophy of the brain. The question is why?
Mr. Hugh Sheyer our legal consultant spoke on the the legalities that people face while disabled and trying to obtain financial benefits. Each case is individual, depending upon the employer and social benefits and severity of symptoms. The diagnosis should be irrelevant, but that is sometimes not the case.
Dr. Nancy Klimas spoke on the level of neuro-immune dysfunction related to these illness and explained the differences between CFS/me patients and Gulf War Syndromes patients. CFS patients turn off pathways, Gulf war patients turn on pathways. They are different, but have same symptoms. Interesting!!
Annette Whitmore from the Whitmore Petterson Institute In the USA, the research money for MS is 135,000,000 and for ME is 6,000,000. This ratio has to change as the numbers of people inflicted increase, according to governments own statistics.
Scientific work is continuing to be done on retroviruses and blood donation from people with ME/CFS symptoms is discontinued. The institute is encouraging medical students to become more involved with these misunderstood illnesses and support patient advocacy groups. ANIDA . (1) Advocate for neuro-immune disease awareness. (2) Educate friends and family. (3) Keep writing to Governments.
Ms. Stacey Stevens explained why me/cfs have exercise intolerance and why. The use of a heart monitor is recommended and keeping within the individual anerobic threshold and why.
I am running out of time now, gotta go for breakfast and another busy day.
This is unedited and written from notes I took yesterday. Please excuse spelling errors and omissions. Thanks Judi Day
I attended Clauw's presentation that took up the morning and took many notes (which are not with me); the most salient fact I remember was that he believes that an FM-like disorder (eg a CFS like- disorder) is basically the most prevalent disorder in the US and probably the world. He stated that this disorder is so distinctive that he and other practitioners knowledgeable can pick up it up in minutes in a patients....all they have to do is start describing their symptoms. He's seen it all over the world and its the same...its the same in Kenya as it is in the US.
He believes an FM/CFS like-condition occurs in 20-30% of ALL disorders...that's cancer, diabetes, arthritis, etc....20-30% of everyone that has a chronic illness has a CFS-like condition. They all look roughly the same; they have increased pain, fatigue, they sleep poorly and have problems with odors and other stimuli. He believes this group of disorders costs more medical costs than any other group of disorders and the research community will get that at some point.
Cort has been Tweeting some comments for anyone interested. He can be followed at: https://twitter.com/#!/CortJohnson
Thanks Cort for your reporting back to us.
Hanson's XMRV Study at IACFS/ME conference
the sensitivity of the PCR assays used requires extreme caution in interpreting results
First she tried finding env sequences in her samples from Dr. Bell but couldnt find it. Then Hanson switched to looking for the gag sequence - a more conserved region of the virus. She found them but upon further analysis determined that they did not contain the classic 24 bp deletion found in XMRV - she had not found XMRV.
She then tried to culture the samples as per the WPI and found the gag sequence for XMRV but no other sequences - which was troubling plus there was no difference between healthy controls and ME/CFS patients. She decided that culturing for 30 days left too much opportunity for contamination.
Hanson then got more rigorous. She went from nested PCR (more susceptible to contamination) to single PCR, reduced her processing of samples, implemented IAP and did changed blood collection procedures and her positive GAG results disappeared. She suggested that she could have contaminated her samples with GAG amplicon she used.
Then she did antibody tests - which does not have the contamination problems of PCR and she found that antibody tests for XMRV were positive in half her CFS patients and in about 15% of healthy controls. She emphasized that this did not mean they had been exposed to XMRV (since she had not found XMRV). She suggested that people with ME/CFS could have a retrovirus other than XMRV and urged more work in this area.
like other HGRV's.
Interesting, but in a way also disappointing, i expected a "real" positive study. Any word about blinding? Was this done blind?
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