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

[Enid]

Thanks Rafael - loved the positiveness and "hey now let's figure out how that works" bit.

 

[Cort]

I have been studying social media a little bit lately and have registered a twitter hashtag, IACFSME here:
http://www.foxepractice.com/?cat=105&s=IACFSME

It allows anyone, including those not too familiar to MECFS to finds all posts from one topic. So people go to the foxpractice site to find out about conferences, and boom! you find the tweets. It worked pretty well with CROI last year. You can still pull out all the tweets from that one conference.

It would be great if you used the hashtags in your future tweets and pass on the word to the norwegian journalist in attendance.

Just saw this - great idea and nice site! This is all a learning experience for me.

 

[CBS]

Jason reports Empirical definition identifies about 75% of CFS patients correctly and the CCC about 87%. CCC is better at diagnosing CFS but ED does have CFS patients in there. CDC studies aren't completely off. They have documented C3 abnormalities after exercise for instance and polymorphisms that are showing up in the Light studies.



Every NIH study uses Fukuda which every other CFS study (except CDC) - you would have to throw out every CFS study including those finding low blood volume, brain abnormalities, metabolic problems, EBV etc.....

It's not the ME/CFS patients that are correctly identified that is the primary issue. It's all the non ME/CFS patients that are erroneously included. Jason documented a ten fold increase in percentage of the population that was diagnosed with CFS with the introduction of increasingly inclusive criteria. Jason also estimated that using some definitions, between 80-90% of the cohorts were not ME/CFS patients.

That 12% difference on it's own is a lot of noise and on it's own changes the signal to noise ratio (leaving out twice as many real ME/CFS patients 13% versus 25%). The actual amount of change is dependent upon the number of non-ME/CFS patients dragged in to the mix and when you are trying to pick up a signal from 10% of the participants in a study (while ignoring the noise from the 90% that shouldn't have been included in the first place) the statistical power of your design is almost as close to zero as you can get.

 

[Dreambirdie]

It is long past time to cut our losses and get serious about the research. Start collecting data form nothing but well defined cohorts NOW. Old data isn't being held onto because it's useful to patients. It is being used because people at the CDC can't admit they've wasted all this time and money and that they have very little to show for it. This is ego trumping doing what is in the patients best interest and getting in the way of good science.

It's not the ME/CFS patients that are correctly identified that is the primary issue. It's all the non ME/CFS patients that are erroneously included. Jason documented a ten fold increase in percentage of the population that was diagnosed with CFS with the introduction of increasingly inclusive criteria. Jason also estimated that using some definitions, between 80-90% of the cohorts were not ME/CFS patients.

Yes! This is right on.

We have moved FAR BEYOND the old definition, the old incorrect cohort, and the old mostly useless research.
We need to go back to square one, and get it right this time around with the CORRECT COHORT.

 

[CBS]

Every NIH study uses Fukuda which every other CFS study (except CDC) - you would have to throw out every CFS study including those finding low blood volume, brain abnormalities, metabolic problems, EBV etc.....

Are those findings specific to ME/CFS? If not, how would we know. The problem with ME/CFS research to date is that we have absolutely no idea what it is we know and what is it we do not know because of the lousy job that has been done of defining this disease and the cohorts/subgroups. So yes, approach everyone of those studies with a great deal of skepticism (do not include them by default, exclude them as they are as likely to be misleading as they are likely to be informative). The situation to date really is that bad. And until someone at the NIH/CDC has the guts to admit this, private efforts like the WPI (no matter what one's opinion of the XMRV question, one of the best things the WPI has done to date - and I believe the reasson behind a significant amount of their wide support - its that they got the cohort question right and they never minced words about it) and the CFI will make the NIH/CDC effrots irrelevant at best, and much more likely, a serious distraction and detriment to progress.

 

[Sasha]

Loads of interesting stuff being twittered by Cort. Can't wait to see the full accounts of this stuff. E.g. Kenny de Meirleir finding 63% of 108 patients getting noticeable improvment on Gcmaf.

 

[Dolphin]

They have documented C3 abnormalities after exercise for instance and polymorphisms that are showing up in the Light studies.

The exercise study the CDC was involved in didn't involve the empiric criteria.

There may potentially be a value in having the CDC data; but I think it is high risk. But the CDC not sharing its data wouldn't necessarily help either.

 

[Dolphin]

It's not the ME/CFS patients that are correctly identified that is the primary issue. It's all the non ME/CFS patients that are erroneously included. Jason documented a ten fold increase in percentage of the population that was diagnosed with CFS with the introduction of increasingly inclusive criteria. Jason also estimated that using some definitions, between 80-90% of the cohorts were not ME/CFS patients.

That 12% difference on it's own is a lot of noise and on it's own changes the signal to noise ratio (leaving out twice as many real ME/CFS patients 13% versus 25%). The actual amount of change is dependent upon the number of non-ME/CFS patients dragged in to the mix and when you are trying to pick up a signal from 10% of the participants in a study (while ignoring the noise from the 90% that shouldn't have been included in the first place) the statistical power of your design is almost as close to zero as you can get.

For anyone who knows the jargon: the sensitivity of the empiric criteria may not be too bad, but the specificity is terrible.

 

[Dolphin]

Petition against empiric criteria

I just thought I'd give a plug again to the petition against the so-called empiric criteria.

It's the bottom link in my signature.

Over 2500 signatures already. Comments can be left.

There is some background information and information from research (nearly all of it from the Lenny Jason team's research) in the blogs.

 

[Gamboa]

Hi everyone,

I've just finished my third day at the conference and my brain is FRIED. It has been very exciting for me to see and meet so many of the great people in the field of ME/CFS research and medical practice as well as bloggers, tweeters and fellow patients. It's a bit like being amongst rock stars or royalty! Hi Cort

I have been taking copious amounts of notes and now find myself totally overwhelmed about what to report and where to start.

As discussed previously the attendance has been good for both the patient day and professional days. I counted at least 4oo people for the patient day and slightly less for the other days.

I really liked the session on exercise in today's program. Betsy Keller from Ithaca College gave an excellent presentation about CPET- cardio-pulmonary exercise testing- and its ability to produce objective values that illustrate PEM. She started her talk by mentioning the previous discussions about definitions and the need for biological markers to determine whether a patient has ME/CFS .She then said that doing an exercise challenge as per the method done by the Pacific Fatigue Lab produces results that are like a biological marker for ME/CFS. She described her study in which patients did a CPET on day 1 to induce PEM, and then repeated the testing on day 2, in which she could determine the effect of PEM on functional ability. By looking at the outcome measures of VO2 max, HR max, Workload max, Anaerobic threshold, AT work, and the respiratory exchange ratio (RER) and comparing the 2 days of data they could VERY CLEARLY identify the patients with ME/CFS and also be able to document how this affected the patients ability to function.

Christopher Snell then gave a talk entitled The Importance of Exercise Challenge in which he went over hoe NOT to have an exercise challenge done. He stated that there are many indirect methods that are not good. He said the Pace Trial used one of these indirect methods and that the study was very poor. In order to get a proper exercise challenge it must have a direct assessment of aerobic capacity and must be done on calibrated equipment. He said that CPET is uniquely able to quantify the changes in efficiency with measures of both workload and metabolic activity. CPET has the ability to OBJECTIVELY document PEM in ME/CFS patients .

In the question section someone asked if these procedures are written somewhere and Dr. Snell said there are no guidelines written up. I want to look into this further since I am interested in having this type of testing done. I asked Dr. Keller if she takes patients from Canada and she said as far as she knows there would not be a problem with this. I'll be emailing her soon and will report back what happens.

OK, I'm really tired now and must go. I'll try to report in again about some of the other talks.

Gamboa

 

[Enid]

Thanks for the effort taken Gamboa - it all sounds a marvellous Conference - hope you will have a good rest now.

 

[Dolphin]

Just to point out that I believe the data from the Wichita two-day study would included a higher proportion of "real" CFS or ME patients than the Georgia study empiric criteria patients.

This is because of how the cohort was picked: where they had followed people who had previously satisfied CFS criteria (58), along with healthy controls, etc.:

This population-based case control study enrolled 227 adults identified from the population of Wichita with: (1) CFS (n = 58); (2) non-fatigued controls matched to CFS on sex, race, age and body mass index (n = 55); (3) persons with medically unexplained fatigue not CFS, which we term ISF (n = 59); (4) CFS accompanied by melancholic depression (n = 27); and (5) ISF plus melancholic depression (n = 28).

 

[Dolphin]

Thanks Sickofcfs. It is very easy to get confused - the CDC have not been clear.
Note: the 58 were people who had CFS sometime between 1997 and 2000. Only 6 of that group had Fukuda criteria and no sign of Major Melancholic Depressive Disorder when assessed in 2003. And then things started to get weird with the CDC re-defining CFS.

As I think I have said here before, I think they re-defined CFS precisely because they had spent a huge amount of the CFS budget ($2million) on this two-day study and they wouldn't have had enough CFS patients to publish papers on a lot of the topic if they just used the normal Fukuda criteria they had used from 1997-2000. That's my theory why they re-defined it.

 

[Dolphin]

Cort has been Tweeting some comments for anyone interested. He can be followed at: https://twitter.com/#!/CortJohnson

Apart from Cort, other Twitter accounts one could check for info from the conference are:

http://twitter.com/#!/sciencecohen

http://twitter.com/#!/DeBortgjemte (A lot of these are in some Scandinavian language - Norwegian I think)

http://twitter.com/#!/MEFMACTION

https://twitter.com/#!/oslersweb

https://twitter.com/#!/pandoraorg

http://twitter.com/#!/TomKindlon

http://twitter.com/#!/XMRV_GA

 

[Kati]

Just saw this - great idea and nice site! This is all a learning experience for me.

I have been planning to do a little article about social media and importance of talking to people other than our own community. Twitter can provide that. More later.

 

[Cort]

I have been planning to do a little article about social media and importance of talking to people other than our own community. Twitter can provide that. More later.

Looking forward to that Kati

 

[Cort]

Dennis Mangan is Retiring

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.

 

[healthconcern]

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?

 

[Dolphin]

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?

Could he be presenting it as a poster?? (haven't followed it)

 

[Enid]

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.