REMINDER Web presentation today - Dr. Leonard Jason

[dancer]

Dr. Jason's talk also reaffirmed for me that BAD science is worse for us than NO science. I thought it was horrible how little research is done for ME/CFS...but what is even more horrible is how a specific illness ME/CFS has been redefined into something that 25 per cent of the population feels at any given time (fatigue of a chronic nature).

No wonder primary care doctors confuse the issue and treat ME/CFS patients as if they need more exercise and anti-depressants. Ugh!

I hope more and more focus will be put on PEM. It seems like that's something PCP's could begin to understand... that depressed patients feel a bit better if they exercise, and ME/CFS patients feel worse.

 

[pollycbr125]

you would think all this would be commen sense to researchers , docs etc . you cant do research if you aint got the right patients to begin with ......... the sooner the UK adopts the canadian criteria and we are all reassessed properly the better.

 

[CBS]

What would you do if...?

I was very pleased that Dr. Jason included a comment about the power of a single question to distinguish between depressed and ME/CFS patients.

What would you do if you woke up tomorrow and you felt fine?

The absence of an answer to this question defines Major Depressive Disorder (MDD). Nearly everyone with ME/CFS has a list that is a decade long. If your doc goes down the depression road you consider pointing this out to him/her.


This video on the CAA's BioBank site brought me to tears the first time I saw it: http://www.solvecfs.org/SHARE/WHATWOULDYOUDO/tabid/57/Default.aspx

 

[MEKoan]

It was an excellent presentation by Dr Jason. I hope it is published in some form somewhere. I'm very heartened to hear that his research is ongoing.

I was a bit concerned that the biobank goes ahead even while there are these very serious issues re identifying true ME/CFS patients. I can't see how it will not create problems in the future if anything less than the most stringent criteria are used for a repository which will be used into the future. I think the cart may be in front of the horse here. It seemed odd to me that this is the very issue so eloquently addressed by Dr Jason.

I hope I'm wrong.

 

[MEKoan]

you would think all this would be commen sense to researchers , docs etc . you cant do research if you aint got the right patients to begin with ......... the sooner the UK adopts the canadian criteria and we are all reassessed properly the better.

Yes, you would which is why I simply cannot believe that Reeves, et al, were not fully cognizant of these issues. This is epidemiology 101 and statistics 101. Can you really rise to some heights at the CDC without having a basic grasp of these disciplines?

Can you really, in good faith, do the phone study he helmed? Can you?

I don't get it.

 

[bullybeef]

It was an excellent presentation, and very eloquently put. I found it amusing how his own research incriminated other research as being unethical, and questionable. But he did it without coming across as slanderous.

Obviously, if they muddied the ME pool, there has to be a reason. It is so clear and blatant. Obviously health benefits and insurance claims are severely affected whether your disease is of the mind or body. So they save many civilised country millions in benefit/insurance claims. But why are they so protected for something so obviously fraudulent. They were obviously instructed to process this false research, so whom gave the order?

We are having a similar issue being brought to the authorities attentions here: http://www.meactionuk.org.uk/MREC-complaint.htm

 

[CBS]

It was an excellent presentation by Dr Jason. I hope it is published in some form somewhere. I'm very heartened to hear that his research is ongoing.

I was a bit concerned that the biobank goes ahead even while there are these very serious issues re identifying true ME/CFS patients. I can't see how it will not create problems in the future if anything less than the most stringent criteria are used for a repository which will be used into the future. I think the cart may be in front of the horse here. It seemed odd to me that this is the very issue so eloquently addressed by Dr Jason.

I hope I'm wrong.

Koan,

If I am not mistaken, Dr. Jason is actively involved in cohort selection for the BioBank. I very much am left with the impression that he feels he knows enough to get started and that as more accurate diagnostic criteria is developed they will be able to go back and assess those who are already part of the BioBank.

It was also my impression that they may use the BioBank to look for differences between those who meet certain aspects of the the Fukuda (remember that the CAA added criteria for everyone beyond the Fukuda such as PEM as a must have) and those meeting the Canadian Consensus Dx criteria.

I feel pretty comfortable with Dr. Jason so involved in the BioBank cohort definitions.

 

[MEKoan]

Hey Shane,

That is very reassuring! Thank you for bringing me up to speed. It is wonderful, is it not, to be able to trust. I trust Dr Jason.

Peace to you!

 

[CBS]

CBS, can you confirm this? Is or is not Dr. Jason actively involved in cohort selection for the
CAA BioBank? Do you have a source?

Dr.Jason said in his presentation that he was involved in developing the criteria being used for the Biobank cohort selection. I doubt he's involved in actually making decisions on each case. He's also applying for additional funding for what appears to be a different project with the CAA: http://www.cfids.org/cfidslink/2009/110404.asp

 

[fred]

I was a bit concerned that the biobank goes ahead even while there are these very serious issues re identifying true ME/CFS patients. I can't see how it will not create problems in the future if anything less than the most stringent criteria are used for a repository which will be used into the future. I think the cart may be in front of the horse here. It seemed odd to me that this is the very issue so eloquently addressed by Dr Jason.

I hope I'm wrong.

Although it's interesting to note that the latest WPI letter says that XMRV was detected in samples from Kuppewald and Kerr, both of whom use definitions that you could drive a bus through. The former uses the Oxford (i.e. are you breathing?) criteria and Kerr sources his samples from UK 'CFS Clinics' which have a bad track record in attracting genuine ME patients.

Surely, if XMRV is proven to be the 'smoking gun' (or even just a biomarker for ME), not only would a symptom based diagnostic criteria become obsolete, but any biobank samples used in future research would have to be tested for this first.

 

[MEKoan]

Yes, Fred, you make some very good points. Things are very fluid at the moment. I agree that much is likely to change in the next year... perhaps fundamentally.

Interesting times.

 

[Orla]

Koan, CBS and all, I got the impression from it that Leonard Jason had influenced the CAA on the criteria to meet the biobank (I missed the bit where he said something more specific about his involvement).

Kim McCleary mentioned that questionnaires will be used, so reading between the lines I was guessing (not sure if it was mentioned when my brain was having a rest!) that this might involve the questionnaires that Leonard Jason mentioned in the talk. This would be excellent news if it were the case, as it would lead to having very useful data on the patients and researchers might be able to attempt to see if different variables (symptoms and so on) affected resullts.
Orla

 

[MEKoan]

Hey Orla,

That's so interesting that we all missed Jason commenting specifically on the criteria for the Bio-bank - I did too. I couldn't have missed more than a second or two but by the time my brain was engaged again KMcC was talking about the BB and the criteria and I kept waiting for Jason to comment on the Fukuda & CCC criteria but there was just silence from his side after that point. Making up stuff in my head :innocent1: I just got the feeling something about it was unresolved BUT I was making that up in my head in reaction to nothing - literally.

Anyway, he is not likely to say, "yes, yes, go ahead" if people are doing something dumb! And, most likely, the scenario you outline is right!

I love this feeling!
:victory:

 

[jspotila]

A couple of answers

Dr. Jason's presentation today was recorded. It will be available on the Association's website and YouTube channel no later than tomorrow.

The SolveCFS BioBank criteria are very specific at this time. An FAQ about the BioBank has been posted, and the full criteria can be accessed at www.solvecfs.org.

Dr. Jason has provided the Association with assistance in formulating the medical questionnaires that donors fill out (collecting medical history, drug/treatment history, and more). This data is stored in the BioBank, along with the blood and DNA samples. (Researchers interested in using any of the data or samples will be able to submit proposed studies to the Medical Research Advisory Committee.)

Dr. Jason is not involved in determination of who is eligible for the BioBank. At the present time, patients who have been diagnosed with CFS by Drs. Bateman, Lapp, Klimas or Gluckman using the Fukuda or Canadian criteria are eligible (there are a number of other criteria as well).

 

[Orla]

Thanks Jenny
Orla

 

[Sing]

Thankful, but still outraged

I'm very glad that Dr. Jason has been working on operationalizing the Canadian Consensus Definition and to try to make it the only currently valid definition of ME/CFS. It has seemed outrageous to me that the need for such steps has not been perfectly obvious to researchers since this clear, accurate clinical picture and definition came out in 2003. To persist despite this advance, however, in vague definitions which bring include a large population of clinically depressed people and those with unrelated medical problems, whose markers obscure and cancel out the evidence for those with true ME/CFS, is an example of irresponsible, unscientific practice for which any funding or standing ought to be denied.

 

[gracenote]

What Sing said.

 

[CBS]

I'm very glad that Dr. Jason has been working on operationalizing the Canadian Consensus Definition and to try to make it the only currently valid definition of ME/CFS. It has seemed outrageous to me that the need for such steps has not been perfectly obvious to researchers since this clear, accurate clinical picture and definition came out in 2003. To persist despite this advance, however, in vague definitions which bring include a large population of clinically depressed people and those with unrelated medical problems, whose markers obscure and cancel out the evidence for those with true ME/CFS, is an example of irresponsible, unscientific practice for which any funding or standing ought to be denied.

Hi Sing,

I agree that no research is better than bad research. And yes, we've had a clear answer ready to be operationalized and implemented for seven years. I'm wondering if your comments are general in nature or if there us a specific study or endeavor that you are upset about.

 

[Dolphin]

Petition against CDC's empiric definition (Reeves, 2005)

There's a petition against CDC's empiric definition (Reeves, 2005) in case some people haven't signed it and want to.

http://CFSdefinitionpetition.notlong.com
i.e.
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

We call on the Centers for Disease Control and Prevention (CDC) to stop using the "empirical" definition[1] (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.

 

[Sing]

Hi Sing,

I agree that no research is better than bad research. And yes, we've had a clear answer ready to be operationalized and implemented for seven years. I'm wondering if your comments are general in nature or if there us a specific study or endeavor that you are upset about.

My comments were general in nature and apply to all studies based on definitions other than the Canadian Consensus Definition.

Sing