REMINDER Web presentation today - Dr. Leonard Jason

[Dolphin]

I think this demonstrates both the power and the problems at the IACFS/ME. This is their milieu - they are ME/CFS professionals and as such they can make a huge impact on how research is done and what the research priorities are for this disorder. But they are a sleeping tiger.

You are right. This should have been done YEARS ago and quite frankly its on the IACFS/ME's head that it wasn't. When the CDC created the Empirical Definition Dr Jason asked them to take a stand on it and they were unwilling to do so. I asked Dr. Friedman, the President, last year about coming up with a new definition or standardizing research protocols and he thought it was beyond them. In fact he could hardly concieve of it and he's a very active President. This group has been horribly underperforming for years.

I believe you mean Dr. Fred Friedberg (psychologist) (as opposed to Ken Friedman)

 

[Dolphin]

I think this demonstrates both the power and the problems at the IACFS/ME. This is their milieu - they are ME/CFS professionals and as such they can make a huge impact on how research is done and what the research priorities are for this disorder. But they are a sleeping tiger.

You are right. This should have been done YEARS ago and quite frankly its on the IACFS/ME's head that it wasn't. When the CDC created the Empirical Definition Dr Jason asked them to take a stand on it and they were unwilling to do so. I asked Dr. Friedman, the President, last year about coming up with a new definition or standardizing research protocols and he thought it was beyond them. In fact he could hardly concieve of it and he's a very active President. This group has been horribly underperforming for years.

So now we have our Patient Organization - the CFIDS Association - trying to create a Research Network and Research Standards - because of the vacuum left by the IACFS/ME. I'm not doing this to blame the IACFS/ME but to show what a lumbering, sleepy 'organization' its been. Their board meetings traditionally have occurred every two years! They basically existed to produce the International Conference and then disappear for two years.

If they had mounted a strong attack against the Empirical Definition when it came out it would have been dead years ago. How could the CDC not reply to the organization of professional CFS researchers? They would have had to reply! But they never sent them a letter! Its absolutely astounding!

Fred is very active - he's pushing them to do more and more - but the fact is that they have very little money and the work is all done by volunteers with busy lives elsewhere. (I don't know Dr. Jason does it actually.). The problem is resources and money! If they had the money and resources and willpower they could remake this field instead of ceding it to the CDC which they were content to do for many years. Now a group of activists (check out the board) are spurring them to do further things. Hopefully their activisim will continue and they'll get some resources and they can have a powerful and influential voice. We need to support their efforts. (Patients can now join the organization).

There were plenty of opportunities for individual scientists/researchers to write a letter to an editor to challenge the definition. This can even become a team effort if they ask other people if they want to sign the letter. In our area, so much rubbish goes unchallenged.

 

[BEG]

I believe you are just as sick as someone with sudden onset. I believe that you are just as affected, and have the same right to be in the BioBank as any of the rest of us. The entry criteria for the BioBank do not reflect the Association's belief that CFS onset must be acute. It is our intention to open the Bank to everyone who wants to contribute, as soon as we can afford it.The Association will expand the eligibility criteria as soon as resources permit. [/B]

Jenny, Thanks for your undying patience and kind responses to everything that is posted about the CAA on the forums. I don't mean to be obtuse about this gradual versus acute onset criteria; however, I don't believe that money is the motivating factor for that particular criteria. Yes, to limiting it to the patients of 4 highly acclaimed CFS physicians and the other criteria, but I don't believe money had anything to do with the sudden onset limitation.

Here are two reasons (1) There are more sudden onset than gradual onset individuals with CFS (so I've read on the forums) which would equal even more money needed, and (2) it is becoming obvious that individuals arrive at CFS through many pathways. Somehow, the sudden and gradual onset patients eventually get to the same point. Or do they? There are variances within symptom severity and symptoms exhibited. In other words, we've arrived at the same point, but not exactly. IMHO, I believe that since our end points are so divergent, a unique starting point is absolutely essential for research. Therefore, this particular criteria is not about the money. Gradual onset cohorts exhibit many perpetuating factors. Hats off to the researchers when they need to define those people in a tight cohort.

I'm going to expand on my hypothetical situation here by saying that since our starting points are diverse, there will not be a one-treatment-fits-all approach. There may not be any treatment for those who have experienced irreversible damage to a bodily system. (Hence, Dr. Cheney and his stem cells.) Perhaps, the most treatable persons will be those whose onset was sudden and infectious.

In summary, I don't object necessarily to the fact that only sudden onset patients are included; I object to the fact that the explanation just doesn't seem to hold up. I truly believe there is a scientific explanation which is being withheld from us. I could start guessing but that's not my point here. Let the CAA carry on and find something. At this point, who is being picky?

 

[jspotila]

In summary, I don't object necessarily to the fact that only sudden onset patients are included; I object to the fact that the explanation just doesn't seem to hold up. I truly believe there is a scientific explanation which is being withheld from us.

Brown-eyed Girl, I am not certain I understand your point. The way I read this, I understand you to be saying that you do not think the BioBank cohort is being limited to sudden or flu-like onset because the Association can't afford to make it broader. I also understand you to be saying that the real reason the cohort is limited to sudden or flu-like onset is being withheld. Am I understanding you correctly?

Some of these points are covered in the BioBank FAQ: http://cfids.org/cfidslink/2010/040701.asp

Specifically, the FAQ states, "Our initial group of collaborators is interested in potential infectious triggers for CFS and to facilitate this research, we have drawn a tight circle around CFS patients who might help provide more clues to these particular research questions." It is the nature of the initial collaboration that dictated the sudden or flu-like onset criteria. Why? Because they are looking for potential infectious triggers.

How does money come into it? The FAQ says, "We anticipate being able to expand the onset criteria as BioBank collaborations and resources permit." When we have money and more collaborators, we will expand the onset criteria for the BioBank.

Is the Association withholding information from the CFS community? We are abiding by confidentiality agreements that restrict some of the information that we can make public. The FAQ states: "We hope that you agree that adhering to protocols established for confidentiality, privacy and the ethical conduct of research serve the interests of all of us dedicated to advancing understanding of CFS."

I hope I've addressed your concerns, Brown-eyed Girl. If not, please let me know what needs clarification.

 

[BEG]

Specifically, the FAQ states, "Our initial group of collaborators is interested in potential infectious triggers for CFS and to facilitate this research, we have drawn a tight circle around CFS patients who might help provide more clues to these particular research questions." It is the nature of the initial collaboration that dictated the sudden or flu-like onset criteria. Why? Because they are looking for potential infectious triggers.I hope I've addressed your concerns, Brown-eyed Girl. If not, please let me know what needs clarification.

My concerns have been addressed. Thanks, Jenny.