Dear fellow patients,
It certainly was pleasing to see my “Time for the Big Talk. How's the CAA doing?” thread receive a lot of attention and really take off. It was inspired by what I perceived in late October to be serious strategic missteps by the CFIDS Association. My premise was that in the early days and weeks after the Science publication the Association was flat-footed to say the least. Indeed, in their communications in a number of media they inadvertently echoed those who dismissed the work of the WPI and argued that the editors and peer reviewers of Science were unintelligent.
The thread was not a call for the replacement of the CAA’s leadership, but rather a suggestion for a debate. That debate happened and I think that I was productive. It might have played some role in encouraging closer scrutiny of an Association which--whether we support it or not--has the power to do our families and us good or harm. (Among other things, the readers of these fora have given close scrutiny to the literature from the CAA’s doctor education program since then. And many here have found that those documents leave much to be desired.)
But with this thread I would like to look to the weeks and months ahead.
I would like to lay down my expectations of the CFIDS Association on the eve of the release of XMRV/CFS replication studies. I want to establish a gauge against which their performance can be measured for two main reasons. First, I want to be constructive. I want the Association to hear my and others’ expectations so they can try to meet them. Second, I want to establish my (and others’) expectations so that in the case of failure my censure, demands for correction, and expectations for change in the institution cannot be characterized as “kneejerk.”
My expectations are premised on my belief that the earliest attempts to replicate the WPI’s finding will fail. I expect that for several reasons. As Dr. Bell has warned, the earliest testers are likely to be rushed and will not have used the Cleveland Clinic’s methods and machinery and care. Also, the earliest attempts will not employ well-established CFS patients as subjects. Those should only come from our world-class CFS practitioners like Peterson, Klimas, Lerner, Levine, etc. Finally, there are institutions in the US and UK who have “dumbed-down” the definition of CFS to include people who do not qualify as CFS sufferers according to the most experienced, rigorous practitioners in the field. If replication studies come out of those institutions and employ their “dumbed-down” subject criteria to any significant extent, those studies will be failures.
These failed replication studies, even if they are later outnumbered by successful replications, will be very damaging to progress against this disease. They will reinforce the overwhelming sense among the physician community that CFS is a wishy-washy mind-body “illness experience”; they will cost some large amount of grant dollars; they will damage the credibility of the WPI, which is blazing this new trail. Newspapers will be filled with poorly-written stories that will appear to “take back” the news of the XMRV breakthrough; readers will only perceive that some important-sounding institution demolished the CFS breakthrough.
Now, granting that the CFIDS Association is a small, modestly-funded organization, there is much they can do to counter bogus replication studies. [Note that I don’t want them to counter legitimate studies: if there are any that are as incredibly strenuously vetted as Science’s WPI/NIH/Cleveland Clinic paper and show that xmrv was a red herring, by all means, we’ll move on and continue our search.] The CAA is led by a executive who make $177,000 a year. She is no amateur. They have an annual revenue of $1.58 million. They have a staff of 8 and a board of 14 volunteers. They can and must be ready to respond to a bogus replication failures within minutes. They have had months, and presumably have weeks still.
Here’s what they can do:
Have 3-4 versions of a press release ready to fax to the chief newspaper in every state.
1) There’s a press release for a successful replication study; it heralds the work of the WPI and says it’s time to move towards finding treatments.
2-3) There’s a press release for a replications that find xmrv in around 20% of tested subjects and one for 50%. They point out that 20% is still a far, far higher rate than the 3% rate in the general population. They call for scrutiny of the test subjects and scrutiny of testing methods. The press releases says that these findings call for only a greater effort to enhance testing techniques and standardizing the subject pool (Canadian Consensus or Fukuda). “It’s time to do more studies; we’re really on to something here; yadda yadda.”
4) Finally, there’s a press release for the total failure to replicate. If the study is as rigorously peer reviewed as the Science paper (an outcome that I find hard ot imagine, but which is possible), this story’s over.
If, as I suspect, a failed replication study is based on a subject pool of Reeves Disease sufferers or is based on shoddy technology or methodology or work, then the press release must absolutely nail those factors. The language is not at all wishy-washy. The press release doesn’t pull any punches for the sake of preserving any relationships with any institutions. It picks apart poor methods, premises, science. --This press release is the hardest to write in advance. But it could be written today in very general language. The day some lab announces a bogus replication study the CAA could place emergency phones call to a scientific contact for help characterizing why the study is flawed. The press release is then filled in with detail. The press release cites the incredible rigor with which the WPI’s Science paper was vetted and compares that vetting to the review given the bogus replication study. It states that the institution’s apparent prestige has nothing to do with the quality of the replication study. It ends by demanding further replication attempts employing legitimate standards.
In addition to press releases, Ms. McCleary is prepared--on the day of the release of any replication study--to work the phones. She calls any news organization willing to listen with talking points from 1-4 above. If the outcome is #4, a day or two’s silence will be interpreted as acceptance.
On the day of the release of any replication study the front page of the cfids.org website is given over to a major statement regarding outcomes 1-4.
Etc., etc. None of these suggestions are rocket science, merely the acknowledgement of the political importance of the timing and details of the CAA’s response, and the potentially disastrous consequences of failure to respond to a bogus study.
--If the CAA fails to do these things.--
Now, if the CAA fails to respond to any outcome 1-4, but especially #4, then our response as a patient community needs to be as grave as the CAA’s failure. We will know how our leadership performs at the most politically sensitive moment for our community for years or decades. Then it will be time to demand that the board vote to replace the CEO and possibly the chief science officer. Such a failure will be a failure of leadership and the CAA’s leadership will need to be held accountable. The CAA board will then begin a national search to replace both officers with the intellect and political savvy demanded to lead an organization working to cure a very political disease.
Now, if the board will not replace the two main officers, we as a community will need to consider joining or forming a new advocacy group.
I hope that it doesn’t come to that. It will be a setback for our community to need to reorganize or replace its political wing. But it will be necessary. The CAA, whether each of us is a member or supports it or not, is the visible face of our community. The press and government look to it to play that role. We (and our children and spouses) cannot afford to have ineffectual, slow leadership.
It certainly was pleasing to see my “Time for the Big Talk. How's the CAA doing?” thread receive a lot of attention and really take off. It was inspired by what I perceived in late October to be serious strategic missteps by the CFIDS Association. My premise was that in the early days and weeks after the Science publication the Association was flat-footed to say the least. Indeed, in their communications in a number of media they inadvertently echoed those who dismissed the work of the WPI and argued that the editors and peer reviewers of Science were unintelligent.
The thread was not a call for the replacement of the CAA’s leadership, but rather a suggestion for a debate. That debate happened and I think that I was productive. It might have played some role in encouraging closer scrutiny of an Association which--whether we support it or not--has the power to do our families and us good or harm. (Among other things, the readers of these fora have given close scrutiny to the literature from the CAA’s doctor education program since then. And many here have found that those documents leave much to be desired.)
But with this thread I would like to look to the weeks and months ahead.
I would like to lay down my expectations of the CFIDS Association on the eve of the release of XMRV/CFS replication studies. I want to establish a gauge against which their performance can be measured for two main reasons. First, I want to be constructive. I want the Association to hear my and others’ expectations so they can try to meet them. Second, I want to establish my (and others’) expectations so that in the case of failure my censure, demands for correction, and expectations for change in the institution cannot be characterized as “kneejerk.”
My expectations are premised on my belief that the earliest attempts to replicate the WPI’s finding will fail. I expect that for several reasons. As Dr. Bell has warned, the earliest testers are likely to be rushed and will not have used the Cleveland Clinic’s methods and machinery and care. Also, the earliest attempts will not employ well-established CFS patients as subjects. Those should only come from our world-class CFS practitioners like Peterson, Klimas, Lerner, Levine, etc. Finally, there are institutions in the US and UK who have “dumbed-down” the definition of CFS to include people who do not qualify as CFS sufferers according to the most experienced, rigorous practitioners in the field. If replication studies come out of those institutions and employ their “dumbed-down” subject criteria to any significant extent, those studies will be failures.
These failed replication studies, even if they are later outnumbered by successful replications, will be very damaging to progress against this disease. They will reinforce the overwhelming sense among the physician community that CFS is a wishy-washy mind-body “illness experience”; they will cost some large amount of grant dollars; they will damage the credibility of the WPI, which is blazing this new trail. Newspapers will be filled with poorly-written stories that will appear to “take back” the news of the XMRV breakthrough; readers will only perceive that some important-sounding institution demolished the CFS breakthrough.
Now, granting that the CFIDS Association is a small, modestly-funded organization, there is much they can do to counter bogus replication studies. [Note that I don’t want them to counter legitimate studies: if there are any that are as incredibly strenuously vetted as Science’s WPI/NIH/Cleveland Clinic paper and show that xmrv was a red herring, by all means, we’ll move on and continue our search.] The CAA is led by a executive who make $177,000 a year. She is no amateur. They have an annual revenue of $1.58 million. They have a staff of 8 and a board of 14 volunteers. They can and must be ready to respond to a bogus replication failures within minutes. They have had months, and presumably have weeks still.
Here’s what they can do:
Have 3-4 versions of a press release ready to fax to the chief newspaper in every state.
1) There’s a press release for a successful replication study; it heralds the work of the WPI and says it’s time to move towards finding treatments.
2-3) There’s a press release for a replications that find xmrv in around 20% of tested subjects and one for 50%. They point out that 20% is still a far, far higher rate than the 3% rate in the general population. They call for scrutiny of the test subjects and scrutiny of testing methods. The press releases says that these findings call for only a greater effort to enhance testing techniques and standardizing the subject pool (Canadian Consensus or Fukuda). “It’s time to do more studies; we’re really on to something here; yadda yadda.”
4) Finally, there’s a press release for the total failure to replicate. If the study is as rigorously peer reviewed as the Science paper (an outcome that I find hard ot imagine, but which is possible), this story’s over.
If, as I suspect, a failed replication study is based on a subject pool of Reeves Disease sufferers or is based on shoddy technology or methodology or work, then the press release must absolutely nail those factors. The language is not at all wishy-washy. The press release doesn’t pull any punches for the sake of preserving any relationships with any institutions. It picks apart poor methods, premises, science. --This press release is the hardest to write in advance. But it could be written today in very general language. The day some lab announces a bogus replication study the CAA could place emergency phones call to a scientific contact for help characterizing why the study is flawed. The press release is then filled in with detail. The press release cites the incredible rigor with which the WPI’s Science paper was vetted and compares that vetting to the review given the bogus replication study. It states that the institution’s apparent prestige has nothing to do with the quality of the replication study. It ends by demanding further replication attempts employing legitimate standards.
In addition to press releases, Ms. McCleary is prepared--on the day of the release of any replication study--to work the phones. She calls any news organization willing to listen with talking points from 1-4 above. If the outcome is #4, a day or two’s silence will be interpreted as acceptance.
On the day of the release of any replication study the front page of the cfids.org website is given over to a major statement regarding outcomes 1-4.
Etc., etc. None of these suggestions are rocket science, merely the acknowledgement of the political importance of the timing and details of the CAA’s response, and the potentially disastrous consequences of failure to respond to a bogus study.
--If the CAA fails to do these things.--
Now, if the CAA fails to respond to any outcome 1-4, but especially #4, then our response as a patient community needs to be as grave as the CAA’s failure. We will know how our leadership performs at the most politically sensitive moment for our community for years or decades. Then it will be time to demand that the board vote to replace the CEO and possibly the chief science officer. Such a failure will be a failure of leadership and the CAA’s leadership will need to be held accountable. The CAA board will then begin a national search to replace both officers with the intellect and political savvy demanded to lead an organization working to cure a very political disease.
Now, if the board will not replace the two main officers, we as a community will need to consider joining or forming a new advocacy group.
I hope that it doesn’t come to that. It will be a setback for our community to need to reorganize or replace its political wing. But it will be necessary. The CAA, whether each of us is a member or supports it or not, is the visible face of our community. The press and government look to it to play that role. We (and our children and spouses) cannot afford to have ineffectual, slow leadership.
(ooops am I opening a can of worms?)
