The 10 year review of the CDC’s CFS Research program is winding up. They’ve taken an internal look and an external look at the program and an un-solicited outside look . They liked the external look – it glossed over many of the more substantial problems with the program – and were likely horrified at the ‘outside look’ they got from a very angry CFID’s Association of America.
Now they want your opinion. Not very badly that’s for sure; they announced the meeting for the outside community to chime in not long before it was to take place (April 27th). They may not want your opinion but they need it- badly.
The biggest CFS research program in the world is in bad shape; it’s productivity has lagged badly over the past two years; it’s become focused on child abuse; it’s thrown millions of dollars after projects that existed on paper only (all the while cutting off funds to worthwhile outside projects), it’s top researchers no longer show up at International Meetings, it’s created a definition of CFS that only it’s researchers use, it’s determined that CFS is not a disease but a condition of ‘unwellness’, it’s not trusted by many reseachers – within the broad confines of the research community it’s almost become a kind of rogue research group.
But it’s an important rogue research group – this is the group that people outside the field look to for understanding. This is the group, that for better or for worse, sets the tone for how this disease is percieved.
You have a chance to tell the CDC what you think of their research program. The CAA has provided an easy way to comment on the program or you can use this e-mail address: CFSResearchPlan@cdc.gov. You can also participate in the meeting via conference call if you get a place by April 22nd. Check out the CDC’s notice here. Below are my suggestions to the CDC on their program.
(1) The CDC Needs To Publicly Respond to CFID’s Association of America’s Charges – CFIDS Association of America accused CDC of mismanagement, squandering funding and low productivity – calling the CDC CFS Research Program “Research To Nowhere”. The CAA is a responsible organization that does not make charges such as this lightly. The CDC’s uses taxpayer’s money to fund their efforts and needs to publicly respond to these charges rather than sweeping them under the rug as they’ve done to date.
(2) The CDC Needs to Rewin the Trust of Both the Research and Patient Communities –The CDC’s CFS Research program has made few efforts to collaborate with the CFS research field in the last two years. Repeated conversations with researchers suggests the CDC CFS research team is considered ‘a group apart’ which displays little interest in most other research efforts. Neither Dr. Reeves nor Dr. Jones appeared at the bi-annual International CFS Research Conference in March which draws 100’s of CFS researchers and Dr. Reeves made only a token appearance at the Symposium on Viruses in CFS in 2008.
The patient population largely views the CDC’s CFS research team as ‘the enemy’. Their views have become more estranged with the CDC determining that CFS – which the CDC has shown produces disability outcomes similar to those found in kidney disease and multiple sclerosis – is a disorder of ‘unwellness’ which may (or may not) result in a real ‘disease’ at some point.
This tone-deaf assertion belies the fact that studies indicate that this disorder causes $20 billion dollars a year in economic losses, is chronic and often life-long, and often prevents patients from supporting themselves and their families. It’s emblematic of how out of touch the current CDC CFS Research program is.
(3) Empirical Definition Reduces Relevance of CDC’s Work – The Empirical Definition redefined the disease to such an extent that the CDC’s study results cannot be compared to studies using the standard (Fukuda) definition of CFS. Although the Empirical definition was published six years ago thus far no studies (that I am aware of) outside the CDC including those funded by the NIH have utilized it. Since CDC studies now incorporate a very different population of patients than virtually all other studies their results lack relevance to the rest of the field. This means that the biggest single CFS research effort in the world is marching out of step of the rest of the field.
(4) Lack of Collaboration Doomed the Empirical Definition to Failure – This break in continuity is partially the result of the way the new definition was created. The CDC acted in a collaborative manner when it convened an international group of researchers to create what became the standard definition of CFS (‘Fukuda’) in 1994 but CDC management ignored the substantial expertise found in the CFS research community in 2003 when it convened an in-house team to create the specific criteria for the Empirical definition. This small team ended up creating a definition that’s at odds with consensus view of much of the research community.
(5) CDC ‘s Approach Is At Odds With Much of the Research Field: CDC’s ‘Empirical Definition’ discounts fatigue – the hallmark symptom of the disease – to such a level that severe fatigue is no longer needed to fulfill the definition of ‘chronic fatigue syndrome’. As CDC redefined the fatigue out of chronic fatigue syndrome researchers under the auspices of the International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) and the Canadian government’s health agency created two definitions (Pediatric Definition/Canadian Consensus Definition) which asserted that a particular kind of fatigue – post-exertional malaise – is central to this disorder.
(6) Empirical Definition Needs to Be Reformulated – Rather than leading the field the Empirical Definition is now an albatross hanging around the CFS Research Teams neck. The Empirical definition either needs to be reformulated such that the research community ‘buys into it’ or it should be abandoned.
(7) CDC Research Team Repeatedly Fails to Follow Standard Research Criteria – CDC’s CFS research team failed to follow standardized study criteria when it repeatedly included sets of patients (major depression) in it’s studies that the Empirical definition and the Fukuda definition specifically excludes.
(8) CDC Has Failed in Its Duty To Search For Subsets – CDC broadened the definition of CFS considerably – increasing prevalence estimates fourfold – and therefore including new types of patients in an already vaguely defined disorder. Once CDC did this it was incumbent on them to make a vigorous effort to define subtypes in this disorder. Yet CDC has not published any studies attempting to define the subsets found in the patient group identified by the Empirical Definition.
(9) CDC Research Effort into CFS Pathophysiology Has Deteriorated Over the Past Two Years – CDC participated in extensive and productive collaborative efforts with the Pharmacogenomics Projects. Since then CDC productivity has diminished greatly. Of the six papers produced in 2008/2009 five used data collected from 1997-2002 – only one used current data. CDC needs to dramatically increase research productivity into the pathophysiology of CFS.