By Lisa Petrison, Ph.D.
Originally published on the blog “CFS Untied” in March 2011
On February 18, 2011, the British medical journal “The Lancet” published a research study conducted by a team of psychiatrists and funded by the UK Medical Research Council, the Department of Health for England, the UK Department for Work and Pensions, and the Chief Scientist Office for the Scottish Government Health Directorates.
The research project cost about 5 million pounds (US $8 million). It reported that Cognitive Behavioral Therapy (CBT – psychotherapy designed to help patients to accomplish specific exercise goals) or Graded Exercise Therapy (GET – physiotherapy encouraging light exercise within target heart rate ranges) had been shown to be helpful to people suffering from Chronic Fatigue Syndrome (CFS) and receiving no other treatment.
Because “The Lancet” is a historically respected journal, the study received a great deal of media attention in both the US and the UK. CNN ran a story and invited Kim McCleary, president and CEO of the CFIDS Association of America (CAA), to participate.
The CAA is the only large US charitable organization with the stated mission of addressing Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME). Its yearly budget is about $1 million. Ms. McCleary has been the head of the organization since 1991.
There were many comments that, speaking on behalf of the CAA, Ms. McCleary could have made about this topic.
She could have explained that in the US, CFS is defined as a disease with a number of very specific symptoms in addition to fatigue, and that it thus would be inappropriate to assume that the results of the UK study — which used fatigue as the sole criterion — are relevant to people who have been diagnosed with it in the US.
She could have pointed out that despite the extensive intervention in the study (14 or more sessions of physiotherapy or psychotherapy), patients experienced only a 10% average improvement in terms of their self-reported fatigue, their self-reported physical functioning and the distance they could walk in six minutes compared to those receiving no treatment.
She could have brought up the reported study result that GET and CBT did nothing to help with cognitive problems, which are at least as debilitating as physical fatigue for people suffering from CFS (US definition).
She could have suggested that there are hundreds of studies in the literature that show that psychotherapy and doing exercises suited to one’s physical condition are mildly helpful for anybody, and that it would have been a surprise if this population had been an exception.
She could have drawn attention to the human gamma retroviruses that have been found in some studies to be associated with specifically defined subsets of patients suffering from CFS, and suggested that the 5 million pounds would have been better spent studying them in the hope that this would lead to a cure rather than to the usage of clinically trivial palliative measures.
She could have noted that the theory behind this study was that people are “deconditioned,” and that this is inconsistent with the fact that many people with CFS (US definition) start out as highly athletic but then drop overnight into being permanently too weak to get out of bed or so lightheaded that they need to crawl to the bathroom.
She could have referred to the dozens of previously published studies in the literature that show that CFS (US definition) is a multi-systemic disorder characterized by specific immune and neuroendocrine abnormalities and many other specific physiological dysfunctions, resulting in a severe flu-like exhaustion that has nothing in common with deconditioning.
She could have emphasized that no one has suggested that CBT or GET is in any way a cure for CFS (regardless of the definition), and that the authors of the study admit that “research into other more effective treatments is needed.”
She could have brought up the fact that studies like these are often misinterpreted to mean that CFS is the result of laziness, thereby making it difficult for people who are physically sick to get appropriate treatment, disability benefits, or the support of employers or loved ones.
She could have spoken out about how in the UK, practitioners misusing “CBT and GET therapy” have repeatedly committed the sickest ME patients to mental institutions and forced them to exercise to the point where their condition becomes permanently worse — a situation that has caused many people with the disease to be afraid to go to health care clinics for any reasons at all.
Instead, in the CNN interview, Ms. McCleary bemoaned the fact that the interventions from the study are not available to patients in the US:
“The president and CEO of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, Kim McCleary, said the study focused on treatments that many in the United States have no access to.
“‘I think it would be challenging, at least in the US system, to purchase the services that they’ve tested in this trial,’ she said in a telephone interview.
“The alphabet soup of acronyms that represent the interventions used in Britain is ‘just not something that our health care service offers, is reimbursable, or is really available here,’ McCleary said.”
Patient discontent with the CAA had been brewing for a long time, but this particular comment brought things to a head. Hundreds of patients signed a petition disassociating themselves from the organization. A poll on one previously balanced patient forum reported that 92% of respondents believed that “The CAA needs to change direction and leadership.”
An article in the New York Times reported on the patient response to the study:
Two weeks after the CNN interview, the CAA expressed a different sort of opinion in a letter submitted to the editors of “The Lancet” and distributed to members in an e-mail:
“In their recent paper on the PACE Trial, White et al conclude, ‘Our finding that studied treatments were only moderately effective also suggests research into more effective treatments is needed.’ However, the public will likely only read headlines like this one, ‘Talking and exercise could cure ME – study.’ Such tidy conclusions are dangerous. They contribute to dismissive attitudes about chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) and undermine understanding of its severe and life-altering impact. They vastly oversimplify the individual patient’s ability to recover his or her health. As a result of reading quips like this, patients may attempt more aggressive regimens than their bodies can withstand and professionals may recommend and/or deliver services that are not tailored to the restrictions imposed by CFS, especially post-exertional relapse.”
Certainly, it’s gratifying to see that patient input — if forcefully expressed — has an impact on what the CAA says publicly. If this were the only misstep the organization had ever made, and if it were clear that it planned to work hard not to let anything similar happen in the future, most patients likely would be willing to put the situation to rest and move forward.
The problem is that the past 19 years have consisted of nothing but missteps on the part of the CAA. For example, here are some basic things that might be reasonably expected of a charitable organization serving a population of patients suffering from a devastating disease — and how the CAA has mishandled each of them.
1. Convey to the public that the disease is a serious one.
This one should have been easy.
Starting from the Lake Tahoe epidemic in the mid 1980s, it’s been clear that this illness very frequently grabs people who are young and vibrant and successful, dragging them suddenly down into a twilight existence of permanent pain and disability. Symptoms are often extremely severe and bizarre. Weird memory losses can cause people to become hopelessly lost in their own neighborhoods and not remember the words for common objects such as “trees.” Some spend decades in darkened rooms, unable to sit up or to tolerate any noise or sound, with a wide variety of excruciating symptoms. Lack of energy can be akin to paralysis, with the inability to raise a water glass or brush one’s hair frequently reported. And while half of all sufferers remain in the workforce at least part-time, their ability to experience the basic things that other people take as their birthrights — having children, spending quality time with friends and family, pursuing challenging and rewarding careers — is almost invariably compromised to a profound extent.
A number of physicians have commented that patients severely ill with this disease suffer the same degree of debilitation for years that AIDS victims do during the last six months of life — a powerful statement since public horror over the AIDS epidemic has been as much a result of the suffering that victims endure as of their deaths themselves.
Unfortunately, the CAA has almost without fail made this disease seem like it is one that is just a matter of people being really worn out. For instance, here is a 2007 print advertisement, funded by the CDC:
Here is a fact sheet, which is representative of the sort of abstract understatement that characterizes all of the organization’s descriptive materials:
Patients who want to impress upon doctors, employers, family members and others the seriousness of their disease are hard-pressed to do so with materials like these.
Even worse, the idea that this disease is just a matter of being tired has permeated society in general for the past 25 years, in large part because of the failure of the CAA to tell a different story through news media and other outlets.
Media coverage accurately depicting the illness has started to emerge during the past 18 months, in large part because of interest in the retroviruses found in two studies to be associated with the disease. However, almost all of the few stories that have run so far have originated from the efforts of other organizations or from individual initiatives, not from the CAA.
2. Champion those suffering from the disease.
The UK is not the only place where sufferers of this disease are robbed of their human rights. As a result of the lack of understanding of the seriousness of the disease, it happens in the US as well.
For example, Ryan Baldwin was diagnosed with CFS at age 11. Several years later, social services agency representatives in his North Carolina town took him away from his parents, charging them with Munchausen by Proxy (an unusual condition in which a parent misleads others into thinking that a healthy child is sick). Ryan spent a year in foster homes, staying with families who had been informed that there was nothing medically wrong with him.
A number of people requested that the CAA (headquartered in North Carolina) speak up for Ryan’s family. The organization declined, stating that it did not get involved in individual patient issues.
Intervening in the Baldwin family’s case would have made a powerful statement exposing the extent to which this disease can decimate the lives of people of all ages. It would have made it less likely that this sort of incident happened to other families in the US, and would have provided a solid example about how the disease should rightly be handled to the UK and other countries. Once again, an important opportunity to make a difference in the lives of patients was lost.
Ryan’s mother, Lisa, was unhappy enough with the CAA’s lack of response that she signed the petition disassociating from the organization. She wrote:
“We are right here in NC-we need better physician education and civil rights protections in NC- if not the CAA then who? www.bringingryanhome.com“
3. Aggressively pursue finding the cause of and a cure for the disease.
The precise role of XMRV and closely related retroviruses in this illness has yet to be determined. However, there is a great deal of agreement that if it does turn out to be a key factor, it could be a really important step in moving toward a cure for the disease.
It thus seems reasonable to think that the CAA would be doing everything in its power to make sure that that it receives the attention that it deserves.
The consensus amongst observers in this community is that this has not been the case. Instead, the CAA appears to have a strong inclination to distance itself from anything related to the retrovirus and to deflect attention away from it unless great pressure is put upon the organization to do otherwise in specific circumstances.
Why this would be the CAA’s consistent position is unclear. Considering what a breakthrough it could be for the disease if the retrovirus pans out, it seems very peculiar.
The CAA has failed patients on every other front as well: fundraising, activism, sponsorship of worthy research, lobbying, developing community resources, working with the business community and other potential supporters, and fiscal responsibility. Certainly Ms. McCleary must do something to earn her $178,000 a year salary, but it’s hard to imagine what that might be based on the results the organization has achieved.
However, the worst thing about all of this is not that the CAA cannot be trusted to speak to the media in ways that are not counter to patient interests. Nor is it the many things that the organization has done wrong or the many things that it has failed to do right.
Rather, the real problem is that the very existence of the CAA prevents others from doing things of critical importance with regard to furthering patient interests. Insofar as the CAA is widely perceived as being the accepted advocate for patients, other organizations and individuals have a much harder time stepping in to fulfill that role regardless of how good of a job they would do in it.
As they age, organizations can become self-serving and self-perpetuating entities, offering appeasements to the people they are supposed to be serving only when faced with threats to their existence. In this case, the stakes and the potential alternative opportunities are great enough that patients should decline to be mollified.
Prior to becoming disabled, Lisa Petrison completed her PhD in marketing at the Kellogg School of Management at Northwestern University. She has had Myalgic Encephalomyelitis — known in the US as Chronic Fatigue Syndrome — since 1996.