Today’s post comes from Denise Lopez-Majano. She makes a powerful argument for the kind of awareness campaign we need.
The release of the Institute of Medicine report resulted in an unprecedented amount of media coverage and public discussion. As has long been the case, not all comments and discussion have been constructive. In fact, the nastiness of many attitudes held by the public and healthcare providers makes the case for a large-scale awareness campaign to correct misinformed views about patients and this disease.
In his post Alone in the Woods, Joe Landson aptly points out that we all have at least one “dear” friend who knows all about the simple way to overcome our disabilities. These people bubble over with bad advice. But in the 10 weeks since the release of the IOM report, I have seen scores of disparaging and demeaning comments, so many that it was quite difficult to cull just a few.
For example, there are published comments such as this, on an article in The New York Times:
me not frugal
California 25 February 2015
Those claiming to be suffering from CFS are often their own worst enemies. Even the writer uses the loaded word “ignorant” in reference to physicians who did not agree with her self-diagnosis. In my many years of dealing with chronic migraine and nerve pain issues — researching treatments, reading blogs, visiting the neurologist and other caregivers — I have come across innumerable self-diagnosed CFS martyrs, both in person and online. They tend to be people who rant, accuse, judge, whine, compete for who hurts the most, and hold on for dear life to that one thing that makes them feel special and deserving of sympathy. Chronic Fatigue Syndrome. The bald-faced truth is that CFS, whether it is a real medical condition or a compilation of malaise and unhappiness, is the life ring of attention seekers.
And these comments on a Medscape article:
Dr. Wallace Schwam Feb 10, 2015
Absent hard biological evidence, Chronic Fatigue Syndrome might [sic] lots of people as “Sick” who are in monotonous jobs, bad marriages, or plain bored with life.
Dr. James Weber Feb 10, 2015
A new name —–now “BIG PHARM” will come out with a new drug for it !! Oh…… I can see the profits rising !!!!! Nebulous disease, nebulous exam and no definitive test, prospective patients for life !!!! Whatever happened to SSRI’s ?
Views like those of Dr. Forbes, posted on an AAFP article about the IOM report, show up far too often:
Dr. Robert Forbes
3/5/2015 4:27 AM
I have been a family physician for 43 years.
Have practiced in rural Nova Scotia, the Canadian Arctic and Mississippi.
I am sorry but I don’t buy any of this!
I have had patients with chronic fatigue, fibromyalgia (which I call fibro- my life sucks!), attention deficit disorder, autism, chronic yeast infection, premenstrual dysphoric disorder, and now, systemic exertion intolerance disease. Try lazy!
All of them seem to want disability, disabled parking stickers, amphetamines, narcotics or Xanax. And they usually get them only to add to their problems.
I fear we contribute to this in a big way by legitimizing their complaint.
We have become a very dependent society, and I am ashamed and concerned.
Fortunately I am semi-retired and fear no retribution for my free speech.
I did try to be respectful.
Thanks for the opportunity.
Just saying…
RF
Dr. Forbes apologized in a second comment claiming he felt like venting to colleagues–but he vented in a public forum. The truth is that wherever he was venting, his comments are demeaning and derogatory.
It is completely inappropriate for healthcare professionals to speak publicly and disparagingly about patients. People must stop blaming patients for what they (HCPs and others) don’t yet understand. Indeed, the IOM report called out problems with views held by healthcare providers:
…a 2011 study found that 85 percent of health care providers still believed the illness was wholly or partially a psychiatric rather than medical one (Unger, 2011). Numerous studies also have documented skepticism among clinicians about ME/CFS being a distinct clinical entity (Bayliss et al., 2014). (p.257)
A third type of misinformation that must be addressed involves things like this tweet from 26 February 2015 by the Office of Women’s Health (OWH), which conflated chronic fatigue and ME/CFS:
@womenshealth
#Chronicfatigue is real, and women are 2–4x more likely than men to be diagnosed with it. http://go.usa.gov/zA4j #MECFS
It took the efforts of several advocates to get OWH to delete one erroneous tweet sent on behalf of the office that houses the CFS Advisory Committee (CFSAC). One would think that of all places within the Department of Health and Human Services (HHS), OWH as home to the CFSAC would disseminate accurate information. If OWH spreads incorrect information, there is obviously much to be done to ensure that all of HHS and its agencies understand this disease.
As a community, we don’t have the wherewithal to address each comment, or to educate each healthcare professional. The problem is far too widespread for our scant resources. And if we don’t have the capacity to educate healthcare professionals, it follows that we don’t have the capacity to educate the general public.
We must stop playing “whack-a-mole”.
The changes needed are far more extensive than simply a revised CDC Toolkit.
Mary Dimmock believes a policy reboot is necessary. I agree.
I believe that one component of the policy reboot must be a national awareness campaign. It must be a top-down, comprehensive, authoritative, fully-funded education campaign, one that is emphatically endorsed by HHS and that is clear about the disease under discussion.
A wide array of stakeholders (including patients, advocates, clinicians, and researchers) must be equal partners, in full and open collaboration with HHS in the development, implementation, monitoring, updating, etc. of the entire campaign.
The campaign must point only to validated criteria/material, and must be unequivocal that this is a physiological illness that causes severe disability and a heavy economic impact.
The campaign must include a timeline with clear objectives and goals, as well as provisions for accountability and consequences. It must incorporate an effective means of assessing the campaign’s progress and effectiveness.
In order for this campaign to be successful there must be several areas of focus:
- It must penetrate throughout HHS and each of its agencies.
- It must educate healthcare professionals in all specialties, professional organizations, professional/scientific journals, continuing medical education, medical schools, insurance providers, and licensing/accreditation bodies for healthcare professionals, as well as school nurses, pharmacists, home health professionals, and so forth, and must improve public and institutional policies.
- The campaign must have a public education component.
Each component must address stigma, bias, and misconceptions as well as emphasize assessment and knowledge of this disease, and the need for appropriate diagnosis and care. This campaign must nurture a culture of responsiveness and understanding.
The IOM report suggested the:
Designation of an HHS Point Person
HHS should consider appointing an individual to oversee the dissemination of the new diagnostic criteria nationwide to health care professionals (i.e., a “SEID” czar, within the department). This person should have access to the necessary resources and the authority to implement the dissemination plans for the new criteria and address any questions or concerns that arise. Having such an individual in place will also help demonstrate HHS’s responsiveness to this issue. (p.268)
To be truly effective, I think the campaign must be broader than what is suggested in the IOM report. HHS must partner with stakeholders to develop, implement, and aggressively disseminate a comprehensive education campaign designed to eradicate stigma and bias associated with ME/CFS. It must be absolutely clear about the disease and have the wholehearted endorsement of HHS. It must be fully funded, fully staffed, and take the time required to achieve the necessary changes in negative attitudes among healthcare professionals and the public.
Stuck? Four Months of Almost Nothing
In this guest post, Dr. Alan Gurwitt argues that it is time for ME/CFS advocacy to move on and move forward. The post first appeared on the website for the Massachusetts CFIDS/ME & FM Association, and is reprinted here with Alan’s permission.
image credit: The Poised Life
Four months have passed since the release of the report from the Institute of Medicine on February 10th. In spite of much thoughtful review and debate on the part of patient advocates to attempt to arrive at some consensus about an appropriate name and diagnostic criteria for this terrible disease, so far these efforts have changed nothing, nor will they make a difference without major changes in our tactics and attitudes.
The federal DFO’s (designated federal officers) come and go. The Chronic Fatigue Syndrome Advisory Committee (CFSAC) keeps making reasonable recommendations but is often ignored. There is not a peep from HHS and NIH. Indeed, except for some promising responses from the CDC, there is silence. Dr. Francis Collins, the director of NIH, says he is aware of the requests for greater NIH involvement but continues to do nothing. Dr. Anthony Fauci, in office since 1984 as head of the National Institute of Allergy and Infectious Diseases (NIAID), continues to make it clear he wants nothing to do with ME/CFS. While many agree that the work on ME/CFS belongs in one of NIH’s institutes with research funding, not in an unfunded Office of Women’s Health, there is no person or group at NIH and HHS who is leading the charge and no indication so far that the leaders of these huge “health” agencies have paid attention to the findings of the IOM report and the preliminary P2P report and plan to respond promptly and significantly. Some individual lower-level personnel have gotten the message and have done what they can, but overriding indifference has prevailed for thirty years and there are no signs of motivation to change. I believe only strong outside forces will cause HHS and NIH to change.
Under present circumstances, it does us no good to sit and wait another four months for the government’s response. Whether or not HHS and NIH respond we patients, advocates, researchers and allies in the medical professions must review and change our tactics and directions, otherwise we will remain stuck in nowheresville. We have tried for years, with some success to make our illness and cause known but our struggle too often is ignored or seen as unwelcome. At times it seems like war for recognition and survival.
Alone, we are weak, vulnerable, and ineffective. We must supplement and organize our forces and improve our strategies going forward.
So, where should we go from here? I believe that there needs to be a series of coordinated steps to build an effective and constructive force. As I see it, the possible steps are the following:
I believe the IOM and P2P reports are game changers if we utilize the achievable big findings and recommendations. Of course name and diagnostic criteria are important but it is only with further research that both will become clear. The other big findings which we can propel our work now are:
In summary, nothing will change until we change. We must not keep waiting for the federal health agencies nor should we go it alone. We must take a series of steps. One step is to create a multi-pronged coordinated and comprehensive effort to recruit congressional support. We must also build a strong national coalition of patients, advocates, and professionals. We have many wonderfully informed, thoughtful, and active patient advocates among us but our failure to coalesce has created a major obstacle. The challenges are great so our efforts must be greatly smarter, focused, and more effective.
Failure to change our efforts and directions will doom us to remaining stuck. We should utilize our own capacities and wait no more.
Dr. Alan Gurwitt’s opinions here are his own and do not represent the Mass. ME/CFS and FM Association and its Board.