Guest Blog: Changing the Conversation – IOM Report Sparks Re-evaluation of ME/CFS in the Media

We took a huge leap forward this week in defining, legitimizing and ultimately finding a cure for ME/CFS. On Tuesday, the Institute of Medicine issued a forceful report that sharpened and simplified the illness’ diagnostic criteria, legitimized it as physical, not psychological, and recommended a new name designed to more accurately capture the defining traits as currently supported in the research: Systemic Exertion Intolerance Disease (SEID). The IOM committee that conducted the study over an 18-month period also stressed in its report that more research was “urgently needed.”

The announcement by the IOM generated a flurry of coverage in national media outlets, including the New York Times, the Washington Post, CBS News, the Associated Press and NBC Nightly News (more than 300 articles and stories). SMCI President and CEO Carol Head was featured in the NBC Nightly News piece and though many of her more substantive comments hit the cutting room floor, we are thrilled for the national coverage of our disease.

A medical contributor for the network made comments in the segment that elicited a strong reaction from our community, suggesting that exercise and cognitive behavioral therapy could be “very effective” in treating the illness. Like many in our community, we felt strongly about the inaccuracy of the statements, which contradict the research, and we urged NBC to issue a correction. This was posted today: http://www.nbcnews.com/nightly-news/chronic-fatigue-syndrome-gets-new-name-n305191.

While this segment contained information that is not in line with our knowledge base, we should not overlook the extraordinary gains we have made this week in drawing attention to our illness, which has been misunderstood for far too long.

In a recent blog post on Health Rising, Cort Johnson does an excellent job of looking at the IOM report, how it is changing the conversation in the mainstream media, and the potential implications for the future. With his permission, we are republishing his post in its entirety…

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Health Rising: Changing the Conversation: The IOM Report Sparks Re-evaluation of ME/CFS in the Media
by Cort Johnson

ThinkDifferent

I assert that for ME/CFS it’s all about changing the conversations or narratives around it that are keeping it poorly funded and mostly ignored. Once those conversations change everything else will change. What was impossible beforehand will suddenly become not just possible but natural.

In this blog we check out what conversations the IOM Report “Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness” is triggering in major media outlets. Very quickly we can see two major messages the media is taking from the report are:

  • Chronic Fatigue Syndrome (or SEID) is a real and serious disorder that has been misunderstood and underfunded for years.
  • It’s main feature is not fatigue but exertion intolerance: i.e. the inability of patients to exert themselves without getting hammered.

That ME/CFS is not considered a real disease yet may be more than a bit upsetting to those that have it, but consider the possibility that the real reason ME/CFS is not getting the funding it should is because, in the places that matter, it’s embedded in a conversation or narrative that says it’s not a real and serious disease.

The key is to switch the listening at the NIH and CDC’s from something like ME/CFS “is not a real priority”  to ME/CFS is a”real and serious disease and is a priority”.  Once that message really gets home, it will start being treated like other “real diseases” and get the appropriate funding and support.

Let’s see how this report is contributing to that change of conversation in the media.

National Public Radio

“Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It”

NPR stated the obvious to us – that ME/CFS is a real disease – but not apparently everyone else as it lead with “Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It”. NPR began their article powerfully stating:

“Because there is no specific test for SEID, many people who have it haven’t been diagnosed, and healthcare professionals often have viewed patients as complainers whose symptoms are psychological, not physical. But a 15-member panel of the Institute of Medicine, an independent government advisory body with a lot of clout, says otherwise. In a report released Tuesday, the panel writes that the condition “is real,” and admonishes clinicians, “It is not appropriate to dismiss these patients by saying ‘I am chronically fatigued, too.’ “

Later Dr. Bateman illuminated how the name was chosen. Every word, she said, was packed with meaning. Systemic refers to the whole body impact that exertion has. Intolerance denoted impairment. Because the word disease had stronger connotations than the word disorder, it was chosen.

WebMD

“U.S.- appointed panel says illness is’legitimate”

WebMD doesn’t have the worst or the best ME/CFS information on the internet, but this very popular medical website had one of the best overviews of the report on the internet.  Scoring second on a Google search, it was definitely getting around.

WebMD’s  secondary headline “U.S.- appointed panel says illness is’legitimate” emphasized two important facts – the IOM panel was a federal job all the way  – with all the heft that implies –  and that ME/CFS is a real “disease”.NewDoor

The article featured Suzanne Vernon of the Solve ME/CFS Initiative (SCMI) stating she believed the report would provide a watershed moment for this disorder:

“I believe we are at a tipping point for people suffering from ME/CFS, where we are going to be able to get people diagnosed, and with that diagnosis comes the ability for us to really lay the groundwork for much more effective treatment for ME/CFS,” Suzanne Vernon

Dr. Clayton emphasized the need for more research and then repeated – this disease is real and serious. The only figment of imagination regarding whether or ME/CFS or SEID exists in the minds of MD’s and medical professionals who pooh-pooh it:

“We expect and hope more research in the future is going to allow the refinement of this diagnosis. This is not a figment of their [patients’] imagination. This is an all-too-common, complex disease that needs to be diagnosed.”

Doctors who continue to dismiss ME/CFS are going to have to have to ignore a report stating otherwise from one of the most prestigious medical research institutions in the world. WebMD did a good job, but after it featured an ME/CFS patient stating that before chronic fatigue syndrome “I could run up a flight of stairs and be a little winded but otherwise fine. Now when I do it I feel like I’m on the edge of collapse. You feel like you’ve been hit by a train”, it may want to rethink its page saying that “most people with CFS” feel worse after “strenuous” physical activity. This will be a time of reeducation for many.

Nature

In their news section, Sara Reardon of Nature – one of the most popular science journals in the world – quickly highlighted the key finding of the report – that “the key symptom of the disease  (is) the body’s inability to tolerate any exertion”. Every time that finding gets  the disease gets redefined in the eyes of the public. Note that Sara said it was the “body’s” inability  – not the mind’s inability – but the body’s inability to tolerate exertion that was key.

It was kind of ironic to see Dr. Peter Rowe  of all doctors being quoted as saying that the new diagnostic criteria  “will in the end get more people cared for and treated,” given  he’s been overwhelmed with patients for years. Jarred Younger of the Neuroinflammation, Pain and Fatigue Laboratory at the University of Alabama at Birmingham believes the report will prompt a “drastic” increase in the number of diagnoses made. That’s good news those patients and it’s very good news for the movement as a whole. More people means more support and more effective advocacy. The report should help with that, though.

WebMD, a website focused on doctors and patients, pointed out in its article on the report that  between 84-91% of people with ME/CFS are not diagnosed – a fact that underscores the need for federally funded COE’s. The report provides a strong platform for the ME/CFS community to demand more resources, and federally funded Centers of Excellence (COE)  would top the request list in that regard.

The recent work from the federal advisory committee on “CFS” (CFSAC) to document the need for COE’s is looking more and more timely all the time.

Medscape

IOM Gives Chronic Fatigue Syndrome a New Name and Definition: In one of the best reports on the web,  Dr. Clayton elucidated more reasons for the name in Miriam Tucker’s  Medscape piece stating:

“There’s a long history in medicine of symptom-based diagnostic names…. Until the etiology is better known, we wanted to focus on just the central symptoms of the disorder. This is really is the result of the current state of the science”.

The committee agreed that the evidence did link chronic fatigue syndrome to immune dysfunction and infection but it wasn’t strong enough yet to base a name on it. The cardiopulmonary tests impressed Dr. Clayton enough for her to emphatically state that “The level of response is much more than would be seen with deconditioning,”  Dr Rowe pointed out the obvious – which apparently needs to be repeated again and again – that deconditioning could not play a role in people who were physically active before they suddenly  became ill.

While many in the ME/CFS community have been understandably wary of putting their future in the hands of outsiders, Dr. Rowe found that the non-ME/CFS experts in the committee quickly came to the same conclusions as the ME/CFS experts. That suggests that a key aspect of building allies simply requires finding ways to get people better informed about this illness is  Once they are – they get it.

“It was a unanimous committee report…. It was interesting for us who are clinicians in the field to see how obvious the direction of the evidence was for those who are scientists, but not specialists in this area.”

Dr. Peter Rowe Dr. Clayton – the outsider turned advocate – suggested that the science is moving quickly enough that they may have to reassess their findings not in five years but perhaps in two or three.

“We really think this is an area where things are moving relatively quickly. If, as we hope, what this report does is elicit greater interest and a greater recognition from entities that they need to be funding more research, and if in fact the research ramps up in the way we hope that it will, it would be lovely if we knew enough in the next 2 or 3 years that it was time to reexamine this.”

Younger believes the report will have a “long-lasting” effect on the field and that we are finally seeing a “true push to recognize SEID as an important medical entity”.

In a SFGate report “Fatigue syndrome validated by influential group“ Dr. Jose Montoya, the leader of the Chronic Fatigue Initiative at Stanford University asserted that this report has the potential to fundamentally change the narrative surrounding this illness.

“The Institute of Medicine was able to come out and say this is real, it’s chronic and it devastates many lives…For 30 years very few voices were saying that and people were not listening. And now here comes an institute with such visibility and clout, saying those words…..(The report) has the potential to change the narrative of this disease”

Choices

The IOM report will help to break the hold on the inaccurate conversations around ME/CFS that have allowed federal funders and others to essentially ignore it. How big of a change it will make is, of course, unclear.

The Feds have a choice at this point – agree with the reports findings and significantly ramp up research funding and fund Center’s of Excellence –  or find a way to dismiss the report, and go on their way as they have in the past. The Feds are the major emphasis because they control an enormous amount of medical funding, but it’s hard to imagine that this report isn’t also having very positive effects at the research centers at Stanford, Columbia, Nova Southeastern University, the University of Alabama at Birmingham  the Univ. of Nevada at Reno that are studying ME/CFS as well.

A rising tide lifts all boats.

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Reprinted with permission: Changing the Conversation: the IOM Reports Sparks Re-evaluation of ME/CFS in the Media
http://www.cortjohnson.org/blog/2015/02/11/iom-re-evalution-chronic-fatigue-syndrome-media/

Tags: , , , , , , , , , February 13, 2015
  • Firestormm

    Thanks.

    Not sure IOM actually “legitimized it as physical, not psychological”

    Clayton is quoted as saying: “This is not a figment of their imagination. This is not somaticizing. This is a common, all too common, complex disease” Health Rising.

    And also that the disease is ‘real’. But for people with a psychological illness or disease the experience is just as real.

    The article in Nature has been corrected for making this distinction: correctly so in my view.

  • elegiamore

    Everybody, and amazingly Cort, are just fooling themselves if they think this makes a bit of difference as doctors will still refuse to take any CFS/ME patients for the foreseeable future; I’ve called, year in and out, every immunologist and infectious disease doctor countrywide and not a one will see a CFS patient. The so-called experts have caused me great physical harm as well with improper treatments. Nothing here will change that, for ages and ages to come. Just letting the CFIDS Organization take an UNDESERVED PAT ON THE BACK – not helping PATIENTS, for decades now. Most likely there IS NO CFS, but it is a mild form of POTS. Even the new diagnosis info states that orthostatic hypotension is required for diagnosis – that’s POTS, not CFS/ME.

  • David Patton Barone

    This recent article in is more encouraging than the report because it identified cytokine alterations as a biomarker. Doctors aren’t going to believe until one or more of these are substantiated.

    See: http://www.nytimes.com/2015/02/28/health/chronic-fatigue-syndrome-study-findings-may-lead-to-diagnostic-tool.html?ref=hea.
    The article is at: http://advances.sciencemag.org/content/1/1/e1400121

  • Sharon Scott

    Over 20 years ago two MD’s saw patient “clusters” with these symptoms in their practices on opposite sides of our country. Their constant demands that NIH look at these, were rejected many times and then very superficially investigated. In one MD’s interview, he thought it was deliberately superficial. I am paraphrasing. I think there is a minefield ahead re: what causes this disease. I encourage others to learn about this history.