Talk Is Cheap

In today’s guest post, Denise Lopez-Majano makes the case that the time for talk is over and the time for action is now.

moneyFor decades, stakeholders have advocated for funding commensurate with the severity of ME/CFS. The government’s response has been to hold an occasional meeting, commission a report from time to time, and little if anything has changed. More words are spoken, with clinicians and researchers saying things that have been said before. But officials haven’t followed through with the necessary funding increases or with the sustained attention required to address this severely disabling disease whose economic impact wildly exceeds the paltry dollars allotted to research.

For example, NIH hosted a State of the Knowledge Workshop in April 2011. The report from that meeting bears a great deal of resemblance to the NIH’s Pathways to Prevention (P2P) Workshop report published in June 2015. Four years have passed, but the situation remains the same.

Both reports acknowledged patients’ suffering.

2011: Individuals with ME/CFS, their families, and their caregivers have gone through untold suffering and difficulties from a disease that is poorly understood and for which there is relatively little to offer in the way of specific treatments. (p.5)

2015: Unfortunately, ME/CFS is an area where the research and health care community has frustrated its constituents, by failing to appropriately assess and treat the disease and by allowing patients to be stigmatized. (p.2)

Both reports recommended research on biomarkers and epidemiology.

2011: Continued research on biomarkers for ME/CFS, including biomarkers that are mediators of the illness, has the potential to aid in diagnosis, and treatment and prevention. (p.15)

2011: There is a lack of longitudinal, natural history, early detection, pediatric-versus-adult-onset, and animal model studies. . . . In addition, few studies look at comorbid conditions, biomarkers, or genetics.  (p.18)

2015: Research priorities should be shifted to include basic science and mechanistic work that will contribute to the development of tools and measures such as biomarker or therapeutics discovery. (p.8)

2015: Epidemiological studies of ME/CFS, including incidence and prevalence, who is at high risk, risk factors, geographical distribution, and the identification of potential health care disparities are critical.   (p.11)

Both reports recommended a network of collaborative centers.

2011: Creating coordinated and collaborative systems for sharing research was an important topic that included creating standard operating procedures for the field, within and across labs, as well as common data elements. (p.18)

2015: Create a network of collaborative centers working across institutions and disciplines, including clinical, biological, and social sciences. These centers will be charged with determining the biomarkers associated with diagnosis and prognosis, epidemiology (e.g., health care utilization), functional status and disability, patient-centered QOL outcomes, cost-effectiveness of treatment studies, the role of comorbidities in clinical and real-life settings, and providing a complete characterization of control populations, as well as those who recover from ME/CFS. (p.15)

Both reports recommended central repositories.

2011: To capture the extensive information from such studies, a centralized interactive database, using common data elements and accessible to everyone, is sorely needed to collect, aggregate, store, and analyze results.   (p.18)

2015: Biologic samples (e.g., serum and saliva, RNA, DNA, whole blood or peripheral blood mononuclear cells, and tissues) and de-identified survey data should be linked in a registry/repository to understand pathogenesis and prognosis, and facilitate biomarker discovery. (p.11)

Both reports highlighted the urgent need for consensus on case definition.

2011: Throughout the Workshop, participants identified opportunities for advancement in the current research paradigm for ME/CFS, beginning with a need to define and standardize the terminology and case definitions.   (p.6)

2015: Define disease parameters. Assemble a team of stakeholders (e.g., patients, clinicians, researchers, federal agencies) to reach consensus on the definition and parameters of ME/CFS.   (p.9)

2015: Thus for progress to occur, we recommend (1) that the Oxford definition be retired, (2) that the ME/CFS community agree on a single case definition (even if it is not perfect), and (3) that patients, clinicians, and researchers agree on a definition for meaningful recovery.   (p.16)

Both reports highlighted the need for collaboration and new scientists.

2011: The study of ME/CFS can benefit from an interdisciplinary collaborative approach using well-connected clinical and research networks. . . . Moreover, additional highly qualified investigators must be attracted to study ME/CFS.   (p.18)

2015: [T]here is a need for partnerships across institutions to advance the research and develop new scientists.   (p.14)

Both reports noted the need for educated clinicians.

2011: However, the biggest barrier to treating patients, according to Workshop participants, is lack of informed clinicians… (2011, p.6)

2015: Thus, a properly trained workforce is critical…   (p.14)


If I just listed the quotes without telling you which report they came from, I bet you would not be able to tell which were from 2011 and which were from 2015. That the same points are repeated without substantive differences illustrates how little has changed, other than the year the report was issued.

Perhaps time moves at a different pace for those in charge of allocation of funds and they don’t feel the urgency we feel. However, for more than thirty years patients have grown up, lived and died, all the while being subjected to disdain and neglect. Failed policies mean there are no treatments, and this horrid disease is so disabling that patients usually live isolated, impoverished lives.

We NEED better and we DESERVE far better than occasional federal lip-service and occasional meetings.

  • We (patients/caregivers, healthcare professionals, policy makers, HHS) need to be very clear about the disease being addressed.
  • We need a total overhaul of federal policy regarding this disease with stakeholders as active participants.
  • We need a sustained and meaningful increase in biomedical research funding and we need it now!
  • We need an awareness campaign like the one outlined here.
  • We need to be meaningfully involved at every step of the way in all of this.
  • We want and deserve to have our productive lives back! NOW!
  • We need to work together in a sustained manner to push for these changes.

And HHS ABSOLUTELY must do its part. The IOM report has been out for months and the P2P report is out now, yet there is no indication from HHS as to what they are going to do with these reports. So HHS – tell us – what you are going to do and when you are going to do it?

Talk is cheap. It’s relatively easy and cheap to hold a meeting and write a report. Investing the requisite resources in research and building the infrastructure needed to sustain progress is hard work. It’s expensive. But this is what is needed. Not more meetings. Not more spin.

Talk is cheap. It’s time to show ME the money.

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12 Responses to Talk Is Cheap

  1. Simon McGrath says:

    Thanks for a brilliantly-argued blog

  2. seesir says:

    Thanks for putting everything into perspective….again. Sounds like doing the same thing over and over and expecting better results. Where to find a high-profile individual who can put a face (and funding) on this disorder???

    • Jim Ellsworth says:

      I couldn’t agree more. And this principle includes advocacy. Sending more letters, emails, petitions, and phone calls to Congresscritters or NIH bureaucrats will only result in more disregard of the illness. There are already famous people who died with this illness, like Blake Edwards (Pink Panther movies). It hasn’t made any difference.

      Forget all the blah blah they taught us in grade school about petitioning the government for redress of grievances. Politicians don’t care what we think. They care about what their donors think, and if their sales pitch is convincing voters to show up.

      If one wants to cure a disease, one must find out the cause. What is the cause of no-research-itis? Is is really a lack of letters from patients, or that the multi-billion-dollar NIH is broke? Does anyone seriously believe that Fauci and the other NIH politicians have never heard of this illness?

      Think carefully on this. For thirty years there has been a deliberate policy to denigrate patients and refuse to fund real research. Who made that decision, and on whose behalf? Who benefits financially? Once one can answer those questions, then a potentially useful strategy can be developed.

      Until then, we are just running around in circles convincing ourselves that we must be getting someplace, ’cause we’re so damn tired.

  3. Chris says:

    Thanks for a great piece, Denise–lays the situation out with clarity and punch. Gridlock, stasis, stubborn refusal to actually do something. I guess Obama has his mind elsewhere these days…. It would rank as comedy of the absurd it it were not so tragic in its consequences.

  4. billie moore says:

    A fine piece, Denise. Yes, time for action, without doubt. It’s the lack of numbers for the action that bothers me always. However, as I was reading, I concluded that first thing might be to send this whole piece as a letter to Secretary Burwell with as many signatories as you can get for it, copies to the members of the Health Committees of the Senate and Congress, and copies to anyone else we think it should go to.

    However, I do not think an awareness campaign is the way to go. The CDC funded such a campaign in the early 2000’s with the CFIDS Association, and it was a monstrous waste of something like $4 million! Did nothing noticeable to improve the knowledge of the public or doctors. The campaign MUST be targeted specifically for FUNDING! All or almost all of the actions suggested by the P2P require money. The IOM points out that much more research (read funding) is necessary.

    Enough with definitions, names, criteria. All important, but not as important as funding. ME certainly can’t be the only disease where the symptoms are different patient by patient but nevertheless similar enough to make diagnoses; we cannot wait for the perfect or a universally agreed-upon definition. Research is done without it, for sure. We need only to look at the CDC’s current multi-site study. Didn’t bother the CDC that the doctors themselves chose the patients without a formal criteria list being met as a requirement of the study. We can redefine definitions and criteria ad nauseam , but it will not move us forward NOW. NOW we need funding for the researchers that are out there and very anxious to work on the ME problem. This is where our action focus should be.

  5. Nita says:

    This is a excellent! I hope this is put into letter form that can be easily signed by as many of us as possible, in a concerted effort of ALL patient advocate groups, and sent to the appropriate people at the NIH. PLEASE!!

  6. Patty Hirst says:

    Thank you again for the blog, This blog is one way to keep informed for those of us that “don’t get out much”! I don’t know why it still surprises me that nothing is getting done. It seems that when you get a group of people together to talk about ME/CFS they talk a good talk, then walk away shaking their heads, and we are forgotten again! Thanks so much for keeping the issue at the forefront, and being an advocate for so many.

  7. Erik Johnson says:

    The problem is, and always has been…

    “The failure to agree on a firm diagnostic criteria has distorted the data base for epidemiological and other research, thus denying recognition of the unique epidemiological pattern of myalgic encephalomyelitis.”
    -Dr A Melvin Ramsay

    The only way around this is to take the decision away from squabbling ME and CFS advocates, and let the CORE EVIDENCE from the Royal Free outbreak “be ME”
    and the CORE EVIDENCE from the Lake Tahoe original CFS cohort to “Be CFS”

    Otherwise the endless bickering will go on forever, and the CDC knows it.

  8. cort says:

    Well said and nicely done Denise. Couldn’t agree more.

  9. Kathy D. says:

    Very well said and excellently written with clear points laid out. We should sign it and send it around to Congressmembers and our local political officials with a lot of signatures.

    I agree with all of it but I think we need a major demand to focus on, such as,
    “We, sufferers of ME/CFS, our medical providers and advocates, call for $100 million to be allocated by (Congress, NIH, who?) to research causes, biomarkers and treatments for this debilitating disease NOW!”

    Or a facsimile of the above.

    I wish someone (of a group) could do some kind of nonviolent civil disobedience action to get media attention.

  10. Joe Landson says:

    Denise, thank you for patiently laying out what we have long suspected, that the NIH is simply moving us around in a quality circle. I hope to protest at the NIH in the run-up to the Special Emphasis Panel meeting on 27-28 July. Maybe local folks can join me.

  11. Lisa Casey says:

    Very well said and I agree completely.

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