“Keep Track. Keep Asking.”

This is the public comment I delivered by telephone to the CFS Advisory Committee today.

Thank you to Cort Johnson for representing me at the speaker’s table, since I am too ill to be with you in person. I am not an invisible sufferer.

Actions speak louder than words. Unfortunately, most of what we hear from the Department of Health and Human Services is words. Words and empty promises.

Despite all the effort you have invested in making recommendations to the Secretary, there is very little action to report. HHS updates the Recommendations Progress Chart for this Committee twice a year, and I assume that you examine each version closely. This Chart is the only public metric for progress at HHS, and it is disappointing to say the least.  In the last twenty months only three of your recommendations have been marked with updated responses, and many of the recommendations marked complete have not actually been accomplished as you intended.

I compared the Progress Charts dated October 2010, March 2011, and December 2011, which is the most recent version I have. Each chart was updated to add the new recommendations from your meetings, bringing the total number to 65. Apart from that, the progress reports were as follows:

Regarding your recommendation that AHRQ’s expected review of CFS for the State of the Knowledge meeting should be widely communicated, the March 2011 progress chart stated that NIH is in discussions with AHRQ regarding the review. But as you are aware, no AHRQ review was completed in time for the State of the Knowledge meeting or since. No progress there.

Regarding your recommendation that several agencies collaborate on developing a demonstration project focused on more effective care for people with CFS, the March 2011 progress chart stated that additional knowledge of causes, care coordination, and treatment for CFS is needed before this can be undertaken. No progress there.

Regarding your recommendation that HHS engage the expertise of the CFSAC to advance policy and agency responses to ME/CFS, the December 2011 progress chart stated that several members helped plan the SoK meeting and review the CDC website. It’s better than nothing, I will admit, but I don’t believe that meeting planning and website content review is where you can add the most value to the policy and agency responses to ME/CFS.

That’s it. Three progress updates over a period of twenty months, and those updates were No, No, and Ongoing.

Furthermore, I direct your attention to items like your 2006 recommendation that NIH issue an RFA with specific funding attached. That recommendation is marked Yes/Complete, and the note states that two Program Announcements were issued in 2008. But we know that Program Announcements do not have dedicated funding attached, and no RFA has been issued by NIH in six years. Despite that significant discrepancy between your recommendation and what has been done, this is reported to you as accomplished.

What are we to conclude from this? We always hear nice promises at these meetings. There is always the illusion that real progress is being made, that things are beginning to change. But to me, the lack of progress on your recommendations – and the lack of accountability at HHS for ignoring your recommendations – is the true barometer of where we are. Committee members, don’t mistake these updates for real progress.  To borrow from Dr. Grobstein’s comments yesterday, “Keep track. Keep asking.”

Actions speak louder than words. In our case, inaction speaks louder still.

Fourteen months ago, Dr. Frances Collins announced that the Secretary had directed that CFS be given “special attention.” Is this what special attention looks like? Maybe it’s just me, but I am not seeing much difference between the special attention we are allegedly receiving now and the lack of special attention we had before. I am thrilled CDC is revising some of its materials, but that is not enough. Meeting with patient groups is not enough. I signed the Joint Letter from advocates and groups because HHS must undertake a strategic, coordinated, and fully-funded effort to address the critical priorities for adequate ME/CFS research, treatment and provider education.

I call on HHS to put an end to this perpetuation of the status quo cloaked in words and promises. Do something real. Act on this Committee’s recommendations. We need answers. We deserve action.


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11 Responses to “Keep Track. Keep Asking.”

  1. LJ says:

    Well said, Jennie! am proud of you and your diligence!

  2. Thank you for this, Jenny, and thanks for reading it, Cort. I had to give my testimony by phone, and today (Thursday 6/14) had to be in NYC for my Ampligen infusion. We have family matters and a little more notice would have been helpful.

    I agree about the words without substance. How can CDC claim to have listened to a word their consecutive said, yet leave CBT/GET (Cognitive Behavior Therapy and Graded Exercise) the recommended treatment for patients? Why are the still mailing out copies of the old, erroneous and dangerous, Toolkit for Professionals? Do they think they can keep pulpit this off in time to retire and get pensions?

    How do they sit there and hear that testimony by and about young people, and then look themselves in the mirror? I do not understand.

    Were you given any assurance of a response to this hastily patched together panel? Or was it another show, like the conference calls, to say to their superiors that they were listening to their constituents, when actually they hear nothing that we say?

    Thank you again for speaking out.


    • Jennie Spotila says:

      Thank you, Mary. No, not surprisingly there was no promise of a response to my (or anyone else’s) comments.

  3. In paragraph 2, That should be constituents, not consecutive. And in the third paragraph, putting instead of pulpit (!). I-Pad on a train …

  4. Otis says:

    Great job Jennie!


  5. rivka says:

    thank you! i appreciate all the patients and their families who spoke at cfsac. you have more patience than i do. 🙂

    looking for some special attention,

  6. Alex Young aka alex3619 says:

    @Mary Schweitzer

    Hi Mary, we understand the problems writing. I am making horrendous spelling mistakes more and more, and in particular one thing: I am writing near homonyms all the time. I think that we are using our spoken language skills to supplement our limited written capacity so they get confused.

    I full endorse everything you said at CFSAC Mary. We need substance not spin, and should only be accepting deliveries not promissory notes.

  7. Alex Young aka alex3619 says:

    I would like to thank Jennifer for her presentation at CFSAC. I also fully agree with her comments. Bye, Alex

  8. Barbara Fifield says:

    I was getting so frustrated listening to the meeting until Mathew and Jenny spoke. They reached down to the very heart of the matter and in such an eloquent manner. We’re sick of the illusion. Give us some action!

    Powerful advocacy from both of you! Thanks so much.

  9. Justin Reilly says:

    This was really valuable testimony on an important issue. Thank you!!

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