CFSAC Spring 2013 (May 22-23): How to Participate

May 8, 2013

Jennie Spotila looks forward to the next meeting of the CFS Advisory Committee – and explains how you can participate.

Current Members of the CFS Advisory Committee

Current Members of the CFS Advisory Committee

The spring meeting of the CFS Advisory Committee is May 22-23, and we only have a few weeks to prepare. The agenda is not available yet, but we do know about a few new things happening at the meeting.

New Members

There will be some new faces at the table. Rebecca Collier, RN has been appointed to replace Dr. Jacqueline Rose, who resigned last June. Dr. Ann Vincent recently resigned from the Committee, so the number of voting members will remain at 10 (the Charter provides for 11 members).

This will also be the first meeting for the new non-voting liaisons. When the Charter was renewed in September 2012, three non-voting positions were added to the Committee for liaisons from patient organizations. Applications for the positions were due in February 2013, and Dr. Nancy Lee announced her selections in April 2013. Representatives from the IACFS/ME, the CFIDS Association, and the New Jersey CFS Association will attend the meeting. It will be interesting to see how much they are able to participate in discussions, and whether the Committee actively seeks their input on the issues.

High Priority Recommendations

You may recall the controversy earlier this year over the Committee’s High Priority Recommendations. The Committee created this document without public discussion or input. After Public Citizen protested this violation of the Federal Advisory Committee Act, Dr. Nancy Lee promised to bring the document to the full Committee for discussion.

Since 2004, the Committee has made over 70 recommendations, many of which are obsolete or completed. Some of the most important and most repeated recommendations remain unfinished, including establishing Centers of Excellence and increasing NIH funding. A detailed analysis of all the recommendations is available on my blog, starting here.

We need to make sure that the Committee identifies the recommendations that are the highest priority for patients. That means that the Committee needs to hear from us on this issue. What recommendations do you think should be made the highest priority? I’ve posted the full text of the recommendations that still need action here, and I recommend that you take the time to read the full text. But I know this can be overwhelming, especially for our ME/CFS brains, so here are the basic themes to choose from:

  • Pool resources to create Centers of Excellence, using physical or virtual locations.
  • Adopt the term “ME/CFS” across HHS programs.
  • Hold a stakeholders’ workshop to reach a consensus on case definition.
  • NIH should fund ME/CFS research commensurate with the magnitude of the problem, and issue an RFA specifically for ME/CFS.
  • RFA for clinical trials research.
  • NIH should issue a $7-10 million RFA for outcomes measures, and biomarker discovery and validation.
  • CFSAC recommends that you allocate specific funds to study patients with ME/CFS from past cluster outbreaks.
  • CFSAC recommends that you allocate funds to study the epidemiology of patients with severe ME/CFS.
  • Classify ME/CFS at G93.3 in the ICD-10-CM.
  • Establish interagency/interdepartmental effort to coordinate support for children and young adults with ME/CFS.
  • Educate educators and school nurses about ME/CFS.
  • Remove the Toolkit from the CDC website.
  • Organize a workshop to engage experts on disability assessment.

It’s a lot to process and choose from. But patients need to speak up and be heard on this issue. You can help the CFSAC choose the right priorities to send to Assistant Secretary Howard Koh by expressing your opinions about what needs the most urgent attention. If you can, please sign up for public comment and tell the Committee which priorities matter most to you. If you are unable to speak at the meeting, then please consider writing to the Committee to express your views.

How to Participate

If you want to provide public comment in person or by phone, you must register by May 15th: http://www.blsmeetings.net/CFSACPublicCommentMay2013 Unlike previous meetings, you are not required to submit your written testimony in advance unless you want it to be part of the public record of the meeting. You are limited to 5 minutes (or 5 typed pages), and your comments are due by May 15th to this email address: CFSACMay2013@seamoncorporation.com. You will receive confirmation of your speaking slot for comment by May 17th.

More details about the meeting, including how to register to attend in person, can be found in the Federal Register notice. You will be able to watch the meeting live at www.HHS.gov/Live and information about listening by phone will be posted to the CFSAC website.

I know some people feel the CFS Advisory Committee is a bureaucratic exercise in futility, but these meetings give us an opportunity to be heard. It’s worth the time and energy to publicly express your views. Maybe they don’t always listen to us or follow through on what is most important to patients, but if we remain silent then we guarantee that our opinions will be ignored.

 

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22 comments

{ 22 comments… read them below or add one }

Nielk May 8, 2013 at 5:29 pm

Thank you, Jennie. I have been waiting for this article because I have asked to testify (via phone) and wanted a blueprint as to what to include. This article has been helpful for me. I will review this list of recommendations carefully.

snowathlete May 8, 2013 at 6:00 pm

Thanks Jennie!

jspotila May 8, 2013 at 8:15 pm
Nielk

Thank you, Jennie. I have been waiting for this article because I have asked to testify (via phone) and wanted a blueprint as to what to include. This article has been helpful for me. I will review this list of recommendations carefully.

FANTASTIC Nielk!! Great news! I'm thrilled to hear this was helpful

Nielk May 9, 2013 at 5:05 am

Actually, I would love to hear from others what they think the three most critical recommendations are?

snowathlete May 9, 2013 at 5:56 am
Nielk

Actually, I would love to hear from others what they think the three most critical recommendations are?

for me, its these three in this order:

NIH should fund ME/CFS research commensurate with the magnitude of the problem, and issue an RFA specifically for ME/CFS.

NIH should issue a $7-10 million RFA for outcomes measures, and biomarker discovery and validation.

Pool resources to create Centers of Excellence, using physical or virtual locations.

Sasha May 9, 2013 at 6:20 am

That one:

NIH should fund ME/CFS research commensurate with the magnitude of the problem, and issue an RFA specifically for ME/CFS.

would certainly be my top one too.

Nielk May 9, 2013 at 7:58 am

As far as removing the CDC toolkit. What exactly is wrong with the toolkit besides that they recommend CBT and GET?

I just did a quick reading of it and was actually impressed by this:

  • Treat clinical depression only. People with CFS may show signs of depression, but not have depression. Prescribing drugs for depression when a person is not depressed may make symptoms worse.
  • Use caution in prescribing/taking antidepressants. Some antidepressants may make individual CFS symptoms worse or cause side effects.

They must have changed this because when I first fell ill, ten years ago, they recommended antidepressants as a treatment.

jspotila May 9, 2013 at 9:50 am
Nielk

As far as removing the CDC toolkit. What exactly is wrong with the toolkit besides that they recommend CBT and GET?

I just did a quick reading of it and was actually impressed by this:

  • Treat clinical depression only. People with CFS may show signs of depression, but not have depression. Prescribing drugs for depression when a person is not depressed may make symptoms worse.
  • Use caution in prescribing/taking antidepressants. Some antidepressants may make individual CFS symptoms worse or cause side effects.

They must have changed this because when I first fell ill, ten years ago, they recommended antidepressants as a treatment.

Multiple problems have been identified in the Toolkit, including the promotion of CBT/GET and the recommendation not to do many lab tests. CDC has admitted that the Toolkit no longer matches the website (after it was revised) but have insisted on continuing to use the Toolkit until there is money to write a new one. The discussion at the June 2012 meeting about the Toolkit covers a lot of this, and can be found in the meeting minutes.

Sasha May 10, 2013 at 6:50 am

Excellent post today on Jennie's blog about why people should contribute their opinions to this meeting:

http://www.occupycfs.com/2013/05/09/why-and-how-to-cfsac/

jspotila May 10, 2013 at 8:11 am

Several people requested suggestions on what to use as the highest priorities, so I created a template you can use for submitting comment. I recommend customizing it, but if you are short on energy you can use it as is. The deadline is Wednesday!

http://www.occupycfs.com/2013/05/10/cfsac-input-template/

Nielk May 10, 2013 at 2:43 pm

Thank you, Jennie. As far as the CDC toolkit, do we want them to remove it totally or just make changes to it?

The reason that I ask is because sometimes when one asks for too much change, nothing gets done. Sometimes the approach of not saying either/or but, let's work on it, might get better results.

I guess it's hard to talk about specifics but, if they just removed GET and CBT, it would be a step in the right direction.

justinreilly May 11, 2013 at 10:12 pm
Nielk

Thank you, Jennie. As far as the CDC toolkit, do we want them to remove it totally or just make changes to it?

The reason that I ask is because sometimes when one asks for too much change, nothing gets done. Sometimes the approach of not saying either/or but, let's work on it, might get better results.

I guess it's hard to talk about specifics but, if they just removed GET and CBT, it would be a step in the right direction.

Jennie- Nice post. Thanks for organizing and rallying patient comments. So important of course.

Gabby- In commenting on the priority of existing recommendations, I would suggest you just give your priority to the recommendations as they exist.

If you feel that changing a portion of the toolkit is a better request than dumping the whole thing, I would bring that up either now or in future comments as a seperate suggestion for making a NEW recommendation.

justinreilly May 11, 2013 at 10:13 pm
justinreilly
Nielk

Thank you, Jennie. As far as the CDC toolkit, do we want them to remove it totally or just make changes to it?

The reason that I ask is because sometimes when one asks for too much change, nothing gets done. Sometimes the approach of not saying either/or but, let's work on it, might get better results.

I guess it's hard to talk about specifics but, if they just removed GET and CBT, it would be a step in the right direction.

Jennie- Nice post. Thanks for organizing and rallying patient comments. So important of course.

Gabby- In commenting on the priority of existing recommendations, I would suggest you just give your priority to the recommendations as they exist.

If you feel that changing a portion of the toolkit is a better request than dumping the whole thing, I would bring that up either now or in future comments as a seperate suggestion for making a NEW recommendation.

Fwiw, I feel the toolkit is a real piece and should just be thrown out rather than revised.

jspotila May 12, 2013 at 11:43 am
Nielk

Thank you, Jennie. As far as the CDC toolkit, do we want them to remove it totally or just make changes to it?

The reason that I ask is because sometimes when one asks for too much change, nothing gets done. Sometimes the approach of not saying either/or but, let's work on it, might get better results.

I guess it's hard to talk about specifics but, if they just removed GET and CBT, it would be a step in the right direction.

CDC has said they do not have the budget to revise the Toolkit right now. That is one of the reasons the CFSAC recommended that it be removed from the website until it can be revised. Beth Unger said at the October 2012 meeting that CDC discussed whether to remove the Toolkit and decided against it. It was a point blank refusal to follow the CFSAC's recommendation. Most advocates I've spoken with feel that this recommendation should still be made a high priority because the GET/CBT advice is misapplied by doctors and harms patients.

Nielk May 12, 2013 at 12:31 pm

I think I will concentrate on these three recommendations:

1-NIH should fund ME/CFS research commensurate with the magnitude of the problem, and issue an RFA specifically for ME/CFS.

2-Hold a stakeholders’ workshop to reach a consensus on case definition.

3-Remove the CDC Toolkit for healthcare providers from the CDC website.

Does anyone have the figures of how much funding we had from the CDC in 2012? How does it compare to other similr illnesses like MS, Lupus, Lyme?

snowathlete May 12, 2013 at 3:28 pm
Nielk

The reason that I ask is because sometimes when one asks for too much change, nothing gets done..

This is definately true. The way to make worthwhile change happen is to focus on one (or maybe two) things and really push them. If you try to get too many things changed, then what happens is there is no focus so either nothing happens, or people just go after the "low hanging fruit". This may result in some change, but in the bigger picture it may not actually change much of significance. It gives them the chance to focus on the areas that they are most comfortable changing and these usually are not the ones that will be the most beneficial. My job used to be to make change happen.

jspotila May 13, 2013 at 6:57 am
snowathlete
Nielk

The reason that I ask is because sometimes when one asks for too much change, nothing gets done..

This is definately true. The way to make worthwhile change happen is to focus on one (or maybe two) things and really push them. If you try to get too many things changed, then what happens is there is no focus so either nothing happens, or people just go after the "low hanging fruit". This may result in some change, but in the bigger picture it may not actually change much of significance. It gives them the chance to focus on the areas that they are most comfortable changing and these usually are not the ones that will be the most beneficial. My job used to be to make change happen.

BINGO! We've seen this happen. Dr. Lee made a big deal out of the posting of the Primer on clinicalguidelines.gov. That was an easy piece of low-hanging fruit. The harder stuff, like case definition meeting, is back burner for sure. I highly recommend people select around 3 recommendations to focus on – certainly no more than 5.

Nielk May 13, 2013 at 10:35 am

Anyone here plan to give testimony next week?

Nielk May 14, 2013 at 9:00 am
Nielk

Anyone here plan to give testimony next week?

I just sent in my written testimony.

jspotila May 15, 2013 at 8:03 am
Nielk

Anyone here plan to give testimony next week?

I will, over the phone. Thanks for submitting written testimony!

Nielk May 17, 2013 at 4:01 pm

I just got my time slot to speak (over the phone) Wed, May 22 10:45 to 11:45 a.m.

Andrew May 20, 2013 at 8:58 pm

1. I think the toolkit should be removed. And I think it is a good issue to hit again and again. It sends a message about how upset we are about what they offer. Also, the CDC is not going to revise it in a way that is fair, even if they have the resources.

2. I think another possibility to push for is the DHHS (including the CDC) to informally adopting the use of the term Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

BTW, I doubt that many would agree with me, but given a choice, I'd like to see the CDC remove every reference on their website to ME/CFS. Because as far as I'm concerned, the current website is worse than nothing.

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