Posts Tagged 'CDC'

(re)Naming ME

There are intense reactions to the name IOM (Systemic Exertion Intolerance Disease, SEID) has proposed for this disease.

It seems that the naming of illnesses is more complex than we would like to believe. Pages 58-59 of the IOM report ( has Box 3-2 which lists the names submitted to the committee in response to their request for input on the name. Text near Box 3-2 describes the committee’s rationale for SEID.

Astoundingly among the names submitted were “chronic fatigue”, “chronic fatigue syndrome”. Several other submissions included the term “fatigue”. Seriously????

But people are not keen on SEID. In fact it seems that many people are wrapped up in discussions about the name and that the contents of the report seem to be of little interest or concern.

Dr. Lenny Jason has written a blog post about disease names and SEID:

“How disease names can stigmatize

By Leonard A. Jason

  • February 16th 2015

On 10 February 2015, the long awaited report from the Institute of Medicine (IOM) was released regarding a new name — Systemic Exertion Intolerance Disease — and case definition for chronic fatigue syndrome (CFS). Because I was quoted regarding this report in a New York Times article, in part due to having worked on these issues for many years, hundreds of patients contacted me over the next few days.

The reaction from patients was mixed at best, and some of the critical comments include:

  • This new name is an abomination!”
  • Absolutely outrageous and intolerable!”
  • I find it highly offensive and misleading.”
  • It is pathetic, degrading and demeaning.”
  • It is the equivalent of calling Parkinson’s Disease: Systemic Shaking Intolerance Disease.”
  • (It) is a clear invitation to the prejudiced and ignorant to assume ‘wimps’ and ‘lazy bums.’”
  • The word ‘exertion,’ to most people, means something substantial, like lifting something very heavy or running a marathon – not something trivial, like lifting a fork to your mouth or making your way across the hall to the bathroom. Since avoiding substantial exertion is not very difficult, the likelihood that people who are not already knowledgeable will underestimate the challenges of having this disease based on this name seems to me extremely high.”

Several individuals were even more critical in their reactions — suggesting that the Institute of Medicine-initiated name change effort represented another imperialistic US adventure, which began in 1988 when the Centers for Disease Control changed the illness name from myalgic encephalomyelitis (ME) to chronic fatigue syndrome. Patients and advocacy groups from around the world perceived this latest effort to rename their illness as alienating, expansionistic, and exploitive.

Please read the rest of the post here:


CFSAC May 2013 videos have all been posted now

Twenty-six days elapsed between the end of the meeting and the posting of these videos. (Typically the time frame has been 4-6 weeks….)

Day 1 May 22, 2013

Welcome & Call to Order – Day 1 (CFSAC Spring 2013)

May 22, 2013, 9:00 – 10:30 AM.

Public Comment on Day 1 (CFSAC Spring 2013)

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 1, May 22, 2013, 11:45 AM – 1:00 PM. (I think the time is incorrect here. I think the start time should be 10:45AM)

Approve Prioritized Recommendations List – Day 1 (CFSAC Spring 2013)

May 22, 2013, 1:00 – 1:30 PM.

Determination of Medicare Coverage of Test and Treatments – Day 1 (CFSAC Spring 2013)

May 22, 2013, 1:30 – 2:30 PM.

Public Question & Answer on Day 1 (CFSAC Spring 2013)

2:45 – 3:15 PM. Public Q&A.

Committee Discussion and Plans for Day 2 (CFSAC Spring 2013)

3:15 — 5 PM.

Day 2 May 23, 2013

Opening Remarks on Day 2 (CFSAC Spring 2013)

9:00 – 10:15 AM.

Health Insurance Marketplace – Day 2 (CFSAC Spring 2013)

10:15 – 11:00 AM

Public Comment on Day 2 (CFSAC Spring 2013)

11:15 AM – 12:15 PM

Public Question and Answer on Day 2 (CFSAC Spring 2013)

1:30 – 3:00 PM.

Committee Discussion on Day 2 (CFSAC Spring 2013)

3:00 – 3:30 PM.




Committee Discussion (Part #2) on Day 2 (CFSAC Spring 2013)

3:30 – 5:00 PM

FDA FAQ link

FDA has posted an FAQ about the April 25/25 2013 meeting:

Public Comments due Thursday, December 6th 2012 for FDA Advisory Committee on Ampligen CALL TO ACTION (updated)

Thursday, 6 December, 2012 is the deadline to submit public comment for the 20 Dec 2012 Arthritis Advisory Committee Meeting!


Please spread the word about this – there are only a few days until the deadline. Anyone, anywhere can participate!

If anyone has trouble submitting their comments please email us (see below) – we will do our best to help.

Why is it important for you to send your comments?

For the first time ever, ME/CFS has the chance to get a treatment approved.  Whether you have been on Ampligen or not, whether you wanted to try it or not – once one drug gets approved other drugs will come along and so will additional research dollars.  It will also legitimize the disease in the minds of the medical community and the world.

Why is this public comment just about Ampligen?

Because this particular meeting is part of the process to approve a drug. 

Send in your comments to let the advisory committee know what it is like to have ME/CFS and to tell them that treatment is needed NOW.  

Your comments do not need to be lengthy. Feel free to use the template below. (The template uses CFS because that is how the FDA website refers to this wretched illness. Using CFS will probably make it easier for those on the committee to follow.)

(The advocacy community will continue to update you about additional significant meetings coming up – including the Stakeholder meeting in the spring, as well as about issues dealing with CDC and NIH…) 

Right now we need to let the Advisory Committee hear us on this issue.

Send in your public comment by THURSDAY DECEMBER 6th, 2012

Send your comments to:   (this is the correct email address)

Subject line:  Treatment for Chronic Fatigue Syndrome- Ampligen

To The Advisory Committee Reviewing Ampligen:

My name is ___________________…. .

I have had CFS for more than ___ years. 

Before I became ill, I ______________________……. 

My life because of CFS _______________________________________________…….. 

The reality is that CFS is a horribly devastating illness that effects every moment of my life. 

CFS patients need treatments.

We have seen patients do well on Ampligen. We have seen patients’ quality of life improve as a result of Ampligen.

Help us have access to treatments.

Please give the CFS community hope of getting our lives back.



send a copy of your email to:  (SpeakUpAboutMe at gmail dot com)

Remember to send in your public comment by THURSDAY DECEMBER 6th, 2012

Message for the ME/CFS community

On June 5, 2012, an alliance of ME/CFS patient organizations and advocates sent a joint request to Secretary Sebelius of DHHS requesting that key deputies meet with us and begin to work with us to formulate a strategic, coordinated and fully-funded response to ME/CFS. We reiterated that request in a letter to Secretary Sebelius on August 8.

To date, we have been unable to secure the meeting with key deputies that we requested.  Four members of the alliance (Joan Grobstein, Jennie Spotila, Mary Dimmock and Charlotte von Salis) did meet with Dr. Nancy Lee, Deputy Assistant Secretary for Health – Women’s Health and Dr. Caira Woods, Advisor for Health and Science Policy, Office on Women’s Health.  The key points discussed in that meeting were:

  • The Ad-Hoc Workgroup (described in DHHS letters to the community and at the CFSAC) is formulating a plan focused on budget sharing and coordination across agencies. It is charged to do what it can with no additional funding. It is not charged with developing a formal strategic plan or action plan. Dr. Lee also stressed that the agencies have a great degree of autonomy, although they do collaborate with each other.
  • Given that DHHS has not agreed to the requested cross-DHHS meeting and has not committed to a cross-agency strategic, coordinated, fully-funded response, other avenues should be pursued. Dr. Lee suggested approaches that include non-profit or private sector solutions and following up with CDC and NIH separately.
  • There are tactical opportunities that could be pursued in parallel and in partnership with CFSAC that include engaging as stakeholders in the case definition process that CFSAC committed to and finding ways to improve engagement and two way dialog within the CFSAC itself.
  • We also discussed the CDC CFS Toolkit. The link to the CDC CFS Toolkit has been removed from the CFSAC website which is very good. Note that the Toolkit is still on the CDC CFS website itself. We will have to pursue that separately.

The need for a cross-DHHS strategic, coordinated, fully-funded response, developed with meaningful stakeholder input is as critical now as it ever was. However, it was clear from this meeting that we will need to use alternative approaches to make incremental progress while working toward the full objective. Besides the approaches suggested above, there are also legislative and other non-governmental options. Given our community’s limited resources, we will prioritize those activities that are most critical to both our short and long-term success.

If you have ideas on the areas that you would prioritize that you’d like to share, please share them with your organization or send them to We’ll summarize the ideas we get in and share them back with the community.

Thank you very much Charlotte, Joan, Jennie and Mary for meeting with Drs. Nancy Lee and Caira Woods.

CDC’s insistence on retaining and promulgating misinformation (!) harms patients!

Once again we urge you to read a post at the OccupyCFS blog.

CDC needs to understand its role in promulgating misinformation about CFS and they need to STOP doing so.

October 2012 CFSAC videos

(Sorry if these are not in order…. the last link is to a page that has all of the videos) Welcome & Opening Remarks (CFSAC Fall 2012) Biomarkers – An Overview & Future Look (CFSAC Fall 2012) Public Comment on Day One – AM (CFSAC Fall 2012) Agency Updates from HRSA, NIH, and FDA (CFSAC Fall 2012) FDA & Drug Development (CFSAC Fall 2012) Public Comment on Day One – PM (CFSAC Fall 2012) Committee Discussion & Plans for Day Two (CFSAC Fall 2012) Opening Remarks & Agency Updates (CFSAC Fall 2012) Social Security Administration (CFSAC Fall 2012) Public Comment on Day Two (CFSAC Fall 2012) ME/CFS Organizations (CFSAC Fall 2012) A Path Forward (CFSAC Fall 2012) Finalize Recommendations (CFSAC Fall 2012) Search results for “CFSAC”: