Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the call for comments regarding how the US government might engage members of the ME/CFS community, especially patients and their lay supporters, in addressing and solving the clinical, research, educational, and public health challenges of this condition.

As some of you might know, I moderated a panel entitled “Nothing About Us Without Us: How Community-engaged Research Can Accelerate Progress in the Field of ME/CFS” during the October 2016 International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis conference.  In putting together that session, I drew upon my personal and professional experiences and updated myself by reading more recent materials.  During the session, I attempted to let my panelists do most of the talking; for this testimony, I’m “talking” and these are my personal ideas. Since this is for CFSAC, I will stick to ideas for governmental agencies; another list could be generated for patients and advocacy groups.

1. Both governmental and patient advocacy groups involved must head into any process with an open mind and heart. Governmental groups need to really believe that communities deserve an equal place at the table and that engaging communities yield benefits beyond merely placating people. Solutions to many healthcare problems are complex and involving communities can lead not only to effective solution but ones which are practical and socially sensitive/ acceptable.  Communities may come up with ideas or notice obstacles that officials might not have even conceived of; they might also help disseminate ideas, implement interventions, and/or diffuse any tense situations.  If community engagement is done merely to “look good” or as “window dressing,” patients and their supporters will recognize this immediately and  view engagement efforts as cynical ploys to garner positive press or to guard against criticism rather than genuine efforts.

2. Conversely, if the community feels things were done in good faith, there is more leeway given for any misunderstandings, mistakes, delays, etc. A good example of this is the 2013 US FDA Drug Development Workshop for ME/CFS. The staff involved in setting up that meeting did an excellent job of inviting patients and their representatives, listening to what was said, and incorporating patient/ representative views into their reports. FDA officials readily acknowledged they were not knowledgeable about the condition and that they learned much from the meeting. Later, when FDA turned down the approval of Ampligen, there was some protest from the community but I believe the outcry would have been even louder or more strident had FDA not establish this prior relationship with the community.

Similarly, although some within government might believe the ME/CFS community does not get along well with any federal officials, there are certain individuals within government that many advocates respect, for example, former Trans-NIH ME/CFS Working Group Chairman Dr. Dennis Mangan and now Dr. Vicky Whittemore.  That respect comes not because Drs. Mangan and Whittemore always agree(d) with the ME/CFS community or were able to get everything the community wanted achieved but because they listened and people felt they were trying their best within their position and authority.

3. ME/CFS patients and supporters are usually eager to engage with governmental agencies. For example, when NIH recently announced their 5-yr., intramural comprehensive study of post-infectious ME/CFS and posted the details on their dedicated website, many people wrote to NIH to comment on their concerns with the study and how it might be changed/ improved. To the intramural research group’s credit, they did listen to some of these concerns and modify some aspects of the study.  When I served on the Institute of Medicine Committee examining diagnostic criteria for ME/CFS, we asked for and received nearly a thousand written comments from the public.

For CFSAC, I like that this time and a few times prior, CFSAC has specifically asked for speakers and writers to address specific topics. The public wants CFSAC to be successful and asking for comment on specific areas assists people in drafting their testimonies.

4. Learn from successful collaborations between government and communities addressing this and other health conditions. For example, the Department of Defense Congressionally Directed Medical Research Program has used lay peer reviewers for several year to help determine which research projects should be funded. Several patients/ family members sat on the panel adjudicating ME/CFS grant applications in 2011. I’ve already mentioned FDA, which involves patient representatives in the decision-making process for drug, medical device and biologics approvals. And from what I understand, NIH used to have a Council of Public Representatives. It might be helpful for CFSAC to have representatives from these programs, including at least one federal official and one patient/non-governmental person, present at CFSAC in the future or share the benefits/ challenges of such efforts.  It may also be helpful to ask individuals particularly adept at working with the public to advise.

5. Federal officials/ groups would do well to “walk a mile” in the shoes of patients and consider how statements and action impact patients/ families. This involves simple human empathy. An example of this was NIH’s recent decision to have Dr. Edward Shorter present to NIH’s ME/CFS Interest Group. Shorter already had a history of writing and saying inflammatory and unsubstantiated statements about ME/CFS sufferers to the point that Psychology Today’s website pulled the original article he wrote in 2015.  The ME/CFS community caught wind of NIH’s invitation and protested the talk based on scientific accuracy (Shorter has not been active in the ME/CFS field hardly) as well as professional behavior towards patients.  Short of that, advocates asked that a transcript or videocast of Shorter’s talk be made public or that the public be allowed to attend the talk. Instead of responding to these concerns, NIH proceeded anyway with Shorter’s talk and did not allow the public to attend. In the end, it took one brave patient “crashing” the meeting to question Dr. Shorter publicly at the meeting and to report to patients and families what happened.

NIH lost a lot of trust from the community with that move that might not be regained in some circles.  If federal officials have a problem understanding if a statement or action might be offensive,  insulting, or questionable, the best move is to ask a trusted community representative(s).  Also, try replacing the word “ME/CFS” with any other medical condition – diabetes, cancer, heart attacks – and see how it looks or sound in tone. To some degree,  most chronic illnesses result in some level of discrimination, particularly social (e.g. work, school, etc.) but I continue to be surprised at how governmental entities I should be able to respect, trust, and rely upon continue to discriminate against those with this condition.

(This was not the first time NIH has hosted a controversial talk. In 2011, patients and advocates expressed similar concerns about Dr. Fred Gill’s talk and that also proceeded anyway. Like people, governmental agencies need to learn from mistakes and missteps, not repeat them.)

6. The format of CFSAC meetings or any future community engagement methods should consider the needs of patients and families. Those who have been involved in this field for many years may remember that it took Jean Harrison of Mothers Against ME contacting the Office of Civil Rights and the efforts of then-DFO Dr. Wanda Jones (who is respected by many advocates) to make CFSAC meetings more accessible for patients to attend. Over the last few years, I have observed a rolling-back of accessibility features with the excuse given that the budget is too tight.  Yet, if governmental agencies want to really be inclusive of the community, they do need to attend to these issues.  Also, is these accommodations are made for non-ME/CFS meetings, they should be considered for meetings concerning ME/CFS. Note that these changes are also of benefit to HEALTHY or other participants as well.

• The earlier people know about the meeting, the more time they can plan to come. Most people affected by ME/CFS are poor and/or disabled. It takes more time, energy, and arrangements to attend a meeting.
• Similarly, the earlier people are aware of the agenda – even if it is not perfect –the more time they have to plan what they want to write or say.
• Although there are many pressing issues, meetings have been reduced from a consistent 2 days twice a year to even only half a day twice a year. This needs to stop if there is to be any meaningful engagement during CFSAC. Longer meetings are not necessarily more productive but in the case of CFSAC, it often feels more time is needed.
• Some meetings lately have only been via telephone without video, slides, etc. available for the public to see during presentations. This makes it very difficult for cognitively challenged patients to follow.
• Public speaking time is limited to 3 minutes per person, no exceptions. While I can understand the need to stay on time, some of the most disabled folks might require a bit more time to speak.
• Allow a question and answer session from the audience. Right now, the public pretty much has to keep mum except for the public testimony period. Some limited give-and-take would be beneficial.
• Allow the community to suggest future CFSAC agenda topics. If I understand currently, the DFO controls the agenda. Often I find the agenda restrictive, not addressing the pressing issues at hand.

These ideas are not specific to CFSAC:

• Consider making accommodations for some meetings in other parts of the country than DC. I recognize this might be constrained by budget, resource, staff, etc. considerations but always having meetings in the East means less representation from other parts of the country as some patients struggle to travel.

• Consider virtual attendance for some projects/ individuals. For example, I applaud the CDC for involving various stakeholders in its Technical Development Workgroup project but some people who really wanted to attend the in-person meeting in September would have been happy participating via, for example teleconference, could not do so.

• Consider the times of meetings or projects. East Coast AM times are difficult as an 8/ 9AM meeting time EST is a 5/ 6AM meeting time PST For patients who suffer from unrefreshing sleep/ fatigue and need extra time in the AM to prepare, having meetings in early morning hours is difficult.

Thank you for your attention.

Lily Chu, MD, MSHS

If you missed the CFSAC meeting last week and would like to listen to the whole two-day meeting, or sections from it, follow these instructions. (You’ll also be able to see the powerpoint presentations with the WebEx app you’ll have to download).  

1. Visit the CFSAC website.
2. Click on the link below the day you would like to listen to – the link beneath: “Participants can join the event directly at.”  
3. Fill out the form and click “proceed.”
4. You will have to download webex to listen (the app is safe to download)
5. Click on “play recording”

Scroll through the list of participants to find the speaker that you want to listen to. (You can view the meeting agenda here.)

If you have comments or ideas for engagement to communicate to CFSAC, you can contact them at: