At Dolphin's suggestion, I am starting this thread as a summary of the suggestions made in the thread titled 'CDC New Chronic Viral Diseases Branch CHief' I am the mother of a 23 year old son who came down with ME/CFS in 2010 after a bout of Giardia and Lyme. In the last 8 months, I have begun to experience what you’ve all lived for years both in terms of the impact that this has had on my son and how impossible it is to get any answers from the medical community. But when I turned to the web, I spent countless hours sifting through a plethora of sites that sent me in a million different directions. From my admittedly limited exposure, the comments in this thread about the need for a national advocacy group, an up-to-date patient (and family) web site and a new direction for the CDC struck me as right on!! So how to make it happen… what’s the action plan? At the risk of alienating any of you who know so much more about this than I, I went through this thread and have tried to collate the ideas that you expressed into a single list, added one or two from my experiences and am sending it back for your consideration as a strawman for a plan that could then be broken out into smaller chunks of actions. If this doesn’t make sense, just chalk it up to my inexperience. If it does make sense, feel free to fix what I missed or got wrong and I will do my best to collate those comments. Also, feel free to fill me in on where I am naive. For instance: 1) what is keeping the different advocacy groups from coming together in a concerted way? 2) Could the different advocacy groups agree on a common set of points that they expect of the CDC at this point? Would CFIDS, IACFS agree with the points below or some revision of them? Strawman Summary of the action recommendations in this thread 1. Create a national patient advocacy group Who are the main patient advocacy groups and what will it take to get them to work together? – this community, CFIDS Association of America, IACFS/ME, who else? Who are the other key players that can advance the cause and how can you build out that network?ME/CFS specific - WPI, key ME/CFS docs and researchers, CFSAC, who else? Other Neuroimmuno diseases How can your families be engaged to help/advocate for you? 2. Influence/Pressure the CDC Right now – a response (press release or some other kind of campaign) to the naming of Unger – state explicitly what you expect to happen - e.g. Strengthen communication channels with patients, doctors and researchers Rename the disease, acknowledge that physiological underpinnings Change the criteria used to define ME/CFS – drop the CDC’s empiric criteria - is there consensus that the Canadian guidelines are the way to go? Update/Redo the CDC strategy for ME/CFS to reflect state of science (the current strategy is from early 2009, still appears to reflect strong psychological orientation) Use updated strategy to refocus research dollars Update the CDC site – especially i. Update/redo information about etiology and treatment that is currently available on the CDC site. The information is old. emphasizes the psychological underpinnings ii. Comprehensive overview of research being conducted into ME/CFS whether CDC funded or not Implement a physician education and outreach program to address the abysmal way that doctors handle CFS patients today – my son was sent off to a bunch of different experts each of who looked at a piece of the puzzle with no one, even his GP, taking on ownership/partnering with him to put the pieces together. Ideally the above patient advocacy groups could agree and issue together - is that possible? Longer term Campaign to get dollars redirected if CDC doesn’t change research strategy– like campaign TFA aimed at Sebelius Investigate the CDC’s handling of ME/CFS over the years i. Documentary (video michael moore type or book) ii. wikileaks or FOI requests - "memos and letters that must have passed on such topics as the choice of Unger as new head, the refusal of grants to the WPI, the decision to invite Stoye to the WBG, memos to and from Sebelius over these CFS issues" 3. Other action - some of this would have to wait for the a broader advocacy group to form Implement a new or update an existing site for patients and their families - organized, up-to-date information to help understand the disease, different treatment protocols, where to find support, webinars, action alerts, etc. What’s out there is old content or hard to navigate, hard to understand. Here’s one idea but there may be better models http://www.michaeljfox.org/living.cfm. Could the CFIDS site be revamped to be this? I don’t know what the history is with CFIDS org so this may be a dump question but there are some things that are good about the site but its not up to date and is hard to navigate. Advocate for research funds – influence government, raise private, influence Pharma Advocate for research causes - WPI, any others? Fund raising drive for WPI? Raise public awareness to counter perception of ‘stigmatism of CFS community’ i. Find a publically known spokesman - with CFS (L. Hildebrand, who else?) or without ii. Youtube or Facebook campaign? iii. Engage the media and leverage them to get the word out what's already underway here? - Action campaign? What else? Influence the NIH, CFSAC, Congress - On what?