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Public Comments shared many mutual concerns, suggestions, requests and demands

Public Comments and Testimonies were scheduled for several one hour segments on both days of the CFSAC meeting. Testimonies were presented either in person or by telephone and were limited to 5 minutes. These came from patients at many different levels-well known advocates, individuals who had lost their careers, individuals who had lost loved ones to this illness, parents but also entire families, older patients as well as students and teens. They shared many concerns, suggestions, requests and/or demands. A summary of the most commonly and urgently stated items for action to the CFSAC, are as follows:

  • funding, funding, funding
  • the need for research that is better coordinated, shared, and goes across multiple fields
  • the CDC website must be rewritten or the entire site be taken down because it does not show current, biomedical information, and it does not acknowledge commonly used and proven methods of diagnosis and treatment
  • the need for effective treatments and the need to fast track Ampligen (which could help a considerable percentage of ME/CFS patients)
  • the need to use existing treatments and diagnostic methods which could provide improvement for some patients (i.e., tests and interventions that are not acknowledged by CDC or not on the CDC website and not known by many doctors)
  • the need to adopt the Canadian Case Definition and disseminate it to clinicians
  • the need to pay attention to reports of continued problems due to lack of knowledgeable doctors, with many patients experiencing humiliation and disregard by doctors
  • the need to focus research on post-exertional malaise and cognitive difficulties
  • the need to make a distinction between ME and CFS and to abolish the name of CFS
  • the need to compare ME/CFS to a national disaster with the concomitant need for relief efforts
  • questions raised about NIH: no sense of urgency or seriousness, continued delays in research; NIH spends less than 1% on ME/CFS compared to MS; neglect of patients (when compared to other illnesses); high rate of undiagnosed patients; situation remains unchanged for several decades
  • patients want assurance that recommendations by CFSAC will be carried out and followed up by the other federal agencies
  • patients, young and old, stressed that they did not want to spend the rest of their lives being sick nor to be missing out on so much
  • patients, young and old, are deeply concerned about consequences of untreated and undiagnosed ME/CFS, cancer and death
  • patients question the genetic and infectious components in ME/CFS because many families have several members who are ill with same illness
    many patients feel not much has changed over past two decades
  • the first May 12th International Awareness poster was brought in and displayed and blue ribbons were worn by patients - both to remind and signify the many years that patients have spent on advocacy
  • patients conveyed anger, despair, pain, frustration and fear (about their health or future health of family member and their finances)
  • patients expressed their appreciation to Dr. Wanda Jones, Dr. Dennis Mangan and other clinicians/researchers who have dedicated themselves to the ME/CFS community

Watch the video in its entirety for Day 1 of the CFSAC Meeting, May 10, 2011. Choose the video link for May 10, 2011. A screen will open up and the lecture will start promptly. Below this screen is a display of the items scheduled for Day 1 discussion. Scroll down and click on the title for desired topic and the video will reposition itself (after a brief buffering).

It is likely that more information, including documents of pubic testimonies and other material, will be posted in the near future on the CFSAC website. The Massachusetts CFIDS/ME & FM Association will be posting this information as it becomes available. Stay tuned for highlights of Day 2, held on May 11, to be released in the near future.