CFSAC Public Comment - Charmian Proskauer, January 2017

January 12, 2017

Thank you for taking my comment. My name is Charmian Proskauer and I am currently serving as president of the Massachusetts CFIDS/ME & FM Association. I speak today about the urgent need for clinical education about ME/CFS.

A couple of examples. First, a few weeks ago I was on a radio program with representatives from other local charities. Unlike the others, I didn’t want to talk about our need for money, or for volunteers, or even talk much about our programs in support of patients with ME/CFS. What I most wanted to do was alert listeners to what ME/CFS was, its symptoms and severity, in case any of them might be among the 28,000 people in our state who probably have ME/CFS but do not have a diagnosis, who might be suffering from a disabling illness with no idea what it is, or how to find a doctor who will pay attention and provide help. Yet I did not do this….why? Because we know of only around 30 doctors in the entire state, including all specialties, who we feel confident understand ME/CFS and will treat patients adequately and with respect. I was afraid that patients who suspected they had ME/CFS and visited their doctors would be subjected to the dismissive attitude about this illness that is so prevalent in the medical community and would be discouraged from seeking further help, and this would do them more harm than good.

Secondly, over the last several years our Association has been educating school nurses about ME/CFS in school age youth. School nurses are in an excellent position to identify children who may have ME/CFS, and they have been very receptive to our information. However, the school nurse cannot act alone to diagnose, provide treatment for the child, or insure that the child receives appropriate educational accommodations. The child’s doctor must be involved and we have been told many times that there is no pediatrician or family doctor in the child’s town who is comfortable diagnosing ME/CFS, or who knows what school accommodations would be useful, so the child goes undiagnosed and untreated, with his or her success in school threatened. This leaves the nurse feeling helpless and the families vulnerable to inappropriate child abuse accusations.

The June 2015 Institute of Medicine Report has an entire chapter outlining a dissemination strategy for medical education about ME/CFS. We are asking that CFSAC or a federal agency be designated as soon as possible, to take responsibility for the development and execution of a plan./ This is a critical step in getting patients, whoever and wherever they may be, the care they need and deserve./ Our Association stands ready to help./ We have already begun to work with our local HRSA officials to explore possibilities for getting information about ME/CFS into federally-qualified health centers in New England.


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Documents used in Congress visits March 2016