I have attended at least 15 FDA and NIH and CFSAC meetings and have never run into this problem. I find this entire matter very suspicious. This is the best that the NIH can do in a situation were every action they take is under great scrutiny and great suspicion? What is with these people?
In reading further I discover through Hillary Johnson that the meeting was moved from a larger room into a smaller room, or is in a room smaller than might be otherwise. Why do they move (or hold) a meeting of this importance to a smaller room? Why, as the advocate for a disabled person, my daughter, am I denied access to the conference? Why, as an advocate for other disabled persons, am I denied access to the conference? I understand that supposedly there is going to be an outlying room or two available for “overflow”. Presumably the conference attendees using the “overflow” room will be able to watch the performance on television screens. What is this all about? Why can’t they just have the conference in a larger hall where they can accommodate additional attendees?
I have made great efforts in time and money to attend this conference. I have had to give up a great deal to attend this conference. Many patients, including my daughter, are expecting me to listen for them and to represent them in any way that I can. I do not like being boxed out. I am also not interested in being placed, with my son who is also attending, in an adjoining or separated room watching a television monitor of something that I could watch in my room back in Minnesota and he could watch in Baltimore. What is going on here?
One of my friends, disabled with this illness, made a reservation online. She has requested special arrangements so she can put her feet up (a foot stool would do) and have a place to lie down during breaks, and it is suggested that she can watch in an adjoining room. This woman has attended various conferences and always been assured that her special arrangements can be meet without having to leave the main room, where she wants and needs to be. Otherwise she could watch on her laptop in her bed. This patient, an important advocate for us all, believes that making eye contact with the presenters is critical, especially in regards to asking question, a necessary part of any public hearing of this level of importance. I feel the same as it is impossible to ask penetrating questions without seeing the person whom you are questioning - as nuance of expression and body language is critical in such exchanges.
I also object to having ME/CFS patients watch the proceeding on a television. Many of these patients have sensory deprivation and cannot actually watch a television nor tolerate the frequency of the sound that emanates from a television. Just because those that work at NIH can lounge around watching television and computer monitors all day, they are not excused from knowing the minimum problems that some of these seriously disabled patients might have. The NIH should pay a bit more attention to this - perhaps they could read my blog and learn a thing or two.
I have other serious objections. The NIH, on the conference webpage, defines ME/CFS as a “poorly-defined illness”. Who has defined this illness poorly? The CDC and some of their colleagues in Britain have defined it poorly. The Canadians have defined it well. It is a well-defined illness when correctly defined. The NIH should adopt the Canadian Consensus Criteria that would allow them to define this illness with great clarity and confidence. In reality, this illness is not poorly-defined.
And then there is the question of not publishing the schedule of speakers. The conference is four days away and no speaker schedule has been published. What is this about? Doesn’t the NIH know that people have to make plans? Patients make there travel and accommodation plans based on who might be speaking and when. They do not have the freedom of healthy bureaucrats to come and go as they please. Those ME/CFS patients that can actually come to such a meeting have to be able to pace themselves and make elaborate arrangements so that they can get through these talks - talks which have such great import and consequence for their lives. They do not have secretaries to call and make last minute travel arrangement changes. Their travel is all on their own dime and, as disabled patients, they have little money. But they have great, great interest and, in this schedule mishap, they are being cut out. How incompetent are these NIH people?
I am a bit unsure about this “State of Knowledge thing”. I ask around, “What does this State of Knowledge thing mean?” No one knows. My first instinct is to ask myself, “Whose knowledge – mine or theirs?” Someone told me that this is the first NIH State of Knowledge regarding ME/CFS. Someone told me that there was a State of the Science Conference on Chronic Fatigue Syndrome in 2003. Summaries produced at NIH State of the Science Conferences are considered to be "historical" (basically obsolete) after 5 years. When Dr, Hanna, formerly responsible for the CFS program at the Office of Research in Women's Health, was asked at a CFSAC meeting whether it was time to have another State of the Science meeting about CFS, she replied, "There is no science in CFS." Apparently she was unaware of the hundreds of papers published about CFS since 2003. Many of them (although, as we know, not all) used a well-defined patient population and demonstrated infections, metabolic abnormalities, measurable immune abnormalities, cardiac abnormalities, central nervous symptom abnormalities, etc.
It's difficult to tell from the NIH website what a State of the Knowledge conference is supposed to be. There does not seem to have been any RFP (Request for Proposals=grant money) issued in association with this conference. There doesn't seem to be any requirement that any information be disseminated to clinicians as a result of this conference. So what's the point? Is this the reason they haven't firmed up the schedule YET? Are researchers unwilling to come speak because they know this conference is a useless exercise? Just wondering. It seems that a State of Knowledge meeting is one step down from a State of Science meeting. Is that what we need – a downgrade? This is shaping up to be one sorry show.