This has it's own thread
But it's just so cool that I wanted to bring it here too. It really sounds like the higher ups think this is "it" for us. Why else would they meet with patients and patient advocates BEFORE the conference. It's like getting christmas presents in July. I mean patients made statements and it's not even a CFSAC meeting.
It makes me all warm and fuzzy on the inside. (just like I am on the outside!)
On September 7, 2010, at 11 am, at the NIH campus in Bethesda, MD, a group of 9 ME/CFS patients and their families met with high-up NIH officials. To my knowledge, this is the first meeting of its kind in the 27 years since I was first struck down with this illness in 1983.
The meeting was organized by long-time CFS patient Robert Miller. The meeting's CFS participants (patients and family) included: Charlotte, Linda, Sherry, Scott, Marielle, Bobbi, Rivka, Robert and Megan. A wonderful surprise addition to the meeting was Dr. Dan Peterson, of Incline Village, NV, champion doctor of CFS patients and co-founder of the Whittemore Peterson Institute in Reno, NV.
The meeting was held just prior to the start of the 1st International XMRV Conference sponsored by the NIH. The NIH officials present included:
Michael Gottesman, MD
Chief of NCI's Laboratory of Cell Biology
and Director of the NIH Office of Intramural Research
http://www.nih.gov/about/almanac/historical/deputy_directors.htm#gottesman
Paul H Plotz, MD
Chief, Arthritis and Rheumatism Branch (NIH)
http://www.niams.nih.gov/Research/O...25&email=plotzp@mail.nih.gov &includefile=RAG
Roland Owens, PhD
Assistant Director of the NIH Office of Intramural Research and Chief of the Molecular Biology Section in the Laboratory of Molecular and Cellular Biology in the National Institute of Diabetes and Digestive and Kidney Diseases at NIH.
http://jgh.hunter.cuny.edu/index.ph...phies/95-owens-roland-a-phd.html?directory=18
These are my impressions of the meeting. Any and all mistakes, such as misrepresenting someone's words or sentiments, are all mine. And I welcome any corrections from others.
The agenda that Robert Miller originally set for us went smoothly. It was for a half hour meeting, but in the end we were given a full hour. First, Robert had the patients go around the large table and introduce ourselves, stating how long we have been, or our family member has been, ill. Then he read a statement which included points and issues he felt needed stressing. They focused on, but were not limited to, these two key points:
1. The need for trust building
In the past, our government offices (NIH, CDC) have acted in ways that have eroded our trust in them, from the (rather amorphous) decades of neglect to, most recently, the highly concrete fact that Dr. Judy Mikovits, the scientist who found the link between XMRV and CFS, was excluded from the XMRV Conference line-up until patients loudly complained. Robert said that we now need our government to act in a way that engenders our trust in them.
2. The need for funding
Funding is needed for ME/CFS research, clinical trials, and Centers of Excellence (including WPI).
(For the full text of Robert's statement, see Attachment #1 below.)
After Robert made his very salient, well-written points, Dr. Peterson made a statement, and then three additional patients made theirs, each lasting about 2 minutes. (My statement is Attachment #2 below.) Honestly, embarassingly, I can't recall any of them. Though I do recall feeling very proud to be on the same side as Dr. Peterson. And I do recall feeling very moved by the patients' statements. One woman, the mother of a long-time patient, made a strong plea for attention to pediatric CFS issues.
After Dr. Peterson and the patients spoke, it was Dr. Michael Gottesman's turn. He told us that he had talked to NIH Director Dr. Francis Collins just that morning, and that the Director wanted us to know that positive things were going to happen. "We are on track. Things will happen." He did mention that NIAID is currently setting up multi-centered clinical trials.
Patient Questions
After he talked, we patients started with questions. It was a 1 hour meeting, so there were many topics and I cannot recall all of them. They included (not necessarily in this order):
Question: What power and purse strings does Gottesman have as Deputy Director of Intramural Research? He was pointedly asked, Can you make a commitment to us right now for clinical trials?
Response: Gottesman explained that his department, Intramural Research, means research done within the NIH, not outside the NIH. Intramural Research is only 10% of the NIH budget. Intramural Research is where "higher risk" research can be done (I am not sure why he brought up that point, i.e., if it relates to us or not.)
My impression was that he felt he did not have a lot of say in deciding on clinical trials. My impression was that he was at this meeting because Collins wanted someone high up to meet with us, but that Collins did not have the time (or inclination? or knowledge of our needs?) for the meeting.
Others may have a different impression of the situation. Gottesman did say, in so many words, that the meeting was hastily arranged, and for the short time they had to arrange it, it was pretty good to get someone as high up as he.
In terms of funding, he did say, "There will be more funding, and more publications."
Question: Patients pointedly asked, Why has this illness been ignored for 2+ decades?
Response:
When Gottesman said it was due to a lack of concrete scientific, clinical and medical findings and published papers, patients countered that there are 5,000 scientific and medical studies on CFS already published.
When Gottesman said that Alter's paper was the first evidence of something concrete (i.e., a virus) for CFS, patients reminded him about researcher Elaine DeFreitas and how her viral findings as a Wistar Institute virologist were ignored and even discredited by the CDC 19 years ago.
Strangely, at least to us patients, Gottesman praised the former CFS point person Dr. Steven Strauss, saying that both the NIH and CFS patients lost a good fighter for our cause when we lost Strauss. No patients nodded their heads in agreement.
Gottesman also seemed not to know about the disappointment patients feel regarding NIAID Director Anthony Fauci (appointed in 1984). So we told him we did not feel warm and fuzzy toward Fauci for having ghettoized us to the NIH Office of Research on Women's Health, which has no money.
Gottesman noted how dangerous it is to take antiretrovirals when we have not done clinical trials. And before clinical trials they need to test the meds in vitro. We patients responded with the fact that there are already two published studies on antiretrovirals that work to hinder XMRV in vitro. (We sent these two studies to Gottesman via email after the meeting.)
I think it was Dr. Peterson who talked about how patients are already doing antiretrovirals. That that is how desperate we are.
Other Topics Covered
We talked about how if XMRV or related viruses turn out to be a dead end (i.e., not a cause of CFS, and not a cause of anything hurtful to the body), we hope their interest in CFS will not reach a dead end, too.
Patients discussed the pathetic name our illness was given, Chronic Fatigue Syndrome, and how that very name has contributed to families abandoning their sick family members because of disbelief that they are really sick.
Gottesman talked about how respected Dr. Alter is and how Alter's interest in our illness and his published study will change everything for our illness. Alter, and his paper, carry a lot of weight.
When the NIH team (Dr. Owens) said more people were needed to go into the field of CFS research, Dr. Peterson said there are many good doctors who are already working on this, but not getting funding. And patients stated that the lack of funding in general, for CFS, turns off potential researchers.
Patients talked very concretely about how funding for CFS projects and research are selected and allocated, and how the team who approves CFS research grants is flawed (noting the dentists and psychologists who are included in the team, as opposed to more immunologists and CFS experts).
Next Steps
Gottesman said that for our specific concrete grievances, we need to write a letter stating those grievances and concerns and send that to the Director Collins's office. He promised us that it will be addressed and forwarded to the right person within the Director's office. (If patients are willing to send emails to Director Collins, we ask you to select something from the list of points Bob raised in his statement, found below. Pick the one or two points that you feel most affect or move you.)
Most importantly, Gottesman said he will meet with us again. And I think 3 months time was suggested. We said we'd like others involved in that meeting, perhaps others from the NIH whom we might suggest, due to our specific needs.
(Note: Any mistakes in this assessment of our meeting are all mine. There is a good chance there are many mistakes, as it was all taken in through exhaustion, brainfog and a poor memory.)
Thanks to Robert Miller for organizing this meeting, to Dan Peterson for adding the weight of his years of experience and expertise. Thanks also to the amazing patients and family members who shared difficult stories of years lost to CFS, and to the NIH officials who took the time to meet with us and will hopefully meet with us again in the near future.