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Next CFSAC Meeting - August 18th & 19th, 2015
- Thread starter Nielk
- Start date
It's looking awfully like that but as Sasha pointed out earlier by next spring the recommendation to use SEID may have been adopted.
It's now or never, I think.
I think you raise a very important point - it is extremely difficult for us to parse the committee's discussion when we do not have access to the background documents, slides (other than their momentary appearance on the scree before the camera goes to whoever is making a comment), etc.
I urge people to contact CFSAC/HHS to request that all of these things be accessible to us at the start of each meeting (if not sooner).
I understand that as they wordsmith recommendations, those will change and supersede the originals but it would give us a chance to follow the discussions better.
jimells
Senior Member
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- 2,009
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- northern Maine
Howdy boys and girls! Are you ready for another exciting day on the couch?
I took some notes; perhaps I can decipher them. The telephone conferencing system they use needs a little technical help. I could not hear the telephone comments. Part of the time it was dead air; I think this happened yesterday and I was confused about when the meeting broke for lunch. At some point I could hear the telephone commenters like they were on a bad speaker phone, so I know they were talking, but I have no idea what they said.
It would be helpful sometimes if the meeting included a sports announcer to give us telephone attendees a play-by-play of all the exciting action.
AHRQ update - they had little to say, and said it so quickly I couldn't comprehend any of it. I gather the ex officio is new.
FDA update - He also talked too fast for my poor brain, but I caught a little of it. He discussed a clinical outcomes workshop that was supposed to identify measures to be used in treatment trials. I don't know what they came up with, if anything. He also mentioned a draft guidance document for drug development for our disease. He also mentioned Jeanette Burmeister's letter to FDA regarding the Ampligen price increase. Apparently she has lit a fire under somebody at FDA and they are looking into the situation. He said Jeannette had submitted "a very nice letter".
HRSA update - I didnt' know what this was before the meeting, and I still don't. Their rep said they could do something for children with ME, but I couldn't figure out what. It didn't seem to be anything useful like a clinical center for these patients, or money to help parents who are struggling to help their kids instead of working. Maybe someone else here knows who they are. I can't be bother right now to find out. The ex officio is new to HRSA and to the committee, so that supports my feeling that newbies get stuck on these advisory committees 'cause no one else wants to do it.
Name That Illness! Donna Pearson opened this discussion. What disease did the IOM define? IOM says CFS <> ME. Then she displayed the infamous Straus letter to Fukuda where Straus lays out his intention to make the disease disappear. That letter is finally getting some notice. Thanks so much to Craig Maupin for uncovering this smoking gun.
There were some facts and figures regarding "fatigue". Something like 90% of autoimmune disease patients report fatigue to be a serious and debilitating symptom.
Recommendation 14: Separate the disease from the CFS Umbrella
There was a lengthy discussion. Mary (?) criticized the ARHQ evidence review for including Oxford and Fukuda studies. She wants to eliminate the term "CFS" completely - but how?
Nancy Lee says, "I don't know what that means to remove [ME] from the CFS umbrella". She says this is too complicated for the HHS secretary to understand because she doesn't know the history of the disease. Poor HHS secretary. Maybe she can borrow a brain from the Wizard of Oz's tin man.
There was discussion of recent media reports of air traffic controllers suffering from chronic fatigue due to over work. Voting on this recommendation was put off until later.
Public Comments
An HEM consultant ("I'm not an employee") defended the recent Ampligen price increase and mentioned a new initiative to force FDA approval. Their strategy is to lobby Congress until FDA cries "Uncle!"
Bob Miller encouraged patients to stick with the CFSAC process. He didn't acknowledge that so far as I can tell, HHS has never adopted a CFSAC recommendation.
Matina mentioned our high suicide rate and Vanessa Li.
Charmian discussed the need for earlier diagnosis of patients before the illness causes permanent damage. She called for a study of newly ill patients - I think this would be a prospective study?
Debra Waroff said we've been wandering in the desert like Moses (and for just about as long!). She mentioned the cut to CDC funds by the Senate subcommittee and closed with a quote from Luke that like Jesus, we need a place to lay our head (in an NIH institute, I think she was referring to)
I couldn't hear the telephone comments following Debra. Once again they ended the public comment period 20 minutes early, with no explanation that I could hear. Were there really no other commenters?
Wow, I still have two more pages of notes but the meeting is about to resume, so that's all for now!
I took some notes; perhaps I can decipher them. The telephone conferencing system they use needs a little technical help. I could not hear the telephone comments. Part of the time it was dead air; I think this happened yesterday and I was confused about when the meeting broke for lunch. At some point I could hear the telephone commenters like they were on a bad speaker phone, so I know they were talking, but I have no idea what they said.
It would be helpful sometimes if the meeting included a sports announcer to give us telephone attendees a play-by-play of all the exciting action.
AHRQ update - they had little to say, and said it so quickly I couldn't comprehend any of it. I gather the ex officio is new.
FDA update - He also talked too fast for my poor brain, but I caught a little of it. He discussed a clinical outcomes workshop that was supposed to identify measures to be used in treatment trials. I don't know what they came up with, if anything. He also mentioned a draft guidance document for drug development for our disease. He also mentioned Jeanette Burmeister's letter to FDA regarding the Ampligen price increase. Apparently she has lit a fire under somebody at FDA and they are looking into the situation. He said Jeannette had submitted "a very nice letter".
HRSA update - I didnt' know what this was before the meeting, and I still don't. Their rep said they could do something for children with ME, but I couldn't figure out what. It didn't seem to be anything useful like a clinical center for these patients, or money to help parents who are struggling to help their kids instead of working. Maybe someone else here knows who they are. I can't be bother right now to find out. The ex officio is new to HRSA and to the committee, so that supports my feeling that newbies get stuck on these advisory committees 'cause no one else wants to do it.
Name That Illness! Donna Pearson opened this discussion. What disease did the IOM define? IOM says CFS <> ME. Then she displayed the infamous Straus letter to Fukuda where Straus lays out his intention to make the disease disappear. That letter is finally getting some notice. Thanks so much to Craig Maupin for uncovering this smoking gun.
There were some facts and figures regarding "fatigue". Something like 90% of autoimmune disease patients report fatigue to be a serious and debilitating symptom.
Recommendation 14: Separate the disease from the CFS Umbrella
There was a lengthy discussion. Mary (?) criticized the ARHQ evidence review for including Oxford and Fukuda studies. She wants to eliminate the term "CFS" completely - but how?
Nancy Lee says, "I don't know what that means to remove [ME] from the CFS umbrella". She says this is too complicated for the HHS secretary to understand because she doesn't know the history of the disease. Poor HHS secretary. Maybe she can borrow a brain from the Wizard of Oz's tin man.
There was discussion of recent media reports of air traffic controllers suffering from chronic fatigue due to over work. Voting on this recommendation was put off until later.
Public Comments
An HEM consultant ("I'm not an employee") defended the recent Ampligen price increase and mentioned a new initiative to force FDA approval. Their strategy is to lobby Congress until FDA cries "Uncle!"
Bob Miller encouraged patients to stick with the CFSAC process. He didn't acknowledge that so far as I can tell, HHS has never adopted a CFSAC recommendation.
Matina mentioned our high suicide rate and Vanessa Li.
Charmian discussed the need for earlier diagnosis of patients before the illness causes permanent damage. She called for a study of newly ill patients - I think this would be a prospective study?
Debra Waroff said we've been wandering in the desert like Moses (and for just about as long!). She mentioned the cut to CDC funds by the Senate subcommittee and closed with a quote from Luke that like Jesus, we need a place to lay our head (in an NIH institute, I think she was referring to)
I couldn't hear the telephone comments following Debra. Once again they ended the public comment period 20 minutes early, with no explanation that I could hear. Were there really no other commenters?
Wow, I still have two more pages of notes but the meeting is about to resume, so that's all for now!
A.B.
Senior Member
- Messages
- 3,780
Speaking of ME vs CFS, how many have noticed that the first Rituximab pilot study used the CCC or ICC (I don't remember which). The open label study used Fukuda for the new patients. The respone rates in both studies were the same.
To me, the discussion about CFS vs ME seem to be largely a response to the abuse from the Wessely school which ultimately has little to do with definitions and more with the promotion of certain interests. After the PACE trial, patients accepted the claim that some patients recovered and decided that misdiagnoses was the most likely explanation for this.
However if you've followed the discussion about the PACE trial you'll remember that the walking test results were not that of mildly fatigued patients. You'll also know that the claims of recovery are dubious.
Not that misdiagnosis is a problem, but I'm leaning more towards the explanation that Wessely et. al. are lying sacks of dung and that illness definitions ultimately aren't all that important. As long as doctors are informed and use their brains even a bad definition will work.
To me, the discussion about CFS vs ME seem to be largely a response to the abuse from the Wessely school which ultimately has little to do with definitions and more with the promotion of certain interests. After the PACE trial, patients accepted the claim that some patients recovered and decided that misdiagnoses was the most likely explanation for this.
However if you've followed the discussion about the PACE trial you'll remember that the walking test results were not that of mildly fatigued patients. You'll also know that the claims of recovery are dubious.
Not that misdiagnosis is a problem, but I'm leaning more towards the explanation that Wessely et. al. are lying sacks of dung and that illness definitions ultimately aren't all that important. As long as doctors are informed and use their brains even a bad definition will work.
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Surely Toto was the one with the brains?
dancer
Senior Member
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- 298
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Listening to Carol from Solve ME/CFS right now. I agree with Hillary Johnson that she is a whole new leader in that organization. I felt the CAA from the recent past was often tone-death to patient needs, but Carol seems smart and communicates clearly and passionately. She's pushing for review panels with only people who have taken time to study and learn about this disease...and talking about other problems ME/CFS grant proposals have faced.
I also find her very impressive.
They did eventually strike the 10 min time, because it was stressed that it could take up to 30 min in some patients.
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Bob
Senior Member
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- England (south coast)
I thought Carol Head made an exceptionally powerful speech. She seems like a fine leader, and someone who might be able bring all sides together in collaboration to inspire change, perhaps even at the NIH.
And she had me in tears re the headstone.
I do like Susan Levine chairing events as well. She seems to bring a pleasant new tone to proceedings that has not been there before. i.e. There seems to be less friction than usual, with a more friendly, collaborative, efficient, can-do tone.
But that's just my perception. Others might not agree.
And she had me in tears re the headstone.
I do like Susan Levine chairing events as well. She seems to bring a pleasant new tone to proceedings that has not been there before. i.e. There seems to be less friction than usual, with a more friendly, collaborative, efficient, can-do tone.
But that's just my perception. Others might not agree.
shannah
Senior Member
- Messages
- 1,429
I don't ever remember a DFO sitting as a presenter to ask questions and recommendations of the CFSAC panel. Does anyone else?
It seems to be in direct relation to the IOM recommendations.
It seems to be in direct relation to the IOM recommendations.
Bob
Senior Member
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- England (south coast)
What's a DFO?
Bob
Senior Member
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- England (south coast)
I haven't seen you yet, Leo. Could you run to the front of the room and give the cameras a wave?Hi everyone - I couldn't take time off from NIH until this afternoon but I'm here at CFSAC now if you want to see what I look like I'm guy with black blazer and light pink shirt in the audience
caledonia
Senior Member
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- 4,610
If ME/CFS is ok, but CFS is not, ergo ME should be ok.