Next CFSAC meeting date has been announced for November 8, 2011

[Dx Revision Watch]

Thank you so much, Suzy, for following up on these questions.

I'm disappointed that there will be no video. I loved being able to watch the CFSAC in real time while staying connected to other patients on forums and facebook. I'm not able to use audio, and once the CFSAC is over, interest in it declines.

Yes, gracenote, I agree, it's disappointing, I would far rather have video than audio, although as Bob has said, some of us in the UK cannot always stream the live video feed and at the last meeting, some US residents reported problems, too, on Day One. For me also, the Day One videocast did not buffer properly though Day Two was viewable.

Suzy

 

[Bob]

Well, I hope I'm well enough to deliver my presentation over the phone. One thing I learned from watching past speakers is the need to use a stopwatch and time the talk before trying to deliver it. I've seen people run a full minute over, had to stop, and they hadn't even reached their closing remarks.

I didn't know that you were contributing Andrew... Good luck... Let us all know how it goes.

 

[Dx Revision Watch]

[Sic]

Note: I shall put the following out on Co-Cure


Response from Nixon, Emmett (HHS/OASH) The CFSAC Support Team

Date: Friday, October 14, 2011 3:36 PM


Dear Dr. Chapman, [sic]*

* http://en.wikipedia.org/wiki/Sic

Sicgenerally inside square brackets, [sic], and occasionally parentheses, (sic)when added just after a quote or reprinted text, indicates the passage appears exactly as in the original source. The usual purpose is to inform readers that any errors or apparent errors in the copied material are not from transcriptionthat they are reproduced exactly from the original writer or printer.


Lest there be any possible confusion or concern that I might be misrepresenting my qualifications: I am not entitled to the title "Dr", either as an MD or PhD, alas - a misassumption on the part of Mr Nixon. As his response has been reproduced in full, a [Sic] has been inserted to indicate an error in the original text rather than edit the body of an official response received by email.


Suzy Chapman, DipAD

 

[Phoenix Rising Team]

Moderator: Threads merged - sorry for the cross-posting, everyone.

Things have become a bit out of hand here. Please keep in mind that brain-fogged people with ME/CFS reading these threads are seeking to read and participate in informative discussion. As is stated in our Forum Rules: "Please keep the focus on the facts of the topic at hand - not the person delivering it."

Any concerns about moderation are to be raised privately to avoid pulling things off-topic.

 

[Hope123]

Thank you so much, Suzy, for following up on these questions.

I'm disappointed that there will be no video. I loved being able to watch the CFSAC in real time while staying connected to other patients on forums and facebook. I'm not able to use audio, and once the CFSAC is over, interest in it declines.

Yes, I don't particularly buy the government's reasons.

I hope that I am wrong but my concern is once CFSAC is not live broadcasted, less and less people will watch/ listen to it and participation will decline over time, which, to some degree, the government wouldn't mind happening. They would just like to see us all fade away and not trouble them with our health problems. I hope all of you prove me wrong and continue to listen/ watch/ write/ call in.

Some folks with CFS can't follow audio as well as video; video also allows us to put names to faces. Also, with the live video streaming, some people can e-mail or text message other people at the meeting to bring up points/ questions.

In terms of anonymity, let's just say that is required sometimes to get information that would otherwise not be allowed to be expressed.

 

[Dx Revision Watch]

I shall be refraining from further comment in this thread until the moderation team has had time to consider several requests that the content of specfic posts is scrutinised. Any enquries PM please.

 

[jace]

I just want to say, I don't remember contributing to CFSAC, as stated in Suzy's post on page three. Could be there's a hole in my memory and filing system, could be another Jace, I'm sure this issue is not that important but I wanted to put the record straight.

I'm sorry that they are not going to provide a live video feed. Surely it can be done quite cheaply these days?

 

[Dx Revision Watch]

I just want to say, I don't remember contributing to CFSAC, as stated in Suzy's post on page three. Could be there's a hole in my memory and filing system, could be another Jace, I'm sure this issue is not that important but I wanted to put the record straight.

Hi Jace,

Just to confirm but otherwise not contributing to the thread:

On the CFSAC site for the May 2011 meeting

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Presentations
May 10-11, 2011

under Written Testimony Received Prior to the Meeting Date

Suzy

 

[jace]

Suzy's right, as usual! My filing system and memory do have synchronous holes.

 

[Dx Revision Watch]

Suzy's right, as usual! My filing system and memory do have synchronous holes.

That's OK, Jace. I found my "lost" purse filed on the middle shelf of the fridge, last week.

 

[medfeb]

Regarding the CFSAC committee overstepping their bounds and recoding a DSM worthy illness to a valid one':

We all know that CFS as a term has been applied to patients with depression or other causes of fatigue and that this has created tremendous confusion. But it is also crystal clear that U.S. patients that meet the ME-ICC criteria have been given a diagnosis of CFS. In fact, in the US, patients are rarely given a diagnosis of ME because the US rarely gives this diagnosis. We also know that the ME-ICC itself states that ME is sometimes called CFS and that the Canadian Consensus Criteria refers to MECFS. Finally, WHO ICD-10 and the ICD-10 clinical modifications of every country except for the U.S. have coded CFS to G93.3 where PVFS is the lead term.

To say that CFS is a 'DSM worthy illness' dismisses all those patients who meet ME-ICC criteria but who today get a diagnosis of CFS in this country - not a diagnosis of ME. Of course we all want the name CFS to disappear. But that wont change overnight. In the meantime, to condemn all of those patients who meet ME-ICC criteria and have a CFS diagnosis to a 'Signs and Symptoms' classification is not acceptable and does real harm to those patients. In fact, I think it only exacerbates the very real problem that exists today - patients that meet ME-ICC criteria are viewed as depressed or not suffering from a real disease.

Regarding the CFSAC committee itself - I've spent hours reviewing CFSAC minutes and videos and have seen no evidence that the CFSAC concerns itself with general fatigue due to depression. On the other hand, I've seen lots of evidence that the CFSAC is very focused on the serious neurological illness that is best described by ME-ICC or the Canadian Concensus Criteria. In fact, of the 8 U.S. contributors to the ME-ICC, most if not all of them have been members of the CFSAC at some point. This is exactly the right group of people to make the recommendation to reclassify CFS as a neurological disease and to reject any suggestion that it is a psychological disease.

Regarding Suzy/ME Agenda - she provides an incredibly valuable service to this community. She keeps up to date on all things related to ICD and DSM, which is no easy task. And she makes that information freely available to other people, regardless of what country they are from. Like many other people before me, I used her site as well as others when doing my own initial research into the ICD and DSM issues. But I want to also reaffirm what Suzy/ME Agenda has said a number of times in a few threads - she is not part of the Coalition and did not collaborate on the Coalition proposal.

Mary Dimmock

It is on topic to view US issues as US issues. It is not anything personal and would have
no problem if I were calling the NHS or UK health officials for anyone to question or
find it strange. And who is trustworthy is a matter of opinion.

This committees contributions have been to overstep and usurp another diagnosis and recode
a DSM worthy illness to a valid one is not very helpful.

 

[Dreambirdie]

Regarding Suzy/ME Agenda - she provides an incredibly valuable service to this community. She keeps up to date on all things related to ICD and DSM, which is no easy task. And she makes that information freely available to other people, regardless of what country they are from.

Mary Dimmock

Thanks Mary. Suzy deserves a lot of credit for all her hard work on this.

 

[justinreilly]

That's OK, Jace. I found my "lost" purse filed on the middle shelf of the fridge, last week.

Suzy, you are truly one of us now! : )

 

[justinreilly]

I'm sorry that they are not going to provide a live video feed. Surely it can be done quite cheaply these days?

Seriously! They're going to do audio broadcast and video recording (not broadcast) anyway. How much more does it cost to broadcast the video?? This just sounds like BS like that they needed to use the little room for the ME conference because that's where the video equipment was! I suggest losing the transcription which garbles the science words up anyway. this seems like it would be the major cost.

 

[Nielk]

Does anyone plan to attend the meetings?

 

[Dx Revision Watch]

Does anyone plan to attend the meetings?

It's been confirmed to me that two well known US advocates have already reserved slots for Oral Testimony.

(Three hours have been allotted for public testimony, either in person or via telephone.)

From a quick skim of the Minutes for Day One and Day Two of the last meeting, there were around 19 public comments on Day One, in person and via telephone and another 12 on Day Two (some of the transcripts for Oral Testimony are up on the Presentations page of the Meetings page.

I don't think the Minutes record how many attendees signed in during the course of the two day meeting over and above those attending in order to give public testimony, but it would be interesting to know how many attended in total.

I shall be writing to Mr Nixon, this morning, to thank him for his email of clarification but also expressing my concerns, as a UK resident who likes to view some of the live streaming (when it is working for me) that it is planned to provide only audio stream on this occasion. (I agree with Tom, that I hope the video can be provided promptly and not several weeks down the line).

These are "dense" meetings with many different speakers over two long days and it's going to be very difficult to follow with only audio, especially if one is dipping in and out. When I can get the live stream to buffer, I tend to keep it on all day and just dip into those bits I am particularly interested in, whilst doing other things. To try and pick up on an audio, keep track of which agenda item is currently under discussion and who is speaking is going to present problems.

@ Justin

It was finding two 20 notes in the drawstring bag I keep my laundry pegs in, a couple of years ago, that convinced me I'm maybe getting too old to multi-task.

 

[Dx Revision Watch]

For the record, I sent the following to Mr Nixon, this morning:



To: Nixon, Emmett (HHS/OASH)
Cc: Martha Bond (HHS/OASH); Dr Nancy Lee; Dr Chris Snell (Chair CFSAC Committee)
Sent: Monday, October 17, 2011 1:38 PM
Subject: Arrangements for November CFSAC meeting


Dear Mr Nixon,

Thank you for your response of October 14. I appreciate the prompt clarification of my enquiries.

As a UK resident who likes to follow these meetings, I share the disappointment that US patients, carers and advocates are expressing that only audio is planned to be provided for this meeting due to budgetary constraints.

I am pleased that it is still planned to provide a video of the proceedings following the meeting and hope it will be possible to have this posted online within a reasonable timeframe.

I am not a CFS patient, myself, but a carer and don't suffer from cognitive impairment. However, these two day meetings are lengthy meetings with complex agenda items and with many different speakers contributing to discussions as committee members or providers of Oral Testimony.

Those with and without cognitive impairment will find that considerable concentration is going to be required in order to follow who is speaking, in the absence of visuals and name cards. Some of us like to make notes of what is being said and with no visuals, it will be difficult to accurately attribute contributions.

Would it be possible for speakers to be asked to identify themselves, by name, before they speak, or for the Chair or Secretariat to provide the name, if the speaker has not done so?


A precedent was set in May 2009 for the provision of live video streaming for the benefit of a patient group with an illness that causes significant cognitive impairment, malaise and fatigue and concentration difficulties in some patients. It would be a great pity if interest in these CFSAC meetings and the crucial issues discussed at them dwindles because accessibility to the meeting proceedings, via live video, has been withdrawn.

The Committee's decision to relocate to an alternative venue which provides better facilities for attendees and increased capacity has been generally well received but I would ask the Committee to give every consideration to reviewing the decision not to provide a live video stream for the benefit of and increased accessibility to a disability group and to explore ways in which funding for video streaming might be diverted.

In raising this issue with you, I should like to clarify that I present my concerns as an individual and not on behalf of any patient organisation in the UK or US and that I have no connection with any other initiatives or approaches that might be being made to the Committee in respect of similar concerns over the arrangements for this November meeting.

With thanks to all Committee members and outgoing Committee members for the time and interest put into these meetings which are of considerable interest to many of us outside the US.

Suzy Chapman

 

[Nielk]

In past years, there was a push to get people to attend. I don't see that now. Is it because it's useless?

 

[medfeb]

Nielk

I know that many patients are unable to attend but if patients are able to, I think their presence is important.

Last year, there was a push to get young people there (some I think were pre-teen) and to have them testify. Their presence and testimony definitely made an impact on the committee. One of them also commented that the size of the audience overall had an impact as well.

I know that some of the kids are planning on attending this year as well. I will be attending and also know a few other patients and careers who will be attending.

Mary

 

[Nielk]

I'm debating whether I should try, if I feel better to come in from NY. I wrote to them about giving oral testimony and got a reply that they don't have the exact schedule but will let me know the timing they can give me. They did say that they prefer to hear from people who have not testified before and I haven't. I just hope I'm not taking on something that will backfire on me.