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

ETA: I have posted my "Response from Nixon, Emmett (HHS/OASH) CFSAC Support Team" on the original CFSAC thread:

http://forums.phoenixrising.me/show...ovember-8-2011&p=213036&viewfull=1#post213036

Jill McLaughlin said:

An urgent concern that many have are how UK people seem to be taking over purely US issues.

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Jill, I shall make these comments to you for you to consider then I shall say no more.


I have raised two queries of the CFSAC Committee Secretariat, Dr Lee. One around the rationale for relocating the meeting; one in connection with the arrangements for recording the meeting for streaming and videocasts.

It is possible that the location of the meeting may have a bearing on the arrangements for recording the meeting - that is perfectly logical and it is also perfectly reasonable to have the issue of recording the proceedings , live streaming and videocasts clarified.


1] CFSAC meetings are viewed via live streaming and videocasts by patients and carers outside the US.

2] In what way do polite enquiries made of the Secretariat about meeting arrangements constitute "UK people taking over purely US issues"?

3] DSM-5 is not a "purely US issue". DSM-5 has been discussed at the May CFSAC meeting. Patients and carers outside the US will be affected by DSM-5; as stakeholders in DSM-5, they have an interest in discussion of DSM-5 at CFSAC meetings.

4] Patients and carers outside the US have submitted Written Testimony to CFSAC meetings. You will find on the CFSAC site that both Jace and Tom K have submitted Testimony, in the past. I have not submitted Testimony.

I do not recall you questioning, at the time, whether these two UK patients should be permitted to submit Testimony.

5] There is nothing in the CFSAC Charter that rules against UK patients submitting Testimony.

6] There is nothing in the CFSAC Charter against UK people making polite enquiries about meeting arrangements and the arrangements for the broadcasting of meetings.

7] You claim "An urgent concern that many have..."

Who are these "many"?


Suzy Chapman

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]

We have heard concerns about changes we have made in the venue and the format of the upcoming 2011 November Chronic Fatigue Syndrome Advisory Committee meeting. Below we provide additional details about the meeting.

We are working diligently to address major shifts in budget restrictions and protecting the personal safety of the public attending the meeting. We have moved the Fall CFSAC meeting to the Holiday Inn 550 C. St. SW, Columbia Room, Washington, D.C. 20024. This change was made because the HHS Humphrey Building Room 800 cannot accommodate more than 50 persons, and we are required to escort all persons attending the meeting due to security measures in place. The Columbia room at the Holiday inn holds a maximum of 300 people and provides an opportunity for the public to move freely about the hotel, rest in their rooms and use open hotel areas including the hotel cafeteria and restaurant. HHS will continue to provide a quiet area in the rear of the Columbia room to accommodate those needing a place to rest. HHS will not provide any medical services.

There will be a live audio link to the two day meeting, which allows listeners to hear the entire meeting in real time. Due to budgetary considerations, we are unable to provide a live-video cast as previously arranged. We will provide a video recording of the meeting on the CFSAC webpage http://www.hhs.gov/advcomcfs/. This recording will provide a higher quality video at substantially lower cost.

Time slots for public testimony will be available on a first-come, first-served basis and limited to five minutes per speaker. Priority will be given to individuals who have not given public testimony in previous meetings. Three hours have been allotted for public testimony. As before, we will accommodate persons who want to provide their testimony by telephone.


The CFSAC Support Team

Many people have expressed concern when UK people seem to try to dominate these strictly US issues.
Anyone can give opinions or engage in discussions but I can't see any of us calling the NHS or Parliament or
UK health officials. It seems very odd and I would not trust this as a source.

Jill McLaughlin said:

Many people have expressed concern when UK people seem to try to dominate these strictly US issues.
Anyone can give opinions or engage in discussions but I can't see any of us calling the NHS or Parliament or
UK health officials. It seems very odd and I would not trust this as a source.

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Jill has already received a response on this thread:

http://forums.phoenixrising.me/show...CFSAC-concerns&p=213028&viewfull=1#post213028


If Jill does not trust me as a source, she can be reassured that there are plenty who do. And if she would like a copy of Emmett Nixon's email to me, that was also CCd to Martha Bond, (HHS/OASH), I shall be very happy to provide her with a copy.


Suzy Chapman

I do not know what the policy is regarding testimony to the CFSAC and if they accept it then so be it.
What I see is the dominance of the issues. I do not think any of us would call NHS or UK health officials.

The DSM concerns CFS nearly by definition. Others are trying to stop the code changes which will seal our fate
which these groups are promoting.

Who are they who do not support these groups? There have been petitions that have stated as such so
names are probably available. And probably most of the 10,000 people who signed the ME petition.
But this "coalition" of very few (Pandora, WI, some on line sites and a few local support groups).
It is very deceiving and in terms of numbers, not many.

ME agenda said:

Jill, I shall make these comments to you for you to consider then I shall say no more.


I have raised two queries of the CFSAC Committee Secretariat, Dr Lee. One around the rationale for relocating the meeting; one in connection with the arrangements for recording the meeting for streaming and videocasts.

It is possible that the location of the meeting may have a bearing on the arrangements for recording the meeting - that is perfectly logical and it is also perfectly reasonable to have the issue of recording the proceedings , live streaming and videocasts clarified.


1] CFSAC meetings are viewed via live streaming and videocasts by patients and carers outside the US.

2] In what way do polite enquiries made of the Secretariat about meeting arrangements constitute "UK people taking over purely US issues"?

3] DSM-5 is not a "purely US issue". DSM-5 has been discussed at the May CFSAC meeting. Patients and carers outside the US will be affected by DSM-5; as stakeholders in DSM-5, they have an interest in discussion of DSM-5 at CFSAC meetings.

4] Patients and carers outside the US have submitted Written Testimony to CFSAC meetings. You will find on the CFSAC site that both Jace and Tom K have submitted Testimony, in the past. I have not submitted Testimony.

I do not recall you questioning, at the time, whether these two UK patients should be permitted to submit Testimony.

5] There is nothing in the CFSAC Charter that rules against UK patients submitting Testimony.

6] There is nothing in the CFSAC Charter against UK people making polite enquiries about meeting arrangements and the arrangements for the broadcasting of meetings.

7] You claim "An urgent concern that many have..."

Who are these "many"?


Suzy Chapman

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Jill McLaughlin said:

An urgent concern that many have are how UK people seem to be taking over purely US issues.
To most in the US the main complaint to HHS has been that these US groups (CFIDS Assoc,
Pandora etc.) do NOT represent us or a vast majority of patients, so perhaps they have
heard it enough to respond accordingly.

These groups have been practically the only ones attending for some time now and do
NOT have the support of probably the majority of the overall patient community or
stakeholders.

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Jill McLaughlin said:

Many people have expressed concern when UK people seem to try to dominate these strictly US issues.
Anyone can give opinions or engage in discussions but I can't see any of us calling the NHS or Parliament or
UK health officials. It seems very odd and I would not trust this as a source.

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It might be nicer for everyone else if personal grudges against individual forum members are kept off the forum.

In my personal experience, Suzy is a 100% trustworthy source.

I haven't seen anyone expressing urgent concerns that "UK people" are taking over the US, except you Jill.

I think the fate of pwc in the U.S. and England are joined to some degree. Every Oxford study that comes out in England gets quoted over here. We see British psychiatrists having input into the DSM. And the CDC affects the UK because they are seen as leaders in health research and policy.

I guess there might be instances where a political move could hurt one country by help another. I just haven't seen that happen yet.

Well, I'm satisfied with what they said now. The Holiday Inn is a better venue. It's easier on PWC. And we can see a movie afterward. And we can call in testimony.

Looks like the meeting is gaining a better venue in exchange for giving up the video part of the live feed. Seems like a good trade-off to me.

Bob said:

I would prefer it if personal grudges against individual forum members are kept off the forum.

In my personal experience, Suzy is a 100% trustworthy source.

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Thank you Bob and I do hope this thread will remain on topic.

I have had some contact with Dr Lenny Jason today, who reminded me that this will be his last CFSAC meeting, as his term draws to an end.

I am grateful to Dr Jason for informing the Committee at the May CFSAC meeting around ICD-10, ICD-11 and particularly for bringing the Committee's attention to current proposals for DSM-5 and the implications of DSM-5 proposals for patients both in the US and worldwide - an issue which had not previously been discussed in any depth at CFSAC meetings, and for placing concerns around DSM-5 in the context of ICD-10-CM.

Also for medical attorney, Steven Krafchick's, contributions to that discussion. I hope that Mr Krafchick will remain on the Committee and I thanked him following that meeting for his very helpful contributions around DSM-5 and ICD-10-CM.

Suzy

Andrew said:

Well, I'm satisfied with what they said now. The Holiday Inn is a better venue. It's easier on PWC. And we can see a movie afterward. And we can call in testimony.

Looks like the meeting is gaining a better venue in exchange for giving up the video part of the live feed. Seems like a good trade-off to me.

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What I will do, when I thank Mr Nixon for his clarifications, is suggest that Committee members and speakers could be asked to state who they are before they speak, or identified by the Chair or Secretariat, as it will not be so easy to identify and keep track of who is speaking without images.

I hope also, that subtitles will continue to be provided on the videocast; I've had several people contact me through my website when I have posted notices for meetings saying how helpful it is to have subtitles, too. I know CFSAC is subject to meeting certain requirements for accessability by disability groups and provision of subtitles for those with hearing impairment may be a requirement where video is produced.

Suzy

Andrew said:

Well, I'm satisfied with what they said now. The Holiday Inn is a better venue. It's easier on PWC. And we can see a movie afterward. And we can call in testimony.

Looks like the meeting is gaining a better venue in exchange for giving up the video part of the live feed. Seems like a good trade-off to me.

Click to expand...

The live video feed never works for me anyway... It keeps cutting out... So it won't make any difference for me personally anyway... And it will be nice to be able to watch a superior quality video afterwards.

Hopefully the delay won't be too long between the meeting and the video recording being available. There's a bit difference between, say, a few days and a few weeks e.g. some people might hold off listening with the audio and watch the video after a few days. But if it's not going to be available for quite a few weeks by video, then one might be more "forced" to use the audio.

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.

ME agenda said:

Thank you Bob and I do hope this thread will remain on topic.

I have had some contact with Dr Lenny Jason today, who reminded me that this will be his last CFSAC meeting, as his term draws to an end.

I am grateful to Dr Jason for informing the Committee at the May CFSAC meeting around ICD-10, ICD-11 and particularly for bringing the Committee's attention to current proposals for DSM-5 and the implications of DSM-5 proposals for patients both in the US and worldwide - an issue which had not previously been discussed in any depth at CFSAC meetings, and for placing concerns around DSM-5 in the context of ICD-10-CM.

Also for medical attorney, Steven Krafchick's, contributions to that discussion. I hope that Mr Krafchick will remain on the Committee and I thanked him following that meeting for his very helpful contributions around DSM-5 and ICD-10-CM.

Suzy

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Andrew I agree. But we have no political power in any other country and should not
be directly interfering. There are very different political systems and it is unwise for
those from other countries directly interfere and get in the middle of strictly any
countries issues or functioning. I find it intrusive and offensive.

Andrew said:

I think the fate of pwc in the U.S. and England are joined to some degree. Every Oxford study that comes out in England gets quoted over here. We see British psychiatrists having input into the DSM. And the CDC affects the UK because they are seen as leaders in health research and policy.

I guess there might be instances where a political move could hurt one country by help another. I just haven't seen that happen yet.

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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.

Jill McLaughlin said:

Andrew I agree. But we have no political power in any other country and should not
be directly interfering. There are very different political systems and it is unwise for
those from other countries directly interfere and get in the middle of strictly any
countries issues or functioning. I find it intrusive and offensive.

Click to expand...

I see no "interfering."

ME agenda said:

Thank you Bob and I do hope this thread will remain on topic.

I have had some contact with Dr Lenny Jason today, who reminded me that this will be his last CFSAC meeting, as his term draws to an end.

I am grateful to Dr Jason for informing the Committee at the May CFSAC meeting around ICD-10, ICD-11 and particularly for bringing the Committee's attention to current proposals for DSM-5 and the implications of DSM-5 proposals for patients both in the US and worldwide - an issue which had not previously been discussed in any depth at CFSAC meetings, and for placing concerns around DSM-5 in the context of ICD-10-CM.

Also for medical attorney, Steven Krafchick's, contributions to that discussion. I hope that Mr Krafchick will remain on the Committee and I thanked him following that meeting for his very helpful contributions around DSM-5 and ICD-10-CM.

Suzy

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Thank you Suzy for the tremendous job you've done on the ICD code and DSM-5 issue.

There are few people as trustworthy and as devoted to this cause as you've been. In fact I can't think of anyone else. Anybody who questions your motives and intentions is very much in the dark about the monumental effort you have put in to this on behalf of ALL of us WORLDWIDE.
:Sign Good Job:

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.

Jill McLaughlin said:

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.

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Jill, I respectfully suggest that you check the moderation rules.

Calling into question the trustworthiness of another forum member is not "a matter of opinion" - it is a personal slur on an individual's character and their standing as an advocate.

The offer still stands. If you would like a copy of Mr Emmett Nixon's email, I am happy to provide you with a copy.

If you have evidence to support your contention that I am not a trustworthy source of information then I suggest you provide it, off list.

If not, then I formally request that you desist making slurs on public platforms against an individual's character and good name.

I do not want to see this thread go the way of a previous thread on this forum. As I reminded you near the beginning of that other thread, now locked, the ICD-10-CM issue is not about me.

DSM-5 is not about me. I have expressed views and opinions on both that are shared by others, both in the US and UK and elsewhere.

So might we please stay on topic?

Suzy

I agree, think we're all in this together. For this US member, any 'interfering' from our knowledgeable UK members has been viewed wholly beneficial to our common cause.

Andrew said:

I think the fate of pwc in the U.S. and England are joined to some degree. Every Oxford study that comes out in England gets quoted over here. We see British psychiatrists having input into the DSM. And the CDC affects the UK because they are seen as leaders in health research and policy.

I guess there might be instances where a political move could hurt one country by help another. I just haven't seen that happen yet.

Click to expand...