Watch CFSAC meeting online Monday 9-4 EST May 10

[Sasha]

Too bad Justin and Marly missed their opportunity to speak.....darn

Any news on XMRV/blood supply? I was out when that was on...

 

[oerganix]

Yes. I like his approach. In the 'CFS definition' webinar he absolutly shredded the Emperic defnition all the while maintaing a balanced diplomatic tone.

It's too bad his time on the board is up. I don't think he'd give Dr. Unger much wiggle room the next time she makes an appearance.

He and Nancy should be on the board as long as they wish to serve.

Seems like he volunteered to be on one more year, to add 'continuity' because there will so many new members coming on. There wasn't any opposition, so I guess he'll be on one more year.

 

[HopingSince88]

Re: blood supply question - I thought the govt guy (holberg?) seemed very anxious and had trouble answering the questions with any directness. One big question that went unanswered many times is why are we allowing those with a history of CFS donate blood. Why not make the same kind of decision made by Canada/NZ/Australia. I think the answer came out of the woman sitting to the right of Wanda (forget her name) - who said something about scaring the public.

 

[Otis]

Oh good!! I must have missed that while the realplayer was dropping out.

 

[bullybeef]

Yeah, the blood supply spokesman spoke in true political guise. He simply couldn't answer the question, and the lady mentioned above said she worked for the NIH [I think], and was unsure as to whether pwme should be deferred from blood donation in the US, because it may scaremonger. And she is on the committee!! Personally, it came across that publicly announcing a blood ban would be a statement on admission, and they (NIH etc) may not want the public to know ME/CFS could be a blood born infectious disease!! It will also mean theyve been ignorant about this disease for decades.

Although it angers me, it makes sense to me why they wish to keep schtum on this subject.

Thats why I am telling everyone in a civil position about XMRV and that countries have officially banned people with an history of ME/CFS from blood donation.

 

[HopingSince88]

CFSAC to recommend US ban blood donations from PWC

I do think that the full committee did vote on making a recommendation to require the US blood banks to defer using the blood of patients with a history of CFS, including (I think) a requirement to ask the blood donor if they had a history of CFS (the holberg guy kept mentioning it is not the case in Canada to actually ask the question on the form for blood donors). The recommendation was a formal motion and was voted and it passed.

 

[bullybeef]

Yeah, I believe it was. Really, it's a no brainer. For some reason, I am sure they believed it may help diagnose the undiagnosed, and the people misdiagnosed with another condition. Simply informing the public on this, could move to educate the masses. Problem is, some aren't ready for the public to know, or ask questions.

Did you see the NIH lady give to guy across from her a dirty look. Jeez, if looks could kill!!!

 

[HopingSince88]

Case Definition

I don't know what happened after lunch, as I have been unable to get back into the webinar...but before lunch there was some discussion about the case definition. I am trying to remember whether it was Unger or Holberg, or someone else...... but there was some mention of expanding the definition to find more people - rather than embracing the CCC :Retro mad:

At least that is how I remember it.

Hopefully, the real advocates on the committee...and I felt strongly that there were several...will get this right.

 

[Hope123]

I'm afraid of what will happen after Jason/ Klimas leave the committee -- they're two of our strongest/ smartest researchers/ advocates! Is there some way they can get a second term? There aren't enough people with knowledge about CFS. Love the chairman's accent (Dr. Snell)! Dr. Gailen Marshall looks like he'll be a great advocate -- outspoken, smart, and always used "chronic fatigue syndrome" instead of "chronic fatigue." Anyone know more about him? I see he's an immunologist/ allergist clinician/ researcher.

Also, I appreciate Wanda Jones and perhaps she has no choice but the bylaws discussion and comments by NIH's Dr. Hanna and her make it sound like they're overly worried about gov't officials making a misstep when answering questions from the public, even if questions are submitted beforehand. I see this as goverment CYA (cover yours *ss) and a possible block to progress.

 

[jspotila]

I do think that the full committee did vote on making a recommendation to require the US blood banks to defer using the blood of patients with a history of CFS, including (I think) a requirement to ask the blood donor if they had a history of CFS (the holberg guy kept mentioning it is not the case in Canada to actually ask the question on the form for blood donors). The recommendation was a formal motion and was voted and it passed.

Yes, this is correct. Dr. Holmberg reported that the AABB task force was not recommending any change to current blood safety practices. But in answering the last question, he said that if the CFSAC made a different recommendation then he would share it with the AABB task force. HopingSince88 captured the committee's recommendation.

The representative from NIH is Dr. Eleanor Hanna.

 

[HopingSince88]

Staggered Terms for Committee Members

There was discussion to change the time served on committee and staggering terms so that they are fully replaced every 4 years (I think): 3, 3, 4, 3?

Some of the members offered to stay on an extra year. Anyone know who those folks were?

I do think staggered terms is a good idea.

 

[jspotila]

AHRQ State of Knowledge on CFS

There is an AHRQ report on the State of Knowledge on CFS from 2001. It was referenced during the meeting this morning, when Dr. Hanna was discussing the expected State of the Knowledge conference on CFS that NIH will (theoretically) hold in 2011. If anyone wants to see that report, you can find it online here: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=hserta&part=A58979

 

[HopingSince88]

Thanks, Jennie.

Also...because I had trouble logging in at the start of the webinar and only caught the very end of introductions and because the 'closed captioning' blocked my view of people's names... is there anyway to get a roadmap of who was sitting where at the conference table?

Thanks,
Hoping...

 

[jspotila]

Thanks, Jennie.

Also...because I had trouble logging in at the start of the webinar and only caught the very end of introductions and because the 'closed captioning' blocked my view of people's names... is there anyway to get a roadmap of who was sitting where at the conference table?

Thanks,
Hoping...

Ok, I'll do my best. Starting at the far right was Dr. Leonard Jason. Proceeding counterclockwise from him, here are my notes: Dr. Galen Marshall (new member), Dr. Nancy Klimas, Dr. Michael Houghton (new member), Dr. Susan Levine (new member), Dr. Marc Cavaille-Coll (FDA ex officio), Dr. Eleanor (NIH ex officio), Dr. Wanda Jones, Dr. Chris Snell, Dr. Michael Miller (CDC ex officio), Dr. Deborah Willis-Fillinger (HRSA ex officio), Christine Williams (AHRQ - hopefully to be added as an ex officio), two men from SSA (neither of whose names I caught or could find), and these I think I got in order but someone correct me if I am wrong: Jason Neufeld, Dr. Ron Glaser, Dr. Arthur Hartz, Dr. Dane Cook (new member), and Eileen Holderman (new member).

 

[HopingSince88]

Thank you, Jennie.

 

[Hope123]

If they invite CMS (which controls Medicare), it might be interesting to see how many people are on Medicare due to CFS, spending on health services, etc.

Also, with SSA, has anyone ever looked into how many applications are filed, how many approved, and how many claims sustained due to CFS? It might also be interesting to look at the ages of people on SSA due to CFS to reinforce the idea that CFS affects people in their prime working years and oftentimes they might remain on disability for years-decades due to it.

I know that the CDC cites CFS as hitting people in their 40s-50s but my suspicion is that the average age of onset is more like in the 30s and some studies seem to show this also, including the large UK surveys. I believe the recent CAA surveys also showed this through the tables but I can't be sure because the average age of onset overall was not calculated? displayed? in the report and would need to be drawn from the raw data. (Eyeballing the tables, 717/1100 of the respondents were under 55 and the average ages of onset in these groups were 15/26/35. 43 for the over 55 set. Also, the CAA might have older members as younger folks not aware of the Tahoe era might not be as familiar with the CAA?) I think the prevalence might be highest in those 40-50 because they've been sick for so long but this isn't the same as age of onset.

 

[Esther12]

Thanks for the info people. I watched a bit (the blood donation guy) and didn't feel inspired to keep going with it, but it was good to read the comments of others.

 

[kit]

Thanks for listing the attendees Jennie.

 

[VillageLife]

Finally towards the end of the second half....One doctor said how come we can't stretch the funds for CFS, because we have XMRV which is huge. And Wanda jones said maybe in 6 months it wont be XMRV anymore it will be abcd...or something else. That comment has up set me. I felt it was a careless comment.

 

[citybug]

I missed Sec. Koh. Did he say anything about XMRV? I thought Dr. Unger seemed very nervous, which I liked, she should be. She seemed open, but only acting director, but CDC still on its course of checking out Georgia county. I didn't think she mentioned Xmrv one time. Also is her new department, with scary sounding infectious name only CFS and HPV? Is it another woman's disease ghetto? Other departments must be working with the blood bank. All the committee participants were good at inserting how serious CFS/ME was at all points and I think it must have an effect on the ex-officios. I thought the blood bank guy was good, though he couldn't change the policy they haven't arrived at, he seemed to take it very seriously, no doubt that XMRV is real, just undetermined how it affects the blood banks, which are not run by the government. He did say developing testing was going slowly. Whittemore Peterson was mentioned several times. Did Dr. Hanna say anything good? frown.
I was so nervous about waking up to watch it that I hardly slept. Then kept falling asleep during the charter recommendations. Why can't they have longer one day meetings?