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

[Nielk]

I was told to watch for Lenny Jason's speech after lunch today. Since it's his last time on the committee, he is really going to tell them what he thinks."

 

[Nielk]

I was told to watch for Lenny Jason's speech after lunch today. Since it's his last time on the committee, he is really going to tell them what he thinks."

I looked up the agenda. He is scheduled to speak at 11:45 am.

For those who are interested to hear:

phone # 866 395-4129
code # 24759937

 

[Dolphin]

I looked up the agenda. He is scheduled to speak at 11:45 am.

For those who are interested to hear:

phone # 866 395-4129
code # 24759937

The 11.45am piece may not be his farewell speech which I think might be the interesting one? That would be towards the end of the meeting I would imagine.

 

[SpecialK82]

Thanks Nielk - let's hope he does!

 

[Andrew]

Just listening to Beth Unger. My impression now is we cannot expect any help from the CDC. Her comment that they are not responsible for the Reeves definition because they were following the advice of their committee. In that case, no government agency is responsible for anything, because they are all run by committee. Or to put it another way, the buck stops no place.

Also, we are in an impossible situation regarding the name change. Basically, here's what happened that led to this problem.

1. There was an outbreak of ME in Lake Tahoe
2. The NIH named it CFS and gave it a watered down definition that did not reflect the actual findings.
3. The watered down definition has become a standard.
4. To fix this, activists are trying to merge the names and replace them with ME
5. Existing ME groups are against this, because they don't want to be handicapped by all the baggage the CFS name carries. So they protest against this.
6. Government agencies hear these protests and actually have a legitimate reason not to merge the names. So this gives us an impossible situation.

One course might be to push NIH etc. to research ME, and push doctors to diagnose us with ME instead of CFS. But I can't imagine that ever happening.

 

[Dolphin]

Just listening to Beth Unger. My impression now is we cannot expect any help from the CDC. Her comment that they are not responsible for the Reeves definition because they were following the advice of their committee. In that case, no government agency is responsible for anything, because they are all run by committee. Or to put it another way, the buck stops no place.

Also, we are in an impossible situation regarding the name change. Basically, here's what happened that led to this problem.

1. There was an outbreak of ME in Lake Tahoe
2. The NIH named it CFS and gave it a watered down definition that did not reflect the actual findings.
3. The watered down definition has become a standard.
4. To fix this, activists are trying to merge the names and replace them with ME
5. Existing ME groups are against this, because they don't want to be handicapped by all the baggage the CFS name carries. So they protest against this.
6. Government agencies hear these protests and actually have a legitimate reason not to merge the names. So this gives us an impossible situation.

One course might be to push NIH etc. to research ME, and push doctors to diagnose us with ME instead of CFS. But I can't imagine that ever happening.

Thanks for this. Will have to listen closely.

I wonder is she referring to the Fukuda et al (1994) or Reeves et al (2003) committees. I think in both cases the CDC decided who to invite.

Also, the Fukuda led to prevalence figures in the US of 0.235% (when CDC used them) and 0.422% (when Lenny Jason used them) for random population studies in the US. The 2003 criteria (Reeves et al, 2003) made relatively minor changes that probably wouldn't have made much difference. Then the Reeves et al (2005) paper, which was just CDC people, operationalized* them in a weird way and the prevalence jumped to 2.54%. So it was the CDC with the Reeves et al. (2005) paper who are most responsible for the very broad definition. And indeed, they oversaw the previous meetings.

* operationalize means to choose the wording of the questions/what questionnaires one is going to use and what cut-off points one wants to use.

 

[WillowJ]

Dr. Dane Cook says there is still researcher interest in ME/CFS. He says closing the Centers of Excellence sent the message that NIH was not interested in CFS and investigators went to related fields like FM and GWI, but the SoK conference sent the message that NIH is interested again, so Cook says investigators--who are still interested--will come back.

 

[WillowJ]

2:47 PM
While I was typing, Jennifer Spotila (CAA?) came on but I missed most of what she said.
She basically lambasted the CFSAC and demanded help for the ME/CFS community.
Go Jennifer...that was exciting!

Thanks very much for your notes. That was very helpful.

Jennie's testimony can be read at Research 1st. It was very good (I didn't hear it, just read it.)

Excellent testimonies, Andrew and Nielk. Thanks for doing that!

Edit: now I see Dolphin already posted the link to Jennie's testimony. I missed that the first time I scanned the thread. Now there are two links.

 

[WillowJ]

1. Double the current NIH funding for extramural research. Priority should be given to research on biomarkers and potential pathogens as well as clinical trials.

Doubling is nowhere near enough. That would be about $6-12 million, still pocket lint. Fibromyalgia gets that much (~$12m), but no diseases considered serious get that little. MS (barely escaped from "hysterical paralysis) gets $44 million (nowhere near enough; the way they tell if their medicine is working is to get more scans a year later and see whether there is further damage!) Parkinsons get $500 million. AIDS gets more than twice what Parkinsons gets.

 

[justinreilly]

Just listening to Beth Unger. My impression now is we cannot expect any help from the CDC. Her comment that they are not responsible for the Reeves definition because they were following the advice of their committee. In that case, no government agency is responsible for anything, because they are all run by committee. Or to put it another way, the buck stops no place.

Beth Unger is just Bill Reeves with the sense not to say anything too stupid to the press. We are in the same situation as under Reeves. She needs to go, now!

Also, we are in an impossible situation regarding the name change. Basically, here's what happened that led to this problem.

1. There was an outbreak of ME in Lake Tahoe
2. The NIH named it CFS and gave it a watered down definition that did not reflect the actual findings.
3. The watered down definition has become a standard.
4. To fix this, activists are trying to merge the names and replace them with ME
5. Existing ME groups are against this, because they don't want to be handicapped by all the baggage the CFS name carries. So they protest against this.
6. Government agencies hear these protests and actually have a legitimate reason not to merge the names. So this gives us an impossible situation.

One course might be to push NIH etc. to research ME, and push doctors to diagnose us with ME instead of CFS. But I can't imagine that ever happening.

Yes, we have been put in a very difficult place with the nomenclature.

This will happen; we will be diagnosed with ME at some point. It could be in 20 years or it could be in a few years. It is up to us to bring that time closer to us by demanding ME be used, not "CFS."

 

[usedtobeperkytina]

Well, I had some tell me it was odd to hear my voice describing what it is like to be a man with this illness. And that was the first time for me. Funny, my heart was racing from being nervous. I was more nervous doing this than the radio interviews I have done.

I think Dr. Lee has learned some lessons this time.

I need to take a closer look at the CDC website again. Glad to hear some changes have occurred. But it sounds like more work needs to be done.

I think of what Dennis Mangan said at the SoK. He said that he noticed the researchers and patients are like a family, maybe a dysfunctional family, but there is a closeness that is not seen among others.

I describe those who go to conferences as "researcher groupies."

And then we have the wise long-time advocates. They are like our grandmothers and grandfathers, full of knowledge and still going strong.

There are many different personalities in our community. We all want the same thing, but we often disagree about how to get there. Seeing the posts here and then hearing your voices, Neik and Andrew, makes me feel even closer to my fellow advocates.

One battle at a time, we are winning.

Tina

 

[Nielk]

Hi Tina,

Thank you for speaking even though it was nerve racking. (I can empathize - I have never done this before).
It's interesting how you give an overview of how we feel we all belong together.
You are right, there are many personalities but the end goal is the same for all of us. We just want to get better and go on with our lives. I think that our commonality of battling the establishment brings us closer. We are in the same army.
Seriously though, the ONLY good part about my 9 year journey with this illness is the amazing people I have met on the way. People here on the forum and also some of the doctors that treated me. I think that doctors who specialize in this, are very unique people. I think most doctors would shy away from us - we are not an easy group to deal with. It's very frustrating for the doctors too. In my book, they are angels trying to rescue us. Thank you Tina for your thoughts.

 

[Jill McLaughlin]

Those with ME do NOT belong with CFS. This "ME/CFS" Coalition still dominated even though they claimed it would be open to others who have not spoken before. CFS will never help us. The "changes" are just cosmetic. There is no such thing as ME/CFS. You may not hijack our illness. We will not go away or back down.

Hi Tina,

Thank you for speaking even though it was nerve racking. (I can empathize - I have never done this before).
It's interesting how you give an overview of how we feel we all belong together.
You are right, there are many personalities but the end goal is the same for all of us. We just want to get better and go on with our lives. I think that our commonality of battling the establishment brings us closer. We are in the same army.
Seriously though, the ONLY good part about my 9 year journey with this illness is the amazing people I have met on the way. People here on the forum and also some of the doctors that treated me. I think that doctors who specialize in this, are very unique people. I think most doctors would shy away from us - we are not an easy group to deal with. It's very frustrating for the doctors too. In my book, they are angels trying to rescue us. Thank you Tina for your thoughts.

 

[Andrew]

With the creation of the ICC, the changes we've seen in the CDC website, it would be easy to be lulled into thinking that we are on a roll -- and that it's impossible for them to pull another Reeves on us. But the fact is, it is very possible. The new people there know nothing of the history. They probably never read the major study that was done on the Tahoe outbreak. They probably don't realize that study exists, what it says, or that this illness name was given to that cluster. And so they except research that was done on different types of populations as legitimate, based on whether it fits that population, even if it is inconsistent with Tahoe.

And so the fatigue-only syndrome types will be invited to the party, and they will muddy the waters. We can't wait and hope to see what happens. If you have the email of someone you can contact, better to let your voice be heard before the decision is made.

 

[Nielk]

Those with ME do NOT belong with CFS. This "ME/CFS" Coalition still dominated even though they claimed it would be open to others who have not spoken before. CFS will never help us. The "changes" are just cosmetic. There is no such thing as ME/CFS. You may not hijack our illness. We will not go away or back down.

Jill,

Your game with the NAME is getting old and I'm sick of you sticking your two sense where it doesn't belong. You quoted my post #192 when you wrote this "hijacking business". Show me where I mentioned once any name at all in my whole post!!!!
All you do is add to the stress that we are already feeling. everyone knows how you feel to the point of nausea.
this is a constructive thread where we are discussing the future of our lives. Just stop abusing people. I don't want to hijack "your disease", you can keep it. I have enough dealing with my own problems than to have you interject your poison.
Leave me alone - and I really mean it. I don't know how you are still posting here. I thought you were thrown out.

 

[Sasha]

Thanks to all of you who gave testimony and who reported on what was happening yesterday - I can't access the meeting so I'm grateful to get some sense of what's going on while waiting for the video to go online later.

Has anything of interest happened today?

 

[Jill McLaughlin]

It is not about the name but the definition and the diagnosis. It is hijacking a diagnosis to try to throw it in with something with which it does not belong.
The CFSAC has suddenly become about ME/CFS. On whose authority? They make a recommendation to change the name and ICD codes, THEN when there is a backlash invite an expect from NCHS to the meeting? Nothing has been passed or accepted.

Our diagnosis is ME. It should not be called CFS or ME/CFS. Sorry you ME/CFSers may not borrow it to make CFS sound better. It won't work anyway.
So ME/CFSers may not hijack our illness.

My daughter has ME and will not allow her to be abused by CFS any longer or this "Coalitions" attempt to keep it mixed in with CFS. Many ME patients feel the same. You can do what you want with CFS.

Jill,

Your game with the NAME is getting old and I'm sick of you sticking your two sense where it doesn't belong. You quoted my post #192 when you wrote this "hijacking business". Show me where I mentioned once any name at all in my whole post!!!!
All you do is add to the stress that we are already feeling. everyone knows how you feel to the point of nausea.
this is a constructive thread where we are discussing the future of our lives. Just stop abusing people. I don't want to hijack "your disease", you can keep it. I have enough dealing with my own problems than to have you interject your poison.
Leave me alone - and I really mean it. I don't know how you are still posting here. I thought you were thrown out.

 

[Jill McLaughlin]

Andrew, I agree. They just keep redefining CFS. The ICC states explicitly that it rejects the fatigue labels or even any hybrid designation so there has been massive misrepresentation there also. ME should not be part of the CDC CFS program or CFSAC. Enough. CFS research will never help anyone with ME. CFS does not describe a neurological illness so literally coding it incorrectly will not help. All neuroimmune diseases can cause disabling levels of fatigue, but no neuroimmune disease can be diagnosed using fatigue and a few minor symptoms as the sole diagnostic benchmarks. It's just another trap.

 

[Ember]

Was ME-ICC mentioned or discussed at the CFSAC meeting?

 

[Jill McLaughlin]

I only caught part of it but did not hear it mentioned. But the ME-ICC is for ME and rejects the use of ME/CFS, which is this
apparently this committee's new gig.

Was ME-ICC mentioned or discussed at the CFSAC meeting?