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Fred Gill - A very dim light may have just gone on, maybe!

CBS

Senior Member
Messages
1,522
I don't know if this has been discussed earlier but I am just getting around to listening to the NIH "Demystifying Medicine - CFS" presentation and towards the end I was completely stunned to here Fred Gill say that while listening to the presentations by Drs. Lo and Alter, he was struck by the thought that the heterogeneity of CFS (in the 1994 and 2005 CDC definitions) might be important.

The comment is at roughly 115:45 into the recording.

You have got to be &%$&(*& kidding me. Gill had just presented eight slides on diagnosing CFS!

This is THE NIH CFS specialist trained under the preeminent Dr. Strauss! And in spite of Leonard Jason's numerous papers on the CDC's widening criteria for the diagnosis of CFS and the resultant increasing heterogeneity of the CFS population being studied by the CDC, NIH and anyone using their criteria it JUST DAWNED UPON HIM THAT THESE DEFINITIONS MIGHT PRODUCE HETEROGENEOUS RESEARCH COHORTS/Patient groups!!!!

What in the $%!! has the CAA been saying to the NIH and CDC using their inside voices? If the CAA cannot even convey to the CDC and NIH that the definition developed in part by Suzanne Vernon produces a heterogeneous group of patients for their research - in spite of all the work that has been done by Dr. Jason - what good is the CAA?

The CAA helped fund Dr. Jason's work and there is a complete absence of evidence that they have successfully conveyed even the most basic of principles to the NIH and the CDC.

We are doomed until we have another advocacy group and these dinosaurs that are either advising or heading up these large and expensive studies have retired or died and gotten out of the way!
 

CBS

Senior Member
Messages
1,522
Nothing short of stunning

Fred Gill- NIH's "CFS" expert (115:45 - http://videocast.nih.gov/Summary.asp?File=16477):

I’ve learned a lot from this, what I think for me was interesting to me and for all these years and has not been in my mind, and has to do with people who are doing other kinds of studies - The heterogeneity of Chronic Fatigue Syndrome we’ve never really attacked. It’s so hard to diagnose, it is so hard to characterize. How can you take the group and start splitting them into groups. But it is very possible; there are multiple factors, different factors [in patients] who have what we call Chronic Fatigue Syndrome.
Never crossed his mind! I am nothing short of stunned.

Later, Harvey Alter: “You have to first decide that it is a disease worth studying.”
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I was sickened by this. I think it says something about CAA and probably more about Dr. Gill. If this has truly never been mentioned to him, obviously it is beyond ridiculous that CAA (and CDC) hasn't been educating NIH about such a basic point. I think it is possible that he's just lying in the mode of Stephen Straus and pretending he's never heard of this problem with the Reeves Criteria.

Just as ridiculous was this statement was in response from someone wondering if there has ever been hypotension recorded in ME patients, even transiently in the acute phase, where florinef might be effective. And Dr. Gill responds: "I can't answer your question." He is claiming he's never heard of hypotension in ME???? Totally incompetent, or more likely, imo, evil like his mentor Dr. Straus. Whoever is at the podium, Dr. Alter or Lo I guess did a little better saying there were similarities with Addison's (extreme hypocortisolemia), "some sort of neuro-endocrine abnormality, something's in there that's doing something."
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi, I too was taken aback by the comment on heterogeneity. However, Dr. Gill (?) was also supporting the idea of comparative mitochondrial genetic sequencing in ME/CFS to determine if there is a genetic predisposition, and it is way past time for such as study to have been done. Dr. Gill is a treating physician from what I can gather, and said some things along the way as though they were true that I felt like disputing (on orthostatic intolerance, vitamins and antiviral treatments), but how many doctors out there know even less? We should view this as a teaching opportunity for doctors, including Dr. Gill. I hope he learnt a lot from Lo and Alter, and will continue to do so.

Bye
Alex
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi, I too was taken aback by the comment on heterogeneity. However, Dr. Gill (?) was also supporting the idea of comparative mitochondrial genetic sequencing in ME/CFS to determine if there is a genetic predisposition, and it is way past time for such as study to have been done. Dr. Gill is a treating physician from what I can gather, and said some things along the way as though they were true that I felt like disputing (on orthostatic intolerance, vitamins and antiviral treatments), but how many doctors out there know even less? We should view this as a teaching opportunity for doctors, including Dr. Gill. I hope he learnt a lot from Lo and Alter, and will continue to do so.

Bye
Alex
 

anciendaze

Senior Member
Messages
1,841
I don't know if this has been discussed earlier but I am just getting around to listening to the NIH "Demystifying Medicine - CFS" presentation and towards the end I was completely stunned to here Fred Gill say that while listening to the presentations by Drs. Lo and Alter, he was struck by the thought that the heterogeneity of CFS (in the 1994 and 2005 CDC definitions) might be important.

The comment is at roughly 115:45 into the recording...
CBS, I thought you were sicker than I am, but I didn't have the stomach to get that far into Gill's talk. It violates professional advice concerning my psychological hygiene.
 

SOC

Senior Member
Messages
7,849
Ive learned a lot from this, what I think for me was interesting to me and for all these years and has not been in my mind, and has to do with people who are doing other kinds of studies - The heterogeneity of Chronic Fatigue Syndrome weve never really attacked. Its so hard to diagnose, it is so hard to characterize. How can you take the group and start splitting them into groups. But it is very possible; there are multiple factors, different factors [in patients] who have what we call Chronic Fatigue Syndrome.

This is THE NIH CFS specialist trained under the preeminent Dr. Strauss!

From Justin:
Just as ridiculous was this statement was in response from someone wondering if there has ever been hypotension recorded in ME patients, even transiently in the acute phase, where florinef might be effective. And Dr. Gill responds: "I can't answer your question." He is claiming he's never heard of hypotension in ME????

Doesn't this "expert" even read the literature? I wonder what this "specialist" is paid to be so knowledgeable about the state of the research? [rhetorical question, btw]

I'm flabbergasted.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
This really pisses me off. :Retro mad::Retro mad::Retro mad:

We can't afford any more CLUELESS and STUPID "experts" calling the shots about CFS. We need to boot these idiots out and get some REAL EXPERTS on board, who actually know what they are doing, and can actually do us some good.

This is just another BIG REASON WHY WE ABSOLUTELY HAVE TO END OUR ASSOCIATION WITH CAA.

If you haven't signed this petition yet, please do so. http://www.change.org/petitions/pet...r-advocacy-representative#?opt_new=t&opt_fb=f

I have passed it along (through a source back east at Harvard) to the Massachusetts CFIDS/ME FM Association, and to Rik Carlson, of the Vermont CFIDS Association.

Please forward it to everyone else you know who can help us meet the goal of 1000 signatures. THANKS.
 

CBS

Senior Member
Messages
1,522
CBS, I thought you were sicker than I am, but I didn't have the stomach to get that far into Gill's talk. It violates professional advice concerning my psychological hygiene.

No kidding. I listened to the talk in three-four sessions, each one a few days apart (not sure why I felt compelled to stick with it but I'm glad that I did). This comment was actually in the Q & A which followed Lo's talk and was conducted by Alter. Alter's comment about first having to decide that a disease was worth studying was a great response - (I think that Gracenote commented on Alter's comment but I didn't recall it following Gill's comment).

As for this being a teaching moment, I think that's a great way to view this. I'll be writing a very respectful letter to Gill with a number of references to the work by Jason.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
As for this being a teaching moment, I think that's a great way to view this. I'll be writing a very respectful letter to Gill with a number of references to the work by Jason.

Good for you... I am glad to hear this. and THANKS SO MUCH for doing it.
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
First of all, CBS, when did you become a bunny under a leaf? Where's the biker kid??

Second of all, sometimes it occurs to me that the CAA is trying to represent too wide a group. Like, maybe they DO want to represent people with idiopathic fatigue of all kinds, and don't want to officially embrace the CCC for this reason. Almost like the Dr. Teitelbaum strategy: if the Teitelbaums of this world want to sell books and services to the widest possible market, it is not in their interest to speak only to people with true CCC ME/CFS; it's just too small a group.

But if this is true, the CAA is placing themselves in an untenable position. They *can't* speak for all fatigued people, a group that just happens to include those of us that fit the CCC, in a way that's effective for the CCC people, or effectively *only* support research that uses clean cohorts that don't include the idiopathically fatigued.
 

CBS

Senior Member
Messages
1,522
First of all, CBS, when did you become a bunny under a leaf? Where's the biker kid??

Second of all, sometimes it occurs to me that the CAA is trying to represent too wide a group. Like, maybe they DO want to represent people with idiopathic fatigue of all kinds, and don't want to officially embrace the CCC for this reason. Almost like the Dr. Teitelbaum strategy: if the Teitelbaums of this world want to sell books and services to the widest possible market, it is not in their interest to speak only to people with true CCC ME/CFS; it's just too small a group.

But if this is true, the CAA is placing themselves in an untenable position. They *can't* speak for all fatigued people, a group that just happens to include those of us that fit the CCC, in a way that's effective for the CCC people, or effectively *only* support research that uses clean cohorts that don't include the idiopathically fatigued.

Hey UT,

I think that you've done quite a nice job of describing the impossible position in which the CAA has wedged itself. They want to do everything (poorly) and that means they can't speak out forcefully for the 25% of us who are the most ill and who, in my opinion, have the greatest potential to shed light on what is at the core of this disease and where some percentage of the other 75% are headed. Nor can they extol the real dangers of GET (I'm not opposed to patient guided activity, or am I ignorant of the many bodily functions that rely upon movement but the PACE Trial explicitly instructs CBT counselors to avoid "encouraging patients to listen to their bod[ies]). I think that the fact that this seems to line right up with the CDC and NIH "party line" is just fine with the feds and unfortunately, it doesn't seem to bother the CAA much either.

I've talked to Dr. Bateman about the make up of her practice. She sees a range of fatigued patients. Some are clearly ME like from the beginning and some are simply chronically fatigued but some percentage are going to go on to develop ME from what first appears to be a chronic fatigued state (little 'c', little 'f'). She says that for her, these patients pose the greatest diagnostic challenge.

As for the bunny under the leaf, you might notice that it appears to be raining (at least in the larger version of the picture) It is an acknowledgment that I seem to be raining on the fuzzy bunny and butterfly parade quite a lot lately (the "dark" notion that retrovirologists might actually be more motivated when it is their butt that is on the line and my having thrown in the towel on the CAA).

SoggyBunny.jpg

I'm looking for a pair of rose colored glasses so that I can bring the biker baby back.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
As for the bunny under the leaf, you might notice that it appears to be raining (at least in the larger version of the picture) It is an acknowledgment that I seem to be raining on the fuzzy bunny and butterfly parade quite a lot lately (the "dark" notion that retrovirologists might actually be more motivated when it is their butt that is on the line and my having thrown in the towel on the CAA).

Thanks for the explanation.

So... the rain in Shane stays mainly on the Leporidae...? :cool::cool::Sign giggle:
 

leela

Senior Member
Messages
3,290
This is just another BIG REASON WHY WE ABSOLUTELY HAVE TO END OUR ASSOCIATION WITH CAA.

I hate to be the person pointing to the wet bunny in the room, (I don't mean you CBS, I just like the image) but I sincerely doubt the CAA gives a crap whether we the patient group is "associated" with them or not.

Some of what they do is good and useful (don't throw things at me), much of their public and political lipservice is damaging.
Rather than spending energy being outraged at *them*, I believe our energies would be better spent respectfully yet forcefully correcting misstatements like the one that is the subject of this thread, grabbing and using "teaching moments" when they arise, and starting or "upregulating" an advocacy group that actually defines, embraces and espouses the needs of the "true ME/CFS" community. Unfortunately most of us who fit that category would love to do it, but can't....

There is no perfect organization. Have you ever noticed that whenever you get more than two (or one!) people in a room trying to DO something, there is eventually conflict? Even on this forum sick people get into screaming matches with each other, calling each other names like 12 yr olds, over differing points of view. There are an unlimited number of points of view.

I digress. My point is, I don't right now see the point in spending precious energy getting twisted knickers over the CAA. Please
(politely) correct me if I'm wrong, but since the majority of their funding appears to come from sources *other* than the patient population, why would they give a bunny's poop about whether we are "associated" with them or not?

I think we would do better finding out how it is one gets lobbyists to Washington. I understand that is the main way anyone gets anything done if dealing with this on the political level.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
I hate to be the person pointing to the wet bunny in the room, (I don't mean you CBS, I just like the image) but I sincerely doubt the CAA gives a crap whether we the patient group is "associated" with them or not.

I digress. My point is, I don't right now see the point in spending precious energy getting twisted knickers over the CAA. Please
(politely) correct me if I'm wrong, but since the majority of their funding appears to come from sources *other* than the patient population, why would they give a bunny's poop about whether we are "associated" with them or not?.

Hey Leela--

Twisted knickers are usually easier to live with than attempting to motivate people to take even the most minimal of political actions. There's always a bunch of naysayers on hand to tell you why it won't work, why it won't be effective, why we shouldn't do it, why it's wrong, why the CAA won't give a crap about it. blahblahblah blah. :rolleyes:

So much easier to just sign a petition and pass it along to others who are willing to do the same. Don't you think? http://www.change.org/petitions/pet...r-advocacy-representative#?opt_new=t&opt_fb=f

PS I guess my knickers don't twist very easily anymore, after all :cool::cool:
 

leela

Senior Member
Messages
3,290
I don't personally count myself as a Naysayer with "limited motivation to take even the most minimal of political actions" --
though I admit to having limited motivation in general :In bed: :eek:

I guess I'm not trying to say Nay so much as recognize that the CAA is what it is, they have their own money, agenda, POV, we don't own any stake in them--do we?

Okay, they claim to represent us, and many are starting to say, "Um, no you don't, thank you very much." And I guess that is good, letting them know that. WHich has been done a lot.

But it still seems obvious to me that the opinion of the patient population is not high on their priority list. And while your personal knickers (and mine) seem to be hugging the correct areas, you may be aware of a whole lot of really ugly knicker-twisting in other threads on this very subject. That is what I was referring to, as well as still wondering why anyone thinks asking for change from an independent organization with its own agenda and financing has a purpose other than venting some frustration?