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

[Dreambirdie]

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.

I am aware enough to not drive my energy into a ditch on roads with too many knicker twisting turns.

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?

This "anyone" doesn't visit the forum as often as I used to. So while I'm here, I thought I'd make myself useful and do a little activism. It sure beats just plain old venting.

On the other hand...creative venting, with an artistic flair, can be a whole lotta fun, but unfortunately fun has become really scarce around here in the past few months. if you know what I mean.

 

[CBS]

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.

Good points. I do think that an important first step is letting others know that there is a different point of view. That dim sense of recognition is what appeared to happen with Dr. Gill (after a couple of decades).

As for the CAA, I really do wonder who they represent. They've described themselves as being by themselves in a bunker (with whom?).

But you are right that in the end, it is making making sure that the patient's perspectives are all on the table is a key point. Alter and Lo seemed to have conveyed to Gill that there were other perspectives.

 

[urbantravels]

And I dunno about Lo, but Alter certainly outranks Gill.

As for the CAA, as long as CNN is calling them up for a quote on things like the release of the PACE study and the boss lady at CAA is not only disastrously missing the boat on an opportunity to explain why PACE is f'ed up, but actually makes a comment that PACE isn't applicable to the US because we don't have such advanced and sophisticated therapies available here...they ARE my personal problem. It's a personal problem for me and for everyone else who has this disease when media perceptions continue to be reinforced that CFS is a disease that people should be able to therapize and exercise their way out of. It's a personal problem for me when an organization is being treated as a spokesperson for me and others with my illness, and that organization fails to utilize that platform effectively.

It's *DEFINITELY* an issue for me personally that ME/CFS is at the bottom of the barrel for research funding, because one of the major differences between diseases that are well-funded and those that aren't is *effective advocacy.* So...no, I don't think a "live and let live" attitude is the one I really want to take.

And it makes me very sad, because I think the CAA provides a lot of things that are worthwhile - not just research money, but educational materials for patients...I like the webinars...good articles like Jennie's series on PEM...and I feel just horrible for Jennie, because I know she is working hard and doing her best and being loyal to her organization.

But I've been involved, before, with organizations that have suffered from bad leadership, yet have been kept going in large part because of the loyalty, devotion, and hard work of the worker bees. I have been one of those worker bees myself, more than once. I used to think my hard work and devotion to a good cause was enough to justify the sacrifices I made to help prop up organizations with faulty leadership. Now that I am no longer capable of hard work, I see it differently. I wish I hadn't wasted a single ounce of my energy on trying to make up for the inadequacies of ineffective bosses/leaders.

 

[justinreilly]

UrbanTravels, I agree totally. I think it is obvious now to everyone that CAA doesn't care what patients think and doesn't represent us, so I will (or plan to at least) stop responding to Cort's defenses of them and trying to give them feedback. I do think it is helpful for us to let it be know to the outside world that CAA doesn't represent us, because otherwise they will think they do and they also probably have some donors who are just clueless and maybe if they find out what CAA is really doing, they won't fund CAA as much.

 

[pine108kell]

Whoa, I just watched this video and had to post something on Fred Gill, MD--not as a personal attack, but for the damage he is doing to the CFS community. Its already been stated, but this was really sad to watch.

The idea in this seminar was to sandwich an experienced clinician (Gill) in between two insightful, thorough research scientists (Alter and Lo). Presumably the clinician would put CFS into a broader perspective so that those interested in XMRV could view this larger picture. This was important.

Unfortunately the man they chose to do this was not up to the job to say the least. Frankly, and I'm not trying to be mean, but Gill was limited. He did not seem knowledgeable, and his intellect appeared to have a fairly low ceiling.

No hypotension or OI in CFS ! He had heard something about the word "mitochondria" being studied in CFS but had nothing to add ! He is a "CFS specialist" but doesn't bother testing for anything beyond standard blood work because anything abnormal that shows up is a "false positive" ! Despite no hypotension or OI, he prescribed florinef to a patient--I think he implies it is a placebo effect for her ! He says doctors should reassure patients because "we know a lot about CFS", yet he didn't say anything that he knew except that CBT and GET are effective !

Gill did not present anything useful about CFS. Zero, zip, notta. Nothing about immune abnormalities. I could go on. If this man was just your local GP, I would (sadly) say that he is probably about as good as you could expect (i.e. he might admit you were really sick and might give you florinef and some other drugs for depression, pain etc). However, this man was supposed to be an experienced CFS clinician that was to enhance the reserach of Lo/Alter in a significant scientific talk ?

I'm done. This post won't change anything. I just could not watch that without venting.

 

[urbantravels]

Send a note to Dennis Mangan.

 

[Cort]

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!

Blaming the CAA for one NIH scientists comment (out of thousands) is in my opinion, unfair. If you're going to blame the Gill's comment for that why not blame them for Dr. Alter's or Dr. Lo's stance on CFS? They spoke at the same meeting. They are both from the federal government. Or blame them for Dr. Mangan's presence? He's at the NIH. Or for Dr. Light's work - which the CAA got off the ground and into the NIH? Or for Wanda Jones presence? All these people have alot more ties to the CAA than this guy does.

If you're going to blame them for the comments of some researcher I've never even heard of - you might as well blame them for the researchers they have interacted with.

You might blame them as well for the NIH funding the Banbury Conferences which brought new researchers into the field.
Blame them for getting Lasker winner and virologist Houghton onto the CFSAC panel and for getting Dr. Lipkin and Dr. Holmberg and for Dr. Singh to agree to serve. Somehow what they said to them worked......

How about the network of research groups from major institutions that had never done CFS research before that the CAA got to sign onto a auto-immune grant? Why not talk to them as well? Somehow what they said to them worked....

I know we'd all love to have more progress but there are alot of researchers out there and I don't think the CAA should be held accountable for one mediocre researcher's opinion.

 

[Cort]

You might as well blame Invest in ME and MERUK and the other UK ME associations for Dr. White and Dr. Wessely. (Why not?) The fact is that institutional attitudes are hard to change no matter how virulent or unvirulent your advocacy is. (By the way, if Gill was trained by Steven Strauss, then good luck for ANYONE getting him to change his opinion...)

Here we have an NIH Workshop coming up that is apparently going to focus entirely on pathophysiology and is being developed by patients and Dr. Jason and CBS's new whipping girl - Dr Vernon.

What happens if the Workshop turns out great? Will Dr Vernon get any acknowledgement or will it be back again to the old Empirical definition slant...which, in my opinon is really, really getting old given that both she and the CAA have publically disavowed it, don't believe it should be used for research and have never used it in their research.

And there's all the work she's done since then....Nobody likes where we're at but there is positive stuff going on and there is the possibility for more...

 

[CBS]

Blaming the CAA for one NIH scientists comment (out of thousands) is unfair. If you're going to blame the Gill's comment for that why not blame them for Dr. Alter's or Dr. Lo's stance on CFS? They spoke at the same meeting. Or blame them for Dr. Mangan's presence? Or for Dr. Light's work - which the CAA got off the ground and into the NIH? Or for Wanda Jones presence? They have alot more ties to the CAA than this guy does.

You might blame them as well for the NIH funding the Banbury Conferences which brought new researchers into the field. Has CBS talked to any other them? or does he just want to illuminate the negative stuff?

If you're going to blame them for the comments of some researcher I've never even heard of - you might as well blame them for the researchers they have interacted with.

You could also blame them for getting Lasker winner and virologist Houghton onto the CFSAC panel and for getting Dr. Lipkin and Dr. Holmberg and for Dr. Singh to agree to serve. Somehow what they said to them worked......

How about the network of research groups from major institutions that had never done CFS research before that the CAA got to sign onto a auto-immune grant? Why not talk to them as well? Somehow what they said to them worked....

There are alot of researchers out there and the CAA cannot be held accountable for one mediocre researcher's opinion.

Gill specifically refers to the CAA and how he is familiar with their work and finds the NIH/CDC party lines to be quite consistent with the CAA. He states that he is very comfortable with the CAA's position on CFS and how to treat it.

I've never heard anything like that out of Lo and Alter. And Light says that he has mixed feelings about even his own exercise testing. He's looking for alternatives that will avoid the need for "destructive testing." Gill on the other hand recommends not listening to your body and pushing on bad days, advising patients to ignore their bodies, get up and do some exercise anyway.

That's just nuts, not to mention, completely out of touch with the reality of ME/CFS and for many of us, it is dangerous!

It's also completely consistent with what we've heard the CAA tell the media. Wish we had some of that good old British CBT and GET. Cort, I'm disappointed, that was weak.

 

[WillowJ]

It's entirely possible that Gill has been told and has read about the possibilities of subgroups and just didn't attend (so it didn't stick in his mind, half-inadvertantly--intentionally not paying attention to non-gov't research but the disregarding of this particular piece of information was not specific to that info) or didn't choose to notice (intentionally disregarded that specific info), and in the latter case it could be a political strategy to treat it as new now that he's forced to take the Disease more seriously.

In any case, I agree that this can be a teachable moment and I also think we should see it as a tiny mark of progress.

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.

Yes! Let's do that!

Very beginning discussions about how to do that took place on the thread below (it starts by discussing donating to members of Congress to get some attention, but moves on to include lobbying), but need to be carried further (someone who is up to it needs to start making phone calls; someone should look into starting a nonprofit and we would need to write bylaws, nominate and elect officers, and so on)
http://forums.aboutmecfs.org/showthread.php?10009-Congress

other political action threads:

Demonstration at the CDC:
http://forums.aboutmecfs.org/showthread.php?10032-Demonstration-at-the-CDC

US Dept of Justice:
http://forums.aboutmecfs.org/showthread.php?10068-U.-S.-Department-of-Justice

Congressional Hearings:
http://forums.aboutmecfs.org/showthread.php?599-Congressional-Oversight-Hearing-ASAP-amp

Public attention stunts:
http://forums.aboutmecfs.org/showthread.php?9779-Advocacy-Thinking-Outside-the-Box

I'm sure there are more but that's what I thought of offhand or found right off.

 

[Cort]

Gill specifically refers to the CAA and how he is familiar with their work and finds the NIH/CDC party lines to be quite consistent with the CAA. He states that he is very comfortable with the CAA's position on CFS and how to treat it.

I've never heard anything like that out of Lo and Alter. And Light says that he has mixed feelings about even his own exercise testing. He's looking for alternatives that will avoid the need for "destructive testing." Gill on the other hand recommends not listening to your body and pushing on bad days, advising patients to ignore their bodies, get up and do some exercise anyway.

That's just nuts, not to mention, completely out of touch with the reality of ME/CFS and for many of us, it is dangerous!

It's also completely consistent with what we've heard the CAA tell the media. Wish we had some of that good old British CBT and GET. Cort, I'm disappointed, that was weak.

I will listen to Gill's presentation - which I ignored.

I'm disappointed too because I didn't hear the CAA saying 'wish we had some of that good old British CBT and GEt' and it's statements like that where I think you've gone too far.

It's also completely consistent with what we've heard the CAA tell the media. Wish we had some of that good old British CBT and GET.

As I noted earlier the CAA's critiques of the PACE trial included:

http://cfids.org/pdf/lancet-analysis.pdf

There are no data in the paper indicating how many subjects might have been excluded on the basis of neurologic or cardiovascular signs or symptoms - suggesting that they may not have applied to many people with CFS

With regard to the severity issue which you bring up again and again the CAA brought up that very issue

It is important to note that study participants had to be able to attend sessions at a hospital or clinic, and therefore more severely ill or homebound patients were not included.

They noted that Dr. Jason's type of pacing was different and that it worked - suggesting that they did not 'want some more of that good old British CBT"

,

it doesn’t completely mirror the type of pacing advocated by many expert CFS physicians or that has been tested formally by Leonard Jason, PhD’s group at DePaul University. Dr. Jason’s latest published study in the Journal of Clinical Psychology found that increasing activity was associated with more improvements for those who started treatment within their energy envelope
compared with those outside of their energy envelope.

They noted that improvement using CBT is also found in infection - and that could have happened with these patients - thereby shifting the emphasis from psychology to biology

The lack of biological explanation for observed improvements reinforces the perception that CFS is mind over matter, even while the paper says it should not. While most people recognize that CBT and GET can be effective in many chronically ill populations as an adjunct to medical care, the news coverage of studies like this one often fails to underscore this point. In several studies of CBT and infection, CBT is shown to work by helping decrease chronic inflammation and tempering the number and activity of harmful immune cell activity. A

In CFS, however, the benefits from CBT are quite limited and modest -even for this younger, rather select population are no different in CFS than for other chronic illnesses

The takeaway message from this study is that the current standard medical care available to people with CFS (by any definition) remains very limited and is relatively ineffective on its own.Structured programs that seek to expand function and reduce symptoms may provide modest benefits when added to standard medical care, but they do not offer complete resolution of symptoms or cure, and the benefits are equivalent to those seen in other studies of chronic illness. Younger, less severely ill and more
recently ill individuals may benefit more, according to the effects seen in this select study population.

I don't see a group that is saying bring on British CBT and I do not think one quote in a media piece is representative of an organizations stance - particularly when they've published several articles on that subject. If you look at what they've written they are actually very close to many other groups....that is - if you take the time to look at what they've written.

You can say "oh, this is Cort again - defending the CAA" but there is an issue of accurate reporting which strike me pretty powerfully. If the CAA had said bring on CBT - use this to cure to CFS - that would be another story. But this and the other piece that demonstrate numerous faults with the study, suggested that it only applied to some patients, was no more effective in CFS than in other illnesses, etc. - well that paints an entirely different and I think far more accurate picture of the CAA's stance on that protocol.

CBS- Gill specifically refers to the CAA and how he is familiar with their work and finds the NIH/CDC party lines to be quite consistent with the CAA. He states that he is very comfortable with the CAA's position on CFS and how to treat it.

Since Dr. Bateman helped produce the CAA's Medscape physician program is she now part of the NIH/CDC/CAA party line? As is Dr. Lapp? The physician fighting to get Ampligen available to CFS patients? Is he in that 'party line' as well?

Now on to the Gill video - which I hoped to avoid.

 

[CBS]

Since Dr. Bateman helped produce the CAA's Medscape physician program is she now part of the NIH/CDC/CAA party line? As is Dr. Lapp? The physician fighting to get Ampligen available to CFS patients? Is he in that 'party line' as well?

Now on to the Gill video - which I hoped to avoid.

Regarding Dr. Bateman's help with the CAA's Medscape physician program, I think she significantly underestimated the care that was needed when advising the general physician population and in program fails in actually guiding physicians in the careful application of pacing. I would hope that her recommendations today would be more specific and careful.

I haven't criticized the CAA's research program (which would account for most of what you point to as being their primary contribution). It is not perfect and it is not as perfect as it is presented to be but many things aren't. Fred Gill is a clinician and clinical advice is where the CAA's actions most directly effect patients today (in spite of all of their efforts on research - which I support and hope to see succeed). I haven't even directly criticized Suzanne Vernon although I have wondered aloud where she is coming from?

I have criticized the CAA's and patient advocacy, their sloppy portrayal of this disease, and have wondered aloud if they have any idea of how serious this disease can be. I have also criticized the CAA's complete failure to make progress on key elements of their mission statement:

Our Mission:
For CFS to be widely understood, diagnosable, curable and preventable.

The CAA's bewildering statements to the media followed up on with clarifications that go no further than their web-page and their mailing list are pathetic and do nothing to help make CFS more widely understood. If anything, they have perpetuated the confusion and that's on Kim McCleary as she's the one talking to the media and she's the one charged with accomplishing their mission.

Enjoy the video. Fred Gill seems quite pleased with almost everything the CAA is doing from public education to clinical advice.

I, on the other hand, refuse to accept what we're being pedaled as anything close to adequate or acceptable.

ETA: keep in mind that Gill is not just some NIH clinician. He is Chief of the Internal Medicine Consultation Service at the NIH and apparently he's THE "go to guy" for all other NIH physicians with CFS patients. His position is being broadcast nationwide (more likely worldwide) to physicians seeking advice on how to treat CFS.

 

[Cort]

Regarding Dr. Bateman's help with the CAA's Medscape physician program, I think she significantly underestimated the care that was needed when advising the general physician population and in program fails in actually guiding physicians in the careful application of pacing. I would hope that her recommendations today would be more specific and careful.

I haven't criticized the CAA's research program (which would account for most of what you point to as being their primary contribution). It is not perfect and it is not as perfect as it is presented to be but many things aren't. Fred Gill is a clinician and clinical advice is where the CAA's actions most directly effect patients today (in spite of all of their efforts on research - which I support and hope to see succeed). I haven't even directly criticized Suzanne Vernon although I have wondered aloud where she is coming from?

I have criticized the CAA's and patient advocacy, their sloppy portrayal of this disease, and have wondered aloud if they have any idea of how serious this disease can be. I have also criticized the CAA's complete failure to make progress on key elements of their mission statement:


The CAA's bewildering statements to the media followed up on with clarifications that go no further than their web-page and their mailing list are pathetic and do nothing to help make CFS more widely understood. If anything, they have perpetuated the confusion and that's on Kim McCleary as she's the one talking to the media and she's the one charged with accomplishing their mission.

Enjoy the video. Fred Gill seems quite pleased with almost everything the CAA is doing from public education to clinical advice.

I, on the other hand, refuse to accept what we're being pedaled as anything close to adequate or acceptable.

Gill specifically refers to the CAA and how he is familiar with their work and finds the NIH/CDC party lines to be quite consistent with the CAA. He states that he is very comfortable with the CAA's position on CFS and how to treat it.

He doesn't state he's comfortable with the CAA's position on CFS.....he said he saw them as a good source AND there's alot there he doesn't agree with as well..That got turned into the CAA having the same party line as the CDC and NIH....???

He is one person - who developed his opinions quite a while ago and obviously isn't up on the current research. I'm not going to ascribe his lack of knowledge or awareness to the CAA's failings....even with their ineffective advocacy....There are plenty of other things to critique them for

I don't think you can say the NIH has a party line for the most part....They are funding studies both on endogenous retroviruses and stress management...on molecular immunology and partner based CBT...they are all over the map...the one area they have a party line on is the one that upsets you and I, I believe, the most - their radical underfunding of this disorder...