GIll/Alter/Lo Powerpoint Presentations "Is there a Virus"

[Cort]

Judging from this set of slides it looks like the much anticipated presentation by Lo/Alter
"Is there a Virus in ME/CFS?"

MISTAKE! - the slide below are by Gill. The Alter/Lo slides were not up at the time this post was created - is going to be a severe disappointment. Not only do they appear to pooh-pooh any idea of viral engagement they end by say cognitive behavioral therapy is the best thing for CFS!

Its basically looks like a talk on 'what is CFS' - and I can't fathom why they feel qualified to give it. Its a very generic presentation......Its a head-shaker for sure...

I don't see anything on XMRV or MLV's

These are the slides by Fred Gill - he, along with Alter/Lo are the presenters.

Someone sent me this.

I have pasted the link to Gill's Powerpoint presentation for this talk below. I recommend breathing deeply before going through the slides.

"Chronic Fatigue Syndrome: Is there a virus?" given by Drs. Shyh-Ching Lo (FDA), Fred Gill (CC), and Harvey Alter (CC).

Date: Tuesday, February 22nd, 2011
Place: On Campus - Bldg. 50, Ground Floor Auditorium
Time: 4:00 – 6:00 p.m.
http://demystifyingmedicine.od.nih.gov/

http://demystifyingmedicine.od.nih.gov/DM11/02-22-2011/2011-02-22-Gill.htm

 

[leaves]

Ah these seem not to be alters slides..

 

[HopeNHealing]

Yikes! This is a terrible presentation! I don't know where to even begin with discussing the flaws. sigh. Hopefully someday they'll see the light and write a better presentation that I can get excited about. This is not it! Thanks for posting the link Cort - it is always good to see what these guys are thinking.

 

[Mark]

Just received these links as corrections (thanks RRM!) - are these the same thing or not?

Lo slides are here: http://demystifyingmedicine.od.nih.g...1-02-22-Lo.htm
Alter slides are here: http://demystifyingmedicine.od.nih.g...2-%20Alter.htm

 

[Mark]

In this...

http://demystifyingmedicine.od.nih.g...02-22-Gill.htm

...slide 10 is a classic! All those revisions and working case definitions were - apparently - "to help differentiate CFS from other causes of chronic fatigue".

 

[alex3619]

Hi, I dont know if the presentations listed in post 4 and 5 are current. However, the Lo/Alter appear to be just a summary, whereas Gill appears to support the biopsychosocial model. Bye, Alex

 

[acer2000]

Those appear to be 3 different slide decks, probably one for each person presenting. I agree Dr. Gill's deck is pretty weak. But unfortunately, there are no specific treatments for CFS at this point that doctors can prescribe. Thats the whole problem - no cause known, no specific treatments. :-(

 

[omerbasket]

I think that these are Gill's slides and Lo and Alter have nothing to do with them.
Anyway, those slides are like William Reeves wrote them himself.
They are terrible! And the 43rd slide is insulting.

 

[Megan]

They look current to me. Lo has 22nd Feb 2011 on the front of his.

I looked at these with trepidation after seeing the above posts. I was not really dissapointed in the Lo Alter ones, though there looks to be nothing new. Seems to me like they are only talking about contamination because there is no question they have to answer those accusations but are still arguing against it. Only thing I was surprised about here was that they didn't mention that they had tried the IAP test on their samples which they stated clearly at the BPAC meeting in December. But then its hard to judge any of this if we havent heard the commentary with the slides.

As for the Gill one, yes thats pretty bad. Find it really contradictory that he goes on about the CDC 2005 definition and that it was necessary identify all the exclusionsary criteria (slides 14-16), then under diagnosis (p29-30) they recommend limited diagnostic testing! How then to rule out the exclusionary criteria? Sounds like a design for not diagnosing people properly.

 

[Snow Leopard]

Is anyone here attending? Can they challenge Gill on the fact that CBT has been proven to have very limited benefits in both the PACE study, the Belgium study which found that levels of employment decreased at the conclusion of the CBT/GET programme. As well as the Nijmegen study, which found that activity levels were not correlated with reported improvements on fatigue questionnaires.


Then point out the CDC and Dr Jason studys which report economic costs between 25-50 billion dollars per year, depending on the tightness of the clinical definition. Then point out that compared to economic costs, CFS has the lowest amount of research funding by the NIH compared to any other disease.

With no treatments that are close to curative, and little funding to find treatments, what is the most logical outcome?

 

[SDP]

This thread is highly confusing and, it seems, unneccessarily concerning. May I suggest that if, as appears the case, the initial posts reflect a misinterpretation of the slides (or their authorship), the thread be edited/closed?

 

[eric_s]

Yes, please, be careful!! We have only one heart... After reading the first posts i got the impression Lo and Alter have turned around 180 degress and that was no fun...

 

[eric_s]

I have now looked through all the slides and i think the Alter and Lo ones are good. Nothing new, i think, but could we really expect that? It's a shame they don't seem to tell us more about what they have done in the meantime, but it looks as if they want to complete phase III of the BWG before making any official decision what's real and what's not.

Gill is not very good, but what the h..., if Alter and Lo confirm MRV he can pack this stuff up and will know better, so i don't worry too much. We only have to hope that they will do that and so far it looks as if they still stand with what they have published in PNAS, so it's ok, i think.

What i don't get is why he says CBT/GET is proven and then does not mention that Montoya has studies that prove the effectiveness of antivirals. Why should the CBT/GET studies be worth more? I don't see that they are better. There are many weakpoints in them and there are also contradicting studies about CBT/GET.

 

[urbantravels]

Cort, for pity's sake, edit your original post! It's been a bad enough week with the PACE Trial nonsense all over the place without announcing to everyone that Alter and Lo have abandoned the field. My poor heart can't take it.

 

[urbantravels]

Is anyone here attending? Can they challenge Gill on the fact that CBT has been proven to have very limited benefits in both the PACE study, the Belgium study which found that levels of employment decreased at the conclusion of the CBT/GET programme. As well as the Nijmegen study, which found that activity levels were not correlated with reported improvements on fatigue questionnaires.


Then point out the CDC and Dr Jason studys which report economic costs between 25-50 billion dollars per year, depending on the tightness of the clinical definition. Then point out that compared to economic costs, CFS has the lowest amount of research funding by the NIH compared to any other disease.

With no treatments that are close to curative, and little funding to find treatments, what is the most logical outcome?

Snow Leopard - why not just email that to Gill? No harm in getting it in front of him before the presentation,

 

[Esther12]

I've only looked at the slides aruschima posted (ta), but I'm a bit disappointed that there seems to be no news of progress. It's been ages since the PNAS study was published, and I thought we might get some incling as to what has happened since then. I guess he's learnt not to put unpublished info on slides!

 

[urbantravels]

This presentation isn't designed for us, who are already up to speed on everything that's been published: it's to bring others who haven't been paying any attention at all up to speed.

And yeah, I'd be willling to bet that Harvey Alter will never, ever, ever again put anything relating to the results of unpublished research on a Powerpoint slide!

The stuff in the Gill presentation isn't *all* as bad as I'd feared, but a few things really offend me - especially the insistence that 19th century "neurasthenia" was the same thing as CFS. I suppose he must have been a Straus disciple to still be dispensing that tired old rubbish. Not only does that minimize the disease/lend ammunition to those who like to think it's a disease of stress and inability to deal with the modern condition, oh my, (swoons) (this puts you gentlemen in the same category with us ladies whose corsets are too tight) - but it sends a not-so-subtle message that this is NOT an emerging disease and thus probably NOT a new infectious disease.

Closing with the Charlotte Perkins Gilman quote is especially egregious. If his point is that CFS patients should still find ways to be engaged with the world and find productive things to do within our abilities, I agree - up to the point where it is recognized that our abilities are very limited and do not expand as easily or as much as he suggests. But it seems to me more a broad hint about CFS patients having a fear and avoidance of activity - a very unpleasant echo of the PACE propaganda we are currently being deluged with.

 

[eric_s]

I guess he's learnt not to put unpublished info on slides!

It could also be that back then he wanted to do that and now he wants to wait for the Blood Working Group to announce things.

 

[Cort]

This thread is highly confusing and, it seems, unneccessarily concerning. May I suggest that if, as appears the case, the initial posts reflect a misinterpretation of the slides (or their authorship), the thread be edited/closed?

Whoops, yes, the initial post is incorrect. I went by the message that was given to me and that was incorrect. ...My apologies. The Lo and Alter presentations look very interesting..

 

[SOC]

The stuff in the Gill presentation isn't *all* as bad as I'd feared, but a few things really offend me - especially the insistence that 19th century "neurasthenia" was the same thing as CFS. I suppose he must have been a Straus disciple to still be dispensing that tired old rubbish. Not only does that minimize the disease/lend ammunition to those who like to think it's a disease of stress and inability to deal with the modern condition, oh my, (swoons) (this puts you gentlemen in the same category with us ladies whose corsets are too tight) - but it sends a not-so-subtle message that this is NOT an emerging disease and thus probably NOT a new infectious disease.

[my bolding]

My eternal thanks to Dr Gill! If only I had known 6 years ago that loosening my corset and coping with the (nonexistent) stress in my life would have solved my health problems! I must call my daughter at college immediately and tell her to lose the compression socks and TAKE OFF THAT CORSET.

To think I wasted all that money on Valcyte (which is improving my health despite my "corset").

I'm tempted to buy a corset just to carry it down to the demonstration at the CDC, swing it in the air and yell, "Look! No corset and I'm STILL sick!"

Or maybe we just need to designate the CDC as our metaphorical corset -- keeping us tightly constricted in increasingly poor health. (Ok, so my field is the physical sciences, not the arts.... )