Time for the Big Talk. How's the CAA doing?

[gracenote]

If you click on the last column, it will arrange all the numbers from most to least.

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

The highest amount for a disease is HIV/AIDS $3,184.

Tobacco $360
Smoking and Health $358
Lung Cancer $188.

Lyme Disease (I don't know if they are researching Chronic Lyme Disease) $26.

Fibromyalgia $12.

Chronic Fatigue Syndrome $5.

 

[flex]

Justin, if the CAA is making change relative to Forum requests then your voice is not being drowned out..

[video=youtube;6tE5hyUjcd4]http://www.youtube.com/watch?v=6tE5hyUjcd4[/video]

 

[Dolphin]

If you click on the last column, it will arrange all the numbers from most to least.

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

The highest amount for a disease is HIV/AIDS $3,184.

Tobacco $360
Smoking and Health $358
Lung Cancer $188.

Lyme Disease (I don't know if they are researching Chronic Lyme Disease) $26.

Fibromyalgia $12.

Chronic Fatigue Syndrome $5.

Thanks.
Also CFS is one of only down as $0 million for American Recovery & Reinvestment Act (ARRA) in 2009 (I'm sure this has been noted before somewhere). Don't know where that is on $0-$499,999 - anyone know?
FMS got $2m under that.

For 2010, CFS and FMS are currently blank for that money but so are 24 others. Don't know if that will change by the end of the year.

 

[Dolphin]

Dr Lapp slide extract:

Worst case: couch‐ or bed‐bound
Evidence: you can and must be active

Here is a quick comment from a summary of an exercise study:

http://www.meresearch.org.uk/research/projects/malaise.html

Looking at the larger picture, much of the current thinking about the role of exercise in CFS and ME is driven by models of deconditioning, and the notion that regular exercise will be beneficial. And overall that is true; regular exercise is good for us all. But we already know that too vigorous exercise or activity can triggers post-exertional symptoms in most people with ME/CFS. And there is some evidence that these patients respond to an exercise challenge with an enhanced complement activation, increased oxidative stress, and an exaggeration of resting differences in gene expression profile in peripheral blood mononuclear cells. So, it is entirely possible, perhaps even likely, that over-exercising causes harm, simply because something is organically wrong with muscle metabolism. What value exercise programmes in these circumstances?

 

[Dolphin]

I think this is crucial point - nobody is saying that you can exercise your way out of this or engage in vigorous exercise.

CFS activity programs begin with
exercises that help with ADLs and then move on to strengthening and conditioning
exercises. Examples are: hand stretches, sitting and standing, picking up and grasping
objects, light stretching and strengthening exercises using only body weight as resistance.
When these are mastered and well‐tolerated, stretch bands and light weights can be
added, then aerobic activities like walking, biking, or pool therapy.

Two points.

Firstly, it doesn't say that people generally reach an activity/exercise plateau.

Also there is no evidence that these exercises allow people to do activities of daily living (ADLs) who couldn't do them before. It's basically speculation. One can't necessarily extrapolate from healthy people. For severely affected people, stretching exercises might be like a yoga session (say) for somebody a bit less severely affected with ME/CFS. Surveys show that plenty of people with ME can have problems with yoga. For example, in the ME Association survey, of 812 people who reported trying yoga, 20.8% reported being made slightly worse and a further 7.3% reported being made much worse http://www.meassociation.org.uk/images/stories/2010_survey_report_lo-res.pdf .

I think there is a reasonable chance such people (people struggling to do ADLs who do extra exercises) might develop various types of repetitive strain problems. I developed all sorts of such problems 17 years ago. The body isn't behaving normally.

One of the main advantages of this slide show is that one can see Dr. Lapp's input into the CME (or at least the bits he strongly agrees with).

So just like with Dr. Bateman, I don't think Dr. Lapp should be involved in preparing management programs on ME/CFS - unless he is heavily outnumbered by people who disagree with him.

 

[Roy S]

Jennie,

You've said that the CAA is spending substantial resources on XMRV. Exactly what does that mean?

Cort has stated that the CAA is funding a study on XMRV. Is that right, or is Glaxo Smith Kline funding it, or both? Is GSK paying for the samples from the CAA's Biobank?

20 years ago the CAA would have offered funding to the WPI after the science paper was published and most likely before that. Has any funding been offered?

I will ask you again if Kim McCleary has ever offered to help the WPI lobby on Capitol Hill.

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[jspotila]

What the Association is doing on XMRV: http://cfids.org/cfidslink/2010/010607.asp#3r

What the Association is doing re: federal affairs: http://cfids.org/cfidslink/2010/010607.asp#1a

Collaborating with other organizations: http://cfids.org/cfidslink/2010/010607.asp#4e

Priorities in the Association's research program: http://cfids.org/cfidslink/2010/010607.asp#1r

For most of the Association's history, we have not "offered" funding to any researcher without receiving an application, and having applications peer-reviewed by a Scientific Advisory Committee. Regarding denying applications for XMRV research: http://cfids.org/cfidslink/2010/010607.asp#2r

Regarding the current collaboration involving the SolveCFS BioBank, I am bound by the Association's confidentiality agreements, so I can only refer you to the FAQ for the BioBank: http://cfids.org/cfidslink/2010/040701.asp

 

[justinreilly]

Keep Going CAA!!

Vernon did a good job in telling it like it is about the CDC XMRV study. McCleary also pointed out that the fact CDC studied only three sudden onset patients was a red flag. Now CAA has to keep it up.

Now Vernon still has to come out strongly against the Reeves criteria of which she was an author. This is crucial now. CDC is firing everything the can at us. We need CAA to really let them have it (the truth) now. Jenny Spotila said at one point on the CAA thread something to the effect of "what're we supposed to do, try to interest the media which is totally uninterested in us?" Well now interest is brewing and will let loose once the FDA study comes out. CAA has to take advantage of this and totally expose our oppressors! Absolutely no excuses now!

 

[Otis]

Time time is now

Agree Justin that the CAA has a big help with this CDC paper and that it's now or never. We absolutely need all hands on deck.

The latest XMRV web page from the CDC is infuriating. They're declaring game over, no XMRV, end of story.

Please see this if your blood pressure isn't too high.

The original Alter paper needs to see the light of day or we may get strung along circa 1991.

 

[Jerry S]

The latest XMRV web page from the CDC is infuriating. They're declaring game over, no XMRV, end of story.

It really gets to me also, Otis. Their assumed tone of authority is maddening. They cited their own tainted "research" as if it were gospel. They have no respect for science -- only authority.

 

[shiso]

Agree Justin that the CAA has a big help with this CDC paper and that it's now or never. We absolutely need all hands on deck.

The latest XMRV web page from the CDC is infuriating. They're declaring game over, no XMRV, end of story.

Please see this if your blood pressure isn't too high.

The original Alter paper needs to see the light of day or we may get strung along circa 1991.

Just read the CDC page. I agree with Otis's and Jerry's assessments - it's outrageous how they put their whitewash study in the most credible and conclusive light (at the same time covering their a**es by subtle disclaimers saying there might be factors why others may come to other conclusions). They know how respected they are, and they know how to maximize on it.

The fact remains that the already more than skeptical medical establishment nationwide and worldwide look to CDC for authority and guidance on "controversial" areas like XMRV and ME/CFS and they have no incentive not to believe and go along with what the CDC says, since we're an inconvenient patient population. We, on the other hand, desperately need competent, devoted and credible people on our side to counter CDC's agenda when it comes to this disease.

I'm posting this on this thread a) to again thank Dr. Vernon for delivering her swift criticism of the CDC study; and b) because I think CAA has been showing more responsiveness to the patient community and venturing out of their comfort zone recently, even in the relatively short time I've been sick, and I hope they will continue to be as aggressive as possible and sensitive to politics and timing - especially at this critical juncture when we have the attention of the government, the AABB, and media (at least WSJ - a good one if you ask me) via XMRV.

Who knows how long the medical research funding gatekeepers will stay interested (as it is, they're more interested in XMRV's possible role in more politically lucrative diseases than ME/CFS), before they turn their backs again?

 

[Jerry S]

Excellent comment, shiso.

 

[Dolphin]

Just read the CDC page. I agree with Otis's and Jerry's assessments - it's outrageous how they put their whitewash study in the most credible and conclusive light (at the same time covering their a**es by subtle disclaimers saying there might be factors why others may come to other conclusions). They know how respected they are, and they know how to maximize on it.

The fact remains that the already more than skeptical medical establishment nationwide and worldwide look to CDC for authority and guidance on "controversial" areas like XMRV and ME/CFS and they have no incentive not to believe and go along with what the CDC says, since we're an inconvenient patient population. We, on the other hand, desperately need competent, devoted and credible people on our side to counter CDC's agenda when it comes to this disease.

And given the joke definition they used to define patients in this study, they "don't have a leg to stand on".

There's a petition against the empiric criteria for CFS (Reeves, 2005) that the CDC are using for research at: http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/ . It was also used for the two childhood abuse studies and other studies in recent years.

 

[Jerry S]

Yet, the CDC claims on it's website http://www.cdc.gov/ncidod/dhqp/bp_xmrv_overview.html that the patients met 1994 Fukuda.

To evaluate a possible association of XMRV with CFS, the CDC-led team tested blood specimens from 51 persons with CFS and 56 healthy persons. The specimens were from previous study groups: 1) people who had taken part in population-based studies of CFS in Wichita, Kansas, and in Georgia, and 2) patients in Georgia who had been referred by physicians to a registry of fatiguing illness. Patients from both groups had CFS that met the criteria of the 1994 International CFS Research Case Definition, which was established to help distinguish CFS from other illnesses that cause fatigue.

This is not case. These are Reeves' "empirical definition" patients. Their own paper admits as much.

 

[Dolphin]

They claim they are simply operationalizing the 1994 definition.
That is, explicitly say what the cut-off points are on specific questionnaires.

However, if one looks at how much the prevalence rate from their random number studies jumped: 235 per 100,000 to 2540 per 100,000 (10.8 times the amount) using similar methodology, one can see that the empiric criteria are bringing in lots of new people. And Leonard Jason has done research which shows they're not even very sensitive i.e. not all of the group in the previous study would get in with the new criteria.

 

[dannybex]

It's interesting, and quite reassuring (to me anyway) that no major news organization (except the WSJ blog) has reported the CDC's findings. A google news search turns up the WSJ and a few other blogs...that's it.

Their "study" will be toast as the other positive studies come in...within the next few months.

 

[VillageLife]

right now )sat 3rd july)
http://www.nature.com/ cfs still the main headlines on nature journal, (nature is huge!)

http://www.sciencemag.org/ still main page of science, if you scroll just under the main title, theres dr mikovits.

 

[taniaaust1]

from the CDC site on XMRV and CFS

"About the Study

This paper by CDC scientists and colleagues is the first U.S. report on XMRV and CFS since the October 2009 publication in Science that suggested a possible link between this virus and CFS. "

Dont you just love how they report they are the first U.S. report since the original paper... seeing the other studies got held, just so they could possibly post theirs first and go about saying so. It's screaming of conspiratory. I actually thought that this was all going to happen and that the CDC study was going to be put out first as soon as i heard about the other studies being held.

Somewhere in high places, they want to mislead the public as far as CFS is concerned (just like they've always done)

 

[justinreilly]

Nice to see in the latest CFIDS Link email newsletter that CAA is trying to get CDC's lies re the XMRV and ME off of CDC webpage. Please refuse to stand for these lies!