Comments on Lombardi, et al in Science

[Impish]

Impish,

I don't have the time or energy to respond to this in detail, so I'll just make a few points:

1. The products with alcohol as a preservative are dosed in DROPS. The entire 2 oz bottle contains about 1/3 oz of alcohol. The bottle will last for many weeks. Using a form of alcohol as a preservative is common in homeopathics.

2. The Whittemores' stock in VIP Dx is in trust. They have no way to gain financially from VIP Dx.

3. WPI needs funds to continue research. A preliminary connection to autism has been found. The autism community is probably a much richer source of contributions than the CFS community. I'm guessing that the talks Dr. M is giving are intended to generate funds for more thorough research.

4. The Science paper included authors from the Cleveland Clinic and the National Cancer Institute, and was subject to rigorous peer review. Are CC, NCI, and the Science editors also scamming us?

I can understand going looking for funds. That is fair enough. I can understand wanting to present results (although I question the forum). Given what has happened up to now wouldn't a peer reviewed journal make more sense?

What I can't understand is linking your self to a snake oil sales organization like Bio Ray. At this point that is a stupid stupid thing to do.

 

[akrasia]

Elective Bedfellows

Impish, it is self evident to you, apparently, that Bio Ray is a dastardly bunch. I see a business selling Traditional Chinese Medical formulations and other alternative remedies. Searching using VIP DX Bio Ray on google brought up as the first link, drum roll please, ERV, an old friend of this Forum, at Science Blogs, who "coincidentally" seems to be preoccupied with the same issue as you are.

Until I have firm evidence to the contrary, investigating gut issues in Autism, financed by this company seems kosher to me. I don't believe in guilt merely by association. If you are hanging around ERV, I would suggest a tetanus shot.

 

[Esther12]

What are you talking about? Here is the link to the press release from VipDX which is owned by the Whittmores http://www.vipdx.com/press/. They are working with BioRay. Here is a link to BioRay's web site. http://www.bioraynaturaldetox.com

They have one product that contains 18% alcohol that they suggest for kids. They have another one with recommended dosing levels for kids under 1 year old that contains silver as well as wormwood. Wormwood is the active ingredent in absinthe. Whether or not is actually causes one to see green fairies is up for debate but again not something I would be giving my children.

Selling unproven herbal formulas to vulnerable people looking for a cure for something is the very definition of a snake oil salesmen.

I agree with everything Robin said but in the meantime, assuming that WPI is right and not scamming us, they are doing HUGE damage to their credibility by associating themselves with such people. Since they are acting as the face of CFS (or trying to) and getting us to rally to their cause they ABSOLUTELY need to act in an ethical and responsible manner. Associating with BioRay is not how to do this. The more I think about it the more angry I get.

I would love it if someone who is in direct contact with them here would ask them that the heck they are thinking doing this?

I understand your concern about some of the groups the WPI is associating with. But we've seen how mainstream medicine has treated CFS for a long time - I'm not terribly confident about identifying who the true quacks are anymore. You can find craziness from all manner of medical institutions. In PR terms, I think it would be best for the WPI to be more careful about these things, but it's also possible that they have good reason to think this supplement will be useful, and think that the other stuff being sold is no worse than a lot of the more respectable nonsense out there. I really don't know enough to comment properly though.

I think Lesley's points are good too (as I read your post I though 'I bet the alcoholoic product suggests a tine dosage.').

 

[Orla]

Functional Symptoms and Jon Stone

it appears as the wider patient community start to get to grips with the linguistic mechanisms of diagnosi, the 'THEY' start a new ELITE dictionary.

Yes fly. Here is another wonderful little piece by Stone and colleagues (aren't I generous today? )

What should we say to patients with symptoms unexplained by disease? The “number needed to offend”
Jon Stone,Wojtek Wojcik, Daniel Durrance, Alan Carson, Steff Lewis, Lesley MacKenzie, Charles P Warlow, Michael Sharpe
http://www.bmj.com/cgi/reprint/325/7378/1449


...Many diagnostic labels that are used for symptoms unexplained by disease have the potential to offend patients. Although “medically unexplained” is scientifically neutral, it had surprisingly negative connotations for patients. Conversely, although doctors may think the term “functional” is pejorative, patients did not perceive it as such. As expected, “hysterical” had such bad connotations that its continued use is hard to justify, although it is the only term in this list that specifically excludes malingering.



........We call for the rehabilitation of “functional” as a useful and acceptable diagnosis for physical symptoms unexplained by disease.

 

[Impish]

Impish, it is self evident to you, apparently, that Bio Ray is a dastardly bunch. I see a business selling Traditional Chinese Medical formulations and other alternative remedies. Searching using VIP DX Bio Ray on google brought up as the first link, drum roll please, ERV, an old friend of this Forum, at Science Blogs, who "coincidentally" seems to be preoccupied with the same issue as you are.

Until I have firm evidence to the contrary, investigating gut issues in Autism, financed by this company seems kosher to me. I don't believe in guilt merely by association. If you are hanging around ERV, I would suggest a tetanus shot.

I think we are going to have to agree to disagree on this one. I don't think issuing press releases supporting unproven medicines is a good idea when you are already having credability issues with mainstream scientists. I am guessing that there are very few ways quicker to dry up scientific funding than associating yourself with a company like this. Maybe the WPI is considering Dr. Timothy Ray, the chief scientist at BioRay, to replace Dr. Peterson.

He does have experience with Biological Terrain Analysis, Complex German Homeopathy, The Performance 2001, Mayr Cure and Pleomorphism and Sanum Therapy. I am sure those qualify him to be creating cures for CFS as well as Autism.

I really really hope I am wrong but I suspect we will see some BioRay cures for CFS shortly...

In the meantime sorry for distracting from the main task at hand. The letters in response from the groups that couldn't find XMRV are very poor and should have their short comings pointed out.

It is just so disappointing to see the WPI making mistakes like this.

 

[cfs since 1998]

I don't think issuing press releases supporting unproven medicines is a good idea when you are already having credability issues with mainstream scientists. I am guessing that there are very few ways quicker to dry up scientific funding than associating yourself with a company like this.

Uh, did I miss the memo? When did this happen? Source?

Maybe the WPI is considering Dr. Timothy Ray, the chief scientist at BioRay, to replace Dr. Peterson.

Or maybe you have an overactive imagination.

 

[Mithriel]

Although medically unexplained is scientifically neutral, it had surprisingly negative connotations for patients.

While the phrase may be scientifically neutral, in practice the term is taken by doctors to mean no medical explanation is ever going to be found because no medical problem exists except in the mind of the patient.

The consequence to the patient of this diagnosis is not good and certainly not neutral so their judgement of the term is not a surprise but is a proper and justified response.

Mithriel

 

[Impish]

http://www.vipdx.com/press/

 

[cfs since 1998]

http://www.vipdx.com/press/

VIP Dx is not WPI. They are completley and totally separate.

 

[Impish]

Sorry but you are wrong. VipDx is owned by the Whittmores and Judy is a VP.

 

[garcia]

Sorry but you are wrong. VipDx is owned by the Whittmores and Judy is a VP.

Can you please stop trolling this thread?

 

[Esther12]

Can you please stop trolling this thread?

@ Impish - it could be worth starting a new thread about VIP's press release. Personally, I'm not that concerned by it though. It seems really odd to me that the WPI has moved on to autism at this point, but there you go.

 

[Lesley]

Sorry but you are wrong. VipDx is owned by the Whittmores and Judy is a VP.

As I said in my previous post, the Whittemores' ownership interest in VIP Dx was placed in trust for the benefit of WPI. This was discussed ad nauseam on this forum in January. Here's the press release: http://www.wpinstitute.org/news/docs/WPI_pressrel_011410.pdf

 

[Gerwyn]

Sorry but you are wrong. VipDx is owned by the Whittmores and Judy is a VP.

no you have no idea what you are talking about

 

[flybro]

Cheers Orla,

This the link to the pdf I mentioned earlier http://www.acnr.co.uk/pdfs/volume4issue6/v4i6reviewfunctional.pdf

its titled Functional Symptoms in Neurology: Diagnosis and Management and Stone is a pictured contributor.

along with Professor Michael Sharpe

and wesley is referenced in the refrences

it was printed/published
ACNR VOLUME 4 NUMBER 6 JANUARY/FEBRUARY 2005

 

[Adam]

They have one product that contains 18% alcohol that they suggest for kids.

Impish: Can I have some please?

BTW - sorry, but you are annoying people. Please go to the nearest exit where you will be escorted from the premises by a Moderator.

BYEEEEEEE

 

[kurt]

Impish: Can I have some please?

BTW - sorry, but you are annoying people. Please go to the nearest exit where you will be escorted from the premises by a Moderator.

BYEEEEEEE

Adam is not a moderator, but he plays one on TV... (that is a joke)

Please everyone show some tolerance. Innocent until proven guilty. If someone breaks forum rules then let the MODs know and we will act without prejudice. If you don't like someone's opinions you are free to post the reasons, and disagree all day long. But no personal insults no matter how subtle and clever. Just remember some forum members might not like your opinions either. Not liking someone's views, or believing they are incorrect, is a basis for making posts, but not a basis for insults and certainly not for banning someone.

 

[cfs since 1998]

Adam is not a moderator, but he plays one on TV... (that is a joke)

Please everyone show some tolerance. Innocent until proven guilty. If someone breaks forum rules then let the MODs know and we will act without prejudice. If you don't like someone's opinions you are free to post the reasons, and disagree all day long. But no personal insults no matter how subtle and clever. Just remember some forum members might not like your opinions either. Not liking someone's views, or believing they are incorrect, is a basis for making posts, but not a basis for banning someone.

Dude the person is a troll. Even their username says so!

impish
A adjective
1 impish, implike, mischievous, pixilated, prankish, puckish
naughtily or annoyingly playful; "teasing and worrying with impish laughter"

 

[Dolphin]

If someone lets me know how to do it in idiot proof language that my legendary computer skills can cope with i will try when I have led the oppositions drivel in more detail.

Go to the letter in question i.e. one of:
http://www.sciencemag.org/cgi/content/full/328/5980/825-a

http://www.sciencemag.org/cgi/content/full/328/5980/825-b

http://www.sciencemag.org/cgi/content/full/328/5980/825-c

http://www.sciencemag.org/cgi/content/full/328/5980/825-d

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[Dolphin]

They write: Although this cytokine profile may be associated with a possible viral infection (while by no means being necessarily specific), it has not been reported previously as such in patients with CFS. The cytokine abnormalities in CFS patients are notoriously inconsistent (9), with some studies reporting increased (10), not different (11), or even lower (12) cytokine responses. Thus it is not possible to use "immunological abnormalities" as a selection criterion.

starryeyes wrote: http://www.forums.aboutmecfs.org/sh...et-al-in-Science&p=80763&viewfull=1#post80763
(Sorry starryeyes, it's an awkward one to quote fully)

This probably comes under starryeyes' comments but reference 12 is:

12. Y. Jammes, J. G. Steinberg, S. Delliaux, F. Brgeon, Chronic fatigue syndrome combines increased exercise-induced oxidative stress and reduced cytokine and Hsp responses. J. Intern. Med. 266, 196 (2009).

i.e. an exercise provocation study.
Saying people with CFS had reduced cytokine responses following an exercise test is different from simply saying they have lower cytokine responses.

I think it is true to say that there are more immunological abnormalities in CFS patients (on average). The WPI clarification that not all patients had immunological abnormalities is useful. The description in the first WPI was a bit odd for a science journal paper and my guess was that it was written by Dan Peterson who might be more used to talking about his patients in other situations.