CFS Untied

Broken Reward Response–Is This Science?

Posted on April 24, 2012 by Khaly

“There was a girl, and her uncle sold her”, wrote Mr. Ibis in his perfect copperplate handwriting. “That is the tale; the rest is detail.” – Neil Gaiman, American Gods.

There was an illness and the CDC hid it in plain sight.

I’d like to propose that the latest news release to come out of the CDC regarding CFS is complete and utter horse dookey. Of course, that’s nothing new, but bear with me for a minute.

Today, Tuesday, April 24 of 2012 (well into our third decade of finely-crafted nonsense at the hands of the CDC), we were treated to breaking news. The CDC has announced, via multiple news sources, that people with CFS may have a broken reward response, as indicated by a lower level of basal ganglia activity when promised money for winning card-game hands.

http://www.sciencedaily.com/releases/2012/04/120424142109.htm

Let’s pick this apart, shall we?

First, in the opening paragraph, the CDC has once again introduced us to the world at large as possibly nonexistent:

Although researchers estimate that more than 1 million Americans are affected by this condition, the cause for chronic fatigue syndrome, a definitive way to diagnose it, and even its very existence remain in question.

Since these words appear in virtually every publication’s version of the news release, verbatim, we can probably safely believe that these words originated with the CDC. At once we realize that nothing has changed and the propaganda machine continues to roll.

The CDC is still busily measuring things that don’t need to be measured, just so they can point to their efforts and say, “See? We are HELPING!” Which is, of course, a crock of dung. They are measuring fatigue. We all know that this is not fatigue. This is nothing like fatigue. We’ve been telling the CDC that this is not fatigue for decades. They know this. They have known this all along, ever since Peterson and Cheney presented them with evidence of catastrophic biological distress, which they have studiously ignored in blatant and well-honed disinterest.

This study was brought to us courtesy of Elizabeth Unger and James Jones.

Elizabeth Unger is the branch chief of the CFS branch of the CDC. We got a pretty good feel for her stance on CFS at CFSAC October 2010. Her idea is to approach this as a mind/body illness, which would be more okay if it weren’t evident that the CDC is on a multiyear plan to phase “body” out of that equation. She’d like to further broaden the definition of CFS. She stands behind all of the crappy papers that the CDC has already produced about CFS, including childhood abuse and poor illness beliefs. For a better look at the inner workings of Dr. Unger’s mind, take a look at this blog: “Do We Have Standards? Of Course We Do!”

James Jones, of course, is the CDC virologist who has been the master architect behind “allostatic stress load” concepts…another buzz phrase similar to “biopsychosocial”, designed to appear to incorporate a biological basis for illness while blatantly blaming it on psyche.

Researchers recruited 18(!) patients with chronic fatigue syndrome and 41 controls. Since we don’t have any clear idea on what definition was used (if any, since Dr. Unger feels sticking with a definition is “limiting”), we don’t know if any of the chronic fatigue syndrome patients actually have CFS. However, the patients with “CFS” showed to have “significantly less change in basal ganglia blood flow” than healthy volunteers……based on the fact that they didn’t get very excited about a winning hand in cards. This was measured by monitoring the amount of blood flow to the basal ganglia, or “the reward” response, via MRI.

Is this science? Is it possible that the tired people just didn’t get very excited? Is it possible that CFS patients are used to disappointment and didn’t expect to get any money anyway? Is it possible that the patients were depressive patients rather than CFS patients (due to the definition game), and just didn’t care? Is it possible that even if they did care, the “poor reward response” outcome would apply to a depression patient perhaps even more readily than to a patient with CFS?

Unger declares that the aforegoing test may indicate inflammation. I am very sure that CFS patients are dealing with inflammation issues and neural injury. But how in the world does the above test indicate anything at all? This is bizarrely sloppy science, and the sad thing is that the world is eating it up, and the CDC is getting away with it. For that matter, so are a lot of prominent supposed CFS “researchers”.

We are being blatantly, boldly, and completely buried, folks. This is nothing new, but it is certainly evident that the propaganda machine is still in full thrust…and the authorities at the helm aren’t even bothering to disguise it anymore….and haven’t for a long, long time.

Posted in Advocacy, CDC | 24 Comments

The WPI UK Study: Update from NIAID

Posted on March 16, 2012 by Khaly

A guest blog by Chris Douglas, 16th March 2012

Subsequent to previous blogs about the WPI losing my blood sample and consent form (see links below), I have received a further email from the National Institute of Allergy and Infectious Diseases (NIAID) which may be of interest to other participants of the UK study.

http://cfsuntied.com/blog2/2012/02/08/the-wpi-loses-uk-study-blood-sample-and-consent-form/

http://cfsuntied.com/blog2/2012/03/02/the-wpi-and-the-lost-blood-sample-communication-with-niaid/

In particular, the email states that the WPI is preparing a ‘communication plan’ to be approved by the University of Nevada, Reno, Institutional Review Board (UNR IRB). If this proceeds, it could mean that UK study participants will receive confirmation of the status of the research and whether or not further tests will be performed on (and results communicated for) the blood samples which the WPI currently holds.

This will be welcomed by many participants.

It is a shame (and sad indictment), however, that the WPI and the UNR IRB did not instigate such action either spontaneously or as a result of my direct requests for them to do so. Perhaps this was because the two bodies were working strictly (and only) within their own regulatory protocol (although this can not be clarified given the UNR IRB’s refusal to allow public access to the document in question). The issue here, though, is less about whether regulatory ethics were observed and more about the WPI and UNR IRB’s apparent inability to grasp, and operate according to, the basic tenets of professional courtesy and common decency.

I ask the following question: why would anyone with even an ounce of humility *not* take action to allay the potential fears of several hundred (some very) sick patients, many of whom have pinned their hopes on the outcome of this study and whose stress levels and relapse quotient have been reported to rise since Dr Mikovits’ departure last year? I have no satisfactory answer to this question. Perhaps the WPI and UNR IRB might have and would be prepared to enlighten us with it.

If the ‘communication plan’ does proceed, an additional outcome could be the identification of further lost blood samples and assent forms. Assuming that the WPI writes to the postal addresses on the assent forms (which might be required for ethical reasons and/or because the WPI does not have current email addresses for everyone), any participant who does not receive a letter probably has had their blood ‘mislaid’.

Other participants who face potential exclusion from the ‘communication plan’ are the ~40 housebound patients and ~10-12 in Ireland and the Scillies whose blood has yet to be drawn. According to the WPI and UNR IRB, anyone without an assent form is not a participant and so there is no regulatory obligation to communicate with these outstanding patients – the sickest of them all. At one point, it seems that the WPI did make an effort to identify these people: some known participants were asked if they could provide contact details for the outstanding patients (the participants declined). This would indicate that the WPI does not have contact details for these ~50 patients and so they may never receive direct communication about the study they still believe themselves to be enrolled in.

—– Original Message —–

From: Beisel, Christopher (NIH/NIAID) [E]

To: xxxxx

Sent: Thursday, March 15, 2012 2:45 PM

Subject: RE: R01 Grant Holder Loses Blood Sample and Consent Form

Dear xxxxx,

I’m sorry for any distress that the uncertainties regarding your consent form and personal information have caused you. We have continued to scrutinize the chain of custody of your materials, and do not have any further information concerning the whereabouts of your consent form or specimen, but will let you know immediately if further information comes to light.

I’d like to clear up some of the confusion regarding the continuation of this study following the change in Principal Investigator (PI). First, there is no change in the scientific scope of the project: the original Aims were to identify both novel viral infections and genetic susceptibility factors in European and American CFS patient cohorts. The new PI proposed no changes to these Aims and was approved to pursue them as originally stated, with incorporation of some technological advances made since the original application was written. The new PI’s training and expertise is immediately relevant to the latter objective, and he has assembled a well-qualified team of co-investigators, collaborators and consultants with the expertise and experience required to perform all the studies. Unfortunately, the Science Insider article you cite does not clearly convey this.

Second, you identify several issues with communication between the grantee (WPI) and the participants enrolled in this study, including notification of the PI change, of results that have already been obtained, and of future plans for the specimens stored at WPI. We share your concerns in this regard, and I have discussed the matter with WPI staff. They will formulate a communication plan and submit it to their IRB for approval.

Finally, you express concerns about the further use of the specimens that were collected with NIH support. For many of these, further tests will not be possible: some did not yield adequate material for further testing and some have been withdrawn from the study at the request of the donor. WPI has taken steps to ensure that they have adequate numbers of specimens to complete the studies, and has been encouraged to provide appropriate information to the present study subjects in a timely and transparent manner.

Once again, I do apologize for any distress or confusion that you’ve experienced. As I said previously, the NIH truly appreciates your interest in and commitment to the research we support on Chronic Fatigue Syndrome. Without the involvement of CFS patients like you, the scientists NIH supports would not be able to make progress in their efforts to understand and treat this disease.

Christopher E. Beisel, Ph.D.
Program Officer
Herpesvirus & Prion Research
6610 Rockledge Dr., Room 1211, Bethesda, MD 20892
Phone: 301.496.7453 FAX: 301.480.1594
NIAID, National Institutes of Health, DHHS

Posted in Advocacy, WPI | 4 Comments

WPI Publishes 2011 Annual Report

Posted on March 15, 2012 by Khaly

“You are transparent….I see many things. I see plans within plans.” …The Navigator, DUNE

For those of you who have not yet seen it, the WPI’s 2011 Annual Report has been published. If you haven’t read it, it’s worth a gander.

Much of it is interesting, some of it even more so in light of the accusations that the Whittemores are facing in legal suits.

Some of it is interesting because of its conspicuous absence. Dr. Daniel Peterson is pictured, and while his image is invoked, Judy Mikovits seems to have been erased from the history of the WPI.

The “Friends” list is interesting because it seems to not reflect the current state of affairs, but that of a day gone by.

But what I find interesting enough to talk about is the appearance of Sam Shad’s name on the Board of Directors list, on page 29.

As you may recall, Sam Shad is the host of the “news” show, “Nevada Newsmakers”. In actuality, Sam Shad Productions is a “full service advertising agency and program producer”. The word “News” in the title of the show may be somewhat misleading. Be that as it may, Mr. Shad has done several televised interviews with Annette Whittemore on his show, and it seems that in the interest of full disclosure and transparency, his relationship to the institute should have been made clear. It concerns me that these programs have been regarded by us, the ME and CFS population, as news, when in fact they were nothing of the sort. Part of the responsibility for assuming that these were legitimate interviews could possibly fall back on us. After all, buyer beware. But there certainly should have been some moral responsibility on the part of the WPI and its Board to clarify that these shows were orchestrated PR maneuvers.

Of particular concern to me is the October 26, 2011 post-Judy “interview”, which is transcripted here: http://cfsuntied.com/blog2/2011/10/27/nevada-newsmakers-annette-whittemore-interviewtranscript/, …..

…..and available via video here: http://nevadanewsmakers.com/search.asp, where a simple search of the name “Whittemore” will pull up 17 shows that revolve around either Harvey or Annette Whittemore.

It occurs to me that Mr. Shad would have a vested interest in allowing a rosy picture to be painted regarding the status of WPI, despite the turmoil that revolved (and still revolves) around the firing of their retrovirology scientist. It further occurs to me that as much as we appreciated the media attention at the time, the “interviews” further back in time were not likely to have been much more genuinely “news interviews”.

I am not calling anyone a liar. I AM saying that Sam Shad’s presence on the WPI Board of Directors puts a whole new restrospective spin on the WPI’s media coverage, at least for me.

“The answer is within the problem.”… The Navigator, DUNE

Posted in Advocacy, WPI | 6 Comments

The WPI and the Lost Blood Sample: Communication with NIAID

Posted on March 2, 2012 by Khaly

A guest blog by Chris Douglas, 2nd March 2012

In my previous guest post, I detailed how the WPI had lost my blood sample and consent form for the UK study and published a resulting letter of concern to the US National Institute of Allergy and Infectious Diseases (NIAID) which funds the research. http://cfsuntied.com/blog2/2012/02/08/the-wpi-loses-uk-study-blood-sample-and-consent-form/

In response to this letter, I have received an email from Dr Christopher Beisel who manages the NIAID grant. Dr Beisel confirms that the WPI does not have my blood sample or consent form and that it is likely neither reached the institute (either misplaced by Phlebotomy Services International, the UK-based phlebotomists or lost in transit).

He also confirms that the absence of my assent form means that I am not enrolled in the study and so I do not have to withdraw informed consent.

In light of Dr Beisel’s further commitment to continue with inquiries, the emergence of new information about the matter and, perhaps, some misunderstanding about the workings of the UK study and the reason for my initial concerns, I have replied as follows.

—– Original Message —–

From: xxxxx

To: Beisel, Christopher (NIH/NIAID) [E]

Cc: catherine.laughlin@nih.gov

Sent: Wednesday, February 29, 2012 9:45 PM

Subject: Re: R01 Grant Holder Loses Blood Sample and Consent Form

Dear Christopher

Many thanks for your reply and commitment to continue inquiries.

Perhaps I should clarify my main concern about the lost assent form: it contains name, address and signature which could be used for identity theft. Note that, if such an issue arises, I would be obliged to confirm details of the WPI’s negligence to the British police.

With respect to your comment about the phlebotomists, my blood (along with all other participants in the July 2010 draws, except for a small group in Cheshire) was taken by Phlebotomy Services International’s US-based employees and not by UK-based, third party representatives. Had the latter been the case, my issue could have been taken up by the UK Human Tissue Association and/or the National Research Ethics Service.

Regardless, even if the phlebotomists and/or the couriers were responsible for the loss, they were contracted to the WPI who, at very least, should pursue inquiries with these companies on my behalf. Both the WPI and the UNR IRB refuse to confirm whether or not this has happened.

I am not convinced, however, that these contractors were responsible for the loss given that the WPI has confirmed it holds the sample and form of the participant whose blood was drawn directly after mine. This, combined with the fact that the samples were shipped in batches, would indicate that my own blood and form were lost at the WPI and not, as you suggest, in transit.

Until I know this for sure (or have confirmed to me the point at which my blood and form were lost or, at least, likely lost), I can not judge the potential risk to my identity and have to live with the knowledge that it could be used criminally at any time. The fact that the WPI and UNR IRB will not make any effort to identify where the loss most likely occurred (and, instead, simply state over and over ‘we do not have your blood and form’) is both unacceptable and unprofessional. If you are able to encourage a more proactive response from these parties, it would be much appreciated.

In addition, myself and other participants still are waiting for communication from the WPI regarding its plans for the UK study (including formal notification that the Principal Investigator has changed). At present, any, and all, information about the study is being drip-fed to those individuals who contact the WPI, rather than by the WPI to participants en masse.

Furthermore, there are significant inconsistencies in the information being provided.

For example, one individual has been told that there are no changes to the study that would require notification to all participants (as per the terms of the assent form). Notwithstanding that a change in Principal Investigator (PI) should warrant participant notification, the WPI also states that the study continues to be targeted at understanding the pathogens of CFS when public domain information clearly indicates the R01 grant will be focused on genetic susceptibility to the disease and dysregulation of the immune system (see report below). Indeed, the new PI was approved by the NIAID specifically for the latter and not the former.

http://news.sciencemag.org/scienceinsider/2012/02/embattled-institute-retains-major.html?ref=hpqq

In contrast to the above statement of ‘no changes’, other individuals have been told the following.

1. No further research tests will be performed on any blood samples drawn in the UK in April or July 2010.

2. The outstanding ~40 housebound patients and additional ~10 patients located in Ireland and Scillies will not have their blood drawn.

3. Any existing test results will not be communicated to UK study participants. Note that this is in direct conflict with the commitment made to all participants during study recruitment in March 2010 (a commitment which was honoured with the first 50 who had their blood drawn in April 2010).

4. Blood samples drawn in the UK in April and July 2010 will be destroyed over the next few years although no specific date or deadline has been given, nor any means of proving destruction.

I contacted both the WPI and UNR IRB regarding points 1 to 4 but was told that I have no right to make such inquiries because I am not considered to be a study participant (see below reply from the UNR IRB). It seems that, by negligently losing my blood sample and assent form, the WPI has absolved itself of any duty of care and rendered me unable to invoke the participant rights embodied in the latter, which I signed in good faith.

“Your allegations of other problems and misleading or inaccurate information does not directly relate to your initial complaint. Our office will investigate complaints from participants. We do not investigate complaints that are mere conversations between individuals reported by a person not the participant. I appreciate from the tone of this email as other emails your frustration. However, it is my best judgment that it is misplaced. The current Investigator and study team are compliant and demonstrate the best care and interest to the participants. I see no value in continuing reporting alleged incidents or events related to the study.”

Finally, several participants, myself included, wish to know where we stand with respect to the financial support given to the UK study blood draws (e.g. paying for venues, phlebotomists’ car hire, etc.), particularly given that it has been communicated (to individual participants) that no further tests will be performed on UK bloods and the results completed to date will not be forwarded to participants (contrary to the commitment made during study recruitment). The financial support is a curious anomaly in itself given that the WPI has been in receipt of ~$300k pa from the NIH and the cost of the UK blood draws would have cost a fraction of this.

I appreciate your continued attention to this matter and look forward to receiving any further information which you may gather.

Please note that this email will be placed in the public domain.

Regards,

xxxxx.

Posted in Advocacy, WPI | 8 Comments

Insane Clown Posse

Posted on February 29, 2012 by Khaly

The Whittemore Peterson Institute is apparently attempting to sue Dr. Judy Mikovits for “all costs associated with her work”, according to today’s article at RGJ.com, including every dime of her salary since she started working there, all of her research costs while working for the Institute, and, crazily, for the $133,100 drop in donations after Mikovits left. Here’s the article: http://www.rgj.com/article/20120228/NEWS/120228030/Whittemore-Peterson-Institute-seek-millions-damages-from-fired-researcher

I ask you.

On what planet is this sane?

Since when do we fire people, and then sue them for return of the salary they were paid while performing work? And how do you even begin to justify suing someone for loss of income due to the fact that you FIRED them?

I decided a week ago that I was tired of watching the whole trainwreck called WPI. I stopped posting links to the ongoing saga. It’s not productive. But dammit, this is just continuously escalating into a nightmare for the entire community.

Jamie Deckoff-Jones’ latest blog, Truth Is An Absolute Defense To Libel, publishes email communications from Annette Whittemore and her staff/family, in which Jamie is accused of hurting innocent people, such as Annette’s family members and people who come to work at the institute every day to “help patients like you”. Team Whittemore wants Dr. Deckoff-Jones to issue apologies for the harm she has caused to the Whittemores, and to the Institute.

Ironic, isn’t it, considering the damage that the Institute is doing to the community? By the time this is over, not a researcher alive will want to work in this field, and may hesitate to work in any field at all, if they have to work under the fear of their institute suing them for every penny in the event of termination. This is ugly scrapping in the mud, a vendetta that seems based in ego, and one that has done far more harm to the patient population than any good that might come out of the science produced under the NIH grant money could ever make up for. IMO.

I feel that it would be ludicrous for any judge to award the WPI any money for perceived damage to their character or reputation. The very worst damage has come from within.

Posted in Advocacy, WPI | 21 Comments

Occupy Our Food Supply–Global Day Of Action

Posted on February 26, 2012 by Khaly

Here’s a bizarre situation.

Modern-day food production is putting farmers out of business, destroying our waterways with chemicals, forcing wildlife extinctions, creating antifungal-resistant strains of fungus, and exposing everyone to a largely unstudied mix of pathogenic exposure from sewer sludge.

All of this so that we can eat large doses of unnecessary extra hormones and antibiotics in food with very little flavor and lots of chemicals, which in turn upsets our natural gut flora, poisons our internal organs, and puts us on the diabetes/heart disease/immune disfunction crazy train.

No living being on the planet is benefitting from this process. Not one single life form on earth is better off for it. The only purpose this dynamic serves is to feed the greed machine - to line the pockets (well) of a handful of corporations. This is a hostile takeover.

From the moment a seed is sown to the moment you purchase your groceries, your food is being controlled by those who do NOT HAVE YOUR BEST INTERESTS AT HEART. According to Vandana Shiva, an Indian physicist and internationally known activist,

“Our food system has been hijacked by corporate giants from the Seed to the table. Seeds controlled by Monsanto, agribusiness trade controlled by Cargill, processing controlled by Pepsi and Philip Morris, retail controlled by Walmart – is a recipe for Food Dictatorship. We must Occupy the Food system to create Food Democracy.”

Monsanto in particular has been one of the biggest contributors to environmental treason. Starting with Agent Orange and working its way through genetic pollution, Monsanto is responsible for contaminating the global food chain (and then suing farmers who have suffered contamination for “patent theft”).

Cargill is a monster in its own rights. With a rich history of massive deforestation, Cargill has more than earned its spot as a threat to climate and species extinction. Cargill is also largely responsible for the hideous industrial farm practices that cram animals together in tight quarters, disallowing them from breathing fresh air, walking, or even seeing daylight.

It’s time to put a stop to this sickness. It’s creating a very sick planet. Please click on the link below to get involved:

Occupy Our Food Supply

Occupy Our Food Supply Global Day of Action is February 27, 2012

Posted in Advocacy, Environment | 1 Comment

What Have You Done To Me Lately?

Posted on February 21, 2012 by Khaly

“Good thing I cook or else we’d starve to death…”Janet Jackson, What Have You Done For Me Lately

If only it were that easy.

Over the last several years, I’ve become increasingly horrified at the multiple issues with our food supply. Thirty years ago, a burger and fries weren’t laced with toxins that were introduced intentionally by people who want to make as much money as possible from us every time we eat. Thirty years ago, arsenic wasn’t an ingredient included on the recipe for fried chicken. Thirty years ago, my strawberries weren’t irradiated, my cereal wasn’t genetically modified, and my root beer had real vanilla and sugar in it, rather than high fructose corn syrup and artificial flavoring. Thirty years ago, I didn’t have to seek out “heirloom” seeds to grow a decent garden. I didn’t have to worry about whether my grocery store purchases were grown in sewer sludge, overtreated with antibiotics or hormones, or laced with cyanide.

A lot has happened since then.

Fast Food Burger-like Products

Recently, my good friend Erik Johnson ruined my appetite. He said that if I wanted a real eye-opener, to break off a piece of a hamburger from McDonald’s, and take a look at the edges. He said it looked like there were fibers in the meat. “Seriously”, he said. “Maybe you can Google it, but it’s worth it to see for yourself”.

I took that as a challenge. I’m not much of a fast-food burger aficionado myself (although I do adore junky french fries), but my beloved dog gets a dollar-burger from McDonald’s almost every time he gets in the car. I wanted to see what I was giving him, up close and personal.

Not too far from where I live, there is a small strip of fast-food joints, with McDonald’s right in the middle. I decided to make the trip worthwhile, and picked up the cheapest burgers from Burger King, Jack-In-The-Box, AND McDonald’s. Once home, I spread my burger collection out on the table.

As Indy, my faithful canine companion of 13 years, patiently drooled in anticipation of his favorite treat, I commenced to ripping burgers apart. I started with the McDonald’s McDouble, because that is Indy’s burger of choice. To my horror, I could see stringy THINGS in the burger meat. Close examination of the Burger King and Jack-In-The-Box foodlike substances revealed the same THINGS.

What the HELL.

A quick Google search produced the following article:

I’ll have a burger and fries with everything – hold the ammonia

At first glance, I thought “Gross. But not what I’m looking for”. However, it turns out that it’s exactly what I was looking for. According to this article, one of the primary suppliers of beef to fast food joints, schools, and grocery stores, Beef Products, figured out that they could process inedible bits from the carcass and use it as filler in their burger meat. In order to do this, they had to come up with a pathogen-killing plan, as these bits largely came from the outer surfaces of the carcasses, where pathogens were more likely to reside. So they blasted it with ammonia. This is not listed as an ingredient, because the FDA agreed to call it a “processing agent”.

There are a lot of theories on line about what goes into our food. Some of it is urban legend, but some of it isn’t. I searched for science to support the claims made in this article about the meat content itself, and found it:

http://www.tissuepathology.typepad.com/files/prayson_anndiagpath_dec2008.pdf

In this study, burgers from eight different fast food chains were purchased and studied. Some of the findings were:
In 7 of 8 brands, more than 20 fragments of skeletal muscle were identified.
More than 20 fragments of connective tissue and more than 20 blood vessels were noted in all hamburgers.
Other tissue types identified in all hamburgers included peripheral nerve and adipose tissue.
Rare fragments of cartilage were seen in 3 hamburgers and bone in 2 hamburgers.
Parasitic organisms situated within skeletal muscle fibers were identified in 2 hamburgers.

You might be wondering about the parasitic organisms, in light of the fact that we just discussed the use of ammonia for just this purpose…to kill the bugs. But according to the “hold the ammonia” article, using enough ammonia to actually kill the critters makes the burger taste lousy. So they don’t use enough to actually kill pathogens, only enough to show “attempt” to kill pathogens, so that the nasty filler pieces can continue to be used.

According to this article, http://grist.org/food/2010-01-05-cheap-food-ammonia-burgers/,

Beef Products buys the cheapest, least desirable beef on offer–fatty sweepings from the slaughterhouse floor, which are notoriously rife with pathogens like E. coli 0157 and antibiotic-resistant salmonella. It sends the scraps through a series of machines, grinds them into a paste, separates out the fat, and laces the substance with ammonia to kill pathogens.

The result, known by some in the industry as “pink slime,” is marketed widely to hamburger makers.

And, not only does “pink slime” NOT kill pathogens, it apparently actually adds to the pathogen mix:

School lunch officials said that in some years Beef Products testing results were worse than many of the program’s two dozen other suppliers, which use traditional meat processing methods. From 2005 to 2009, Beef Products had a rate of 36 positive results for salmonella per 1,000 tests, compared to a rate of nine positive results per 1,000 tests for the other suppliers, according to statistics from the program.

Recently, McDonald’s made a statement to the effect that they are no longer relying on the pink slime; however, based on the appearance of my burger, I’d hazard a guess that “no longer relying on” is not the same thing as “no longer using”.

Fried Chicken Gone Wild

Apparently, not all chicken is equal. SOME chickens get an extra treat in their feed….arsenic.

According to this article http://www.upc-online.org/health/41806arsenic.html, the Institute for Agriculture and Trade Policy (IATP) tested 155 samples of raw chicken from grocery stores, and found arsenic in 55% of the samples. ALL 90 fast food samples tested positive. Apparently, the USDA doesn’t test for arsenic, and the FDA allows the use.

Some specific findings from the report:

Arsenic levels vary significantly. The most contaminated brands of uncooked chicken breasts and thighs on average had arsenic levels around ten-fold higher than did the brands found to be least contaminated with arsenic;
Plenty of the raw chicken tested had no or nearly no detectable arsenic, including that from some organic companies and most chicken tested from the world’s largest chicken producer, Tyson Foods;
Five packages of Golden Plump livers contained an average of nearly 222 ppb arsenic, the highest of all the chicken samples;
Prepared chicken thighs from Church’s on average had 20 times the arsenic levels of thighs from KFC. The chicken in sandwiches from Jack In The Box on average had more than five times the arsenic than in Subway sandwiches.
An estimated 1.7 to 2.2 million pounds of roxarsone, a single arsenic feed additive, are given each year to chickens. Much of this ends up in chicken litter and the broader environment.

So not only have I been poisoning my dog with Not-A-Burgers, I’ve been poisoning the roadrunners that live near my RV with KFC. They really like the stuff! But I’ve been inadvertently contributing to wildlife harm, simply because other members of my own species don’t care one iota what they put in MY food.

Staying out of fast-food joints seems prudent to me, at this point. Indy can do without McDoubles, although he won’t understand why he doesn’t get them anymore. But what about the grocery store?

GMO Foods

GMO foods are foods that have had their DNA changed through genetic engineering. Here’s a good article that gives the basics about the history of genetically modifying plants and foodcrops, some of the debate about the safety of doing so, and the statistics that clearly show the United States to be the worst offender. http://www.disabled-world.com/fitness/gm-foods.php

Not only is the U.S. carrying the largest percentage of GM crops, it has (so far) refused to adhere to public demand for labeling of GM foodstuffs. So, by and large, we have no idea what we’re eating.

Some particulars from this article:

In 1989, dozens of Americans died and several thousands were afflicted and impaired by a genetically altered version of the food supplement – L-tryptophan. A settlement of $2 billion dollars was paid by Showa Denko, Japan’s third largest chemical company. (Mayeno and Gleich, 1994).
On August 18, 2006, American exports of rice to Europe were interrupted when much of the U.S. crop was confirmed to be contaminated with unapproved engineered genes, possibly due to accidental cross-pollination with conventional crops.
In 1998, 95-98 percent of about 10 km² planted with canola by Canadian farmer Percy Schmeiser were found to contain Monsanto’s patented Roundup Ready gene although Schmeiser had never purchased seed from the Monsanto company. Monsanto then sued Schmeiser for piracy. In the past few years more and more crops have started to cross-pollinate which leaves a problem that is yet to be solved.
In 2005 Environmentalists say Australia faced “the most serious genetic contamination event” in its history, after the West Australian government confirmed low levels of genetically modified canola had been found in non-GM canola. Also in 2005 a decade-long project to develop genetically modified peas with built-in pest-resistance has been abandoned after tests showed they caused allergic lung damage in mice.

“They’re now turning those seeds into intellectual property, so they have a virtual lock on the seeds upon which we all depend for our food and survival.” – Jeremy Rifkin

So which foods are genetically modified?

Well, rapeseed (canola), cotton, rice, soybeans, tomatoes, some potatoes, some squash, and corn, among others. Dairy products due to GM bovine growth hormone injections, meat due to the GM grain fed to livestock, and almost anything that you eat in a restaurant due to cooking in GM oils. Another good friend supplied me with this list that’s probably not comprehensive (believe it or not), but that includes many things you’d never think were GMO foods, including baby formulas, barbecue sauces, salsas, spaghetti sauces, and more: http://opposingdigits.com/forums/post-62.html

If you’re wondering why I’m posting this on a CFS blog, it’s because I’m mad. When I thanked Erik for informing me about the burgers, I used words like “blearrgh” and “aaaack”, phrases like “I want to go to the FDA and vomit all over someone’s desk!” I no longer wonder why so many people are sick, why we have so many mushrooming illnesses. Instead, I wonder why everybody isn’t sick. It’s not just the food. It’s the environment as well. We’ve hit an era where the overriding sentiment that drives the world is greed, at any expense. We’ve created an entirely new paradigm, one that many species cannot survive. Bats, bees, birds, turtles, frogs…all have us to thank for becoming dwindling species. Ultimately, we …humans….may be one of those species that just doesn’t make it. Thanks to us.

Occupy Our Food Supply

Posted in Advocacy, Environment | 7 Comments

The WPI Loses UK Study Blood Sample and Consent Form

Posted on February 8, 2012 by Khaly

A guest blog by Chris Douglas, 8th February 2012

After Judy Mikovits was dismissed by the WPI, I sought clarification from Annette Whittemore regarding the institute’s plans for the UK study so that I could decide whether or not to continue as a participant. It subsequently emerged that both my blood sample and consent form had been lost. Perhaps, predictably, the WPI blamed Dr Mikovits’ housekeeping and tried to ‘move me along’.

Let me state, at this point, that I really do not care whether Judy Mikovits, Annette Whittemore or the Easter Bunny personally lost my blood sample and consent form. What I care about is receiving a sincere apology and a credible explanation from the organisation (not an individual employee) responsible for the study I participated in.

At the risk of doing the work for the WPI, such a communication might go something like this.

Dear xxxx –
We are deeply sorry to have to inform you that we do not have your blood sample or consent form.
We have made inquiries with the phlebotomy company who drew your blood, the couriers who shipped the blood to the US and within the US, and another lab that handled the blood. We also contacted other participants who had their blood drawn on the same day as you.
Based on these findings, we believe that your blood and consent form [select option]:
(a) was not collected by the courier in the UK.
(b) was lost by the courier in international transit.
(c) was mislaid by the other US lab that received your blood.
(d) was lost in transit between the other US lab and the WPI.
(e) was lost at the WPI.
We take this matter most seriously and can assure you that the issue is being addressed with the greatest attention. We will notify you if, and when, further information comes available.
In the meantime, please find attached a blank consent form for you to sign and return. We have added a clause which refers to the lost blood sample and preceding consent form and which allows you to choose how both should be handled in the event that they are discovered (e.g. retained for study, destroyed, etc.).
We thank you for your patience and understanding in this matter and hope that you will continue to support the WPI in its future endeavours.
With kind regards,
Xxxx

Instead, after a four month email correspondence on the matter, the University of Nevada, Reno, Institutional Review Board stated simply:

“We are not at liberty to discuss with you any investigations that may have been undertaken by our office. I can assure you, however, that we take seriously the oversight of any research studies conducted on our campus that include human participants, including those conducted at WPI.

“Our office and the WPI have on numerous occasions answered your question about the whereabouts of your consent form and blood sample. There is no record of either. We appreciate you contacting our office regarding this issue but we are unable to provide any further information to you.”

As a consequence, I have sent the following email to the US NIAID representatives who manage the R01 grant that funds the UK study (i.e. Dr Christopher Beisel and Dr Catherine Laughlin, Chief of the Virology Branch). I asked Khaly to publish this so that other participants of WPI studies are made aware of the issue. Thanks to her for doing so.

—– Original Message —–

From: xxxxx

To: cbeisel@niaid.nih.gov

Cc: catherine.laughlin@nih.gov

Sent: Tuesday, February 07, 2012 12:00 PM

Subject: R01 Grant Holder Loses Blood Sample and Consent Form

Confidential. Without Prejudice.

Dear Christopher

R01AI078234 Grant Holder Loses Blood Sample and Consent Form

I am a British participant in a research programme funded by NIH grant no. R01AI078234 (New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome). As you will be aware, this, initially, was awarded to the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno (UNR), and its then Principal Investigator (PI), Dr Judy Mikovits.

In 2011, I had cause to consider whether or not to withdraw informed consent to this study and so entered into related correspondence with the WPI and the UNR’s Institutional Review Board (IRB). As a result, I discovered that the WPI had lost both my blood sample and consent form and either cannot, or will not, identify where these might be. Indeed, in the final correspondence from the UNR IRB, I was told that: “Our office and the WPI have on numerous occasions answered your question about the whereabouts of your consent form and blood sample. There is no record of either.”

That the WPI has lost my blood and consent form is alarming enough but that both they, and the UNR IRB, repeatedly respond with ‘we can not help you’ is simply deplorable.

When I asked the UNR IRB if a formal investigation had taken place that would include, for example, contacting the phlebotomists who drew the blood in the UK, the courier who shipped the blood to the US, any other labs that may have had access to the blood, other participants whose blood was drawn on the same day, etc., I was told that: “We are not at liberty to discuss with you any investigations that may have been undertaken by our office.”

In effect, both the WPI and the UNR IRB have washed their hands of me and are not honouring the ethical and legal commitment of participant protection as stated on the consent form that I signed in good faith.

This attitude is particularly contemptuous given that, not only did travel to the blood draw harm my health but, as per many participants in this British study, I donated financially to the cost of the venue hire (a curious anomaly in light of the WPI’s million dollar funding from the US NIH and, perhaps, a breach of IRB ethics in itself).

I would appreciate any advice you can offer on how to progress this matter to a more satisfactory conclusion, viz to identify the precise whereabouts of my blood sample and consent form and/or the point between Devon, UK and UNR, US at which they were lost.

I also would appreciate advice on how to withdraw consent given that the WPI and UNR IRB deny I am, or ever have been, a participant in this study.

Finally, I wish to express concern that, following a recent NIH review, the WPI has been allowed to retain the R01 funds. Having been a previous supporter of the institute, it is with great regret that I now suggest this organisation is neither capable, nor responsible, enough to manage such a large US Government grant.

A responsible organisation would have investigated thoroughly the loss of my blood sample and consent form and presented me with a credible explanation. Instead, all the WPI and UNR IRB have said is that the previous PI may have held the documents and such issues will not occur “in the future”.

This is akin to a manufacturer refusing to investigate a product complaint because the Production Director no longer works for the company. The complaint, however, remains the responsibility of the manufacturer (not its ex-employee), just as the lost blood and consent form remain the responsibility of the research institute (not its ex-PI). If the WPI can not grasp this basic rule of good conduct, how can it be trusted with over $1m of US taxpayers’ research dollars? I find this situation even more worrying given the WPI President’s current involvement in civil embezzlement litigation.

In addition, my own experience should raise concerns about other participants’ blood samples and consent forms, particularly those drawn in the UK during the last two weeks of July 2010. Regardless of assurances about blood draws “in the future”, how many samples already may have been lost or misidentified without the WPI or participants yet knowing it?

Please note that this letter will be placed in the public domain so that other participants of the WPI’s studies are made aware of the issues that I have encountered. I consider it only fair that others should have access to these facts when considering their own continued participation in such research.

Yours sincerely,

xxxxx.

Sequence of Events

26th July 2010

My blood was drawn in Ashburton, Devon, UK, by Phlebotomy Services International (PSI), a US company working on behalf of the WPI. At this time, I signed a consent form of which I have a blank copy (not a signed copy as the venue was a small hotel and did not have copying facilities).

Blood was drawn from two other participants at this venue and from additional participants on the same day at a different venue. It is my understanding that all blood samples and consent forms from these draws were collected from PSI by FedEx (for shipment to the US) later that day.

17th October 2011

I emailed the WPI’s President, Annette Whittemore, to request clarification of the status of this research but received no response other than two acknowledgements from her daughter, Andrea, on 25th October and 1st November.

15th November 2011

In the absence of a response from the WPI, I emailed the UNR IRB to ask who held consent forms for the study and whether the holder has a legal obligation to provide copies to participants.

17th and 30th November 2011

The UNR IRB acknowledged receipt of my inquiry, the latter email stating that the WPI was reviewing my request for a copy of my consent form.

16th and 22nd November 2011

I emailed Kellen Jones-Monick, the WPI’s Office Manager, to request clarification of the study’s status and, also, who holds participants’ consent forms.

22nd November 2011

Kellen confirmed that the WPI holds the consent forms and that she could provide copies upon request.

I requested a copy of my consent form from Kellen (request sent again on 27th November 2011).

5th December 2011

Kellen confirmed that both my blood sample and consent form had been lost.

“After carefully reviewing our study records, I was unable to find a consent for you. I also checked with the lab to determine whether or not we have your blood sample and it appears we never received one. Therefore, according to our records you are not enrolled in the R01.”

6th December 2011

I replied to Kellen with questions concerning the feasibility and ethics of identifying blood samples in the lab and forwarded the correspondence, without prejudice, to Nancy Moody, Director, Office Human Research Protection, at the UNR IRB.

15th December 2011

I prompted Kellen for a reply to my questions and she confirmed that it was not a breach of ethics for her to identify coded blood samples in the lab.

16th December 2011

I requested further clarification of Kellen’s reply and restated that I wanted to know the whereabouts of my blood and consent form.

20th December 2011

Kellen confirmed that “It is not a breach for me to access the master code and verify it against coded samples in the lab” and that “We have a meeting scheduled with an IRB representative at the end of the month regarding this matter.”

I replied to ask whether ‘this matter’ referred specifically to my case and, also, to clarify the identity of an unknown email recipient who had been copied on our correspondence without my permission.

Kellen’s response to the first query was a non-committal: “We communicate with the IRB regularly in regards to every matter concerning human subjects.” To the second query: “…Carli, our VP and legal representative.”

22nd December 2011

I asked Kellen why the WPI’s legal representative had been copied on the correspondence and without my permission.

23rd December 2011

Kellen confirmed that “Carli is in charge of compliance issues and is in continuous communication with the IRB.”

27th January 2012

I emailed Nancy Moody at the UNR IRB to ask if there had been any progress regarding my lost blood sample and consent form.

Nancy confirmed that Michelle Johnson of the UNR IRB completed a review and: “There is no blood specimen or informed consent document found in the study documentation regarding your enrollment in the study. The previous Investigator is no longer with WPI. It is unknown what the Investigator did with documentation if she was in receipt of it. Carli West Kinne of WPI has informed you of no record of your participation in this study, also. IRB has concluded our review of the study team and documents. Administrative procedures are in place to mitigate from such poor study record keeping in the future.”

I replied that I had not been contacted by Carli or anyone else at the WPI since 23^rd December. I stated that I did not accept the WPI attributing the loss of my blood sample and consent form solely to the previous PI and so absolving itself of all responsibility. I asked if a formal investigation had included the phlebotomists, international courier, any other lab involved, other participants, etc.

Michelle Johnson replied that:

“We are not at liberty to discuss with you any investigations that may have been undertaken by our office. I can assure you, however, that we take seriously the oversight of any research studies conducted on our campus that include human participants, including those conducted at WPI.

“Our office and the WPI have on numerous occasions answered your question about the whereabouts of your consent form and blood sample. There is no record of either. We appreciate you contacting our office regarding this issue but we are unable to provide any further information to you.”

Posted in Advocacy, WPI | 21 Comments

The Lebowski Rule

Posted on February 6, 2012 by Khaly

Darkness washed over the Dude – darker’n a black steer’s tookus on a moonless prairie night. There was no bottom. The Stranger, from The Big Lebowski

The premise of The Lebowski Rule is Murphy’s Law, squared. In other words, if it can go wrong, not only will it, but it will initiate an otherworldly cataclysmic domino-effect of unbelievably strange and logic-defying events that would put Spock in a straight jacket.

In the movie The Big Lebowski, Jeff Lebowski aka “The Dude” falls into a whirlwind of craziness caused by other people. His car gets stolen, he becomes embroiled in a kidnapping, his best friend has Viet Nam flashbacks at inappropriate times, and worst of all, someone urinates on his only rug. And all he really wants to do is go bowling.

Somehow, I can identify with his extreme sense of “WTF??”. I bet you can, too.

Recent events surrounding the “science” and “research” of CFS have been an odyssey beyond comprehension. A lead researcher has been imprisoned. Philanthropists behind a novel research institute have been formally accused of embezzlement in a lawsuit. A countersuit makes claims of death threats and extortion.

But wait. Here’s the latest twist:

http://projectreporter.nih.gov/project_info_details.cfm?aid=8144303&icde=0

According to this document, Vincent Lombardi has apparently been named principal investigator of the grant which was originally given to Dr. Judy Mikovits. The grant remains with the WPI.

Draw your own conclusions. I am certainly drawing mine. If your conclusions dictate, and you have donated samples for this study and no longer wish to participate, here is some information on how to withdraw:

http://www.mecfsforums.com/index.php/topic,11255.0.html

Posted in Advocacy | 10 Comments