Guilt-free donations to the WPI

The problem with giving to charity—with any kind of do-gooding, really—is that it never feels like enough. No matter how much money, time, or effort you invested, you could have invested more. Just think of all the money, time, and effort you've put into things that only benefit you.

Charities like to take that guilt and build on it. You can't really blame them, but it's still annoying to get a ream of address labels attached to a heartfelt donation plea. Regardless of a cause's worthiness, who likes to be manipulated like that?

Though I don't officially represent any charity, I do occasionally try to persuade my readers to donate to the Whittemore Peterson Institute. Currently, WPI is the best hope for people with myalgic encephalomyelitis, fibromyalgia, Gulf War syndrome, and other neuroimmune diseases. These patients have been abandoned by just about everybody else. Not only do they suffer terribly, but many have little or no support. Friends, family, and physicians often don't take their suffering seriously.

So here's my proposition.

Click the donation button below and give some money to WPI. If you're a multibillionaire, then by all means, please feel free to donate one meeeeellion dollars. But if you're a person of slightly more modest means, give whatever you feel comfortable with. Then buy yourself that video game you wanted. I won't judge you. As far as I'm concerned, if you donate to WPI, you deserve to have nice things.

... before the dawn

Two things made me happy today.

The first was a blog post from Vincent Racaniello. Dr. Racaniello was the virologist who told the Chicago Tribune that four new papers on XMRV were "probably the beginning of the end" of XMRV and ME/CFS." In other words, he believed the latest research showed that XMRV had nothing to do with ME/CFS. Bad news for anyone hoping that XMRV research could lead to treatment for an as-yet incurable disease that causes unimaginable suffering.

Anyway, he changed his mind. After reading the papers more carefully ...

My conclusion is that these four papers point out how identification of XMRV from human specimens can be complicated by contamination, but they do not mean that previous studies were compromised.

Will the media report Dr. Racaniello's retraction and apology as widely as they did his initial assessment? Probably not. But you'd better believe that people in the ME/CFS community will be quoting him when new articles about the papers are published.

The second thing to make me happy was an interview in Nevada Newsmakers with Annette Whittemore and Judy Mikovitz. Interviewer Sam Shad asked the right questions, and they gave intelligent, articulate replies. Moreover, their delivery was perfect. They managed to discuss all the politics around ME/CFS without coming off to the casual viewer as paranoid conspiracy theorists. Believe me, that's not easy to do.

A heartfelt thank you to everyone above. You all made Tuesday a much better day than Monday.

Onward!

Vote WPI!

The American Express Members Project is donating a total of $1 million to five charities. If you'd like to nominate the Whittemore Peterson Institute as one of the recipients, go here:

www.takepart.com/membersproject

Voting is open to everyone!

My fingers are crossed. The Whittemore Peterson Institute is the best hope I've seen so far for people with neglected neuroimmune diseases like ME/CFS, fibromyalgia, and Gulf War syndrome. They need all the funding they can get.

Now You See Us

A little over a year ago, I wrote an ME/CFS protest song called "Now You See Us." It's full of righteous indignation, but also giddy and optimistic. I'm posting it here tonight in celebration of the long-awaited release of the Alter paper.

(This is a low-res home recording, so if you're listening on itty bitty laptop speakers, you may need to crank the volume up to max.)

This goes out to everyone at the Whittemore Peterson Institute for getting the ball rolling. It also goes out to Alter et al for discovering another important piece to the puzzle, and for dealing with a lot of political crap they likely never expected. And to all of us, for surviving the wait.

If you like it, share it with anyone else you think will like it too! Lyrics are below.




NOW YOU SEE US

Lyrics by Susan Wenger
Music by Susan Wenger & Ron Amistadi

Day they came
Did their worst
Felt like I might die of thirst
Not a drop of water to be found
Seasons pass
Years go by
Never knew the reason why
They always kick you hardest when you're down

Chase the money trail
And you begin to realize
There's shady people cleaning out the store

CHORUS
Someone's got to keep the faith
Someone's got to hold the line
I can build a mighty fortress
With the power of my mind
I'll do anything it takes
Gonna take back what is mine
And there's no stopping us this time


Alone we are divisible
Silent and invisible
Without the strength to get a message through
Find each other one by one
Get together
Get it done
Keep each other going 'til we do

They can call us crazy
See how much time that buys
But we will not believe them anymore

CHORUS
Someone's got to keep the faith
Someone's got to hold the line
I can build a bridge between us
With the power of my mind
I'll do anything it takes
Gonna take back what is mine, mine, mine
And there's no stopping us this time


Results of their analysis
Hysterical paralysis
The more things change the more they stay the same
But closer now
To the truth
And they cannot deny the proof
By trying to call it by a different name

CHORUS
Someone's got to keep the faith
Someone's got to hold the line
I can build a better future
With the power of my mind
I'll do anything it takes
Gonna take back what is mine, mine, mine

And you and me will be just fine

---------------------------------------------------------------
Copyright 2009 Cinder Bridge. All rights reserved.

The Whittemore Peterson Institute finds a home

The Center for Molecular Medicine at the University of Nevada, Reno, opened today. It will house, among other things, the headquarters of the Whittemore Peterson Institute for Neuro-Immune Disease and its research clinic.

"Not only does it have the technical infrastructure in terms of cold rooms and digitalize support required to do first-rate research, but it’s built on the concept of laboratories without walls,” said [Sanford] Barsky, who also is director of cancer biology at the Whittemore Peterson Institute. “That allows a number of investigators studying different diseases to be housed in the same work area and it maximizes interaction and collaboration. And when it comes to research, everyone is a winner.”

Full story here.

You can donate to the Whittemore Peterson Institute here.

ME/CFS Awareness Day: A video and a place to donate

ME/CFS Awareness Day is today. If you've been reading this blog regularly, you most likely know what ME/CFS is and why we need to raise awareness for it. If not, here's the short version.

Many people know ME/CFS by the name "chronic fatigue syndrome," and not coincidentally, many people think the disease just makes you really tired. Nope. In reality, the disease involves constant pain, crushing exhaustion, neurological problems, and early death.

This video explains it better than I do. Click play. I'll wait.

Feel like taking some action?

1. Donate to the Whittemore Peterson Institute for Neuro-Immune Disease.
   
   The Whittemore Peterson Institute discovered more about this disease in the past couple of years than the CDC has in over two decades. They have done this with no federal funding, and they need our support to continue. Donate, donate, donate.
   
   
2. Post the ME/CFS Phoenix Rising Video link on Facebook, Twitter, or wherever you hang out online: http://tinyurl.com/mecfsprv.
   
   Write a tagline in your status update that will make your friends curious enough to click and watch.
   
   
3. Send the ME/CFS Phoenix Rising Video link to people you know: http://tinyurl.com/mecfsprv.
   
   Which people? People who are sympathetic to the cause will appreciate it. People who think the disease is just tiredness or hypochondria need to see it even more. For best results, send the link to one friend at a time rather than blasting everyone in your mailing list at once. They're less likely to discard it if it's intended specifically for them.
   
   
4. Encourage people to donate to WPI after they've seen the video.

Thanks for listening. Now go out and spread the word.

Pushback from WPI

Since the Whittemore Peterson Institute's discovery of a link between XMRV and ME/CFS in October, subsequent research teams have failed to replicate their findings. Some of the other researchers claim the discrepancy exists because of flaws in WPI's methods. Specifically, they say the WPI's subjects all came from the Incline Village outbreak in the '80s.

Earlier this week, WPI challenged these claims in a letter to Dr. McClure, first author of the first negative study.

This statement about the origin of the 101 patient samples is untrue. The patients in the Science study were well defined in the paper as having CFS by the Fukuda and Canadian consensus definitions of ME/CFS. More importantly the patient samples did not come from the “Lake Tahoe outbreak” as you assert, but rather from patients who had become ill while living in various parts of the United States.

We would also like to report that WPI researchers have previously detected XMRV in patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the completion of their own studies, as they requested. We have email communication that confirms both doctors were aware of these findings before publishing their negative papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive patient sample to determine if his testing procedures could in fact detect XMRV in a positive blood sample before he published his paper. We wonder why these materials were not used in his study which also failed to detect XMRV.

Full letter here.

I was gratified to read this, but wondered if it would make a difference to anyone besides ME/CFS patients and the people who know them. Would anyone else listen?

Today I was gratified once again to learn that others are taking this ball and running with it. From Dr. Speedy's site:

Gendringen, 2010/04/16 - Researchers at UMC St. Radboud announced in February no XMRV virus has been found in the blood of Dutch chronic fatigue syndrome (ME/CFS) patients. They concealed, however, that U.S. reseachers did found traces of this retrovirus in blood samples of the same patient. This is shown in a web publication of Ortho magazine, which is put online today.

Here's hoping the new studies in the works will get it right. Whatever role XMRV plays in ME/CFS, we need real answers, not politics.

Failure to replicate: The WPI's take

The Whittemore Peterson Institute has finally issued a statement about a recent UK study that failed to detect XMRV in ME/CFS patients.

By "finally," I mean three days after said UK study was published. Three days is probably a reasonable length of time, given the need to review the results, and given that they're probably busy with other things over there. Three days feels very long, though, when you've been clinging to the hope that maybe there will be a cure for ME/CFS in our lifetime after all. Three days feels very long you fear that hope might be snatched away.

(A summary for those just tuning in: ME/CFS is a debilitating disease that causes chronic pain, crushing exhaustion, and significantly shortened lifespan. In October of last year, the Whittemore Peterson Institute discovered a link between this disease and a retrovirus called XMRV. The results of the most recent study failed to confirm the WPI's results.)

WPI's statement begins, "WPI is aware of the recent UK study that was unable to detect the presence of XMRV in any CFS patient samples."

The wording made me smile. "WPI is aware ..." as if they could possibly have missed the news. Obviously I'm not the only person who's been impatiently awaiting their interpretation. They must have been getting hammered.

Anyway, their full response is here: www.wpinstitute.org/news/news_current.html. Among other things, they point out that the new UK study didn't actually attempt replication. They used different techniques and technologies, which the WPI claims are insufficient to detect XMRV.

So, hope restored for the time being. It's strange, though. The UK lab almost certainly wasn't trying to manipulate the data to get negative results. Why did they not attempt a real replication study?

Failure to detect false illness beliefs

Well, this is interesting.

If you've been following the news about ME/CFS, you'll already know all about the latest storm that's been brewing. If not, here's a brief summary.

Back in October, the Whittemore Peterson Institute discovered a link between a retrovirus called XMRV and ME/CFS: 67 percent of the patients sampled tested positive for XMRV, as compared to 4 percent of the healthy controls. The WPI paper was published in Science.

Last week, a group of researchers at Imperial College London published "Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome" online. They claim they were unable to replicate the WPI's findings.

The WPI stands by its results. In an official statement, they list various reasons why they believe the new Erlwein et al. study is useless. One is the difference in the patient populations.

Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.

Nothing too surprising here. One of the paper's authors is Simon Wessely, who believes that people with ME/CFS (and fibromyalgia, and Gulf War syndrome) have "false illness beliefs." Here's a quote from an interview he did with New Scientist

Such symptoms only become a problem when people get trapped in excessively narrow explanations for illness - when they exclude any broader consideration of the many reasons why we feel the way we do.

But today he and a couple of coauthors posted a rebuttal to the WPI's dismissal of the new results. Here are the bits that interest me:

We follow the same psychiatric exclusion criteria as mandated by the Fukuda criteria. We do this on the basis of semi structured interviews and assessment that we have also published. In addition, we also exclude patients with chronic somatisation disorder as defined by DSM-IV, which is not required by the Fukuda criteria, but most experts and clinicians agree are a different population.

and ...

patients in our service have also co operated in studies of PET and fMRI neuroimaging, autonomic dysfunction, neurochemistry, respiratory function, vitamin status, anti nuclear antibodies, immune function, neuroendocrine function and genetics (see references). Hence it is untrue to state that patients at King’s for example do not show alterations in immune function – in fact they do - see Skowera et al, High levels of type 2 cytokine-producing cells in chronic fatigue syndrome." Clinical and Experimental Immunology 2004: 135: 294-302. Similarly, many of our patients also show altered neuroendocrine, neurochemical and other biological parameters, and we have published many examples of these (see references below). It is therefore simply untrue that we either seek to find no biological changes in CFS, or fail to report those that we do find.

So, people only have ME/CFS because they think they do. But our patient population is legitimate, because look how sick they are!