X-tra proteins?

For starters, check this out:

Dr Klimas says she has been filmed for 2 hours for just about 10 seconds of air time. The big news is a research that came out yesterday announced the presence of proteins in the spinal fluid of CFS patients that is not present in normal controls.

Funny that it came out less than a week after the psycho study huh?

Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome By Dr S. Schutzer et al.

Essentially, Dr Schutzer found proteins in the cerebro-spinal fluids in CFS patients that are distinct from chronic lyme patients and healthy controls, including some complement proteins, associated with inflammation. This means that we can tell scientifically that ME/CFS is real, and it is not an imaginary illness.

Well we knew that... We just had to let the scientists prove it. Of course more studies are needed. I hope they hurry...

In the meantime, one of our fellow patient Charlotte von Salis attended an education day at the National Institute of Health, it was a presentation by 3 doctors, Dr Shih-Shing Lo, Dr Harvey Alter, and Dr Fred Gill. You will be able to find the video cast here  when it gets available for the public. It was only available to NIH people, but Charlotte has been able to attend and blogged about it, and one journalist/blogger Mindy Kitei hosted the blog post here here

What I have to say about it, and I won't be shy, is what the hell, NIH, what were you thinking? Mindy, in the comment section, said "The answer to who picked Gill is that Tony Fauci is ultimately pulling the strings, and Dr. Fred Gill is just the latest patsy." Dr Fauci is a long time accomplice in keeping chronic fatigue syndrome in the shadow and keeping the disease classified (unofficially) as a psychiatric disorder. He is at the head of NIAID (National Institute of Allergies and Infectious Diseases) and has quite a large budget to manage, but won't share any of it with the CFS program. Anyways, it sounds like Dr Gill's presentation was as atrocious as the slides that we have been able to view before  the presentation:

Dr Gill's slides

As a comparison, you can view the science as viewed by Dr Lo and Alter through their presentation at the same education day:

Dr Lo's slides

Dr Alter's slides

Patients with ME/CFS needs to know what is the agenda of the NIH and NIAID and why they perpetuate the corruption, discrimination and bad science of 25 years since the epidemics of the 1980's. ME/CFS science proved through 4000 papers that the disease is not psychiatric. There was a great opportunity this week to come clean and dispel the myths. So why inviting a doctor to spread more psycho-babble through the world, when XMRV has been twice linked to patients with CFS and abnormal proteins have just been found in the spinal fluid of patients ?

The psych lobby is playing big cards, almost desperately it seems, just the same way a husband is trying to hide a mistress. It ain't working. There are traces everywhere, and it's not perfume! The psych lobby group, the CDC, the MRC (Wessley school) have committed crimes to humanity. It's about to get uncovered. In the end, science always wins.

I will leave you tonight with another goodie from Hillary Johnson, a genius piece called Hey, Lazy Arses!

X-traordinary expenses?

From XMRV Global Action

There is a request for action going around everywhere :

From Wildaisy,

Please feel free to copy and paste this letter or any part of it to send to anyone you want. 

I sent the letter below to Kathleen Sebelius, Francis Collins, Dennis Mangan, Wanda Jones, my two US Senators from Florida and my Congressional Representative.

You can see discussion of this issue here: http://www.mecfsforums.com/index.php/topic,5276.0.html

Letter:

Myra McClure, Ph.D. has been appointed to membership on the Center for Scientific Review Special Emphasis Panel, ZRG1 CFSH80 2/22/2011-2/23/2011 meeting.

I protest this appointment for the following reasons:

1)  Dr. McClure is not a United States Citizen.  Why should a United Kingdom resident be deciding which applicants receive research grants in the United States?  In addition to questions of legality which arise from this, there are further questions of expense, since Dr. McClure's travel expenses will, of necessity, be higher than those of a United States resident.

2)  Dr. McClure has publicly stated that she has no interest in research in the area of Chronic Fatigue

     Syndrome.

    “Nothing on God’s Earth could persuade me to do more research on CFS.” 

    Source is this articlehttp://www.sciencemag.org/content/329/5987/18.summary

   

 3) Dr. McClure has publicly stated that she is biased as to study of the XMRV retrovirus, which is a  

    active area of research in the area of  Chronic Fatigue Syndrome.

"Professor McClure was a co-author of the paper published in Plos One in January 2010 titled, “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” As the paper’s name suggests, this study found no evidence of XMRV or MLV in CFS patients or controls. This study can be found here:http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0008519

                                                                                                                                                                                                                           Professor McClure has publically stated on many occasions that there is a high possibility that the XMRV/MLV related virus findings being implicated in CFS are a consequence of contamination."

Seehttp://livingwithchronicfatiguesyndrome.wordpress.com/2010/09/27/conversing-with-professor-myra-mcclure-about-xmrv-and-contamination/

  

I ask that Dr. McClure be removed from this committee and that a qualified retrovirologist who is a resident of the United States be appointed instead.

  

Cordially,

http://www.facebook.com/note.php?note_id=185904741443919&id=100001385235698

*********************************************************************

So here is the story. There is a committee that is part of the NIH (National Institute of Health) that decides if a request for grant for a research is approved or denied. 

We have learnt that for ME/CFS, there are about 3 or 4 percent of the grants that are accepted this way. This is because the committee members that review the grant  proposals are not knowledgeable about the disease and very likely do not think it is a serious disease. For the most part, the grants accepted relate to psychology and ME/CFS. 

Recently the composition of the committee changed, and someone from the UK was invited to join, amongst the other ones, a retrovirologist who publicly said she would never research CFS again, and trying to replicate the WPI study, did not find XMRV, a novel retrovirus associated with ME/CFS either in patients with CFS or controls. She also went on a few interviews saying there is no XMRV and the WPI study is likely contamination.

Now, would you think there is a very strong conflict of interest that the committee accept a scientist that have an obvious aversion for this illness, doesn't believe in the connection with XMRV and will review grants applications?

If one was truly interested to advance science for a population of very sick people that's been neglected for 3 decades, would that be the way to go? 

Clearly Myra McClure has made up her mind about contamination. And this is Vincent Racaniello's interview, it starts at about 48:30 minutes into the broadcast. 

What patients need at this point, is open minded scientists and doctors, the kind that know what ME/CFS is all about. We need research grants to be awarded and science to prevail, not the insurance companies, not the interest of the governments. It is a travesty to think that millions of patients across the world have been ill for over decades without being able to get decent health care, or getting respect, the same kind one gets when they get cancer. We are human beings. We once had productive lives. We wish to return to a productive life. 

Myra McClure doesn't belong on a US committee that determines who gets a grant and who doesn't She is biased. She works with people (Simon Wessley) who thinks ME/CFS is not a real disease. She has very likely never met someone with ME/CFS.  

I urge the governments, the doctors and the patients to act and send e-mails and faxes to the NIH and their congressmen to remove Myra McClure from this committee.