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-cessive psychobabble

Today has been a sad and upsetting day for ME/CFS patients, the day the PACE trial results from the UK were revealed and shared around the world, to the delight of most that don't understand what ME/CFS is. Just take a look at LA times' and NYT's articles' comments. Some people are saying, hell ya, get them therapy, and these people should go back to work.

L.A. Times article

N.Y. Times article

PACE trials stands for Pacing, graded Activity and Cognitive behavioral therapy: a randomize Evaluation. It was initiated a few years ago with a few millions pounds budget, by psychiatrists that aim at proving that ME/CFS is a psychiatric illness.

They found fatigued patients. They didn't have to meet the latest definition of ME/CFS via the Canadian Consensus Criteria, because that would have skewed the results really bad. They just needed to be fatigued. The used the Oxford Criteria also known as empiric definition.




The ‘Oxford Criteria’ (1990) therefore defined CFS/ME as a syndrome in which:
-there is a definite onset (ie it is not lifelong)
-fatigue is the main symptom
-the fatigue is severe, disabling and affects both physical and mental functioning
-the fatigue has been present for at least six months, during which time it has been present more than 50 per cent of the time
-other symptoms may be present, particularly myalgia, mood and sleep disturbance.


This definition criteria can easily include patients with depression. It has been proven by Dr Leonard Jason from De Paul University. You can watch this 1.5 hours video if you are interested in the topic.

In  contrast, the Canadian Consensus Criteria offers precision in diagnosing real ME/CFS patients via the definition. The cardinal symptom of ME/CFS is "post exertional malaise" (I hate the word malaise, it diminishes the symptoms) which means the patient experience relapse symptoms after exercise, or straining activities (it can include cognitive activity too). You can view the Canadian Consensus document here: 

Canadian Consensus Overview

So the psychiatrists in UK, authors and investigators of the PACE trials, most of whom have conflicts of interest as they are attached one way or another to disability and health insurance companies, picked 640 people with fatigue that lasted for the last 6 months, told them they have ME/CFS and randomized them into 3 groups, CBT (cognitive behavioral therapy), GET (graduated exercise therapy) and pacing of activities. According to their results, exercise and behavioral therapy helps treating the disease. And they went on to tell the whole world about it, just like the 4 papers in the journal Retrovirology calling XMRV pure lab contamination. 

Today the patients as the news spread on CNN, LA Times, NY Times, BBC, and other wires. You see the title like this one all over the web: "Study says behavior and exercise therapy best for treatment of chronic fatigue syndrome",  Us patients know that tomorrow when the doctors will read the news, they will see that as headlines and will refuse testing, prescriptions to patients that are really sick. 

The PACE trial did not study the sickest of the sick ME/CFS patients out there, the ones that can't care for themselves, the ones that can barely make it surviving, the ones that even stepping out of their doorstep will throw them in a relapse that may last weeks, perhaps months. For the regular person, it is hard to understand that there can be an illness that if you exercise, push your physical or even mental limits, you get worse and "pay" for it afterwards. 

PACE aimed at vilify patients for declaring themselves sick and unable to work and claim disability. PACE aimed at putting the fault on the patients instead of listening to them and researching bio-medical causes for their illness.  PACE is aimed at reducing the ever increasing costs of health care by refusing treatments of a whole disease that affects millions around the world. That disease happens to have vague symptoms, and taken one at a time, may not seem "that bad". However, if a specialist sees patients over and over,  he will be able to find patterns in the illness, and definitive lab results that will tell them that the immune system the endocrine system and the autonomic nervous system are dysregulated and causing lots of damage for the patients. 

Psychiatrists will only see that the patient is lazy- or have faulty coping mechanism, or is depressed. Perhaps they will be given a bonus for proving that ME/CFS is not a physical illness. It is only sad that the receiving hand is patients that have lost a good job, and a good life, or worse, haven't even had a chance at living their adult lives the way most of the population live it. 

In the 1980's, we had an HIV epidemics. The research was slow and government even slower to fund research into HIV because a group of men were labelled as being on the fringe of society. They spoke up and protested and eventually, they got treatment, however at high human cost. 

What the general population doesn't know is... there was likely another epidemic brewing in the 1980's, proven by the Incline Village, Nevada cohort and Lyndonville NY cohort. Some 25-30 years later, a fearless researcher called Judy Mikovits finds a retrovirus called XMRV in over 98% of a ME/CFS cohort, which is still refuted in UK as laboratory contamination. 

Patients around the world wonder... what is the future for them? Will the CDC, and their government  adopt the PACE trial results and recommends doctors around the world to stop testing patients for infectious causes that present with fatigue? Will the governments and insurance companies adopt PACE trial to get away from huge payments in disability for patients that can't work, instead of paying into research? Will more patients go homeless and without health care due to this research? 

It is scary times. Science VS money. Which one? 

To my knowledge this is the illness that receives the most discrimination, and it's not even recognized as such, because people shut down when you mention these 3 words: chronic fatigue syndrome. 

Latest WHAT ABOUT ME? teaser/trailer

Update on Myra McClure

Apparently, according to ME/CFS forums, Myra McClure has stepped down from the SEP committee. She must have received dozen of e-mails from angry patients asking her to resign.

Success. Now what's next? There is so much to be done.

If you haven't done so yet, read Mindy Kitei's blog post titled "We are not crumbs"

And Vincent Racaniello's podcast "This Week in Virology" interviewing David Tuller here

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. 

X-treme Unrest

These are interesting times. Scary. Hopeful. Stressful. Desperate.

Patients with ME have gone through the wringer since October 9th 2009 when the Science paper came out. From intense highs to the pits of the lows, when negative papers came out, intense fear, and panic set in.

See, some patients have been ill for decades. They have been left for dead. They have been insulted, ignored and marginalized.

For healthy people, it's hard to believe that someone can be this sick and yet get a good bill of health from their doctors office- Their GP have not learnt in school what ME/CFS is. All they know is, the blood pressure is good, the heart rate is regular, the patient is not blue, the CBC (complete blood count) is normal, must not be that bad huh?

Then comes the governments, whose strings are likely pulled by insurance companies. Why research a condition that seemingly has no biomarkers? Even the CDC says it's a psychiatric illness.

Patients, who have obviously lots of time on their hands, being housebound, bedbound, roam the internet, look up their disease, and what scientists do about it. The miracles of communication makes it that you can interact with scientists online. You can invite (or lure) scientists to patients forums and then you can beat the crap out of them. It's happened just recently.

Just like what is going on in Egypt, patients want out of their bad situation. And desperation makes it that any behavior, however unacceptable in a face to face situation is now seemingly quite acceptable.

This is total chaos. Patient forums is not for the faint at heart. And why on earth would patient tell scientists what to do? The situation is extremely complicated, the virus, should it be responsible for ME/CFS, is really hard to find, there is no funding, researchers are extremely reluctant to get into the field, the ones we already have are in retirement age. The more anarchy amongst patients, the least appealing it will be for incoming doctors and researchers.

It is hard to believe that patients are harming themselves doing what they are doing, but this is true. This is what's happening.

(I typed this while in relapse. Lots of headache and what we call brain fog, some call it dementia. I am sorry if this post doesn't make a lot of sense.)