Xtraordinary

Globe and Mail article

It is 2 Am and I am sitting at my desktop, in a daze. I almost fell off my bed when I read the news. It felt unreal. Now all of a sudden, we are legit? We are not malingerers anymore? We don't have to avoid doctors, or worse, speak really loud because we don't feel heard (or perhaps we thought they were deaf)?
The British Columbia minister of health has announced a 2 millions $ funding for chronic diseases such as Lyme, ME/CFS and fibromyalgia. 2 millions dollars is just about half of the yearly budget of the CDC CFS program that has been investigating false illness beliefs and sexual abuse as a child in CFS patients. 

The Globe and Mail calls these diseases "rare".  Rare? Well the BC government thinks there was only 30 cases of Lyme disease in British Columbia. However they are wrong since physicians have steered clear of diagnosing and reporting Lyme disease, and let's say that the canadian blood test is not sensitive at all.

We all know that fibromyalgia is not rare at all, the last number I saw was 340 000 in Canada. Everyone knows someone with this mysterious disease. But no one has paid attention.

The latest numbers for ME/CFS in Canada was 330 000. For British Columbia, apparently 28 000 people reported having the disease. Rare disease you said? Well we certainly won't rely on the government to count the cases of Lyme disease... It could be embarrassing.

The great news is a new clinic is coming, with a study, apparently. They even said they suspect infectious disease involved. You're telling me. They didn't mention XMRV, but I think they are thinking of breaking the news slowly, so they don't shock the citizens. Who knows, them citizens could get scared.

My thoughts are, what kind of clinic, what kind of studies are they planing? Could they please don't get in the habit of calling it chronic fatigue? Could they please not read anything from the UK, especially papers, or anything that has Wellcome Trust on it? Could they please phone Judy Mikovits tomorrow? She is expecting their call? Could they please collaborate with the Li- Ka Shing Institute of Virology in Alberta? Can they please leave the psychiatrist well away from us? Can they include patients in the decision making, to ensure that the best health care possible can be provided?  And my personal opinon, leave alternative medicine behind, focus on science. Focus on evidence-based medecine.

The BC Cancer Agency model is very successful, in fact other countries come and visit here in Vancouver to copy the model. Essentially it is a provincial program with protocols for every types of cancer and accessible for everybody in the province.  Attached to the BC Cancer Agency is a separate building that offers alternatives for cancer patients. From diet to therapeutic touch, to supplements and everything in between. It is a pay for service, but patients that desire that kind of service are happy to pay and are treated just the way they want to be treated.

Since here in Canada we have socialized health care, I believe that the care that is paid by the system will  consist of medical doctors and real science. At least I hope.

X-quoted

This is not my quote! I e--mailed it to myself, it came from last summer from a forum. I want to share it, from unknown poster.

"XMRV sequences are notorious for their false viral beliefs. They are lazy, slow replicators. They often employ the sick role and manipulate gullible herpesviruses CMV and EBV as enablers. They hide in tissue to avoid the viral responsibilities of circulating in blood, such as showing up for PCR tests. Malingerers!"

Excuse me!

My mailbox received a special notice today from our supposed to be national advocacy organization. I mean, I am not american, I am canadian. But still. They were supposed to be the leaders, the protectors, the supporters of all of us, the lobbyists and the people to trust they will lead us in the right direction.

I am talking about the CFIDS Association of America.

And I am very sad to report that they did none of that.

You can fnd the notification from Kim McCleary here: Putting Research First

Here is Mrs McCleary quoted:


"Recognizing our resources were spread too thin, our Board undertook an intensive strategic planning process to assess where the Association could make the greatest impact. The outcome? Our strategy to “stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.” We went to work immediately to implement this shift in focus, but what we didn’t do well was explain these changes to supporters and the larger community.

I take full responsibility for the confusion the inadequate communication about our strategy and focus has created within the community, and outside of it. With an expanded grants program to oversee, a new research network to foster, and the urgent opportunities created by research on XMRV and MLVs, we erred in doing the work without taking the necessary time to talk about our shift in focus. Now the lack of understanding about our organization has prompted questions and criticisms, and we find that we have fallen far behind the curve in trying to convey what the CFIDS Association of America is today. I extend sincere apologies for this breach of understanding and trust."

There is more to the message. But the flavor I get, and I may be wrong on that, is...
-I'm sowwwy... we won't do it again...
-Please forgive me, I am paid 180 000$ a year to admit that kind of mistakes we have done, and I am not going anywhere.
-"Our ressources are spread thin"... Yes, because you are losing the community's confidence and haven't done anything about it, and also because you are paid 180 000$ a year which takes away from research and advocacy money. Also... how about that 80 000$ faces of CFS picture tour that you did? Did that really help?
-What you are really saying, Kim,  is you are walking away from patient advocacy and concentrating only on research. What I want to know is... is it really worth paying say...8-10 people to coordinate research and research money, when a not for profit institute like WPI could do it more effectively with less staff?
-Are you also saying that you will not speak publicly again on our behalf, because the last few press releases were not really successful. perhaps even harmful?
-The message is... we're not really good at patient advocacy, so let's do research. Does that mean that patients are not deserving of a body that focuses on advocacy for ME/CFS, and that does a good job at it, like AIDS advocacy, or MS, or ... fill in the blank?

I think this e-mail has been a very sad turn of event, in my opinion, looking at the whole history of CFIDS Association of America. It seems to me that things started to stall seriously from the mid 1990's.

What is needed, is someone with back bones. Patients have been stood up for decades now. We need highly influential people, someone that will make a difference NOW, not in 15 years. We need changes now. The time is now.

And while I'm at it... CFIDS name is retarded. No one calls it that anymore. Not that CFS is any better. But part of the advocacy is advocating for a better name for our disease. Oh, I forgot, you are not advocating for us anymore. Then I would suggest you lose the "association of America" too.

There has been a petition going around lately, to ensure that CFSAC, NIH and the CDC know that CAA do not represent me and do not speak for me.  I have refrained from signing this petition. However today, I think I will sign it, because it is true, you inside voice is not representing me either.

Link to the petition

Khaly's blog post: CAA and advocacy, a guest commentary

Exposure in Wall Street Journal

The Wall Street Journal published another article by reporter Amy Dockser-Marcus on March 12th 2011.
Here it is: http://online.wsj.com/article/SB10001424052748704008704575639193973468402.html

Here is the short version:

"Patients, Scientists Clash on Fatigue

Patients say scientists haven't worked hard enough to find the cause of chronic fatigue syndrome. Scientists say some patient advocacy slows research."

Ok Amy... Slow down a little bit... 

Some patients have been ill for 30 years. 30 years is a long long time. Some 10 years. 10 years is still a long time to be sick with no health care whatsoever, problems with disability insurance (or worse, denial of said insurance) and being literally out of society. 

As everyone knows, a paper published in Science has linked ME/CFS to a retrovirus called XMRV. It has created  lots of  controversy, including the very quick words of Mr Bill Reeves who was at the head of the CDC, who said that the CDC would check for the claim of the retrovirus, but chances are they wouldn't find it. Indeed, they didn't find the virus anywhere, in their tired cohort or in their controls. Many other scientists also quickly published their paper with no luck in finding the retrovirus, using only one lab technique and not using the ones that were specified in the Science paper. 

Since then, there has been the first XMRV conference and many retrovirology conferences failed to invite Dr Mikovits to speak, including the recent CROI. 

Part of the history of ME/CFS proves quite similar to many scientists trying to shush the XMRV story. Dr Elaine De Freitas then scientist at Wistar, found a retrovirus association with ME/CFS and the CDC and other scientists failed her, and failed to reproduce her study. She got her funding to research cut off and while she was preparing to prove this retrovirus  she was involved in a car accident and got disabled with complications of this car accident. This was in 1991. No one even tried to find it. The topic was just dropped. 

So in 2011, here we are, patients whose only voice is the internet, when we are well enough to get there. Patients have joined forces, somehow, in spreading the message that good science needs to prevail, and that money needs to be spend in elucidating the cause of ME/CFS. 

ME/CFS is an orphan disease, no medical specialty is taking the illness under their wings. The funding has been minimal. Doctors have not learnt about the disease at school, or they have learnt that the patients' complaints are vague and perhaps of psychiatric origin. So over the years, patients have given up going to the doctor. Scientists have been told that researching ME/CFS was a career killer. So they turned towards HIV/AIDS research, perhaps cancer, safer options. 

The CDC ensured that us, the patients would not get biomedical testing by posting on their website not to test unless it was to rule out other diseases. The CDC also seem to take pride in their own research, and post the best of the best, link of CFS with childhood trauma here. 

Scientists, in this case, in Amy's paper, Stuart LeGrice, feel that patients are interfering with the research, and should leave scientists alone. Hmmm... Honestly, patients are quite worried that another extreme denial will happen and that good science will be buried to the advantage of organizations that want to save money, disability and health insurance. Governments. For them, status quo is good. And certainly unveiling lies, deceit, omission, mistakes, and gross incompetence would be embarrassing and very very costly. 

So what is the solution? 

Collaboration. Trust needs to happen. Patients need to be heard and should be included in government committees, conference planning and even (and especially) within the  CDC. Patients are the experts in their own disease. They should be considered as colleagues by researchers and physicians. 

Patients have all the time in the world and have researched their own disease and associated science. Dismissing this knowledge and the patients themselves delays research and finding treatments for us patients. 

I will close with a quote from Dr Jose Montoya, a prominent infectious disease doctor based out of Stanford University, who said this at his recent talk at the university: 

"Hopefully one day, my dream is that our medical community will produce a formal apology to the patients for not having believed them all these years that they were facing a real illness."

You can watch it here:

X and the clowns at the CROI circus

This week had one of the most important annual retrovirology conference in the world happening, CROI, hosted this time by Boston.

CROI

HIV has been the focus of this conference forever, with crumbs left for HTLV. XMRV has not been a huge focus in 2010, and in 2011, a full 1 hour slot was reserved to discuss abstracts accepted, along with a presentation by Vinay Patak on a different  day .

XMRV: New Findings and Controversy (List of Abstracts)

For the second year in a row, Judy Mikovits was not invited to speak or even present a poster or an abstract. Nor were Dr Ruscetti, Dr Alter and Dr Lo and Dr Hanson who all can find XMRV and exclude the possibility of contamination. Judging by the list of abstract it just sounds like the conference organizers  had an agenda : ensure that no XMRV research happen in the future.

UK retrovirologist Jonathan Stoye was the  chair of this presentation. Why CROI picked him, we will likely never know. He has also been brought from UK to the blood advisory committee in December to discuss the need to ban ME/CFS patients from giving blood. He was also the chair at the September 2010 XMRV conference where Dr Mikovits was not invited either to present, and after a lot of patient protests, she was given a ridiculusly short amount of time to talk.

Stoye made a fool of himself. He fell short of science. There is no way around this.

Here are a few quotes that came out of his mouth at the most recent conference:

"And so I think it's fair to say that the initial report of an association with CFS and XMRV has not yet been replicated. There is one paper, namely that by Lo et al, which it has been strongly argued is a support of the idea that a murine leukemia virus like virus is involved in CFS, however I'm not convinced by that paper, I'm happy to discuss it later on, but I don't think that that can be taken as positive evidence to confirm the study by Lombardi et al. So, not only has XMRV not been found in CFS patients, it has not yet been found in anything like the original 4% figure in control populations, so there's now considerable doubt about whether this virus is associated with XMRV "

"I predict there will be less and less interest in XMRV and association with disease."

Dude, this is what you wish... because you can't stand seeing someone other than you being able to find a retrovirus that will revolutionize the world of patients that were (and still) thought of having a psychiatric illness. This is called professional jealousy. So if I can give Stoye an advice, spend more time in the lab, culturing and not focusing so much on the PCR, and much, much less time talking with the boys in the retrovirology circuit.

And a last one, really precious... 

"I can talk about an anecdote among urologists in Britain. They were suddenly alarmed that the cell line they’d been using was loaded with virus. I think there are some of us who’ve been working with XMRV or related viruses for, well I’ve been doing it for 35 years or something and I know I’m negative. Or at least I was the last time I looked. "

Stoye may want to send his sample to VIP DX in Reno, because retrovirologists in UK can't find XMRV. 

A second topic of controversy is the comment made from Dr Jeanne Bergman, in the audience, from AIDS truth. Dr Bergman, if you google your name you will read this. The ME/CFS patients deserve an apology. 

" There is a curious correlation between people who don't believe in the existence of HIV or don't believe that HIV is pathogenic and people who do believe that they are infected with XMRV and some of those people, who have actually got AIDS like symptoms are taking ARVs, not for their HIV but for their XMRV. It's absolutely fascinating and I hope some day someone will write it up"

I have only been ill for 2 years, which is not long for the average ME/CFS patient. 10 years or more of being housebound or bedbound is fairly common. There are people in nursing home. Most patients have not even been diagnosed, or gotten appropriate treatments. For the lucky ones that got Ampligen as part of a trial, and improved, it was just too cruel to deny them the drug that allowed to get their lives back. What I can say, is if there is a small chance of me recovering enough to work out, go back to work, travel and enjoy life again, I would take whatever would make me recover. May it be antiretroviral, 

Ampligen, Rituximab, or others. I would also risk to be the placebo in a double blinded clinical trial. I would move across the country for treatment. It would be better than being judged by doctors that don't know squat about the disease so ironically called Chronic Fatigue Syndrome.

And lastly, the conclusions from the panel including Bill Switzer and Stoye, that XMRV is an infectious virus, but not related to ME/CFS and that lab workers should be tested for it. But remember earlier on he said that association with disease will generate less and less interest. 

The absence of Dr Judy Mikovits, Dr Ruscetti, Dr Hanson, and others have left the patients very upset since the CROI conference presented a very unbalanced view of the state of XMRV research. But just a few days later, we learnt that all this nice people, AND Dr Luc Montagnier, one of the co-founder of AIDS, were in South Florida discussing the real matters, Ampligen and the retrovirus. You can see the article here.

That news, and many many recent  positive articles in the New York Times and Washington Post revived the morale of the troops

Amy Dockser Marcus, WSJ, March 5th 2011

Leonard Jason, WSJ, March 5th 2011

. 

David Tuller, NYT, March 5th 2011

We can only move in the right direction from here. There should be news from serious studies, including one that have happened in Calgary, Alberta.