Simon Wessely goes crazy after the new ME Int'l Criteria Consensus publication

It's been a crazy summer.

Patients have been waiting for news. Any news. Our lives have been put on hold after the infamous Lombardi et al. paper.

Science actually placed an expression of concern on it- warning everybody in the science world that maybe this XMRV thing is not going to pan out since no one can find it and since Coffin said so. Dr Mikovits and her team are standing their grounds. It seems that the one that can make a difference is Ian Lipkin whose XMRV study results due by the end of the year can make or break XMRV in humans and MECFS patients. The opinions are so polarized, that apparently you are either a believer or a non-believer. Apparently, Dr Lipkin remains agnostic, which in my opinion is a good thing.

One of the big surprise of the summer has been the publication in the Journal of Internal Medicine of the new International Consensus Criteria. Co-authored by 26 experts around the world, this paper took the Canadian Consensus Criteria and gave it steroids. Refined, more precise, and easier to use. This published online on July 21st. This date is important because a few days later Simon Wesseley will start attracting the attention on him and other few who allegedly received death threats from ME/CFS patients.

Another paper of importance is Dr Jason's work, Small Wins Matter in Advocacy Movements: Giving Voice to Patients (Aug 20th) In the space of a few pages, Dr Jason discusses the history of our disease, the social construct, the prejudices, and almost in a whisper in patients' ears, tells us how to win the small battles in order to get our voice heard. In my opinion this paper deserves more attention and publicity. Dr Jason has been a strong advocate for all of us, I can't thank him enough for the work he has done.

The flavor of the summer, though, revolves around Simon Wessely who has reported death threats quite publicly, followed by scientist (who can't find XMRV) Myra McClure. You can see the links following which relates to CFS and what may have triggered Simon's behavior. Very interestingly, Simon "came out of the closet" exactly 48 hours after the new International ME Criteria Consensus came out. Coincidence? Not at all. The proof is in the pudding... Read the very last link. Simon is deep in conflicts of interest. He is at war, so to speak, with a group of disabled patients that have been left behind more than once, and for over 3 decades now.



Loss of capacity to recover from acidosis on repeat exercise in Chronic Fatigue Syndrome- A Case Study (June 30th)

Dutch doctors blunder by dismissing symptoms in XMRV positive ME patient as psychosomatic and fail to diagnose Metastatic Breast Cancer (July 4th)

Too soon to Translate? An editorial in Nature (July 7th)

RCGP, a.k.a. the Mrs Simon Wessely College tries to reclassify ME/CFS again (July 9th)

EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients-A case control study (July 13th, BMC)

Murdoch and Vaccines: Exposure of Crimes Reveals a Much Larger Story (July 17th)

James Murdoch is still supported by GlaxoSmithKline (Age of Autism-July 18th)

His Work Has Gone Viral (Dr Coffin discusses XMRV- July 18th)

Dr Bieger announces he can find XMRV in the blood of patients with ME/CFS (July 18th) 

New ME International Consensus Criteria (July 20th, Journal of Internal Medicine) 

Science versus Psychiatry – again Malcolm Hooper and Margaret Williams 22nd July 2011

Chronic fatigue syndrome: understanding a complex illness (4 authors) July 28th

The real victims of ME are those with the disease (July 29th)

'Torrent of abuse' hindering ME research (July 29th)

BBC Radio 4 Today: 'Malicious' harassment of ME researchers (July 29th)

ME researchers 'receive death threats from sufferers'  (The Telegraph July 29th)

The Economist: Head Case (July 30th)

Professor Hooper: Wessely’s Words Revisited (July 30th)

About "Shoot the Messenger and see it that will cure you" by Rod Liddle in The Sunday Times July 31st 2011

Hillary Johnson: Cry Me a River (Aug 3rd)

Interview with Simon Wessely (originally by Stephanie Marsh in the Times Aug 6th)

Guardian: CFS scientists face death threats from militants (Aug 21st)

Hillary Johnson: Animal Magnetism (Aug 21st)

Discover Magazine:Chronic Fatigue Syndrome: Death Threats for scientists? (Aug 21st)

Health Activists Launch Campaigns of Abuse Against Scientists with Whom they Disagree (Aug 22)


Times Higher Education: Scientists researching CFS-or ME - are being targeted by activists who are now as dangerous as animal rights extremists (Aug 24)

Simon Wessly's piece in Spectator: Mind the Gap (August 27th)

Dr Malcom Hooper's response about Simon Wessely's allegation of death threats (Aug 25th)

The big Issue: Extremism has no place in the quest to find a cure for ME (Aug 28th)


Protesters have got it all wrong on ME (Aug 29th)

ME patients considered dangerous (Aug 29th)

Professor Simon Wessely's conflicts of interest

Obviously Simon got the media on his side. They view him as a victim. And how dare we, patients reject his medicine and his science?  Not only he doesn't want to admit being wrong, he continues to do damage to the most vulnerable in our community, cutting off sick benefits,  "sectioning" patients (mandatory psychiatric hospitalization), causing suicides and yes, ruining people's lives.

Simon's reach is international- sadly. We will never know the depth of his impact with the insurance companies and government entities, policy making, etc. This BS has been going on for decades! It is unbelievable as a patient to be caught in this, to be sick and not being able to access competent, science based medicine.

We got rid of Reeves last year (or was it this year, I forgot!). Time for getting rid of Wessely.

Letter to Mr Obama

Dr Obama is recognizing the 30 years of research, clinical trials and science in HIV/AIDS that has improved the lives of millions around the world. From uncontrolled epidemics, to a stigmatize disease in the 1980's to giant leaps in science and treatments and human rights 30 years later.

However not many know that there was other epidemics in the 1980's, that were ignored by governments and most doctors, and still continues to this day. ME/CFS or still sadly called chronic fatigue syndrome is still a mystery for scientists, stigmatized by society, government and doctors and its sufferers are left for dead, litterally.

In response to a blog article I decided to reply to Mr Obama. I sent him the letter.

Mr Obama, 

While thousands are researching HIV and AIDS around the world, and billions of $ in research has been allocated, there is a group of patients that suffered similar epidemics in the 1980's but has been grossly ignored, and naked in a demeaning manner to trivialize and minimize the suffering of the people. Tell most doctors that you have chronic fatigue syndrome, and due to stigma and lack of knowledge, chances are your health troubles will  be discounted and you will be sent home without proper care. 

Many, many patients have given up on health care due to the stigma barreer and loss of trust in the health care system, or they can't afford the care anyways due to loss of insurance benefits and the loss of disability benefits. There were epidemics of ME/CFS in the 1980's, Mr Obama, discounted as hysterical illness by epidemiologists at the CDC. To this day, the CDC still broadcast on their website that the best treatment for ME/CFs is therapy and anti depressants despite being recommended many many time by the CFS advisory committee that there were severe flaws to theor program.

There are over a million sufferers across the USA and 17 times more that amount around the world, waiting for research, clinical trials and treatments for a very debilitating disease that not only affectswomen, but men and children. 

Mr Obama, scientists are being told that studying Me/ CFS would be a career suicide. doctors do not even learn about this disease in med schools, nor this disease belongs to any medical specialty.  Doctors that treat, the very few of them are marginakized by their colleagues. 

Patients do die of this illness only it is not tracked by statistics. Cancers, heart disease and suicides. the ones that are living are in a living death situation, housebound, bedbound with no help whatsoever. no patients would argue that this is a Tuskegee eperiment.

Patients wonder if the recent discovery of a link with retrovirus XMRV with chronic fatigue syndrome will be phased out. The research that have come out from the Whittemore-Peterson Institute have come out of recognititon of human suffering and that an nfectious link has been made and now violently repressed by scientific communtiy without deçent attempts at relication of the initial study by Lombardi et all in 2009. i request that Your government independantly investigate the politics behind XMRV, science and chronic fatigue syndrome.

There is much to say, much discrimination and injustice and this has to stop. 

thank you, Kati sick for 2.5 years.

Expectations

Patients with ME await with much impatience for Thursday and Friday April 7th and 8th 2011.  There will be a very important conference at the NIH (National Institute of Health) called "The state of the Knowledge". You can view the agenda here. Interestingly,  the conference is overbooked and some will have to watch it from a TV in an adjacent room- I feel really sorry for those who booked a flight and won't even have a chance to applaud Dr Mikovits in person.  2 of our long time advocates and also patients, Pat Fero and Mary Schweitzer have even been allocated 10 minutes each to speak. They have been part of the organization committee, which provides a certain satisfaction that patients have been consulted for this. I personally am very thankful for Dr Mangan at the NIH for coordinating this conference and dealing with the glitches all along.

It is meant as an opportunity for scientists and physicians of the NIH to network and mingle with the experts in ME/CFS and (hopefully) offer help and funding for further research. This is greatly needed, since patients with ME get 3.64$ per person, per year, in funding from the US governments (that is not counting the children). Khaly blogged about it here and the source of this information comes from Pat Fero, a long time patient advocate who lost her son to cardiac arrest at age 22, as a consequence of ME/CFS.

Yes, people die of ME/CFS. Cancer, heart problems and suicide. You can view our memorial list here. It is humbling to read through and think about human suffering.

This meeting was long time coming. In fact, the last time there might have been such meeting was in 1992... Of what I read, the agenda was much similar. (Look it up here) So, some 20 years later, nothing has changed. Our trustee pioneers like Dr Peterson, Dr Klimas, Dr Cheney, Dr Lapp, Dr Jason, Dr Hyde Dr Bell and the likes  have been ignored for 20 years, and more. Funding for this illness has been abysmal, yet the society costs of disability have been astronomical.

My personal opinion is that because the CDC has deemed this disease "benign", "psychological" and "no tests are necessary", because the CDC has stalled research and made the diagnosis definition so hard to figure out, because the CDC has deemed the illness "a woman's illness", patients are been left for dead, and left to deal with it all by themselves. The CDC has prevented research on viral causes to happen from early on, when they were called to investigate epidemics in at least 2 different areas, Lyndonville, NY and Incline Village Nevada. In both cases, the local doctors were made fun of, and after the visit of the CDC, they never heard of them again. This is criminal.

The CDC worries more about flu and an obscure illness in the middle of Africa that affects 3 people than  millions of people that have been debilitated for decades with an illness that they can't even define or for that matter, even find the right cohort for. In fact, these days the CDC is researching "fatiguing conditions" and not ME/CFS, probably a strategy to quietly exit the controversy and hot water they've been in for the last 3 decades.

So this week, all patients are expecting fireworks. Patients want to regain their lives and depend on scientists, and funding for research and clinical trials. It will be an opportunity for Dr Mikovits to explain her science, and how to find XMRV, the old fashion way. She will face Dr Coffin who is apparently a prominent retrovirologist gone bad- he decided that XMRV was lab contamination, and published many papers in this regard.

The stakes are high, at least for us, dear scientists. This is your opportunity to shine and make a difference in millions of lives around the world.

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!"

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.

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.)

Will they hear our whisper?

This is my story but this is also the story of some 240 000 + human beings in Canada who have no medical care. There are 17 millions of us around the world. 

My story

I got ill in November 2008. I was working as a nurse and had to leave in the middle of the day with severe flu like illness. My manager was not impressed. 

10 days later, still the same flu symptoms but no upper respiratory tract infection. My doctor tested me for Epstein Barr virus, it was positive. (acute mononucleosis). I am 41. 

Employee health told 4 weeks off work and then I would be brand new and ready to go back to work. Unfortunately I didn't fit that mold. I tried twice to return to work but it was too hard. Then I got hit with a bad case of gallbladder issue, curiously without stones, and got hospitalized for 2 weeks. And everything got downhill after that. 

I was expected to recover for 8 weeks after surgery and then return to work. However I had really strange symptoms 4 weeks after surgery, and my recovery really stopped. I was having a hard time being upright, I was dizzy even sitting up, let along standing. And then I was terribly sun sensitive. I had perception problems, making driving quite dangerous for a week or 2. I couldn't make sense of all these symptoms and my doctors thought I was faking and that I didn't want to return to work. She wanted to give me more anti-depressants, saying this is how you get treated. 

In September 2009 I started having chest pains and shortness of breath and the doctor did nothing. A month later I still had symptoms and then I was sent for testing after expressing deep concerns for my care. My doctor had for idea that all my symptoms would go away by themsleves. I had to go through a functional assessement for my disability insurance which involved 2 days of tests to see if I was apt to return to work. The tests are not even showing how sick I am. After 2 days, the physio thought I should get intensive physiotherapy for 6 weeks, and then quickly go back to work. However just one day after testing, I got generalized joint pain and general relapse of all of my symptoms, and more, that lasted for 3 months. This is the nature of our illness, and not many believes us. 

In January after waiting for 7 months for a rheumatologist appointment, I was told by the doctor she didn't do chronic fatigue syndrome within the first 5 minutes of the interview. I then saw an infectious disease dr at St Pauls hospital, who ignored my 4 months cough- and had nothing to say about my illness or possible infectious etiology. 

That is when I knew that there was no health care for me in British Columbia. Having worked with cancer patients has not helped me understanding this truth, because honestly, cancer patients get world class care. Everything is taken care of for them, from financial issues, to emotional coping to driving to and from treatment and appointments, from as far as Hope, by volunteer drivers. You get all the treatments that you need and if you want to be treated till you die, so be it, our very generous health care system will pay for the very expensive drugs. 

In June 009 I went to see Dr Nancy Klimas who is one of the very few specialists in chronic fatigue syndrome- or ME- in the world. She has worked with AIDS patients, Gulf War Syndrome patients and works at the university of Miami as an immunologist. In the spring I had the rheumatologist to apply to the government for out of country health care funding, which was denied to me for the reason that Dr Klimas' treatments were experimental. Dr Klimas, while being a researchers and writing papers, has seen and treating patients with ME/CFS for the last 25 years. She diagnosed me with an autonomic nervous system disorder called POTS (postural orthostatic tachycardia syndrome) ad got me started on medicine including atenolol. My family physician- and the ER physician- didn't even know what it was. And it explained my chest pain! Dr Klimas also assessed my immune system and virus reactivation, which happen with this disease. And it ends up that I have immune abnormalities, viral reactivations, all related to the ME/CFS disease. She recommended I get prescribed Immunovir, a drug that aims at strengthening the immune system. Interestingly the drug is not approved by the FDA, but there is a pharma company in Canada that gets her prescriptions, and then the pharma company contacts the patients in the US and it gets sent to them directly. For Canadian patients, it doesn't work that way. Since it is a prescription drug, it must be prescribed by a canadian doctor. No doctor wants to prescribe it to me, my family doctor says she is worried of getting in trouble because of it, and 2 of her colleagues have told her not to. The infectious disease doctor didn't want to prescribe it either. There are almost no known adverse effects associated with the administration of this drug. 

Subsequently to my appointment in Miami I saw a respirologist (and after 11 months of serious coughing was diagnosed with asthma) an immunologist (who thought that Dr Klimas's testing was just like a big fishing expedition), an ENT, I had a sleep study, and a notice from my disability insurance company that they were stopping my disability benefits because I haven't been able to prove that I am unable to work. In their letter they explained that my skin, head, ears nose and nails were "fine" therefore I should be able to return to work. To this point, 15 months after getting ill, I am still getting no treatment at all, and no recognition that ME/CFS is a real illness. When I tell people that I'd rather have cancer- it's because cancer patients have a status in the society. They are ill. They get respect. 

Patients with ME (the name chronic fatigue syndrome is insulting and misrepresenting to the patient community) have no voices. A lot of them are not strong enough to fight for their rights, and some of them are not even able to attend to their most basic needs. Some of my online friends have been bedridden for 20 + years. They have never been able to work marry, have children. A lot of the misconceptions of ME/CFS lies to the facts that it is a woman's disease, and that it's a psychiatric illness. Even the CDC, center for disease control wants to give the impression that CFS is not a serious illness, by propagating poorly constructed research (association of ME/CFS with sexual abuse as a child, making sure that no physicians tests patients for viral reactivation or for nervous system abnormalities) 

The story with the CDC

When our doctors need to find information they don't know about a disease or condition, they refer themselves to the CDC website. If you need information about HIV you might be in luck. However when it comes to chronic fatigue syndrome, it is a disaster. Here is the story,  as told by the author of Osler's Web, Hillary Johnson (Osler's Web). In the mid 1980's  2 internists from a small village of Incline Village near Reno Nevada, found that over 200 people were found to have a severe flu-like illness but never recovered. They were worried and called the CDC to investigate the epidemics. The CDC sent 2 junior epidemiologists that seemingly were more interested in casino and outdoor ventures than meeting with patients. They reported back to the headquarters in Atlanta with the conclusions that both patients and doctors were "hysterical". The same kinds of cluster outbreaks have been noted in the last few decades, but this time around the CDC decided to call it a different name-  and to downplay the severity of the disease called it chronic fatigue syndrome. The story of the CDC with CFS is long and complicated, but suffice to say that they have been guilty of using the government funding for other things than researching CFS,  and very little has been accomplished in terms of biological illness. In fact, the CDC researches the psychological aspect of "chronic unwellness" and finds their cohort subjects by random telephone calls asking if any of the members of family has been fatigued over the last 6 months. The CDC has been known to "diluting" the CFS definition criterias to include depressed patients, which in turn skew the scientific research and cheats the patients of adequate care. To this day the CDC website tells all the physicians in the world that CFS is treated with cognitive behavioral therapy and graded exercise therapy, amongst other things, and anti-depressants.  They recommend not to investigate the disease through viral testing or neurological testing unless it is to rule out other diseases. 

XMRV and links with ME/CFS

October 9th 2009 begins a new odyssey for millions of patients with ME/CFS. The most reputable scientific journal on the planet, Science, publishes a paper from a small research institute in Reno Nevada, with Dr Judy Mikovits at the helm, and announces a link between CFS and a new retrovirus called XMRV, which has been found some 3 years before with patients with an aggressive type of prostate cancer. 

Science paper

In this research, 67% of CFS patients tested positive for the retrovirus, using several methods of detection, compared to 3.8% in the healthy controls. Later Dr Mikovits said that they found XMRV in 98% of the patient population. 3.8% of the healthy controls means that a retrovirus is circulating in the general population without giving symptoms to the carriers. It also means that these people give blood and that likely this retrovirus is present in the blood supply. 

There are only 3 retroviruses to be known in the human specie: HTLV, which can cause leukemias and lymphomas, HIV and XMRV. 

Retroviral association with chronic fatigue syndrome is not new. Physicians implicated with the early outbreaks in the 1980's had suspicion of retroviral infection especially because they would see viral reactivations- which also happens with HIV. But with the lack of research funding, lack of interest for a disease called "chronic fatigue syndrome" and more than often mockery of the medical body, research did not happen. Dr De Freitas, a scientist in the US found a retrovirus of another kind in the early 1990 but this claim was refuted and quieted down by the CDC who refused to visit her lab in Philadelphia.

The Whittemore-Peterson Institute arose from the ground, litterally, out of love for a daughter. Mr and Mrs Whittemore have a daughter who got ill at an early age and were very frustrated with the lack of health care, the disbelief from the doctor that their daughter was really ill, and decided to fund an institute to find the answers not only for their daughter but also for patients just like her who never got answers as of why they were ill and how could they be treated so they could go back to a normal life. Dr Peterson is one of the doctors from the Incline Village epidemics, who worked relentlessly at trying to find out a cure, and they found a key researcher, Dr Mikovits to help them with the science part. The WPI has been (don't quote me on that) entirely privately funded.

Whittemore-Peterson Institute

After the Science publication, a few studies tried to replicate this study but the attempts were very weak, with trying only one method and not selecting the patient cohort carefully. Patients also noted that psychiatrists were leading these researches, especially in the UK and Netherlands where ME/CFS is viewed as a psychiatric disease and treated the same way multiple sclerosis patients were once treated a few decades ago, as "hysterical".  Patients still to this days get hospitalized in psychiatry and denied physical care and left soiled because they are unable to go to the bathroom by themselves. The CDC attempted such replication study, and despite being given 20 positive samples by Dr Judy Mikovits at the Whittemore-Peterson Institute, they found no XMRV in their patient cohort, and no XMRV in the control. 

But 2 scientist groups joined efforts to do a good replication of Dr Mikovits' study, and in August 2010, Dr Alter from the National Institute of Health and Dr Lo from the FDA published a XMRV study finding XMRV in 87% of their ME/CFS patients and 7% of blood donors. They published in PNAS, another very reputable scientific journal. 

Alter/Lo paper in PNAS

Still to this day, scientists are going to war with this, the nay sayers claiming contamination with mice DNA. Dr Mikovits and the scientists that found the retrovirus stick to their guns, saying that the retrovirus is hard to find- it is small and present in low copies unlike HIV. However HIV was also difficult to find in the early years and its discovery was also enmeshed with political, ethical and moral issues. 

The patients

While the controversy continues on the science side, patients are waiting. Some have been in bed for decades. Some didn't quite make it and chose to end their lives. Some children with ME/CFS have been removed from their family with accusations of munchausen by proxy. 

Ryan's story

1/3 of the patients from the Incline Village epidemics developed a rare form of lymphoma called Mantle cell lymphoma and other blood cancers. Patients also die of heart diseases. We will never know the human toll from this diseases because rare are the death certificate that mention ME/CFS. 

With the increasing possibility of networking in your own bed, patients have gathered on social networking sites. However advocacy for yourself, when you have trouble cooking, showering or even communicating is really difficult. Stress is known to exacerbate the symptoms and can easily induce a relapse that can set you back weeks if not months. Patients have no voice. Isolation over time, loss of friends and family members, and inability to make new ones only make it more difficult to reach out and fight back just the way HIV patients  fiifighted in the 1980's. Since disability insurance is incredibly difficult to get with the lack of support from the doctors and the lack of biomarkers, patients face poverty and financial disasters. However in December, monies were raised by patients to fund an ad  in the Washington Post warning the populations of this new retrovirus, because the alarm has not been rung. Research funding is still less than most diseases for both the US and Canada. When cancer and AIDS and diabetes get hundreds of millions , if not billions in funding, ME/CFS got 5 millions last year in the US and less than 1 million in Canada for the last 10 years!!! 

ME/CFS Worldwide Patient Alliance Website

According to Statistics Canada, there was over 240 000 patients with ME/CFS in 2003. This number is astronomical to me, knowing how un-educated our physicians are about the disease. Not all doctors are aware of the new retrovirus. 

Patients have taken in their own hands to send their blood in the US to get tested, and therefore seeking validation to what ails them. As for treatments... we are still hoping. A study coming from Utah by Dr Singh has found that 3 anti retrovirals have proven to be effective IN VITRO against XMRV. AZT, Raltegravir and Tenofovir. Some patients have convinced their physicians to prescribe these drugs for them, because there are no clinical trials to date and they feel that it is their only chance to get better. 2 physicians with MECFS and XMRV are taking these drugs, one is blogging about it and sharing her experience. 

Dr Deckoff-Jones' blog

A patient's father has suddenly become a patient advocate and share his thoughts on the politics of the illness  and how difficult it is to see a loved one suffering: 

Patient Advocate's Blog

And a patient with XMRV, university professor, sharing her thoughts as a patient : 

Mary Schweitzer's blog