Saturday, June 11, 2011

Can Science keep up with "good" science?

I am fairly new in the world of ME/CFS. 2.5 years of being sick is considered rookie of the year, compared to the veteran warriors out there who have been stuck with this disease for 10-20- even 30 years. 2.5 years of this hell, facing discrimination, bias, disbelief on top of being ill, and trying to cope, that's long enough. I can't imagine being sick for 10 or 20 years. I had plans for my life. The journey has changed direction drastically, and there doesn't seem to be motivation from the governments around the world to invest in research for this disease.

In October 2009, just a month or 2 after I realized that I may just have ME/CFS, Lombardi et al got published in the journal Science, announcing the detection of a new retrovirus in the blood of patients with ME/CFS and also in the blood of healthy control but at a much lower rate.  I remember the day like yesterday. I had a dr appointment that day and brought the abstract to her. She didn't fall off her chair, and I couldn't understand why not.

See, there is a bias out there. Chronic fatigue, like many call it since it's shorter and more convenient, is not considered to be a real disease. The CDC says there are no biomarkers, they must be right. They also say that the treatment for this disease is anti-depressants, graduated exercise therapy and cognitive behavioral therapy.  The bias started there. The CDC is supposed to be the authority, how can they be so far off, and why? What interest does the CDC have? Who is pulling the strings?

Soon after the Lombardi paper published, the head of the CFS program at the CDC announced that they would look for the retrovirus but it would be likely that they wouldn't find it. Dr Reeves is a psychiatrist. They didn't find it, as it happened in 2010, and in fact at the same time another replication study results was scheduled to be published in PNAS (Lo et al), however the CDC stopped them from publishing and that delay lasted several months.

Dr Coffin, prominent retrovirologist was invited to the October 2009 CFS Advisory Committee meeting in Washington and said that the Lombardi paper was as good as it gets for a first paper. He changed his tune a year later to claim contamination by mouse virus, leading to Retrovirology Journal to publish not one, but 4 different papers claiming that XMRV was just contamination or a lab artifact if you will.

Then just last week 2 more papers were published this time in Science, counteracting the claim of the retrovirus which prompted the editor of the journal to issue an expression of concern to Lombardi et al and requesting them to retract the paper. Dr Mikovits answered back with a "No way Jose!" (well something like that)

So here we are, us patients, waiting. While some are waiting for clinical trials and treatments, others felt they could no longer wait and decided to treat themselves with antiretrovirals. And guess what, for some of them, it's working! However some authors of negative studies like Ila Singh made it clear that patients should not get access to antiretrovirals due to toxicity issues. Dr Singh forgets that Tenoofovir is given to prevent HIV in gay men and also in women in Africa, so why would it be so toxic for patients with ME/CFS who don't even have a single drug approved by FDA to treat their disease?

Epidemics happened in the mid 1980's. Just about at the same time as HIV. However patients don't usually die of ME/CFS. Or at least it is not the official cause of death. And the CDC felt the epidemics were not true epidemics, and thought patients and doctors who cared for them were "hysterical". In an effort to contain the "hysteria" CDC decided to name the disease who was well defined in the past as myalgic encephalomyelitis, now chronic fatigue syndrome.

So doctors that see "chronic fatigue syndrome" in someone's chart as a diagnosis  will consider all symptoms or problems as non urgent, not real, or not reasonable. The name discriminates more that one can think. Doctors have not learnt in med school about ME/CFS. Not many knows what to do, how to diagnose it (there are a few diagnostic criteria) or how to treat it. In fact, the doctors who have been there at patient's side all along, Dr Peterson, Dr Cheney, Dr Klimas, have been given the cold shoulder on more than one occasion.

So where are we going with all this?  Patients are still waiting. There is still no more money allocated to research of ME/CFS, and ME/CFS still trails at the bottom of the list in the NIH funding competing with hay fever, climate change and gallbladder illness Check it out here. The big scorers, the usual HIV/AIDS, cancer, prevention, diabetes, cardio-vascular.

Despite a "State of Knowledge" workshop at the NIH, gathering experts and portfolio holders, and over 1 million of patients- a conservative number- just in the US, no new money has been announced, as the US government is in a financial crisis (though the military budget and NASA budget is ever expanding). Never mind that 1 million of people is debilitated and perhaps are transmitting this disease to their families. Never mind that these people could be you or your loved ones. Never mind that they have been sick for decades with no health care.

From a patient point of view, it is really hard to accept the reality that my tax money generously donated during the working years is not going to bail me out and that my government is not doing anything to get me healthy. It is really hard to accept that if I had cancer, I would already be a survivor and a hero, but if I have ME/CFS I have a malingerer status. It is really hard to accept that I may never go back on my bike again or travel the world again or enjoy the things I used to enjoy in the past. The cause of that would be poor decisions from the government and bias and discrimination.

So in 2011, the Whittemore-Peterson is still doing great research, however they have to fight allegation that their retrovirus is a contaminant, thus slowing their great research and our chances at prompt clinical trials and treatments. The WPI is still going underfunded by government grants and you can bet that the funds will dry quickly if more contamination papers get into the journals and the media splash that follows.

I still don't get the argument that blood of ME/CFS patients is more contaminated than the blood of healthy control- how do Coffin explain that? Contamination theory ain't working. People do not make antibodies when exposed to contaminant. Why isn't the Lombardi et al not yet replicated and getting papers saying they proved Mikovits wrong? Why do people do not believe that the Lo et al paper was a true replication? Why are Stoye, McClure, Coffin so adverse to a retrovirus affecting patients with ME/CFS, is it the disease, or is it the fact that they didn't find it despite spending so much time studying  MLV's ?

As research is going on, the world is watching. Patients can no longer be silent and through the WWW, we have a voice. We are watching. We are asking the scientific community to take a good look at this disease and pay attention to what's going on. Patients need to politics to stay in one corner and the science to remain in a different corner. Governments need to fund research and take a good look at what has been going on at the CDC for so long. Equal opportunity for all is not happening for us.

Please help!


  1. Great job Kati.

    What really resonated for me was the idea of having paid our taxes - then on getting sick, finding out that the social safety net has a big huge gaping hole for people with ME/CFS was really shocking to me. I had thought the system worked fairly well before that - had no clue that there were areas where people were basically left to die.

    And to find it out when so sick and barely able to move or think, let alone cope with all that happens when one gets that sick - so so shocking, making a horrible situation horrific.

  2. Thanks Leela. Yes, i feel our health care system in Canada fails us badly.and yes it is horrifying.

  3. Brilliant Kati - healthcare systems across the Globe are failing their patients. I've been sick for three years now but what I have learned in that time is staggering. I am HHV6+, awaiting to take the XMRV test (too scared), I want to work and get my life back and will fight and support the WPI till I do so:)

  4. Thanks Gabi, me too, I am in warrior mode.We need to find ways to speak up outside our ME/CFS inner circle.

  5. Thank you for for asking the questions many of us have, Kati!