Wednesday, February 03, 2010

"How does this finding change the world of Chronic Fatigue Syndrome?

Number 1: It ends the debate. CFS is not, and never was, a psychological disorder. Those who are ill have always known this. The physicians who take care of them have always known this. And now, finally, those who have attempted to keep patients from receiving medical care for this disease know this. Number 2: This finding demands serious attention. Attention in the form of research funding. Just as our government has responded to the threat of HIV and other serious, emergent infectious agents, this finding demands significant and responsible action from our national health agencies. ... Patients deserve to know if they are infected, and to be offered effective treatments that will stop the progression of their disease. "
Annette Whittemore

This past October saw (as is, by now old news around the CFIDS niche of the blogosphere), the publication of a study in Science that linked a recently found retrovirus - XMRV - to Chronic Fatigue Syndrome, Fibromyalgia and various other "neuro-immune diseases." The link was as strong as 90-96% of the CFIDS affected patients vs 4% of control subjects testing positive for XMRV. According to the Whittemore Peterson Institute (principal investigators), "The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections."

Of course, the study sampling was small (only 200 patients), and it did not prove causality vs. comorbidity. Also, although the retrovirus was detected, the researchers are still unable to say what, exactly, the XMRV infection means to those who are infected, so there is still a lot of work left to be done, but what it does mean is that there could soon be blood tests available for XMRV, and that treatment trials - including those of many already known and funded anti-viral medications - could follow soon after.

For the most part, I'm going to try to keep this post from being too personal, since that's what transformed my other drafts from being 'just a tad too long' to being 'too long to post because no one will ever trudge through all of that.' However, I do have to note here that being able to type that sentence, to include the words "treatment trials" and know what they would mean for my life, and for the lives of so many fellow CFIDS sufferers: Well, I just can't explain the kind of hope that gives me.

To say that this is the first, real leap of hope I've had in regards to my medical conditions in at least 6 years is to downplay how important this news could be for me. I've talked before about laying in the MRI tube, with its infernal clanking and banging, shot up with radioactive dyes and praying that this time, they just Find. Something. Anything. Just to know - just to have the answer, know the steps to follow, just to have some clue. It's not an impulse I am proud of - that there have been times I would rather know I was dying than have to live with the not knowing - but the impulse has been there all the same.

"And so you can generate a hypothesis, much like the HIV hypothesis, is that you get an acute infection, you develop an antibody response, ultimately you have a failure of the immune system, and we postulate here that ultimately may be an NK cell numbers and function, resulting in very significant and prolonged disease. That is a model that could be fairly easily tested, and I think that that is something we should do rapidly and judiciously. "
Dr. Peterson, CFSAC committee meetings, 10/29 & 10/30

There's also no small measure of joy in knowing that I might be able to prove my illness to people - to have my experience validated, not just by those who know or love me, or just by those who suffer the same ways I have, or just by the rare doctor who 'believes' what I am saying - but by every damn body. So that I won't have to be afraid if I require a trip to the emergency room, knowing that I won't be met with distrust and derision, that I won't be sent home in tears, or told to wait for the psychologist to come down and see me: that I would be treated as a person who is sick and needs care should be treated.

There's a lot of talk now about invisible disabilities (at least in the online communities I frequent), and I think that that is awesome, because there needs to be a lot of discussion about one of the most marginalized groups in our society. But something I think that often gets overlooked, is that within the medical profession, there is too often a divide between how they treat what they can see - even if it means that it's only visible in a blood test or a CAT scan - and what they can't - for example, things like chronic pain or mental illnesses. Even though I know that no proof should be required, I also know that in the real world, it still is.

Witness the ableism in this excerpt that justifies my experience even as it nullifies someone else's - From Reno Gazette Journal: "You talk to CFS patients and they say, 'Thank God I have a deadly retrovirus. Thank you,' because now that makes their illness real. They aren't just crazy," Mikovits said." At the exact same time that the XMRV findings were being released, I also came across these two pieces of research - The first was that the at a meeting of the "2009 American College of Rheumatology/Association of Rheumatology Health Professionals, Anthony Russell, MD, and Leslie Crofford, MD, debated whether fibromyalgia is a true disease, and discussed the best way to approach patients who present with the characteristic symptoms." And the second is a study out of the Netherlands that discusses two commonly used "therapies" for CFIDS/ME - Cognitive Behavior Therapy and Graded Exercise Therapy - and concludes that "it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET." And yet, those are still recommended by the CDC and widely used as "treatments" - almost exclusively in some countries.

These are the attitudes patients have to contend with, in the real world - to be GRATEFUL that you are living with a deadly retrovirus, because otherwise people might not take you seriously; to know that any doctor you might go to could just tell you he doesn't "believe" in what you have; to get recommendations for treatments that are not only unproven, but incredible dangerous and potentially lethal - and to have no alternative treatments available to you.

As far as I am concerned, the least that has happened here is that this development has renewed the interest of scientists into these diseases that have gone too long ignored. Drug companies go where they know they can make money, and with the CDC estimating that CFS alone "affects more than one million people in the United States. There are tens of millions of people with similar fatiguing illnesses who do not fully meet the strict research definition of CFS," there is certainly profit to be made. From Medical News Today, November 09: "These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man."

"Retroviruses like XMRV have also been shown to trigger latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, which was causally linked to Burkitt's and other lymphomas in the 1970s, have been associated with CFS, according to a statement from the NIH. Dr William Schaffner, professor of infectious diseases at Vanderbilt University in Nashville, Tennessee, told the New York Times this was an exciting discovery that made sense and he suspects it will lead to an "avalanche of subsequent studies".
ME Action, Nov 09.

"Judy Mikovits, the lead researcher in the study, said their findings also are being taken seriously by the rest of the scientific community."I've gotten more than 100 e-mails from physicians, and I've gotten calls from the head of the Mayo Clinic and the clinical director at Sloan-Kettering," she said. "Those people wouldn't take the time if they didn't think this was a significant finding."
Reno Gazette Journal, (Nov 09)

“Another notable feature of XMRV is that the frequency of infection in nondiseased controls is remarkably high...If these figures are borne out in larger studies, it would mean that perhaps 10 million people in the United States and hundreds of millions worldwide are infected with a virus whose pathogenic potential for humans is still unknown”
Science Express, Oct. 09.

So that's an overview of the XMRV findings, from my perspective: It's something to be cautiously hopeful about. I have a bunch of other quotes and thoughts to share, on a day when I can write more, but for today, I just wanted to leave you with this:

“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough."
Hillary Johnson, "A Case of Chronic Denial" , NY Times, 10-21-09


Sue Jackson said...

Wow, really excellent summary!! You did a great job of getting to the heart of the new research and what it means for all of us previously invisible CFS patients!!

Very well done - thanks!


Anonymous said...

As your blog title's "Never that easy". Or I should say it MAY never be that easy.

XMRV could turn out to play a part in CFS, but consider these two things: It's found in many more healthy people than sick. Plus, people have recovered from CFS. Rarely yes, but they have.