This post may only be interesting to sociology/history/word nerds: I apologize in advance.

I somehow made it through our (granted unseasonably cool) summer months without putting in my air conditioner, and now that it's September, I want it with all of my soul.

Hi ho, internet friends ~ I don't know about you, but September has brought with it all that is muggy and unbearable up here in Massachusetts: We had some thunderstorms tonight that I was hoping would bring some relief, but no such luck. My asthma is so unsure of what to make of this, because some fall pollen is already out, so it's doing double duty battle, and there's some telltale rattling happening.

Calling the fall and the cooler weather, please, since I guess this doesn't even technically count as Indian Summer, as summer hasn't even officially ended yet. But September should be cooler than this.

So, I had this big check-in post planned, originally, with those first couple of paragraphs leading into some stuff that's going on here (besides the weather), when, in the course of typing out the words Indian Summer, it occurred to me that I have no idea how offensive a term that might be, and maybe I shouldn't be using it. And so, a whole new fascinating post (and at least three hours worth of rabbit-holing with Google) were born.

I had to start with the assumption that if it made it into the lexicon as something Indian, it probably didn't start out as a huge compliment, given both the word (Indian vs Native American) and the time period during which it would have emerged (which I was just guessing on, but I figured to be pre Industrial Revolution). Given those, I was not startled to find that there are many opposing viewpoints on its origin, its meaning, and its potential offensiveness.

After a (by no means exhaustive) search, it seems likely that it means "false summer", a kind of fake-out, reminiscent (to me) of Indian Giving, only this time, on behalf of Mother Nature. There are other explanations, sure - Fools summer, maybe; named after Indian Gods who sent the wind, perhaps; or (in a highly unlikely, but poetically, stunning turn of events) having to do with the actual Indian Ocean and its famed shipping, but most of the sources I found seemed to agree that there's a degree of dishonesty or falseness to it.  The majority of the other suggested definitions aren't particularly positive either - Indians burning things, or trickery of some sort - so they're not really helpful in terms of judging its offensiveness.

 Most interesting to me, however, was this blog post from the humorous news site, PTSOTL (whose author also writes for the Boston Globe and other major publications, and who did as good a job Googling as I did, since we came up with many similar sources {even if he is completely wrong about Tumblr, but that's another post}) which talks about what Indian Summer is referred to in other countries, and makes some pretty clear inferences as to its meaning:

Almanac.com has another guess for the meaning. 

The most probable origin of the term, in our view, goes back to the very early settlers in New England. Each year they would welcome the arrival of a cold wintry weather in late October when they could leave their stockades unarmed. But then came a time when it would suddenly turn warm again, and the Native Americans would decide to have one more go at the settlers. "Indian summer," the settlers called it.

 Sneaky bastards, right?  Surprisingly, the American term for the weather singularity may not actually be the most offensive one. Check out a list of all the different terms for the return of unseasonably warm weather from throughout the world in the Wiki entry here, including more info on my Russian friend from above.

In many Slavic-speaking countries, the season is called Old Ladies' Summer...

Only thing worse than a back-stabbing heathen Indian, of course, is a woman, right? Women are the Indians of regular people. 

In Bulgaria, the phenomenon is sometimes called "Gypsy Summer" and in some places "Gypsy Christmas"....

Gypsies are the Indians of Europe, right? Native American European Non-Europeans. Surprisingly, Germany and Austria, always known for their mannered approach toward cultural differences, may have the most reasonable expression:

In Germany and Austria, it is called "Altweibersommer", or if referring to mild sunny weather during October in particular, simply "Goldener Oktober" ("Golden October").

It gets worse though. 

In Hungary, it's "vénasszonyok nyara" (Old Ladies' Summer or Crone's Summer) because the many white spiders seen at this time of the year have been associated with the norns of Norse folklore or medieval witches.

Maybe, or maybe because you can't trust a spider anymore than you can an old lady.

Women, Gypsies, Old-Women, Spiders, Indians - So, it's basically "Outcast Summer"? "Persecuted Peoples (and assorted arachnids that help witches)" Summer? Yeah... I'm thinking perhaps that's not the most stigma-free term I've ever used.

And yet, I've never heard/read/found someone say they were offended by it, so I don't want to just assume it's offensive, but I also don't know many Native Americans people personally (and the one lady I could ask would probably just laugh hysterically in my face, and then roll her eyes at me, because that's the kind of relationship we have: I love her to pieces, but I'm pretty sure she thinks I am the Liberalest Liberal who Ever Liberalled, and, since she loves me back, she just pretends that's not true.).

I'm already anticipating the eye-rolls I will get if I mention any of this to members of my family, because I constantly get crap from them about being "too PC" and "going overboard". I honestly don't believe there is such a thing, but whatever - that's not what I'm trying to do here: It's more checking my terminology and adjusting for how people want to be spoken to/about. Nobody has every mentioned this to me, and I'm not reading some large scale (or even minor scale) treatises about it online, so... I'm not making a huge deal about it because it's not my place to.

It's just one of those phrases that's slipped into our vocabulary over time that I wanted to know more about. And now that I know more about it, I'm troubled. I'm left wondering if it wouldn't be nice if there were a different term we could use here, and if I saw a story tomorrow about how Native Americans found the term Indian Summer to be racists, I wouldn't be surprised.

At least now I know. At least now, if someone asks me to not use the term, I'd have a way to explain it to the eye-rolling people, even if that wouldn't be good enough for them and their "PC monitoring". It's enough for me to know. Maybe I'll start using the German word, that was pretty.

No, actually, Wikipedia has some better ideas: Latvia calls it re/summer ("atvasara") and China calls the period autumn tiger (qiū lǎohǔ (秋老虎), which ROCKS ---> either of these are obviously better vocabulary choices, popular lexicon. Get with the program and let's just start calling it ReSummer - a brief period of summer again after frost/cold -, alright ?

That way nobody gets hurt, no one's culture is ridiculed or appropriated, and it makes literal sense. Problem solved.

Also of scientific note -

• Some countries have very specific ReSummer criteria (such as dates and temperatures that must be met before it can be declared as such). I did not know this until I started writing this post, and I'm pretty sure the weather people on TV are also not aware of this, because I have heard them say it already, and even I know that it can't be Indian Summer until after the end of Meterological Summer, which is September 22. 
• According to The Phrase Finder,  "The incidence of Indian summers has increased significantly over the past decade or so (in the UK at least - I can't speak for other countries) as one symptom of the unstable weather caused by global warming."
• Apparently, haze is also required, according to Almanac.com: "As well as being warm, the atmosphere during Indian summer is hazy or smoky, there is no wind, the barometer is standing high, and the nights are clear and chilly." (Then today DEFINITELY doesn't count, because while we have haze, there is no chilly night happening here.)  

So that's what I learned today, and now I've shared it with you. More stuff you didn't know was racist until you put a little bit of thought into it and realized, "Of course, that seems likely!" This, by the way, describes basically my entire sophomore year of college, if you also include sexist/abelist/ageist/homophobic/etc. Liberal Arts educations are very eye opening, and also make you feel like you have not been paying attention to anything, ever, in your entire life (at least, for privileged people, that is).

 Now back to our regularly scheduled sweating.

Seriously, with the heat: Stop. 

A book recomendation

I just finished reading Raising Children Who Think for Themselves by Elisa Medhus, M.D., and it was incredibly thought provoking. I didn't always agree with her approaches or suggestions, but the main theme of the book - that children should be learning (through discipline, their environment, our role modeling and other means) to evaluate and assess their own behaviors, internally, based on their own expectations of themselves (that we've been teaching them) rather than external (either parental or societal) expectations of them.

In other words, kids who think for themselves. She raised a lot of interesting points, and provided a lot of practical examples of how to "guide, then step aside." I was really impressed with her knowledge of kids motivations for certain behaviors - and how to best guide them into turning their attentions in more positive directions.

I was, of course, horrified to see myself (or family members) in some of the more negative portrayals, because I know that the reasons we've done certain things have always been with the best of intentions, but the (often negative) outcomes are so easy to see when they're on paper like that. I recognized myself most when she talked about how often we step in to spare our kids (or, in my case, the nephews and niece in my life) from suffering & therefore eliminate their chances of learning from mistakes or problem solving their way out of them. I've noticed lately that I've become a 'warner' (my term, not the author's): I'm constantly saying "Maybe it's better if you tried it this way," or "do you really think it's a great idea to balance all of those dolls in one trip, why not make two?" Why not just shut your whore mouth (sorry: If you're not a Prankster, that probably seemed like it came out of nowhere, but I've been reading Aunt Becky a lot lately, and couldn't help myself) and just let the kid figure it out on their own? What's the worst that could happen? She drops the dolls and has to make clean up the mess? The horror! So I definitely recognized that I have a real need to step aside and just let them learn on their own - The worst part of this whole thing being, obviously, that I am a teacher, and know this already, so how did I get to this point of having to open my mouth all the time, but if I'm going to teach them to be willing to recognize when they've made mistakes, I have to step up and recognize my own as well. That's a problem area for Auntie NTE, and will be addressed posthaste.

So much of the strategies that Medhus proposes in her book are not new to me, but the practical parenting examples she incorporates into the text really made me think about how I am applying my training (and where I am failing to apply it), and how often, in the heat of any given situation, discipline doesn't stay true to it's logical guidance roots and instead turns into a form of punishment or control. It's easy to forget, when a four year old is throwing a tantrum in the store, that their problems are their problems, and I don't need to make them mine.

I will give myself a lot of credit for being the "this is unacceptable behavior" line draw-er in our house, but it's kind of hard to hold the line when there isn't a lot of follow through on the part of other people. After all, I am not these kids parents: They have awesome parents who love and care for them. But when the rules are so much different at Grammy's house then they are at home, it's hard to keep the behaviors that I consider unacceptable (whining and nagging, bickering and meanness) from bleeding over: Kids are going to get away with what they can get away with, and trust me, the kids in my life are no exception. So we have a little issue with consistency, and I know that doesn't help them to internalize things, but I'm really going to work on it for my part (and see if I can't convince my brother that he'd like to read this book as well).

Aside from "guide, then step aside", some of the other concepts that the author did a great job of explaining include the need for using guiding questions to help kids arrive at the right answers; the benefit of empathy in creating kids who aren't just focused on their own needs, but on the lives of those around them; the idea of respecting failure as a key step towards growth and that personal excellence is greater than perfection; the need for all consequences to arise as naturally as possible from a given behavior (and to be logical); and the vital role that adults play in modeling appropriate behavior.

It was all reasonable, common sense stuff, and it was presented in such a way as to not be overwhelming or tell you what a horrible job you were doing raising your kids: in fact, it was an optimistic and enthusiastic book whose title really reflected its overall goal - you can make changes in your behavior to help your kids make lasting changes in theirs. You can have kids who aren't motivated by whether or not they're going to be punished for doing something wrong, but rather on if something feels wrong to them and how important it is for them to follow that instinct. There are so many strategies for helping children gain confidence in their own decision making skills, in their ability to recover from mistakes, in their intuitions, and in their ability to do what's right when they recognize it.

I thought it was a worthwhile read, for parents and teachers (and aunties ;) ) because it helps you clarify what your intentions are as you raise your kids, or as you contribute to the raising of children: I know I want the kids in my life to be able to make their own choices and find their own ways in life, to be able to recognize happiness in whatever form it takes for them, and to have the courage to reach for it (regardless of if society says it is something they should strive for or not). I want them to be able to think for, and act, and believe in themselves, and I'm glad that I've got some more strategies to try in order to help them achieve that.

Recently, I received an advocacy alert from one of my various CFS/ME groups, concerning the possible inclusion of CFS in the newest version of the DSM. The DSM - Diagnostic and Statistical Manual of Mental Disorders - is the American Psychiatric Associations' guidebook when it comes to mental illnesses, and the idea that there would be a category under which CFS might (or could realistically) be grouped is terrifying. It's a huge step backwards in the fight for funding, understanding, treatment, and all of the other things patients with CFS often don't have the energy (or time, or resources) to continue to battle without end.

I took a while to craft a letter I felt managed to point out all of the issues that are inherent in such an inclusion, while also trying really hard not to abelist towards mental illnesses and their severity either: I really didn't want to say "Don't call us crazy!" and expect that that would be a worthwhile argument. It isn't - crazy is a word I'm trying to erase from my vocabulary, in the first place, but in the second, there's nothing worse about being mentally ill than there is about having any other form of chronic illness. So I didn't want my letter to make it seem as if I were saying, "Well, we have all these issues, but we're still better than that": Instead I wanted to make clear that having a classification that could include CFS (and, as you will see in my letter, just about any chronic illness) is a setback because it does not allow for a true understanding of our disease process - and that can have dire consequences. At least, that's the point I hope I was making... I'm open to (constructive) criticism, if you have any before Monday, which is the deadline for comments on this particular version of the diagnostic criteria.

I'm writing to express my concern about the possible inclusion of Chronic Fatigue Syndrome as a "functional somatic syndrome", under the newly created category of Complex Somatic Symptom Disorder in the DSM-V.

First, I take issue with the vague and almost universally applicable criteria under which the CSSD could be diagnosed. Symptoms like
"A belief in the medical seriousness of their symptoms despite evidence to the contrary"; "Normal bodily symptoms are viewed as threatening and harmful"; "High level of health-related anxiety; "A tendency to assume the worst about their health (catastrophizing)"; &"Health concerns assume a central role in their lives." are so ambiguous as to be useless. Under this criteria, I would say that ANY chronic illness could be included as a somatic disorder. If you have heart disease, your "health concerns" will - if you intend to survive - most likely assume a "central role" in your life, and many previously "normal" symptoms could now be considered as potential threats. If you are diagnosed with cancer or HIV, I'm going to assume that a certain amount of "catastrophizing" would take place - there have been numerous books written about how a diagnosis of such an illness is not a death sentence: Would there be a need for those books if people didn't automatically assume that certain illnesses could mean the worst for them?

Creating this new category is to dismiss the very real worries and concerns of ANY patient, with ANY illness: It fails to take into account that, when confronted by an illness you cannot predict, you may sometimes become discouraged, fear the worst, or wonder if your newest ache or pain will be as devastating to your life as the previous one was. It takes what is human about a patient - the fact that they might make mistakes, or become anxious about something that is having an intense impact on their life - and turns it into something that is abnormal, something that should be seen as an illness. In so doing, you erase the humanity of all individuals with chronic illnesses.

If you fail to see that some of these behaviors - for example, having a high level of "health-related anxiety" - can, in fact, be positive coping mechanisms, you are invalidating the needs of a chronically ill patient. If a patient is proactive - if she sets a schedule for taking her meds, follows a nutritious diet, incorporates periods of rest and exercise as needed throughout the course of her day, & keeps up on the newest treatments and research regarding her disease, then yes: it is fair to say that "Health concerns are a central role in her life." However this is only to her benefit, and EXACTLY what doctors advise their chronically ill patients (and, with specific changes, their well patients) to do, no matter what their diagnosis might be. And yet, you plan to classify that as yet another symptom for a "disorder" that has no real medical definition. With "symptoms" so broadly and subjectively defined, the potential for misdiagnosis, and abuse towards patients whose illness are atypical, medically complicated, misunderstood, or rare is extremely high and frustratingly preventable...by simply excluding such a code, which would likely do more harm than good.

What other forms of harm, besides the very real danger of ignoring the physical deterioration of a patient due to misdiagnosis, might occur? Consider a recent study out of the Netherlands, which concluded that it is "unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as Cognitive Behavior Therapy and Graded Exercise Therapy", two of the most widely used therapies for ME/CFS in the UK, and both recommended treatments for various current forms of somatoform disorders, or the fact that most SSRIs (which are also considered applicable treatments for somatoform disorders), tend not to be effective in treating CFS, and carry the risks of many serious side effects.

Somatiziation is the physical expression of psychological symptoms, and for the APA to claim, as experts and medical authorities, and with no room left for doubt, that the symptoms of CFS begin as psychological is not only to contradict the World Health Organization (which classifies it as neurological in basis), but also the US Centers for Disease Control (which stated, in 2006, that "There were no other factors, psychological or biological, that held up under thorough analysis"). It ignores the fact that in the UK ME/CFS patients have been banned from donating blood for over 20 years, that they were recently prevented from doing so in Canada, and that they are actively discouraged from doing so in the US. It also does not reflect a complete understanding of most of the current scientific research including viral implications, numerous biomarker studies; studies with immune system findings, neurological findings, CNS findings, genetic findings; and the complexity and interconnectivity of a disease like CFS. And it ignores the voices of the many experts and medical organizations focused on CFS research, including, but not limited to: Drs. Bell & Cheney, Dr. Komaroff, The Whittemore Peterson Institute, Dr. Klimas, & many others, who continue to search for the cause, treatment, and possible cures for this horrible disease.

I fail to see why, when biological science is stumped (or, in the case of CFS, more likely just ridiculously underfunded), putting the blame in the heads of patients is considered an acceptable solution. To include a definition of CSSD that could be applied to conditions like Chronic Fatigue Syndrome or Fibromyalgia is to forget the long - and embarrassing history - of unjust accusations of patients - or patient's families - "creating" their own illnesses - In the not too distant past, mothers were blamed for Autism, Type A personalities were blamed for causing ulcers, and both Multiple Sclerosis and Epilepsy have long been tainted by the incorrect assumption that they were caused by patient behavior.

Also important to note is the disconnect between medical science's understanding of men's bodies (and, therefore, diseases that are more likely to strike men) vs medical science's understanding of women's bodies (and, therefore, diseases, like CFS and FM, that are disproportionately more likely to affect women). From the fact that the term "neurasthenia" (aka "the vapors") - a term which the DSM itself tossed out years ago - is still being used in the UK to label CFS patients, to the woefully inadequate funding and research into diseases that have high populations of female patients, and how this would only contribute to the misuse of a CSSD coding.

I wish to be clear; Of course, for any person, chronically ill or not, there can be physical effects of psychological stress - You have only to suffer through one tension headache or witness a child so nervous that he loses his breakfast to know that this is true. But to state categorically that all of the symptoms of CFS patients (which can include sore throats, chronic infections, post-exertional fatigue, abdominal pain, unrefreshing sleep, irregular heartbeat, vertigo, muscle and joint pain, mental confusion, tender lymph nodes, allergies, night sweats, hypersensitivity to light, sound, smells, heat or cold, abdominal pain, blood pressure problems, and many, many more) can - definitively - be attributed to psychological factors, is to propose and support a falsehood.

I'd also like to refer you to a recent "Submission Re: DSM-V and ME/CFS" compiled by Professor Malcom Hooper and Margaret Williams of the 25% ME group (submitted 3-20-10) for an enlightening discussion about who would benefit from the inclusion of CFS as a CSSD, and the conflicts of interest evident in the DSM-V Somatic Symptom Disorder Work Group. (This work also includes a good summary of why the criteria are "so wide & non-specific that they have little clinical utility,"which I have already discussed.)

In conclusion, I urge you to consider the consequences of such an inaccurate and regressive inclusion - the potential for misuse/abuse/overuse of a non-specific coding for millions of affected patients; years of unhelpful and potentially dangerous drugs and therapies for patients who go to their physicians looking for answers; further & inhumane setbacks in the search for the real illness that is affecting these individuals, as well as the research that is necessary to find a cause, treatment & cure; and putting the DSM-V on the wrong side of medicine (and eventually, history).

I appreciate you taking the time to read my thoughts and concerns, and hope that you will take them into consideration as you make your final recommendations.

Sincerely, etc etc.

You can find the full criteria Here, as well as a link to where you can submit your own comments.

"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