Article: CFS Hits Big Time "War on Mystery Disease" on Front Page Wall Street Journal

Article: CFS Hits Big Time Wall Street Journal Front Page: "War on Mystery Disease"

You can view the page at http://forums.aboutmecfs.org/content.php?379-Front-Page-of-the-Wall-Street-Journal-War-on-Mystery-Disease

 

Good points Hope. I was wondering if Ms. Marcus has written about the recent spinal fluid analysis findings. (Anybody know?) Her articles seem to center around XMRV, but it would be nice to see certain elements of the "bigger picture" injected into them as well. My biggest concern is that interest in ME/CFS will drop considerably if XMRV doesn't prove to be causal, and that doesn't need to be the case.

Wayne

Thanks, Wayne.

I recently sent her links to CFSAC Science Day (which has a good collection of talks from well-known ME/CFS researchers) and also some CAA webinars which talked about various biological findings in ME/CFS. I agree that my bigger concerns aren't centered on XMRV (although it is important to pursue this) but rather that if XMRV is not it, scientists, researchers, universities, and the government will go back to "business as usual" -- i.e. ignoring ME/CFS for another 25 years.

We need to do a better job of "selling" ME/CFS as an illness worth investigating whether it is related or not to a virus. The medical journals are full of non-novel studies, analyses of huge data sets, case reports of rare illnesses but no one seems to realize that yes, you might be taking some risk with ME/CFS research but that is how great researchers are made, through discovery/ investigation/ treatment of new/ mysterious illnesses, not through repeating what everyone else is doing.

 

Thanks, Wayne.

I recently sent her links to CFSAC Science Day (which has a good collection of talks from well-known ME/CFS researchers) and also some CAA webinars which talked about various biological findings in ME/CFS. I agree that my bigger concerns aren't centered on XMRV (although it is important to pursue this) but rather that if XMRV is not it, scientists, researchers, universities, and the government will go back to "business as usual" -- i.e. ignoring ME/CFS for another 25 years.

We need to do a better job of "selling" ME/CFS as an illness worth investigating whether it is related or not to a virus. The medical journals are full of non-novel studies, analyses of huge data sets, case reports of rare illnesses but no one seems to realize that yes, you might be taking some risk with ME/CFS research but that is how great researchers are made, through discovery/ investigation/ treatment of new/ mysterious illnesses, not through repeating what everyone else is doing.

Hi Hope,

I think the points you raised previously were excellent and well worth remembering, but in light of this last article and it making the front page over those that I would have thought appealed more to the readership you identified - it raises the issue now, I personally think, of greater editorial control and that might not produce articles of the kind we are hoping for. So I will be following ADM articles from here on in with a lot more interest.

 

Email to Amy from Pat Sonnet - a member of the Board of Directors for Phoenix Rising

Amy, thank you for once again covering the story of ME/CFS. I firmly believe that much of the patient anger and frustration we're witnessing now is justified and is a direct result of decades of denial, ridicule, neglect and malfeasance on the part of our government health agencies whose responsibility has been to investigate this illness properly. Even now, the research dollars allotted to ME/CFS amounts to less than $6 per patient per year, a paltry sum by anyone's standards.

I have had ME/CFS for 25 years and had to suffer the horrendous effects of this illness because of this injustice, and I'm one among many who have suffered for decades. I think we have every right to be angry and demand that those responsible for these reprehensible actions (or inactions!) be held accountable and that more of our tax dollars be spent on researching this devastating illness which continues to claim more lives every single day. We've "played by the rules" for years while we've watched what little remnants remained of our lives slip away. We're not going to fade away silently into the night Amy. The real story has to be told even if it means shouting it from the rooftops. We're not going to allow another generation to suffer this fate without doing everything we possibly can to make sure our collective voices are finally heard.

Sincerely,

 

Email to Amy from Pat Sonnet - a member of the Board of Directors for Phoenix Rising

Amy, thank you for once again covering the story of ME/CFS. I firmly believe that much of the patient anger and frustration we're witnessing now is justified and is a direct result of decades of denial, ridicule, neglect and malfeasance on the part of our government health agencies whose responsibility has been to investigate this illness properly. Even now, the research dollars allotted to ME/CFS amounts to less than $6 per patient per year, a paltry sum by anyone's standards.

I have had ME/CFS for 25 years and had to suffer the horrendous effects of this illness because of this injustice, and I'm one among many who have suffered for decades. I think we have every right to be angry and demand that those responsible for these reprehensible actions (or inactions!) be held accountable and that more of our tax dollars be spent on researching this devastating illness which continues to claim more lives every single day. We've "played by the rules" for years while we've watched what little remnants remained of our lives slip away. We're not going to fade away silently into the night Amy. The real story has to be told even if it means shouting it from the rooftops. We're not going to allow another generation to suffer this fate without doing everything we possibly can to make sure our collective voices are finally heard.

Sincerely,

I could make this same argument word for word concerning "advocacy/enablers" over the past decade.

 

I'd like to know more about the CDC researchers' article stating 29% of PWCs have "a personality disorder." Is anyone familiar with the article? Imagine if we had psych degrees, what we would diagnose THEM with!

 

Found it

I'd like to know more about the CDC researchers' article stating 29% of PWCs have "a personality disorder." Is anyone familiar with the article? Imagine if we had psych degrees, what we would diagnose THEM with!

I found it--
http://www.prohealth.com/library/showarticle.cfm?libid=15783

Good debunking in the article.

 

Just to give a quick response to the comments and articles....I really need to reread the article again, as well as comments....I have had a "crash" now for weeks, which is a problem for all of us? That is again, something others don't understand.

As for research, as a nurse, for a while I worked at a university hospital and worked in research programs, basically doing phase 3. What I found out, which tainted me a bit, was that the Drs./professors do the research for several reason's.
1. Because they are interested in the disease
2. Because they need to write a research paper to get a raise
3. Political
4. Other.......

Now, I am not sure how it works with the NIH, but.....I am sure that it is as political as the universities in the research they do. No conclusive results that make sense to the ones who decide where the money goes, no money. That is my guess, but it makes sense to me. To fund a study I had to go before a board and present the study, and it had to make sense to a board of Dr.'s that are clueless to the disease I was studying. (Hep C at that time)
So, my quick response to the article and comments....back to re-reading.........

 

Cort wrote in his letter to Amy Dockser Marcus:

This simply illustrates the pent up yearnings found in the population for wellness. We are not depressed. We are not sitting in our homes feeling sorry for ourselves. This is population that will do almost anything to get well. We have tried behavioral treatments and snake venom and antivirals and whatever......we have spent our last nickels trying to get better. Dr. Alter may have been surprised but no one in the CFS community was that his comments aroused so much interest.

After decades of being CFS sick, I've lost the ability to express outrage and anger, yet I feel it. Cort, thank you for speaking to Amy in a voice that represents how many of us feel.

Have also lost the hopefulness of many CFIDS patients who have "only" been sick a few years..."The answer is just around the corner" belief. We need your hope as well!

Floydguy commented:

"I think it's speculative to assume that researchers want to find this virus."

I agree.

I believe the CDC and the NIH have multiple reasons not to want to find this virus. Proof of XMRV in CFS patients will break the back of social security and burden Medicare beyond imagination.

CFS and all of us as patients have been drug through the mud by the media, health-care providers, and most certainly by the CDC and NIH....For decades.

While I'm cautiously optimistic that XMRV will turn out to be the needle in the haystack...my mind thinks back to when HHV6 made headlines, and we all thought 'this is it." Obviously the stakes on XMVR are far higher.

One last thought I want to share about retroviruses. I remember in the late 1980's or early 90's Dr. Cheney said this to me, and I'll paraphrase...

HIV should not be able to do to the immune system what we see it doing. I believe that HIV patients have a second unknown virus and those two viruses in tandem can do the damage we're attributing to HIV. I think that second virus is what causes CFS.

Have never forgotten that. It's an educated and interesting theory.

Again, Cort thank you for expressing yourself to Amy Dockser Marcus and saying what I feel. And to those who express great hope, thank you for that as well.

Best to all with CFS/ME...