1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Article: The First Retrovirus in Chronic Fatigue Syndrome (ME/CFS)

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 15, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    994
  2. wornout

    wornout Guest

    Thank You for taking the time to post this. I just hope we are not seeing history repeat itself.:ashamed:
  3. A very well written article, thank you.
  4. frenchtulip

    frenchtulip Senior Member

    Messages:
    513
    Likes:
    180
    A superb article! Thank you, Cort!
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Thanks! We just need to make sure that the researchers get the resources they need to fully figure this out. I have been told that CDC researchers are in the WPI labs working side by side with them. If that's true then that's obviously, given what happened in the past, good news.
  6. Carla-nl

    Carla-nl Veteran by now

    Messages:
    54
    Likes:
    1
    Europe
    In a time where the 'world is so small' due to internet (eg. email, skype, enabling video conferences, etc.) I don't think it's a lot to ask for peope to UNITE and COLLABORATE anymore. It's great to hear that researchers are physically sharing resources as well though and that from all we hear some terrific work is underway. PS, Cort... Thank you for all you do, I couldn't keep up with you even if i tried. :sofa:
  7. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    175
    USA.Earth
    Thanks for compiling this Cort, writing that must have been a lot of work!

    What this story makes clear to me is that regardless of the outcome of retroviral or other empirical CFS studies, we need to move away from the notion that a single pathogen or simple disorder must be found to prove to the CDC that CFS is worthy of serious funding. CFS is here, it is real, and it is complex. Multiple pathologies can be proven, the CDC and NIH need to adjust their mission for CFS research to one of finding the cause and effective treatments. They owe us after all this time of brushing off the CFS patients, they need to put up serious funding. And we really need new advocacy, funding, and PR angles for CFS to force public health agencies to address CFS at a level that is equitable given its impact on patients and the public.
  8. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    Perhaps we can start by not calling it "CFS"! :D The flawed definitions and approaches that have created so much confusion, and allowed so much 'psychologization' of the illness, are long overdue to be abandoned. For the first time in many years, we have a great opportunity to push to do just that.



    ETA - Kurt, there's something awfully familiar about your new avatar... can't quite put my finger on it.. Maybe it would help if I had more of an opposable thumb...
  9. Wayne

    Wayne Senior Member

    Messages:
    2,178
    Likes:
    1,242
    Ashland, Oregon
    The Name CFS

    Hey Dr. Yes,

    Want to thank you for all your posts here. I always appreciate hearing what you have to say.

    Regarding the name CFS, I would have agreed with you in the past, but I'm thinking now might be a terrible time to change the name. What if the name was changed to "X", a name very few would become familiar with right away. Then what if some remarkable (and credible) findings came out in near future that gave credence to the organic nature of "X". People might know that "X" is a "real" illness, but how many may not make the connection to CFS?

    Leaving the name as it is might well be the best thing at this time. If more breakthrough discoveries come out in the near future (which I think likely) replicating or expanding on the WPI results, then perhaps leaving the name CFS will help more people make the connection to the CFS they've known. Perhaps this will allow them to more fully realize how mainstream medicine really has egg on their face on this one. Perhaps my wildest dream? :Retro smile:

    Best, Wayne

    ETA Just realized my 3nd paragraph is almost totally redundant of my 2nd. I always find things like this a little sobering.:innocent1:
  10. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    No apologies, Wayne; we all have brain fog here, so redundancy is usually helpful! :Retro wink:

    I'm not proposing a name change at the public relations level, as that would lead to a lot of confusion as you pointed out, but at the level of diagnostic coding and research definitions. This conflict already exists, for example, between the WHO and the UK government, and will come to a head eventually whether we advocate or not - it's just better that we make sure they do things right instead of letting them create an even bigger mess, as is currently proposed! For instance, the current plan for the U.S. is that in 2013 our ICD coding will recognize M.E. (as the UK currently knows it) as a neurological disease but will specifically exclude CFS from qualification as a neurological disease (that's actually even worse than our current ICD treats CFS). So, whether we like it or not, the term CFS is being increasingly marginalized by the agencies that make the big decisions that affect whether we get insurance coverage, etc, forcing us to either lay claim to the name and fight for it's appropriate medico-legal treatment, or to choose a different term that has less baggage but currently less recognition.

    The fact is that the way the WHO and CDC use the terms is more important than how the general public does (or even how we ourselves do!). If the CDC decided to adopt, say, the Canadian Consensus Definition/Criteria tomorrow, effectively introducing the name ME/CFS and defining it as an organic disease (and excluding psychiatric and other cases that currently slip into Reeve's criteria): practicing doctors would be made aware of it by their insurers (maybe after being told by well-informed patients:D), insurers would have to adjust to the change as they use the ICD coding themselves and could be sued by patients if they do not abide by it, medical schools would be required to include education about this in their curricula, and so on. Researchers would not be confused once the CDC makes clear its new criteria... older research would be understood to have used older criteria (just as we understand it to now; it's actually more confusing now with the multiple criteria out there for the single term "CFS"!).

    So I think it would actually clear up a lot of confusion - as well as reinforce the understanding of this being a physical illness - if the change to ME/CFS were made. And to accomplish this change would only require the action of one government body - the Department of Health, as it relates to the CDC. The WHO would prefer this to the current situation, and the UK and other governments would be pressured to start strictly abiding by the WHO coding for a change.

    In theory, it sounds easy. It should be. Of course, in practice it would be extremely difficult, but at least it would be a focused campaign, instead of us having to waste our energy fighting all the ramifications of having lousy definitions and diagnostic coding for our disease. We would now be able to focus all our collective energy on the powers that have stood in our way from the very beginning -- predominantly the insurance and pharmaceutical industries. If they had no self-interested objections, this sort of change really could be accomplished quickly and without much difficulty. Unfortunately... well, you know the rest. But that has always been our real fight, whether we always saw it or not.
  11. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    253
    what an article!!! cort, can you tell us something about where you got the info to write this article? was your primary source the book Osler's Web, or were you able to interview Dr. DeFreitas herself in the recent past? there are a few instances where you share Dr DeFreitas' thinking. were you getting that from Osler's Web or from Dr. DeFreitas? Thanks for all your good work! rrrr
  12. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    Nice article. Her "20 years from now" quote turned out to be quite accurate! :eek:
  13. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    Put together very well



    Thank-you so much Cort. I am pleased to hear that the CDC may be at the institute. It is harder for them to ignore the findings when we have the internet. Thank god for the internet and you Cort.

    glenp
  14. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    I finally hit the end of Osler's Web and am shocked at how much the XMRV replication is so similar to what happened with the DeFreitas Retrovirus history. It really is a massive, ugly repeat. Blows my mind and sickens me that the CDC/NIH have gotten away with MURDER, quite literally. This poor woman paid dearly for helping us and her reward was to get sick and now no one knows where she is - unless YOU Cort know where she is now. I don't want to put words or even allude to my belief that Hillary Johnson saw a massive government cover-up of CFIDS in Osler's Web. It is my conclusion from her book. But if we go bac over the history and then fast forward to today - well, what can one conclude about WHY we are still where we were back in the early 1980's? I do believe that the government is covering something terrible up and went as far as allowing it to remain in the blood supply and out in the air. I guess it seemed that losing a couple of million people to CFIDS was the lesser evil of having the US Public and the world know what they did and what they have allowed for 30 plus years. I don't believe it is just money and the insurance companies big hand in this. I don't believe it's just basic incompetence on the part of the government. Not this long anyway. It's a cover-up of massive proportions and when it finally comes out the CDC/NIH will be in a mess of epic proportions. I do think that all people are sitting targets for our disease - I do believe transmissioin is via airborne in addition to blood, body fluids, sex. But since we are so sick we stay home in bed and away from others and THAT has saved the US (and the rest of the world) from an Epidemic of horrendous proportions. Instead of being in the millions - I do believe we have at least 10 million truly CFIDS sick here in the US NOT using the AH Reeve's criteria, but true CFIDS sick misdiagnosed, not diagnosed, hidden, too poor to get a diagnoses - and those numbers would be much higher if we weren't so sick and housebound. The CDC/NIH can play games about how many CFIDS sick there are, but the numbers I think, would be shockingly high - IF the CDC had done their job and didn't play the little games of looking at tiny counties like Bibb County, etc. Anway, good blog Cort. It's a horrible repeat of the 1980's/1990s and many of the same players are still at it (good and bad) but we have many more millions of CFIDS sick now than we did back 30 years ago. And for this alone, those that hid whatever information and damned us all with the CRAZY label (always a good thing to do when you want to discredit people is to call them crazy - works well and used in dictitorial countries as a basic tactic for keeping mouths shut) will pay WHEN this conspiracy does come out. And OUT it will come. I just hope I am alive to hear what the Feds did and to see those involved pay dearly with long jail terms. I think everyone should read or re-read Hillary Johnson's Osler's Web - NOW you will have a much better understanding of the Retrovirus discussions in the book that you (ME) did NOT have when the book first came out. You all will understand far more of what Johnson is talking about now given the current replication of XMRV and the CDC/NIH involvement in messing up the replication. Ditto for the UK mess up of all 186 (are they kidding?) "tested". Does Weesely and the rest of that crew know that the public no longer believes them? The Internet has done big damage to the UK shrink morons and our US CDC/NIH morons. WE ALL KNOW they have gone out of their way to damage any real research on CFIDS and the possible Retroviruses (and other viruses) that may cause CFIDS. So,soon I expect that cat will be out of the bag. Soon.Enough of the rambling from me. Good job Cort, as usual. Sadly it is history repeating itself over again - makes me want to cry, vomit and punch a few select faces.
  15. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Thanks. It was ALL from Osler's Web. I was very impressed with Hillary's willingness to let the main characters tell their stories. She came out dead set against the CDC but I came to believe that it was very complex situation in which alot of things didn't go right for Elaine and her discovery. There's a ton of information in that book. Although I didn't agree with all of her conclusions it was a great read.

    I wish I knew how Dr. DeFreitas turned out. She was quite a researcher there for awhile. ; I came away from this thinking you've just got to have the money to go into this kind of research. I concluded that since no one seemed to be able to duplicate her findings that something went wrong with her work somewhere. I also always had the feeling that she was also kind of under the gun -that she never had the resources that she needed. Its a very expensive business - too expensive for a small patient support organization to be responsible for. I wonder if she knows how much she's appreciated in the community. I imagine she doesn't.

    I have no idea where she is. I tried to find her on the internet but failed. According to Osler's Web she was last living, completely disabled, with her mother in Florida.
  16. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    175
    USA.Earth
    Hear hear. But the problem with the CFS 'brand' is not just the name, it is the whole package. We need a re-branding, a more clear set of diagnostics, a new case definition, use of the existing biomarkers for disability determination, and a new name that reflects the known pathologies. 'Fatigue' is a side-effect of the primary pathologies after all, we should be named after some of the primary pathologies involved in the spectrum of CFS.

    LOL about the avatar, I'm not sure if it is the regression to a simian brain in CFS, or simply a 'PWC in the Mist' idea that came over me to change my avatar. Just not feeling completely human these days...
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Cort, although I just finished Osler's Web in early December, I do appreciate your bringing this together in a more focused way. And it is comprehensive. And it reflects a fair approach. While Hillary is certainly to be credited for the tremendous research, years of work and cracking the story of misspent government funds, the DeFreitas story is interwoven in the book with all the other stuff. Within the CFS story, in fact in Osler's Web, are multiple books. And with all this retrovirus discovery talk, interest into DeFrietas' virus has been rekindled. If in fact CDC folks are working side by side the WPI, then I say, "Hooray!" I do believe competition can make for better products, but in medical research, maybe cooperation will make for faster advancement than competition. Hooray! Waiting for more announcements. Tina
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Also, I suspect that possibly the comments made at the CFSAC meeting may have provided the motivation for them to work very closely with Mikovitz. Anne Whittemore commented on the need for any tests, including CDC's, to follow the same method. And since Klimas was there and saw the CDC fiasco on the DeFreitas virus, she likely urged the CDC guy to cooperate this time. CDC really took a beating at the CFSAC meeting. And the CDC guy just sat there and took it. I actually felt sorry for him. (He is not the one to blame, right now Williams Reeves is.) And the strong comments came not just from the patients and advocates, but the members of the committee as well.

    If I were the boss advising on this matter, I would say, "Just go and do it their way. Don't give them anything to complain about afterward. If we don't find it, then we can say it is a problem on their end because we did it their way. If we find, then good. Either way, if we do it differently and don't find it, then it will be nothing but problems."

    Tina
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    oh

    oh, and to the extent that the previous CDC failure to follow DeFreitas' methods changed the approach at the CDC this time, we can thank Hillary for that. Her book exposed it. Without that exposure and the patient anger afterward, then they might have done XMRV same as they did DeFreitas. But there are thousands of eyes watching this time, the challenge is on them, and all of this because we know what happened with the DeFreitas virus research. And the reason we know is because of Hillary. She not only served us, her work was a public service.

    Tina
  20. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I think the CDC and the Feds in general are being much more careful this time.

See more popular forum discussions.

Share This Page