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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Watch CFSAC meeting online Monday 9-4 EST May 10

Discussion in 'General ME/CFS News' started by citybug, May 7, 2010.

  1. starryeyes

    starryeyes Senior Member

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    Yes we need monthly meetings and I was glad to hear Dr. Klimas bring this up. You've explained exactly why these CFSAC meeting can get nowhere. Perhaps that's by design?
     
  2. Koan

    Koan Be the change.

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    I remember being really shocked when I started to work with Government. Government grinds really slowly and is really cumbersome. It's frustrating and exhausting to work with government - any government. I think anything that goes through that committee has to be really focused.

    How does CAA interact with the committee beyond making a statement? Are they players at all?

    I'm writing this below a post of Teej's and I can see this: From caring comes courage. yeah!
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    WTF?

    It was too bad Dr. Unger basically said the "CFS" program isn't going to do anything; I'm only Acting Chief.

    Was it Dr. Klimas who reminded her that "Acting Chief" implies acting? Nice to then see Dr. Unger redeem herself with a commitment to go forward studying WTF (Wichita Tired & Fatties).
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Hillary Johnson asked in her new blog entry where the 'never again an And The Band Played On' Jerry Holmberg from the October CFSAC meeting went.

    He was replaced with a Jerry Holmberg who said point-blank that XMRV was in the blood supply. The substantial potential benefits of banning ME patients from blood donation were discussed. He was asked pointedly twice whether there would be any detriments to banning ME donors and he could not come up with any. Instead, he emphasized there's no proof that XMRV causes disease in humans.

    Obviously there was pressure from some(one) to continue to hush up the whole ME thing. He seemed to be worried that there would be press coverage of a ban on ME donors.

    His take home message went from "never again an And The Band Played On" in October to "we can't be sure we can do an And The Band Played On again, but we're sure going to try."

    Good news for Dr. Holmberg: the ME Band Played On has been going on for 25 years, you're just adding the icing on the cake making sure the retrovirus(es) and other viruses staying circulating in the blood supply for a few more months or years.

    Jerry and Beth: Awesome Show, Great job!
     
  5. Dreambirdie

    Dreambirdie work in progress

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    Government groups and political groups are very much the same. I was a member of the Green Party locally back in the late 90's, and quit after half a year of participation on such important issues as voting where and when we should sell our bumper stickers. So much for noble causes!

    Keeping a committee like that focused is a task for someone with the patience of a saint and the endurance of Hercules. I hope Wanda can pull THAT off!
     
  6. JT1024

    JT1024 Senior Member

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  7. Anika

    Anika Senior Member

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    The name strikes back....

    It may be important to remember that the discussion in the U.S. isn't about ME - it's about CFS. Why is the distinction important?

    It occurred to me after the meeting that the name “chronic fatigue syndrome” and the confusion with “chronic fatigue” may be part of the reason for institutional (e.g. blood banks, public health authorities) concern about deferring donations from people with a history of CFS. It would be much simpler to specify that persons with a history of ME, or Florence Nightingale disease, for example, be deferred from donating.

    But, if you say people with a history of “chronic fatigue syndrome” shouldn’t donate, you’ll probably get a lot of people confused about whether they can donate, because quite a few people are told by their doctors at some point that they have “chronic fatigue.” And if in doubt, they shouldn’t donate.

    This confusion in a very real public health scenario is yet another good reason why "chronic fatigue syndrome" was, and is, a poor choice of name. If it affects the blood supply, blood banks and public health authorities should at least have a strong interest in educating the public –not to mention doctors -- that there is a very real difference between “chronic fatigue syndrome” and “chronic fatigue.”

    I’m curious if people in countries where CFS / ME blood donation has been deferred are seeing more news articles or discussions about the difference between them.
     
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    It still surprises me that there was so much reference to the disease as "chronic fatigue" and even plain "fatigue." This isn't acceptable from CFSAC.
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Shame on You, Dr. Hanna

    Dr. Hanna was so upset that her "career trajectory" wasn't 'identical' to Dr. Koh's any more. Why is he Assistant Secretary for Health and she has to listen to tired people?

    It's so unfair, I mean while this other guy on the committee was just a med student in Galveston, she was already pioneering the mistreatment of retroviral disease patients at Mass General, putting AIDS patients in the alcohol treatment program.

    Her over the top body language said "You just got housed. I just took. You. To. School! Noone has been mistreating retroviral disease patients longer, with more audacity and at the finest teaching hospitals!"

    Well, maybe Stephen Straus, her predecessor at NIH, did it with more audacity- literally saying "goddamn patients" to himself over and over at a CDC "CFS" conference (as reported by Byron Hyde, MD in Osler's Web p.321).

    Oh, speaking of audacity, that reminded her, let's keep those viruses in the blood supply for just a little longer; it can't hurt.

    Maybe Dr. Koh's secret to career success was he tried to protect public health and then he got a promotion; instead of petulantly demanding a promotion and then we'll start protecting public health.
     
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    We Need More Voices of Patients on CFSAC

    I'm not too familiar with CFSAC, but it is obvious we've got at least a few great people on it. We've also got a Ms. Grumpy Pants and a lot of people who call this 'chronic fatigue' or just don't speak that much so it's hard to tell what they think or know.

    I think it would really help us to try to get some knowledgeable people on there who can keep our voices front and center. There were new appointments just made so it will be a while, I think a year before there are any new appointments.

    The charter's bylaws make the committee's composition very heavy with researchers and light on clinicians and patient groups, the latter two groups being those who generally really know the most (with some very notable exceptions- some researchers like Drs. Klimas and Dr. Mikovits) and are most affected. Insurers are given the same priority as patient groups in committee representation. I think it is very important to get the seat allocations up for patients/patient groups and clinicians! I will mention this in any communication with members and really hope you can too!

    Once this is done we can push next year for some patient voices on the committee. Anyone volunteer to serve and represent PR people and other fellow patients? If my situation is the same in a year as it is now, I will not be able to volunteer. If I can get my life together somewhat (hope springs eternal) I would like to volunteer.

    I'm hoping Mary Schweitzer might be able to do this as it doesn't look like CAA is rushing to load her down with a Board seat and it's attendant duties. :Retro smile: I will email her today about this.

    I would also obviously really love to see Mrs. Whittemore on CFSAC if she's willing. I'd like to contact her before next year's appointments and hopefully get us behind her if she's willing.

    (Another, relatively minor, point is that there are only allocations for 'patient groups' not 'patients' and we all know who is the 'world's leading patient advocacy group'- one that does not represent the true voice of patients. I would like that wording to get changed from 'patient groups' to 'patients' if possible- but this is a relatively low priority imo.)
     
  11. SpecialK82

    SpecialK82 Senior Member

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    Does anyone else see the irony that CFS is now under the "High Consequence Pathogens & Pathology/Chronic Viral Disease" branch at the CDC, along with anthrax, small pox, elboa and rabies, but yet the government does not see fit to ban CFS doners from the giving blood? Huh!?

    Don’t these agencies have constant excuses for not supporting CFS with the rigor that it demands? Last year H1N1 took up most of the CDC’s time and resources, now it’s the CDC re-organization ( which has been going on months) that has distracted them from actually doing their work. Then they send us the acting (director?) of the CFS CDC branch, Dr. Unger, who was doing her best not to say anything of substance, but then again, she did have a really good excuse - she was only acting. Arrgh!

    And what can we expect in the future, the health care agencies will be drowning in health care reform for years to come! Where does that leave us – out in the cold again, relegated to the back seat as other issues become priority??

    I don’t know when the 2011 budget is finalized, but I know it will be done before the next CFSAC meeting. That means we need to get some funding NOW – or we start working on 2012!

    So let’s inundate our government offices with thousands of letters. They need to get the message that we will not stand by again while we are cut out of the next budget cycle. We are angry, we are sick, and we demand to be heard. I am sending the CFSAC recommendations form letter to all my family and friends - please consider doing the same.

    http://capwiz.com/cfids/home/
     
  12. JT1024

    JT1024 Senior Member

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  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Good point. It's always been kind of like that with the "CFS" and HPV programs being known from the beginning as the Viral Exanthems (ie Diseases) Branch headed by 'virologist' William Reeves who then was appointed a professor of psychiatry (!!) at Emory after feeding their psychiatry department all the freudian "CFS" work they could handle. All the while "CFS" was officially classified by CDC as something like a 'High Priority Viral Disease.'

    There were two reorgs, but the new names of the Branch and disease classification are just rewordings on the theme of Danger, Danger, Horrible Pandemic Viral Disease (wink, wink's added if they're talking among themselves) accompanied by close to zero action, excluding malfeasance.

    It would cause me less cognitive dissonance if they would just call it "the Crazy People Unwellnesses" Branch of the "Lowest Priority Unwellnesses" Division. At least then their whole articulated strategies would be aligned with their actions.

    And now we have another virologist heading up the Branch, at least temporarily, who suddenly basically thinks she's a psychiatrist (graciously 'opening the funnel' to pour huge amount of depressed people into the Reeves "CFS" definition), but has no psychiatric training.

    It sounds like she did good work on HPV and wasn't trying to run a con job and persecute people so why does she seemingly just step right into Reeves' shoes (ok, she's not actively hostile to patients and CFSAC, i'll give her that)? Is it that she was on the Reeves definition paper and doesn't want to admit she was wrong? It's puzzling to me.
     
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Wow, yeah I hadn't thought of it in that light! From what little I know about her, she seems like she is unbiased, smart and doesn't say things without some foundation. She seems aware of the repercussions of saying things like that in a public government-run forum and definitely not like someone who would throw unfounded verbal jabs or knowingly spread misinfo. I hope she was just being flip, but what you said concerns me.
     
  15. Dolphin

    Dolphin Senior Member

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    :Retro smile:

    Who knows. But they have lots of papers in the pipeline using the empiric criteria/Reeves criteria incl. all the people in the Registry (which was very expensive to put together) so they don't want to bin the millions of dollars of work they have already done.

    That's also my pet theory why the empiric criteria were born: they brought in people first half of 2003 for testing. Then they found that only 10 of the 170-odd patients they tested (with around $10,000 worth of testing per person if one looks at the overall costs) satisfied the normal Fukuda definition which made papers on many of the areas they tested hard (as some of those 10 would be excluded from some of the studies for all sorts of reasons). So rather than again appear that the CDC's CFS division was wasting millions of dollars on non-CFS studies, it broadened the definition. Now, 43 patients satisfied the criteria and they could once again publish lots of papers on the data they had collected.
     
  16. Jerry S

    Jerry S Senior Member

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    Your pet theory sounds very plausible, Tom - unconscionable, but plausible.
     
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    That does make a lot of sense.

    Hopefully she really does recognize it's flawed enough that it needs to be changed, but just can't say that yet until they publish what's in the pipeline now and then once it's published they can say 'the Reeves criteria were ok, but yes we've changed our mind back to plain old Fukuda.' (I don't like Fukuda, but it's much better than Reeves, imo).

    At least she did admit the 'empirical' definition wasn't empirical.

    She also wasn't hostile or drunk on power. She seemed like she wanted to get out of that job asap and go back to being a bench scientist. It would have been nice for her to at least say 'these are very sick people with a physical disease' or some other conciliatory crumbs, but maybe the failure to do so was again a function of being a scientist, not an administrator/ 'face person'.

    Ok; I have already wasted enough time trying to see inside the minds of our esteemed public health service so I'm just going to put down the keyboard and walk away or I'll sidetrack myself with my own ramblings on this topic all afternoon or worse you might waste your time reading it.:Retro smile:

    Cheers everyone for a really good effort writing in and testifying!! :victory::victory:
     
  18. parvofighter

    parvofighter Senior Member

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    Email sent to Dr Jones; and Good Vibes from Dr Holmberg @ CFSAC

    Request for clarification sent to Dr Jones
    Thanks for posting this Wildaisy. I just sent off an email to Dr Jones requesting clarification of that comment. I've asked her also if I have her permission to post her response. Will let you know if I can give an update.

    One request: Can anyone give the URL for the Youtube video that contains the above comment by Dr Jones? Specifically, what minute should she cue to, at which URL, to review the comment?

    On a positive note: Dr Holmberg's CFSAC testimony
    I transcribed parts of Dr Holmberg's testimony (apologies if this is duplicate - I just don't have the energy to go through this whole thread). My take is that there is more confirmatory XMRV/ME/CFS work in the pipelines. Here's why, based on Dr Holmberg's words on the following:
    On the importance of blood collection/preparation procedures (van Kuppeveld, wake up!):
    "One of things we have to do is identify time between collection and preparation of the sample, and the differences between whole blood preparations and peripheral blood mononuclear cells, or PBMCs.

    In other words, collection procedures - such as those used by Dr Singh etc. - appear to be important to finding XMRV. Geez, I wonder if 20-year old blood passes muster?

    On whether the 3 negative studies can be considered "level playing field" replication attempts...:
    As you can see with the next slide, theres um numerous publications that have come out since the October 8th publication. The 3 that followed in January and Feb were um - reported negative results, but I think that as we develop more and more procedures, and also be able to standardize procedures, that I think well all be playing on a level playing field, and that Im sure I would believe there would be even articles waiting in the wings right now to come forward.

    My read is that there are positive studies (just as Ruscetti, Coffin, & Orthomolecular implied) waiting in the wings. Keep in mind also that Holmberg et al are not working with Wesseley, van der Meer, van Kuppeveld in standardizing procedures. They're working with Ruscetti, Mikovits, etc...

    On "confounding" results, and what we can expect in the pipeline:
    What we know today is that there is confounding association between XMRV and chronic fatigue syndrome, and with more data coming out, maybe the results may not be so confounding.

    Taken together with his other comments, I believe it's significant that Holmberg didn't say, "with more data coming out, maybe the results may be more confounding".

    On the 1st International XMRV Workshop with NIH:
    I think this is great as far as being able to put people together as far as some of the information that is currently available . And I do believe that within the next several months there will be even more information coming available, that we DO (his emphasis) need to have a forum to be able to address some of these issues.

    Why have an NIH workshop on XMRV if there is no connection between XMRV and disease? This guy is sitting on positive info that he can't publicly declare yet - that's my read...Interesting that those rebuttal letters in Science today are citing negative prostate cancer studies as supporting their contention that the XMRV/ME/CFS link is in question. From what Dr Holmberg is saying, and is not saying, we can expect more clarification, specifically linking XMRV to disease in humans.

    Reading the tea leaves
    Holmberg is like a duck: trying to appear calm on the surface, and paddling furiously under the water. Not at all surprising really if they expect mass panic at the presence of another cancer-causing HIV-like retrovirus in the blood supply. His team has likely had to weigh the following dilemma. Which is worse from their perspective: to start a mass panic, and to not even have a validated XMRV test available? Or to rely on the various "safeguards" which currently exist - to prevent blood donation from aggressive prostate cancer patients and/or ME/CFS patients? I would bet a Canadian Loonie (that's our lowly dollar) that they have consulted their lawyers and determined that their butts are covered - and that from a public health perspective, they're doing the right thing. Whether I agree with this is another matter entirely. Given the relapse/remitting nature of ME/CFS, and the very real possibility of remitting patients to donate blood, I'd say they are on thin legal ice.

    But what's somewhat reassuring is that they are busily getting their "ducks in order", so they're not caught flat-footed when the news breaks.


    "So we are looking at the different possibilities as far as strategies in a risk assessment if it does prove that XMRV is a causative agent for disease in man, that we will have procedures in place to mitigate the risk
    ."

    (Apologies for all the duck analogies - Parvo loves duck)
    Sources:
    I lost track of which videos I was watching, but from what I can trace, these quotes above were from the following YouTube videos:
     
  19. Dolphin

    Dolphin Senior Member

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    Tiny oops: technically we can not be sure where between 10 and 16 the figure is (it would be 10 by the Fukuda criteria in 1994).

    Officially what they did was expand from 16 to 43.

    (This is a little technical but the first two paragraphs shows the CDC haven't been truthful)

    However if one looks at what they did (Table 2), 6 of those 16 had previously been diagnosd with major melancholic depressive order between 1997 and 2000. Before the 2003 revision, having that (major melancholic depressive order) at any stage was an exclusion. This was loosened to not having it for 5 years before getting ill, in the 2003 revision paper led by the CDC (not the empiric paper which is a 2005 paper].

    But, checkily, the CDC didn't stick to their own guidelines on this and in the 2005 empiric paper said that the 2003 revision paper only excluded current major melancholic depressive disorder. This was really very odd behaviour to be so blatantly lying in public and suggests that they were desperate. I point this out on the paper's comment section: http://www.biomedcentral.com/1741-7015/3/19/comments#285572

    So anyway, 5 of these 6 individuals had melancholic major depresson and CFS symptoms between 1997 and 2000 and 1 had melancholic major depression and ISF.

    So there is a small chance that an individual had melancholic major depression in 1997 (as opposed to 1998, 1999 and 2000) and both the melancholic major depressive disorder and the symptoms resolved in 1997 - they then might just squeeze into the five year requirement (this testing was January-July 2003): "we now recommend that if these conditions have been resolved for more than 5 years before the onset of the current chronically fatiguing illness, they should not be considered exclusionary." But while the probability is not very very low for 1, the chances of this being the case for all 6 is miniscule.

    Anyway, not everything to do with understanding the empiric criteria is as relatively difficult* as this.

    * Although technically, I don't think this is too complicated either if somebody has read the 2005 empiric paper and understand it.
     
  20. Cort

    Cort Phoenix Rising Founder

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    Was that exactly what she said? I completely missed that...
     

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