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Article: The Phoenix Rising Board Letter to CDC CFS Research Chief Unger

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 25, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Snow Leopard

    Snow Leopard Senior Member

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    Several autoimmune disorders predominantly effect women. So it might not be such a big mystery with further research.

    With regards to definition, see my reply to the Unger biography post. The empirical methods can infact be empirically optimised so as to match the Fukuda or CCC groups more closely. The fact is that if the empirical definition selects a group 5-10 times larger than the strict Fukuda definition, then it clearly needs to be optimised.

    I like your suggestion of measuring physical correlates of stressors.
  3. WillowJ

    WillowJ Senior Member

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    I agree with Snow Leopard regarding women and autoimmune disorders. There is a good deal of evidence that ME/CFS seems to be an autoimmune disorder.

    Is this letter already sent, or is it posted for constructive comments?

    Either way, there are a lot of good points there. Thanks, Cort.
  4. Freewindblowin

    Freewindblowin

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    "Evidence Based" sounds like a good term, but it is actually a wasteful, time delaying ideological invention which relies on "counting"-scrutinizing labs, doing "cook book" medicine and increasing visits that run up income to the wrong entities. It de-emphasis clinical skills, and is not patient focused. Most of the EHR programs being incorporated result in only one or maybe two sentences of the chart note being about the patient, and emphasis put on fine tuning numbers in blood analyses. Articles based upon "Evidence Based Criteria" with an incredibly arcane, convoluted scoring system as well as how it permits any given writer picking and choosing what articles to write an "evidence based" article on. You end up getting a really simplistic, lazy poorly, informed article in the Cochrane library and the like or elsewhere. I am not impressed with the method. Without doctors having good clinic skills and using the ole' squash (brain) you get nothing but mediocrity.

    However, Dr. Kerr's paper on the seven subsets of ME/CFIDS does a wonderful job at setting out the subsets. The infectious form is the worst to have, and I believe (I am not going to do a list of well known citations in this particular post.). The fact that the break out cases involve heterogeneous cohorts are typical of the disease. Following these patients, and their families and associates is important, as the infection is found to spread and affect people later in life while they may not have had an acute case in the beginning. There is a tremendous continuity from these outbreaks and papers going back into the earlier to mid to later 1900's are congruent. It is the same stuff.

    ME/CFIDS is not necessarily homogeneous nor is it predictable. Trying to sweep aside this acutely ill group does little good in studying the disease and its later effects-on how long the patient's lifetime is, what other conditions are acquired, etc. I wasn't impressed by most of the soft research that was funded by some groups with serious $ and I am not happy to listen about diluting the issue by looking at "commonalities" in other disorders. That has already been done and is not helpful-this disease is best clinically determined by real, clinically trained doctors that know their sciences. This, rather than having patients' pocket books emptied by the exclusion criteria of the present CDC definition.

    Doctors are not "Providers."

    By a close analogy, this disease is similar to the West Nile Virus model in that how the exposure seems to fare at the beginning does not predict how it affects patients later-it can relapse and remit and kills people years after what appeared to be a "mild" infection. In fact, many patients after a mosquito borne encephalitis find themselves spiraling into ME/CFIDS.

    Unfortunately, the governing boards of many of these organizations that purport to represent ME/CFIDS patients try to "own" them. Boards quickly become isolated and superior, thus woefully out of touch with the real community of sufferers. Boards in isolation can easily acquire and project-"we know what's the best way for you". This is easy-because many of us are too sick to ride herd on those Boards and they take on their own life. Hand wringing about communication communication is terribly passive. We need science, and to help that science go forward. Whenever I did see a CDC "awareness" ad-it was in the very back pages of the women's magazines, buried.

    The "post-exertional malaise" has its roots in the science of the immune system, biochemistry. It is the science that gets us to cures. Appeasement and groveling hasn't done a thing for this community. But hard headed good science and good medicine has, as have some forward thinking advocates.
  5. Cort

    Cort Phoenix Rising Founder

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    I agree Snow Leopard about the ED. The structure of the ED is fine..its the criteria that were problematic. I would note that the CDC did call in a broad group of ME/CFS professionals who agreed on the need to develop quantitative criteria to measure different aspects of CFS. This was all done with an eye at uncovering subsets in CFS.

    Unfortunately once that was established the CDC went into their hole and developed the criteria without outside input - and there the problem lies.
  6. Cort

    Cort Phoenix Rising Founder

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    Thanks FreeWindBLowing - after looking it up my feeling was that 'Evidence Based Medicine' sounded good but particularly in CFS really didn't apply because so many treatments that do help have not been looked at in studies and we know that even the studies get it wrong - as the Rowe fludrocortisone study which found that that drug does not help - even though Rowe says he uses it all the time.

    Until we uncover subsets - I think we'll have to rely on physician input most heavily.
  7. Cort

    Cort Phoenix Rising Founder

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    Constructive comments are welcome. Thanks!
  8. omerbasket

    omerbasket Senior Member

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    I read a large part of it, and I tend to agree with most of it, but, there is a big question: Who are "we"? Who elected you to represent them? Why would patients that do not agree with you have to see your opinion get accepted because you make it look like you're speaking for a large group of patients?
  9. asleep

    asleep Senior Member

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    Who are you speaking for?

    Cort, who do you purport to speak for with this letter? You certainly don't speak for me and, I strongly suspect, many if not most others. The reasons why:

    1. No mention of XMRV/HGRV: It's well-established that you are staunchly anti-XMRV, but to write a letter that claims to speak for many but fails to even mention this is like writing a letter about AIDS in 1987 that fails to mention HIV.
    2. Too little WPI support: You mention the WPI only twice (somewhat in passing), probably because to avoid mention of both XMRV and the WPI in the same letter would reveal your personal bias too clearly.
    3. Too much CAA: As far as I can tell, the online ME/CFS community has rather strongly rejected the CAA as their representative (from the various polls to the routine and widespread denouncement of nearly all of their recent actions). Their abysmal performance at the NIH SoK confirmed why. Why then are you clearly propping them up to the CDC for this entire forum as not only a relevant player, but an actual leader???

    You make some good, albeit innocuous, suggestions. But overall, this letter ingratiatingly skirts the real issues: funding and support for the WPI and XMRV research.
  10. WillowJ

    WillowJ Senior Member

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    Additionally, they need to study ME/CFS as a neuromuscular disorder. Their own Whistler (2005) excercise responsive genes study, the Dubbo Infection Outcomes genetic study (which Reeves signed), the work of Yves Jammes, and the work of Tiziana Pietrangelo all indicate a channelopathy and a neuromuscular disorder. Rich VanK says this seems to be secondary to a metabolic disturbance, and that etiology would be well worth looking at.

    Is there a way to still be diplomatic about the PEM thing but be a little (or a lot) firmer about it?

    The CDC already partners with CAA (for education initiatives, for example, and occasionally in studies). There is no need to ask them to do this.

    Allied Disorders - good suggestion! is there a way to emphasize that these should not be lumped together as a common diagnosis, as is the fashion with some groups? It's subtlely implied with the mention of "differences," but subtlety may not be effective.
    Perhaps it would be best not to focus on fatigue as a common factor. Fatigue is rarely a unifying factor in disease--an inordinate focus on fatigue has contributed to the mess we find ourselves in today, and the fatigue of ME/CFS is unlike the fatigue of MS (which is unrelated to activity).
    However, MS is still a helpful condition to study as an allied disorder. Myasthenia Gravis would be an excellent condition to add; there are some similarities--acetylcholine abnormalities of different etiologies, and muscles get weaker with use. In fact some of the mechanical diagnostic assessments for MG muscle strength might be useful in ME/CFS.
    Also, let's please not say "mysterious." It would be more accurate to say "under-investigated." Or just leave that word out, either way. Or say they are "complex." But I don't like using a word that impatient people could (inaccurately) infer that the disorders have little basis in biology.

    Toolkit - great suggestion, very needed! please include the stipulation that the physicians consulted should come from a perspective that considers CFS a biomedical disease distinguished by PEM and cognitive difficulties (per Jason) and low NK cell function and unusually strong and lengthy oxidative stress (the best-replicated findings).

    Communication - needed and a good point, but it's probably necessary to point out that CDC needs to engage in bi-directional communication, a dialog, with CDC learning, if we can find a gracious way to say that. A CDC monolog to patients (which is what we would expect if no changes occur) is not going to help.

    Financial accountability - great points, but I'm pretty sure there are people not credited in your statement who have worked on this.
    this part is great!

    I take issue with the notion that CBT/GET are evidence-based (I'm sidestepping the "value of evidence-based approach" discussion--which is, itself, a really good point; I guess I'm addressing the etymological meaning of the words).

    was there a reason you dropped the "no more psychogenic research" point? I figure you had a reason; perhaps you found it unnecessary? I'm not sure whether it's best to merely emphasize biomedical or to also make it clear that the "bad coping" studies with no controls (i.e. they are bad science) are offensive and considered defamatory and trust-destroying.
    (That goes for the "sleep-state misperception" type editorial comments as well, which are considered snide, defamatory, and trust-destroying; a better trust-building conclusion in this example would have been that perhaps sleep dyspnea is a more significant problem than they had previously thought, and they might consider consulting a pulmonologist regarding treatment options, which are available. Do you see, CDC, the difference between callousness and disrespect on the one hand, and caring and respect on the other? If you were the patient, which approach would you trust?)

    Measuring physiological correlates of physical stressors is great! Thanks for bringing that up.

    Also, as far as I can tell, they have only two "hard" scientists in the intramural program at CDC. Unger is, I think, a cell biologist (or was once), and Rajeevan is a geneticist. The others all seem to be behavioural psychiatrists or such. The behaviourists should all be transferred to other departments (although I cannot, in good conscience, recommend that they work with any other patient group, unless they can show they are better scientists than that guy they already sent away, but I'm certain some kind of work can be found, and I would even endorse an educational program to equip behavioral psychiatrists for different fields, such as graphics design). Also the associations with Emory's psychiatry department and with the others of the (bio)psychosocial school, should be permanently revoked. The ME/CFS department, which is officially in the division of chronic Viral and Rickettsial diseases, needs some actual full-time virologists, retrovirologists, and other infectious disease specialists, along with neurologists, immunologists, rheumatologists, cardiologists, pulmonologists, endocrinologists, oncologists, and hematologists.
  11. Cort

    Cort Phoenix Rising Founder

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    Phoenix Rising is speaking only for Phoenix Rising -as the title indicates. I recognize there are other opinions and we wouldn't dream of trying to represent them. :eek::eek::eek:

    The letter was put together by the Board of Phoenix RIsing. You're of course, free to write Omerbasket's letter to Dr. Unger or to form a group and call it that group's letter to Dr. Unger. PANDORA had a similar

    I know that we have disagreements about different aspects of ME/CFS and I don't know if that divide can be bridged :rolleyes:. - I would never say I represent your opinion and I'm sure the opposite is true as well. This is a big community and everyone has a right to their opinion.

    I do think there are things in there that both of us can agree on?..... Maybe????
  12. Cort

    Cort Phoenix Rising Founder

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    I really don't purport to speak for you asleep and this letter does not claim to to represent the ME/CFS Community. (I don't know if anyone could do that). This letter represents the views of the Board of PR - that's all.

    We believe there should more research for ME/CFS period and that is what we chose to concentrate on. That does not exclude XMRV. We believe that its important all the orgs get funding..including the WPI and the CAA. I understand that you feel the WPI is the top priority and I can understand why. We feel that both orgs have vital and important research programs and both should be supported.

    This letter, though, was really not about that as the CDC doesn't fund either org nor do they, to my knowledge, accept grant requests from them - so their interaction with the WPI and the CAA is limited to collaboration and that's what we focused on. We feel that more collaboration is essential for the health of the field. Personally I found it astounding that the CDC had never contacted the WPI prior to XMRV - in the same way I found it simply amazing that they had never contacted the Pacific Fatigue lab after their repeat exercise studies.

    I got your complaints, though - too much CAA and not enough WPI and not enough XMRV (Do you really want the CDC to study XMRV more??? ;)) (Of course they are in both the Lipkin and BWG studies..)
  13. Cort

    Cort Phoenix Rising Founder

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    I agree that PEM is absolutely key - and thanks for all those references.....If you think its not firm enough perhaps we should firm it up.

    I think they have cut ties - but in any case that partnership didn't really work out well. I would be amazed if the CAA did something like that again.
    Good points - after looking at he Light study at the SOK these disorders are looking less and less like allies actually.

    I agree that that's not a good word....maybe complex, not understood....I'll take mysterious out...

    Good point again- hadn't thought of that.


    this part is great!

    I take issue with the notion that CBT/GET are evidence-based (I'm sidestepping the "value of evidence-based approach" discussion--which is, itself, a really good point; I guess I'm addressing the etymological meaning of the words).

    was there a reason you dropped the "no more psychogenic research" point? I figure you had a reason; perhaps you found it unnecessary? I'm not sure whether it's best to merely emphasize biomedical or to also make it clear that the "bad coping" studies with no controls (i.e. they are bad science) are offensive and considered defamatory and trust-destroying.

    (That goes for the "sleep-state misperception" type editorial comments as well, which are considered snide, defamatory, and trust-destroying; a better trust-building conclusion in this example would have been that perhaps sleep dyspnea is a more significant problem than they had previously thought, and they might consider consulting a pulmonologist regarding treatment options, which are available. Do you see, CDC, the difference between callousness and disrespect on the one hand, and caring and respect on the other? If you were the patient, which approach would you trust?)

    Measuring physiological correlates of physical stressors is great! Thanks for bringing that up.

    Also, as far as I can tell, they have only two "hard" scientists in the intramural program at CDC. Unger is, I think, a cell biologist (or was once), and Rajeevan is a geneticist. The others all seem to be behavioural psychiatrists or such. The behaviourists should all be transferred to other departments (although I cannot, in good conscience, recommend that they work with any other patient group, but I'm certain some kind of work can be found, and I would even endorse an educational program to equip behavioral psychiatrists for different fields, such as graphics design), and the association with Emory's psychiatry department permanently revoked. The ME/CFS department, which is officially in the division of chronic Viral and Rickettsial diseases, needs some actual full-time virologists, retrovirologists, and other infectious disease specialists, along with neurologists, immunologists, rheumatologists, cardiologists, pulmonologists, endocrinologists, oncologists, and hematologists.
  14. omegaman

    omegaman

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    Why would you want to get away from studying victims of ME/CFS outbreaks. They are probably one of the best ways to make sure you are studying a tight cohort of ME patients?
    Post exertional Malaise has it'sown defintion issues. How do you define PEM . What cutoff points, measurements and perhaps biological measurements are to be used.
    Any out of shape person with depression can state they have PEM after exercise when questioned. Why no mention of the cognitive symptoms which are just as much of a hallmark as the PEM symptoms?
    I do not believe Incline Village was a heterogeneos group. THey were showing having brain scans with high intensitiy punctate lesions showing up and reactivated EBV. SAying they are heterogeneous is like saying AIDS patients are heterogeneous because all there symptoms and actived infections are not the same when it is obvious they have the same illness when you look at the whole picture of their health.
    What this illness desperately needs are some real impartial epidemiologists to start from scratch and go back and study these outbreaks and the family members of people in these outbreaks and see what the heck happened and is continuing to happen as far as the infectiousnes of this disease.
    The family survey on this site seems to demonstrate how transmittable this disease possibly is and somehow the CDC has managed to ignore this issue for 30 years.
  15. WillowJ

    WillowJ Senior Member

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    about the allied disorders, though, whether or not they are actually allied, the funding disparity of women's conditions (whether properly or improperly so classified) that you had under that heading, is a really good point to bring up.
  16. Mya Symons

    Mya Symons Mya Symons

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    Questions on Phoenix Rising Letter

    I like this Cort, but there are a couple things I don't understand.

    1- You mention creating a new definition for CFS/ME--Why not emphasize using the Canandian Criteria?

    2- What are the specific "physical stressors" you are talking about?

    3- With such little research money put into pysiological causes of CFS/ME, can you be sure that it is a "homeostasis" problem (or is that a symptom and not the specific cause)?

    4- Why don't you mention XMRV? I understand that there are many people with CFS who tested negative for XMRV or may not have XMRV, but isn't it still important that we get more research time and money invested in XMRV? Shouldn't we work on ending the contamination controversy and get the answers for the patients that are XMRV positive and could have CFS/ME due to XMRV?

    5- I personally think the number one issue should be more research money spent on physiological studies and there is no way to over emphasize this point, even if it has to be said more than once in a letter. (Which you did, but perhaps it should have been first in all caps or some such thing.)

    6- One more question--Who is this letter suppossed to represent? Does it represent the opinions of you, the moderators and the administrators of Phoenix Rising only? Is Ms. Unger aware that many members of this forum did not see this letter until now and it does not necessarily represent the view point of all of us? I think it might be a good idea to mention this to her. I see now where you said it represents the board of PR only. Can you please make sure Ms. Unger knows that is the case?
  17. laura

    laura Senior Member

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    Just FYI, CBT/GET are considered "evidenced-based" because that is the language used in the psychotherapy world. I don't know how the term is used in physical medicine. But all of us therapists know that, in our field, the term "evidenced-based" is code for CBT.

    [CBT devotees love to do research. In CBT everything lines up neat and organized, it's makes it easy for a researcher to set up a study that purports to investigate psychological functioning.]

    I do think making the distinction between research based upon physical symptoms, and unnecessary psychogenic research is important. We need to move past that already!
  18. WillowJ

    WillowJ Senior Member

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    this is a side track for this thread, but I would love to hear more about how this works in another thread. (How does CBT produce ostensible organization? How did "evidence-based" come to be code for CBT? Is that a tacit admission that prozac is not evidence-based? Or just that ink spots and Freud are not?)
  19. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    While some subsets may be dominated by women, the overall ratio of men to women in all subsets is highly 'debatable' (eh,eh). Referring to a recent public statements by one of the few research teams looking at solid cohorts and biological causes, they are finding ME/CFS in equal measures; it doesn't discriminate with age or sex. Why is this old chestnut, oft repeated by the CDC , held up as gospel by the CFS community? Why perpetuate the myths?
  20. Michelle

    Michelle Decennial ME/CFS patient

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    I think a letter like this to Elizabeth Unger has value, however I have the following concerns:

    1.) Who are the board members of PR? Where is information about them available on the PR website?

    2.) You need to explicitly state that this reflects the opinion of the board members of PR. Phoenix Rising itself has become a 1000+ strong community and there is nothing to indicate that this letter reflects the views of the community.

    3.) Why encourage the use of "ME/CFS?" My understanding -- and why I supported it -- was that it was meant to be a transitional name only. If there is any organization that can transition us from the universally despised "CFS" to something far more appropriate, it is CDC. To borrow your own phrasing, CDC should "utilize the expertise of the ME/CFS research communty to" find/decide upon a new name that better reflects our best understanding of the pathology of this illness. And not just the CDC's current understanding, but the scientific consensus as a whole. And yes, pointing out that they have done precious little to move us toward a scientific consensus, that the fact we are more than a quarter of a century into this disease without any real scientific consensus, seems entirely appropriate. ;)

    4.) SUBGROUP! SUBGROUP! SUBGROUP! If I was allowed to ask Unger or even Reeves only one question, it would be why the hell it has not subgrouped this illness when even its own scientists and research have insisted this is absolutely key to understanding this disease (e.g. Fukuda et. al). I realize you talk about subgroups here and there but this really among the most important - and quite possibly among the simplest - things they could have done/should be doing and haven't/aren't. How do we know that outbreaks are sporadic? They may well be but without subgrouping (and doing other basic epidemiological work) we can't know for sure. The refusal of the CFS group at the CDC to do this one basic thing, along with its financial improprieties, is nothing short of malfeasance - though I can appreciate why you might refrain from using that last bit of phrasing. ;) However, subgrouping should be it's among it's top priorities.

    5.) For the love of God, Buddha, Jesus, Mohammad and all that is caring and compassionate, CHANGE/TAKE DOWN THAT DAMN TREATMENT SECTION on their website (I believe it's separate from the toolkit, but if I start looking stuff up, I'll be here for the next five hours). While professional counseling has its place in helping patients cope and learn to pace, listing it as the number one treatment option is insulting in the extreme as -- whether intentionally or not (though my money is on the intentional) -- it tells anybody who visits that page that ME/CFS is an illness of psychogenic origin. There is no real scientific consensus on how to treat ME/CFS -- I get that. However there is a fairly standard protocol on how to treat symptoms. And everybody outside of the CDC (okay, and NICE, etc.) recognizes that certain SUBGROUPS do respond to certain medications. The day of "well it doesn't help/define everybody" has got to end.

    6.) I think the NIH is -- for the moment -- doing a good job of leading and if Dennis Madigan continues as he is, I'm happy to see them continue to lead as opposed to CDC, who, by the nature of their organizational mandate, is going to be limited in its ability to lead if ME/CFS turns out not to be communicable.

    7.) I understand differences of opinions - we all have our own unique take on the world - but while this letter does have its strengths (I think concerns about the state of ME/CFS "evidence-based medicine," for instance, are well-founded), I don't see why you couldn't just sign the PANDORA letter and follow it up with an addendum clarifying your position(s). My initial gut reaction when I read this letter with its bit at the end about PANDORA's letter was that it was petty. Or at the very least, it was undiplomatic to refuse to sign it and then send your own that points out its flaws. It felt like you were splitting hairs amidst so much upon which you actually agree (yes, I do see the irony in my whining about that while pointing out the - subtle - flaws I see in the letter you've just posted ;)!). I think PANDORA's intransigence about its inability to make any changes to its letter was unfortunate, and I totally get your discomfort with some of its language. Yet at a time when there is so much division in our community, so much back-biting, so much hair splitting about every little bit of language (not that there isn't a time and place for that) that it just seems stating "oh right, addendum - study outbreaks, comparing it with the information we already have - and will continue to get - on gradual onset ME/CFS and physician ed programs should be put together by practicing clinicians, include evidence from all sources, and where evidence is lacking but shows merit for better diagnosing and treating ME/CFS, fund studies to clarify it" would have been far easier, shown more tact, and saved what is sure to be yet another round of this organization snubbed that.

    Sorry, this is just the first time I've felt well enough to vent about anything ME/CFS related in awhile - and again, irony with regard to my last comment already noted.

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