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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. laura

    laura Senior Member

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    answering in a new thread

    WillowJ, responding in another thread is a good idea. I will reply in alternative therapies under the title, why is CBT/GET "evidence-based?"
  2. markmc20001

    markmc20001 Guest

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    Let me first say I don't have much mental clarity this morning to put my perspective into one that was tactful, so my post is a bit dry but might have a few valid good points if you can get the gist of what I am trying to say.

    Agree. trust is non-existant for the CDC

    I would suggest changing this to. The CDC needs to apologize for for obfuscating the true nature of ME for decades. The CDC also needs to apologize confusing ME with being some psychological illness while aiding big pharma in screwing the public out of disability benefits. More importantly, the CDC should apologize for screwing patients out of years of potentially scientific breakthrus in the years the CDC has proven to creating bogus science that is designed to confuse and deny.

    I would suggest something more like. PLease completely delete all past research relating to CFS to some kind of Psychological disease. Begin properly educating people on the true nature of the disease, which the CDC KNOWS BETTER THAN ANYBODY ON THIS PLANET.

    This should be the CDC needs to STOP conspiring with Big Pharma, and faux advocacy organizations like the CAA, And Start removing roadblocks for the WPI and other well meaning researchers like Dr. Kenneth Friedman.

    This should probably read. Stop communicating through SPIN organizations.

    The CDC can't be a real leader until it recognizes and addresses all the crimes of the CDC, and changes leadership to an outsider that isn't subject to the same flawed policies of the past.

    Start outsourcing research to outside researchers with intentions of finding effective and affordable treatments now.

    This could be good if overseen by a panel of patient supported physicians.

    All future research should have the primary goal of finding the root cause of ME, and finding affordable treatments that can relieve symptoms now or lead to remission. Treatments should not necessariliy have a profit motive or be developed by standard big Pharma. I suggest a team of people such as Rich Van K(methylation), Burt Berkson(alpha lipoic Acid), Boyd Haley(OSR#1), and others that have found ways to enhance bodies own immune system to suppress viruses and bacteria.

    Sounds good.

    no comment

    Start by apologizing for past actions, and show good intent by focusing on whatever leads to 1. effective treatments. 2 getting at root cause 3) accurate and effective diagnosis. In that order, with no distractions, unless it leads to the above 3 mission critical goals.

    My two Cents.

    Markmc2000
  3. Nielk

    Nielk

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    Cort,

    When you told us about the new Coalition 4 ME/CFS, I was so excited because I believe that pooling all our resources together and speaking with one voice is the ONLY way to achieve any change.
    The sum is greater than our parts put together because there is a tremendous advantage in numbers.
    It's like the difference between a March of a million or a March of ten


    The Coalition 4 ME/CFS includes
    Chronic Fatigue Syndrome/ Fibromyalgia Organization of Georgia, Inc.,
    CFS Knowledge Center,
    CFS Solutions of West Michigan,
    PANDORA, Inc. (Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research & Advocacy, Inc.),
    Phoenix Rising,
    Rocky Mountain CFS/ME & FM Association (RMCFA)
    Wisconsin ME/CFS Association, Inc,.
    Vermont CFIDS Association, Inc.


    I think that we should have just signed the PANDORA letter with them.
    The two differences that you mention does not warrant a break away from them.
    It doesn't warrant a seperate letter from phoenix rising to Dr. Unger.
    It will just confuse the matter further for her.
    One strong letter from the Coalition would have made so much more sense.
  4. Cort

    Cort Phoenix Rising Founder

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    If you look at the original paper you find they contained gradual and acute onset patients. While there were the MRI results - they weren't found in everybody and they were often found in different areas of the brain in different people. After more research, using the technology they had then, more of them had reactivated EBV than controls but, as I remember, a good number of controls also had reactivated EBV.

    A study was done I believe of people with HHV6 activation (stretching way back here - hope I get this right) from that area - which found a surprising amount of recovery...which was really weird..although it may be like the Dubbo studies that most people do recover within a couple of years and its the rest of us that linger on for some reason. Or maybe the definition of recovery is not very good.

    In any case, we felt there are too many people who do not appear to get triggered by outbreaks (that they can see) for that to be a key focus.

    I agree that it is way past time for family surveys - and the one we took her and that Dr. Deckoff Jones is doing is quite illuminating. We also missed the cognitive component...I agree.
  5. Cort

    Cort Phoenix Rising Founder

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    Why not emphasize the Canadian Criteria. We didn't overtly mention the Canadian Criteria because, I at least, don't believe the CDC will simply move over to that. I think the only they will do that is to do research on the key feature of CC - post-exertional malaise. That section was an attempt to get them to document in studies, that feature - and then come up with a CCC definition or it use that definition. Essentially we were trying to get the CC definition which we support completely in there.

    Homeostasis - I think we can guess that the problem does involve homeostasis, which is really a broad term, but we certainly don't know what's causing it; ie it could very well be a pathogen..or it could be a series of breakdowns caused by something else. So, no there is no sense that this disorder is caused by 'homeostasis' and we wouldn't want to conclude that.

    Physical Stressors - can involve alot of things actually, Exercise is the obvious one and there's Tilt table testing, but there are also drugs that researchers give to put systems like the HPA axis or the autonomic nervous system under stress. These studies tend to have more significant results We should also mental stressors like doing mental tasks in fMRI's.

    XMRV - I think we kind of felt that the CDC has played its role in XMRV and is part of a series of studies lined up (BWG, Lipkin) which will probably tell the tale - so we wanted to focus on other areas that get less funding or attention.

    More research into pathophysiology - I and I'm sure, the board, completely agrees that more research into pathophysiology is our main request. I'll see if we can tweak that.

    Board - we will make clear that this letter was developed by the Board and is not a product of the participants in the Forum (altho we will make adjustments to it)
  6. Cort

    Cort Phoenix Rising Founder

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    Thanks Nielk - all I can say is that I get your points and we had a big discussion about this and in the end that's how the Board voted. I think it could have gone either way but in the end that's the way it went. Your concerns were certainly thought and we'll see how it goes the next time.
  7. liquid sky

    liquid sky Senior Member

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    Where are the members of the board listed?
  8. Cort

    Cort Phoenix Rising Founder

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    Yes there is info on them on the website but honestly the website - whch has been detached from the blog - and which I have trouble finding and parts of which look horrible right now, for some reason - is a problem. I tried to search for that info on the internet and couldn't bring up the page. (We're in a transition period :)).

    The Board members are Adin Burroughs, Mark Berry (both moderators/admins on the Forum), Pat Sonnett (Miami-Coral Gables Support Group) and Christina Gombar (writer). All have ME/CFS; Mark, myself and Christina are working 'part-time'.

    We all agree that ME/CFS name is transitional - hopefully briefly transitional.

    We agree that the toolkit is really, really, really poor and we tried to outline a way to ensure that that would not happen again; ie by using ME/CFS experts. We should request that they replace it with a new one put together by ME/CFS experts. Good idea.

    Sign the Pandora Letter and Provide an Addendum - that was discussed as well and it just didn't make it. :cool: I do get the real need for organizations to work together and to make that the focus rather than getting everything completely right. Thanks for your inputs. In order to slay Goliath all these little Davids really do need to band together. Good point.
  9. Mark

    Mark Acting CEO

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    Folks, having only had time to briefly scan through the questions raised in this thread, and being very pressed for time, I'll just say now that I'm a board member of Phoenix Rising and that these questions and concerns are recognised and are being addressed. There is a lot of work to be done...

    I don't want to make excuses, but I think that the timing of the decisions we made about this letter was unfortunate for us, because we were in the process of transitioning to becoming a non-profit organisation when certain decisions had to be made, and the deadlines we were obliged to work to on this issue, at a time when we were tackling a lot of other issues as well, were just too tight for us all to deal with in an ideal way. I don't believe this was anybody's fault, it was just the situation we were all in.

    Sorry I don't have time to answer all your questions just at the moment, but I want to assure you all that we do take them on board and we are working very hard to improve the way we do things.

    Thanks for bearing with us...

    Mark
  10. WillowJ

    WillowJ Senior Member

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    standing O for michelle!

    markmc, really good points. you're correct that this is the only way to really prove the CDC is dedicated to change and win our trust. it isn't exactly diplomacy, tho. it is exactly what I would love to see Congress and the White House insist upon. I do consider what you said to be an eminently just outcome. and besides helping us, it would improve the state of all "MUS" because then the medical field would fear doing something like this again--which is precisely as it should be.
  11. Cort

    Cort Phoenix Rising Founder

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    I have changed the title and the interior of the letter to emphasize that the Board of Phoenix Rising put the letter together and not the Forum participants. In retrospect I can see how weird it must have looked and I apologize for that mixup and appreciate everyone's comments who brought that to light.
  12. Forebearance

    Forebearance Senior Member

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    Dear Cort, the type on your front page articles seems to be teeny tiny lately. I have to blow it up many times to read the articles. Could you please use bigger type?
    Thanks,
    Forebearance
  13. WillowJ

    WillowJ Senior Member

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    sorry, I should have clarified... (saying it's from the board is a good idea because there are a few points not representative of the PR community), but the standing O was for the points 4, 5, and 6: Subgroup, revise that horrible treatment section (a separate topic from toolkit), and let Dr. Mangan take the lead instead of CDC (even though this Disease does seem to be communicable at some point, which is not exactly what Michelle said).
  14. MishMash

    MishMash *****

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    Interesting observation about the punctate brain lesions in ME/CFS. They do occur in asymptomatic people. Unfortunately, the thumb-nail-sized lesions that appear in ventricular areas of the brain in MS patients also show up in asymptomatic subjects as well. But in correlation with "comorbid" symptoms, they are very important in the diagnostic process. There is complexity, confusion, and unexplained variation in most neurological illnesses. It seems, therefore, anatomical observations are valuable, but not perfect.

    After twenty years plus of watching the studies coming and going, waxing and waning, it seems unlikely that ME/CFS actually caused by a single organism or infection. More likely, it is the body inflicting a mild traumatic brain injury on itself. Followed by the cascade of physical and pyschological associated with deep brain malfunction. Cort's intuition that "outbreaks" may be of sideline interest, but are not the main cause of the disease, is probably correct. I would add that the genetic component (for true ME/CFS) will probably turn out to be a big factor.

    Cort's call for special consideration for female problems vis-a-vis ME/CFS is spot on. After having been married to one for many years, my opinion is: pity the poor women. Have you ever talked to a poor gal who has gone to a gynecologist with one of myriad reproductive organ-related issues? They usually are faced with two treatments: go on the pill or get a hysterectomy. There is also the medievel treatment for endometriosis of flushing the uterus with boiling water (yes, it is true). Their range of treatments is very primitive. More attention is due.
  15. liquid sky

    liquid sky Senior Member

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    Eventually, I think we will have to break into different groups to determine to real conduct good research that leads to causes and treatments (may I dare say cures?). I don't think you have to get ME/CFS in an outbreak for it to be infectious. There is an unusual amount of health care workers, teachers and flight attendants afflicted. All of these are exposed to more germs than the normal person. Some to more vaccinations also.

    Maybe it is time to distinguish ME from CFS?
  16. Mya Symons

    Mya Symons Mya Symons

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    I am not sure that attempting to distinguish ME from CFS will work because the two are already associated. I think the only way XMRV positives will get what they need will be to create a separate association for retroviruses only (other than HIV). As long as they still call the disease associated with XMRV Chronic Fatigue Syndrome or Myalgic Encephalitis, those people will be lumped in with all the other groups of people (cohorts) diagnosed with CFS. Research monies will have to be split up and there will be conflict between all the different groups of people who have been diagnosed with CFS or ME. Further, scientists will still be looking for guidance from the CAA regarding XMRV.

    To avoid all the confusion, to get the research money for XMRV, and to get the treatment XMRV positives need, a retrovirus association should be started and the disease associated with XMRV should be named something else, such as Xand disease. Perhaps to get the monies needed for research this association could include HTLV-1 & 2 and parvovirus.
  17. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    MishMash
    MishMash, I am sorry to hear about your wife's treatment, but I think if you talk to me/cfs males they will tell of similar experiences. Apart from the flushing business. I have a myriad of sexual organ-related issues, (including agonizingly painful testes, bladder pain, ejaculation pain, ejaculation without climaxing, failure to climax, reduced urine flow, leakage, increased frequency of urination) and no viable treatments... I believe some cfs males have even worse problems. Apart from my abject fear about going to a doctor in the first place (yeh male stereotyping), the usual response is to check for prostate cancer, then to treat me as a hysterical cfs patient (deliberate use of the word hysterical here to show that the doctors are not just labelling women as hysterical).

    What I find really interesting is PR's (board) focus on a relatively niche issue (no intended slight to fibro or endo sufferers), while leaving out mention of HGRV's - seems to be a case of 'Nothing in this hand, oop's nothing in that hand either'.

    I also note that a focus on women and pain has crept into the language PR (board) is using, at the same time as the CAA has decided to focus their attention on these issues. This contributes to suggestions of alignment of agendas between the PR (board) and CAA, which may not be in the interests of forum members. It is a pity that such agendas are not fully discussed in an open manner.

    I still don't get the letter, even with the concessions (forced). As simply a missive from four or five people who do not represent the views of anyone, why is it being held aloft as a 'Peace in our time' contribution to Pandora's earlier efforts.
  18. fla

    fla Senior Member

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    Looking at why women are affected more frequently will lead to looking at autoimmunity and there is a lot of literature about retroviruses and autoimmunity so they'll probably end up looking at retroviruses eventually.
  19. Joopiter76

    Joopiter76 Senior Member

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    Evidence based medicine - what it is and what it isnt
    David L Sackett,
    William M C Rosenberg,
    J A Muir Gray,
    R Brian Haynes,
    W Scott Richardson

    http://www.bmj.com/content/312/7023/71.long

    David Sackrett is the father of evidence based medicine. It seems that the once for better patient care developed creteria are now hijacked by most of the health care providers, physicans and so on.

    citations form above link:

    "Evidence based medicine is not cookbook medicine. Because it requires a bottom up approach that integrates the best external evidence with individual clinical expertise and patients' choice, it cannot result in slavish, cookbook approaches to individual patient care. External clinical evidence can inform, but can never replace, individual clinical expertise, and it is this expertise that decides whether the external evidence applies to the individual patient at all and, if so, how it should be integrated into a clinical decision."

    "Evidence based medicine is not restricted to randomised trials and meta-analyses. It involves tracking down the best external evidence with which to answer our clinical questions."

    "However, some questions about therapy do not require randomised trials (successful interventions for otherwise fatal conditions) or cannot wait for the trials to be conducted. And if no randomised trial has been carried out for our patient's predicament, we must follow the trail to the next best external evidence and work from there."

    So these statements show that evidence based medicine is primary for the patient and its illness not for "confirming studies" the statements also show that evidence based medicine also allows to treat patients if they cannot wait for trails beeing carried out.

    So the mainstream medicine is misinterpreting the meaning of "evidence based medicine" of today.
  20. WillowJ

    WillowJ Senior Member

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    There is no such thing as CFS. It's perfectly appropriate to subgroup within ME (or ME/CFS), and I really don't care whether we use one disease title or several for the subgroups, but I do care whether we say there is some real disease of CFS as opposed to ME. There is no such thing as CFS, never has been, never will be.

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