Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 13, 2010.
I made a thread somewhat related to this in the advocacy section but if Cort would be willing to put a PayPal button on the homepage that would be best.
Gracenote, what I thought was a shocking statement was that they don't want XMRV to be linked to CFS and what is why they are not funding it. Since the 1980s, when Congress funded CFS and it was misspent, there has not been enough money, despite CAA efforts to the contrary. So I can see why they would not increase funding now, given the economy.
So I finding it revealing that Dr. Mikovitz said it is for the reason you stated. Can you give me any more on this statement?
I don't really have anything more to add. Dr. Mikovitz was just offering her opinion, in a hurried email, that she thinks the WPI is not receiving grant funding "because of politics," because of "efforts worldwide to make certain that XMRV has nothing to do with CFS." Other than what I've posted, she didn't go into any more detail.
I emailed her originally to ask when I would find out more about my own XMRV status whether it is "active" or not. Then I emailed her back to thank her and ask what we, as patients, could do. As you can see, she did more than answer my questions. She was not intending, however, to make a public statement. I think it will help to remember that Dr. Judy is new to the CFS world and is rightly bewildered and frustrated at how ME/CFS is not being funded. It is so clear in her mind that this is a real disease; in my opinion, it is unbelievable to her, especially after the Science paper, that the money isn't there.
I think I've wrung all I can out of my surprising correspondence with our Dr. Judy. I really don't think there is anything else I can add.
We should ask for - or ask our representatives on the CFSAC panel - to demand an accounting of that the federal government is doing on the XMRV -ME/CFS connection. We should find out how many dollars the NCI, NHLBI and most of all NAIAD is putting into this. NIAIAD stands for National Institute For Allergy and Infectious Diseases. That is where the CFS program was centered from 15 years. They should be taking the lead on this. They should have a representative at the CFSAC meeting explaining what they are or are not doing.
Sugggestion: before the May CFSAC meeting, Dr. Anthony Fauci, NIAID Director, should be asked for his position on ME/CFS to be posted online-- here-- so everyone knows where he stands.
What he thought 18 years ago (Newsweek, 9/7/92): "researchers will succeed at isolating unusual viruses in (ME/CFS) patients...most of these viruses will turn out, on close inspection, to be innocent bystanders."
If "innocent bystander" continues to be used to justify no ME/CFS research, Fauci/NIH should be challenged to prove it-- with research. They need safe, effective FDA approved antivirals specifically for XMRV, HHV-6, EBV, enteroviruses, etc. and clinical trials to prove-- one way or the other-- what role infective agents play in ME/CFS.
The virus doesn't care what we think.
The actual cause(s) and pathologies of the disease don't care what we or anyone else believe they are.
It would be a tremendous relief if this maddening disease, an armed and violent shadow, a malevolent ghost, an untraceable bomb, turns out to have a single cause and can be cured by holding that agent back. I sure hope so.
But there's no reason to be certain that is the case. XMRV could well be a sideshow, or a hit'n run player. We're sure it exists, reasonably sure it shows up in many (most?) people properly diagnosed with CFIDs but we also know it is seen in healthy people, and we also know that many people have a brief episode of CF symptoms and throw it off before long; they probably caught a bug and cleared it without their immune system cracking up.
Believing and advocating as if we are have "XMRV disease" at this point could really backfire. I should think what we want is
No longer being ignored / disdained
Research honestly aimed at curing this disease or diseases
Funding in line with the size of the disease and the economic benefits of curing it. ME/CFIDs folk are mostly people who were working/raising families full time. The disease takes people out of the productive labor force and smacks us into dependency; we could turn that around 180 with enough research <grrr>
XMRV is valuable in so far as it gets the above done. The virus itself could be the key outta the cave, or it could be another CMV, Epstein-Barr etc - it's real, it's common in CF folk but removing it does not cure the disease. We don't want research to quit if it's the latter case.
Judy Mikovits believes XMRV could be to CFS/ME what HIV is to AIDS. Due to her collaborative work the NCI and NIH she is way ahead of the other researchers, and IMO, her arguments at this point in time carry more weight.
Is it not rational then to at least think that XMRV is the 'likely' cause of most/many cases of CFS/ME? (see above poll)
To date, every other avenue of reseacrh has led to a blind alley. One that has been cordoned off by the psyche lobby. To not to get behind the WPI with all our weight, would, IMO, be folly.
I'm not saying to anyone 'you can take it as read - XMRV is the cause of CFS/ME'. There are other explanations, ones which the WPI and others are perfectly aware of.
But being overly skeptical in this case in order to appear more rathinal, is simply not rational, IMO. If I were a murder detective and found the murder weapon in someones possesion, that person would be immediately become my number one suspect. I would of course have to consider other possibilities. However, my initial efforts would be to pursue gathering evidence against the most likely culprit. What other course of action could I take that is rational?
There are significant minority of people who see XMRV as unlikely. However, the majority in this poll (60%) see it as either likely or probable, and one only around 15% see it as definetly the cause.
I wonder if these figures are in fact broadly represented on Phoneix Forum? My best guess is probably.
Letter sent to Dr. Fauci, Director, NIAID, yesterday:
Dear Dr. Fauci,
Discovery of the retrovirus, XMRV, in 67% of ME/CFS patients was reported six months ago (Science, October 23, 2009) Based on your HIV expertise and responsibility for NIAIDs research program, would you kindly answer the following questions about the discovery before the May 10, 2010 HHS Chronic Fatigue Syndrome Advisory Committee meeting. On behalf of the ME/CFS patient community, the questions and your responses will be posted online.
1. What is your current position on ME/CFS? In AIDS or Chronic Fatigue? Linking a New Mystery Illness to an Old One, (Newsweek, 9/7/92) you predicted unusual viruses isolated in ME/CFS would turn out, on close inspection, to be innocent bystanders. Do you still maintain this belief in light of the XMRV discovery?
2. In response to the XMRV discovery, what groundbreaking retrovirus science and technology from the past 30 years will NIAID apply to the study of ME/CFS pathogenesis and clinical management, and who on your staff will spearhead this?
3. How much NIAID funding and manpower will be allocated to ME/CFS to study the role of infectious agents-- bystander or notand the cause of immune system activation/damage in this severely disabling disease? What ME/CFS clinical trials will NIAID initiate?
I can't resist a logical debate. :Retro smile:
The circumstantional (sp?) case is very strong. Lots of pieces 'fit', however, all we can prove is that the suspect can be placed at the scene of the crime. Yes, all other likely suspects have better alibies and less motives, but this is far from an open and shut case.
I won't overdue the logical argument, and given all we know and the ambitious plans the WPI have to get to the bottom of this, they are the best bet to get on to treatment, but it's still a bet.
Nice post man. We are on the same page.
I would love to hear his answer, Gemini. Fauci has, from what I have been told, been a thorn in our side for a long time.
These are the people I consider the real culprits - the bureacrats who've decide that CFS is not worth the money. They are the ones that are really killing us.
Science does work out after all. Look at all the research on CBT - altho the quality is up and down - what its basically shown is that at best it has small effects (and many of those could be do to the pacing parts of the program). Its shown us that CBT is not the way out! That should be very clear to everyone in the research community. So that subject is closed. (Yes, it does take awhile for that word to filter down).
If they would just give researchers money to study this disease they could make some progress. But they're not. That's the problem in a nutshell. Its the mostly faceless bureacrats who pull the strings on the money that are really getting us. Wessely can be disproven - he has been - but how to get to these guys...who have their hands on the purse strings and can fund the grants forgood CFS researchers.....that's the real question.
Yes, to everything youre saying, like your faceless bureaucrat designation. The ball is in NIAIDs court, well act on their response, or lack of one, in the next two weeks. Ask Newsweek to do another article?
In the meantime, we can try to put faces on government employees who control ME/CFS funding starting with Dr. Fauci:
.who should get Dr. Mikovits HIV XMRV analogy in spades being one of the worlds leading HIV scientists,
.who should grasp the immune activation/damage found in ME/CFS being an immunologist by trade,
.and, who should respect Kerrs gene expression infection/immune findings in deference to his new boss, Francis Collins, NIH Director.
Fauci has a history of listening to HIV patients hes met in person or who stormed the NIH in protest as follows:
Encounter With ACT UP
One of the most dramatic episodes during Fauci's tenure at NIH occurred in 1989, when angry ACT UP demonstrators swarmed his building, demanding to be heard.
Fauci, like many top government officials, was accused of not doing enough to fight AIDS. The tactics were attention- getting: smoke bombs, staged "die-ins,'' chalk bodies drawn on sidewalks.
"He was public enemy number one for a number of years,'' said writer and activist Larry Kramer, who led the charge. "I called him that in print. I called him very strong, hateful things. . . . But Tony was smart enough to sit down and talk with us.''
Fauci read the leaflets the group distributed and others threw away. "If you put it in the context of they were human beings who were afraid of dying and afraid of getting infected and forget the theater, they really did have a point,'' he said.
When police officers moved to arrest the protesters, Fauci stopped them. He invited a small group to his office to talk.
"He opened the door for us and let us in, and I called him a hero for that,'' Kramer said in a telephone interview. "He let my people become members of his committees and boards, and he welcomed us at the table. You have to understand that he got a lot of flak for that.''
It was worth it, Fauci said. "That was, I think, one of the better things that I've done.''
Above excerpt from:
Have we been given an accurate explanation of why the XMRV virus is proving so difficult for other institutions to detect? The next study that we are all no doubt waiting for is the one being carried out in Sweden with the results due out in the summer. I'm concerned that the failure to find or identify XMRV in the 3 negative studies is going to have very negative reprecussions for us lot with ME as I understand that the American Association of Psychiatrists is considering trying to reclassify ME as a mental condition (see 25% ME Group submission- www.25%megroup.org).
selina, I would point you to two resources. First posted here in forums, then upgraded to an article (and referred to in the European press!) is an excellent analysis by parvofighter.
Scandal in BMJ's XMRV/CFS Research - BMJ and XMRV Unplugged
Second is the open letter by Annette Whittemore to Dr. McClure that prompted this article. http://www.wpinstitute.org/news/docs/DearDrMcClureaw4.pdf
In summary, cohorts, samples, and laboratory methods were lacking in the other studies. Worse, the impetus and motivation for these studies have ties to the 'psych lobby' who are in the midst of formalizing their classification of ME/CFS as a "Complex Somatic Symptom Disorder (CSSD)."
Gemini, unfortunately unlike his response to AIDS activists, his response to ME/CFS activism was to go to Congress an ensure that they did not respond, and to let the him decide what to fund. This is related in Hillary Johnson's reporting on her blog http://oslersweb.com/blog.htm?post=693814 and in her book Osler's web. There is a thread discussing her blog here at http://www.forums.aboutmecfs.org/showthread.php?0&p=64625.
Here is Dr. Fauci's answer to my letter:
I am responding on behalf of Dr. Anthony S. Fauci, Director of the National Institute of Allergy and Infectious Diseases (NIAID), to your April 16, 2010 letter regarding the possible role of xenotropic murine leukemia virus-related virus (XMRV) in Chronic Fatigue Syndrome (CFS). I am a Program Officer in NIAIDs Virology Branch within the Division of Microbiology and Infectious Diseases with responsibility for research on non-HIV retroviruses, and am pleased to respond to your letter.
The potential retroviral link between XMRV and CFS is an interesting, albeit unconfirmed, association. To date, there are no data to suggest causality. Nonetheless, there has been significant interest on the part of the research community to investigate this issue further. To that end, NIH has seen an influx in the number of XMRV-related research applications submitted in response to the ongoing NIH Program Announcement for CFS (see: http://grants.nih.gov/grants/guide/pa-files/PA-08-246.html), as well as through NIH investigator-initiated channels. In my own program, I have seen considerable interest and energy among investigators who are committed to further investigating this issue.
The National Cancer Institute, another component of the NIH, is leading the NIH XMRV research effort and has created a website devoted to this topic (http://www.cancer.gov/newscenter/pressreleases/XMRV_QandA). I encourage you to contact NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237) to secure additional information about their XMRV research activities. In addition, you may want to contact Dr. Eleanor Hanna in the NIH Office of Research on Womens Health, who coordinates the Trans-NIH Working Group on CFS (http://orwh.od.nih.gov/cfs.html) to ensure that a multidisciplinary and integrated approach encompassing the missions of many NIH ICs is brought to bear on CFS. Dr. Hanna also coordinates the Trans-NIH Program Announcement I referred to earlier, and may have additional information about NIHs CFS research effort. Dr. Hannas contact information is 301-435-1573 and firstname.lastname@example.org.
As you may be aware, all grant applications must undergo review through the NIH peer review process, which is designed to evaluate and rate the scientific and technical merit of research applications. Funding decisions are based on the outcome of this process. Peer review of applications submitted to the NIH takes place in multiple steps. The initial step of the peer review process takes place in Scientific Review Groups. The second level of peer review is carried out by the NIH National Advisory Councils, which are composed of scientists from the extramural research community and public representatives. More detailed information on the NIH peer review process can be found at http://grants1.nih.gov/grants/peer/peer/htm.
We appreciate your interest and support in NIHs research programs. I hope that this information is helpful to you.
Eun-Chung Park, PhD, MPA
Program Officer, Virology Branch, DMID, NIAID, NIH, DHHS
6610 Rockledge Dr. Rm 5134
Bethesda, MD 20892-7630 (20817: Express Mail Only)
PH: 301-402-0071 (Direct) 301-496-7453 (Main) FAX: 301-480-1594
"Judy Mikovits believes XMRV could be to CFS/ME what HIV is to AIDS. Due to her collaborative work the NCI and NIH she is way ahead of the other researchers, and IMO, her arguments at this point in time carry more weight.
Is it not rational then to at least think that XMRV is the 'likely' cause of most/many cases of CFS/ME? (see above poll)"
I sincerely hope this is the case. Between apparently well-meaning scientists/physicians disagreeing about this I don't know what to think of XMRV. If it's THE or even the primary cause it's an enormous step forward, and WPI are the like the crew of Shackleton's rowboat, doing the impossible to save the those left stranded.
Pardon my late response -- thread subscription isn't on (how do I activate that?)
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