Thursday, December 30, 2010
Saturday, December 25, 2010
Thursday, December 23, 2010
Wednesday, December 22, 2010
Monday, December 20, 2010
Many of the participants of the Blood Study group advisory committee meandered off to have a little dinner and feel good about themselves. Their self-assessment mirrors a comment overheard recently in a NYC coffee shop: "I feel good about myself and I think I do a good job." The rest of us go back to our life of illness or illness support. It is a grim life, made more difficult by having to go back to confront illness reality after a day with these FDA losers. It is this disconnect that is really irritating - the disrespect for this illness that individuals like Coffin and Stoye display publicly. They are playing their little games, disguised as science - and their successes in their careers come at the expense of patients. They do not give a shit. This is what I dislike. It is the contempt and the disregard and the ignorance of the consequences of their actions. It is in this way that they are modern people - self-pleasurers.
On this December 20th, a story from November 2009 has taken center stage and has become a "realization". A year ago a well-known cancer virologist was approached in the halls of the NCI by another virologist and advised to "distance himself from the WPI" - that "they (unknown elements) were going to take out the WPI". Today this story resounds more convincingly - and gives some credibility to the lies that have been circulating over the last few months.
The news today was not good for ME/CFS patients - not good for their health. For the moment the largest exposure (what is most suspicious) of these "smoke 'em out" retro-virology papers is the timing. These scientists chose to have their XMRV contamination studies released five days before Christmas, a time when ME/CFS patients are under the greatest stress of the year. ME/CFS or XMRV-related illness is a stress-related disorder of the first magnitude, and many patients, like my daughter, go down for the count during this time, and take weeks to recover. It is a very sad and painful time for ME/CFS families and friends. ME/CFS is a very nasty illness with a great fragility and unpredictability to it. These virologists, in their little ivory towers, can only think of these patients, as "complainers", resenting the "harassment" email activity of these desperate patients, now desperate for twenty-five years and counting.
It was quite noticeable in the conversation with Dr. Stoye the other afternoon that he has zero idea of the outlines or the seriousness of this illness - and no desire to find out, preferring to splutter and grimace instead. (Can one imagine that being true with Salk and polio patients?) Complete disregard can also be placed at the feet of the stuff shirt Dr. Coffin and the haughty and diffident Dr. Huber, neither of whom show the slightest knowledge or interest in the reality or character of this patient group. They are too busy talking about themselves, preening and mincing about.
In the unlikely event that these studies knock out the association with XMRV, we have a larger moral issues here - a moral issue parading in the name of science. These scientists in their "need to know" and "to win" are perfectly happy, in their deep ignorance, to trample on the feelings and spirit of this patient group. At the very core, they are an unfeeling, heartless bunch of bastards. Is this what science has become?
This disregard is only the most obvious example of the evil that is taking place now. It was obvious at the Blood Study Group Advisory meeting that there are larger, even unknown, issues here that various sides are contesting furiously - with the gloves off. At times it is difficult to determine if this is normal academic infighting, where scientists fight to the death over limited or non-existent stakes. Or whether, on the other hand, there are much larger issues here - issues of proprietary rights, influence, credit, power and, of course, money. For a long time now it has seemed that an aggregate grinding sound of anxiety and exacerbation has filled the hallways of university labs in the US and the UK over the WPI discovery. This has been written about before on this blog. Now comes the serious push to discredit ME/CFS.
This effort to discredit has been going on since October 2009 - and probably before. The first manifestation of "difference" - in hastily organized papers in the late winter of 2010 - was to knock out the Science paper. A number of people went down for the count in this exchange, including our friend Jonathan Kerr. These highly publicized negative worthless papers were dragged out over the summer. Finally the Lo/Alter paper was released and at this point things began to get serious.
Something big is at stake here and the struggle for control is not a friendly one. The opponents of the association of MLV-related viruses are intent on doing one of two things. The first possibility is to completely knock out and bury the association that a retrovirus could be attached to this illness and other unknown illnesses. The second is that they want to blunt the XMRV connection, bury it, and wrest control of the entire issue for themselves. From a scientific point of view the first option doesn't make a whole lot of sense. The ferocity of the fighting indicates that the second possibility is more probable. Large powerful elements want to wrestle this retroviral connection to neuro-immune and other illness from the WPI and their collaborators. The negative consequence of this for the patients of ME/CFS is not calculated in their bargains.
For the last few months, and longer, every step has been taken to isolate the WPI and starve them to death. All funding requests have been turned down based on the idea that the XMRV association is experimental. (Unfunded studies have to be completed to apply for funded studies.)
The release of these papers and its immediate uptake by the UK and soon the US press (think of our vaunted NY Times and of these "riled up" CFS people) indicates that the time was calculated for greatest exposure and to neutralize the level of the response. It was a good trick and one has to admire it for its connivance/deviance. These contamination studies made it very quickly into the major news media, especially in the UK. Someone was waiting for them - it was a set up.This was the hard take-out that has been expected for some time now. This is just another chapter.
The WPI has always been weak on the communications/public relations front. They are understaffed and poorly funded, particularly after opening their marvelous new building - an act that only further needled their enemies. At the moment the WPI is unprepared to strike back on this recent take-out, but things are going to change. As they gather forces and consolidate the means of aggressively pushing their agenda, the roll back will happen.
Let us imagine for a moment that the worst has occurred (the doomsday scenario) - that the XMRV association with ME/CFS has been broken and smashed. Let us imagine the unimaginable, that the UK whatshername and Coffin and Stoye have bested the valiant Dr. Mikovits. Is this the end?
We have to remember that it was the WPI that got us here. With all due respect for Klimas and Natelson and others, the WPI has gone farther and faster in their research - and without much institutional research money. Try to remember what it was like before the Reno conference in March 2009. At this point, a direction was set - entirely by the WPI and their then Medical Director Dan Peterson, and it has been a fast ride since then. Can anyone imagine that this will change? The XMRV was an unexpected gift - and it is a gift that is going to keep on giving. If it hadn't been for the October 2009 paper none of this additional broad-based research - Singh, Hansen, Bell, Cheney, Klimas, Montoya, de Meirleir - would have occurred. Whatever else happens the Whittemore Peterson Institute got the ball rolling, and now it is impossible to put the genii back in the bottle. As Dr. Alter said, if it is not XMRV, we have to find what it is. And then there are all the immune panels and cytokine studies. Soon it will be on to treatment trials.
Word comes late in the day of a comment on these five studies from the researcher/clinician Dr. Kenny de Meirleir (published on Merutt.wordpress):
“The contamination by mouse material was excluded in our study, that of Lo and that of Lombardi et al. We are not using PCR as a basis of the test but human prostate cancer cells that do not express RNase L so the virus from patient’s blood can grow in it. We also sequence the virus and I can assure you it is not mouse material. Governments and insurance companies are horrified by the idea that there is a new retrovirus out there that has infected 10 times more people than HIV up to date. My preliminary data show that the virus does not grow in culture anymore after Nexavir + GcMAF although the procedure was identical to the pretreatment culture. In the next months more will come from our side. A study with healthy blood donors, ME patients who got ill immediately after blood transfusion and ME patients who gave blood after they got ill will be published in the first half of 2011.
What these 5 are doing to the patients is a crime against humanity.
Kenny De Meirleir”
*a 1957 UK film starring Peter Sellers, where an impoverished backward nation declares a war on the USA hoping to lose, but things don't go according to plan.
Friday, December 17, 2010
As far as the Patient Advocate can discern, Amy Marcus of the WSJ has attended all the major XMRV ME/CFS events -including the August XMRV one-day conference at the Whittemore Peterson Institute in Reno, the CFSAC meeting in DC and the recent FDA Blood study advisory group in Gaithersburg, MD. Amy Marcus' background orients her towards science and its application to disease. Why she has this "inclination" is anyone's guess. This inclination of hers - this instinct to commit to a fascinating story with fascinating people - is going to greatly benefit ME/CFS patients. Amy Marcus is doing the most of any person in the journalist world to promote both an awareness and a serious discussion of these important disease issues.
All this is going to assure one thing: Amy Marcus is going to win another Pulitzer prize for her coverage of XMRV and XMRV-related illness. Because the government has put the kabash on research into this illness, progress is slower than it should be. For her storyline to take hold, the research must advance to the point where she will be able to characterize the illness with patient, advocate and clinician interviews. Once that occurs, and it is not going to be in the far distant future, she will have the human element that she needs to elevate this story - the human suffering, emotional toll, salvation, and redemption. Reporting on absurd scientific squabbles has only so much human interest quality. It is the patient' and their suffering that are of interest, and her story line needs to get there for her efforts to reach the level of profundity - and win her another Pulitzer. Let's wish her well.
This letter went unpublished.
In response the Patient Advocate received this email (with attachments).Dear Professor Cairns:
This chronic fatigue stuff gets people all riled up. Some people think there's enough proof to start taking retovirals but most experts don't. The writer doesn't seem to get that the two studies he cites found two different viruses so they can't be supporting each other. And Lipkin is not in fact just confirming the september study.
Let me know if you need any more help on this.
Hey Carl, I need to reply to this reader ... can you give me any guidance? Thanks, David
The Patient Advocate first question was to wonder if this "science" writer thought two retroviruses in these patients was less frightening than one. Noting the difference in bias, literacy and tone from the WSJ, the PA started to write a post on this, but his daughter and son prevailed on him to try to use the "opening" to get their attention. So the PA wrote the following:
Dear David Corcoran,
Thank you for your response. I’m very gratified to hear that The Times intends to stay on top of the XMRV story. It is a complex and compelling one, with ramifications for many.
ME/CFS is a severe, debilitating illness that is estimated to affect at least a million people in the United States, so it is not surprising that people get “riled up” about it, as your colleague rather flippantly puts it. It appears to be increasingly likely that it is caused by one or more retroviruses, that it is contagious and that it is in the blood supply.
The impatience for treatment options on the part of those with ME/CFS is akin to that reported in today’s Times Week in Review article about delays in identifying the efficacy of Truvada as a prophylactic treatment for AIDS. There is concern that once again the delays in substantiating studies and approving treatment will be caused by “a combination of scientific caution and fiery politics.” Like AIDS, ME/CFS is surrounded by longstanding prejudices directed towards those afflicted - and there is currently no approved treatment.
Those who follow XMRV research closely know that two variants in the same virus family were found in humans in these two studies. Whether you call it XMRV or PMLV it is still a gamma retrovirus closely related to MLV propagating in humans. Dr. Harvey Alter himself stated that the Lo/Alter paper supports the Lombardi results – and XMRV has been now found in all of Alters’ own samples (by Ruschetti).
The Wall Street Journal has been covering the XMRV development regularly over the summer and fall. Their most recent article is here. It might be useful to compare your coverage.
The viewpoint that I expressed in my original letter furthers the discussion of these issues, and should be published. The NY Times - known for its journalistic even-handedness – should avoid the appearance of bias in a matter of such importance.
This effort did not reach a form of "realization". It was what they call "a waste of time". The NY Times has displayed once again why it is going down the tubes.
Wednesday, December 15, 2010
In early December the Patient Advocate wrote an account of what was going to happen at this committee meeting, and this description foretells quite accurately what occurred on Dec 14th – with one major exception. With this particular committee there seemed to be no one in charge, no one running the show. Certainly it was not the appointed head of the committee - Dr. Blaine Hollinger - but surprisingly it was no one else either. In the PA’s experience this is unusual. This fact, this shortcoming, heightened the unmoored and discombobulated sense of the day’s presentations, and particularly the vote on one question – a very significant question – at the end.
In no sense did this committee, with a few exceptions, project the sense that they had ever heard anything about XMRV, or CFS before - even though there had been at least one earlier meeting on this subject - and maybe two. A number of the committee members invented their own illness acronym - CSF and XRMV - and used them repeatedly. The bottom line was that at the end of the day – after listening (or not listening) to the days’ presentation - the committee, during their discussion, seemed totally unmoored, unable to recognize what they were voting for, what the implications were, or even, most absurdly, what a yes or no vote actually meant. The discussion was stunning in its absurdity, the greatest sense of unreality that the PA has ever seen – and this is really saying something. The Patient Advocate was certain that he knew what was going to happen, but, for a few moments, the PA panicked with the realization that this group of “experts” was so lost and so self-absorbed that the issue could not be clarified and that the committee would not be able to do the task at hand.
So it was with some trepidation that the Patient Advocate watched the unfolding of the committee vote. The PA himself had been confused by the committee chair as to what the vote was actually about, what the main issue actually was - although the PA had not previously suffered from this “not knowing”. The 13 members voted with their little silent push buttons and suddenly the audience could see the result on the screen. The vote was 9-4 with the committee voting to restrict the participation of CFS patients in giving blood. Or that was the Patient Advocate thought after the committee confusions and this was shortly confirmed by reality - although Dr. Ruschetti also was unsure what the committee had voted for. It is the PA’s belief that some members voted no meaning to vote yes and some members voted yes meaning to vote no. Fortunately it worked out in the end - and this is how great victories are achieved in this modern world of ours.
The misdirection and confusion of this committee was stunning and took away, at least momentarily, the profound importance of their vote. This was a great day for ME/CFS patients - as the government recognized for the first time in history that ME/CFS was an infectious disease, and that it should be kept out of the blood supply. The Patient Advocate had a sense that the committee had no idea of the implications of their vote, either now or will in the future. Without their knowing, or seemingly even caring, this committee’s vote confirmed for the first time ever that the federal government is complicit in the neglect and abuse of ME/CFS patients. At a minimum it sets a date where the government is on record as acknowledging that they have some awareness –something to lose - that a new retrovirus or two or three are loose in the blood supply, and that it might have consequences. Hence the clock has been started for future liabilities for blood transfusions. The government had been wanting to push this date back forever, but events have descended upon them.
This was a very important day for ME/CFS.
From the beginning to the end it was a day of great strangeness.
The Patient Advocate will not enumerate the specific presentations of the day, preferring as usual, to give his “take” on the day (highlights and lowlights) and to try to project the general weirdness of it all.
Two new voting members were attached to this committee. They were Dr. Nancy Klimas and Dr. John Coffin. Late in the day, as the committee lurched uncertainly sideways, about to pitch themselves headfirst into the ditch, two presentations saved the day. One was more unexpected than the other. The first was that Dr. Klimas, at a critical moment, articulated the problem of patients with this illness and the danger to the blood supply - something that many could do, including the PA – but it was Dr. Klimas who was there at crunch time - and this needs to be noted. Dr. Klimas was great. Thank heavens that Dr. Klimas had been placed on this committee for this day, and that she was able to stroll in with her little rolling bag and do her thing. Otherwise the day would have been sunk.
The second surprising moment occurred when Dr. Harvey Alter, in no official role, stepped to the microphone and in a very short presentation articulated the main issues regarding the science of XMRV, set aside the notion of contaminations and basically framed what the committee needed to do. He also presented a spirited defense of the WPI research and Dr. Mikovits in particular.
The following is the near verbatim transcription of Alter’s short statement transcribed by Valerie in real time. The PA borrowed it from the ME/CFS forums. The Patient Advocate was sitting next to Valerie and he watched in disbelief as she rattled along typing up these lectures. How she does this the PA does not know, but the rest of us owe her a great sense of gratitude.
“When a group finds a new agent, become biased that it’s real. When it’s not found by another group, they become even more biased it’s unreal. Our goal should be to find the truth. The truth will out over the next year. I concur we have no evidence for causality, especially when we’re at the LoD and assay performance is so critical
But I still want to counter by saying that the current evidence for disease association is very strong that XMRV or MLV is strongly associated with CFS. In those labs who do find the agent, it's very reproducible. Year after year, same patients test positive. Confirmed by sequencing, reproducible over time. Dr. Hanson has demonstrated how critical the assays are. When tweaked assays, the findings are identical to Lo lab.
Diversity of XMRV/MLV being confirmed in WPI lab, so XMRV is the not only agent being confirmed there. In hundreds of negative controls in same lab (Lo’s) all results were negative, Lo has done what Coffin recommended to test for contamination, Always negative for contamination. It isn't logical to suggest otherwise. Stoye used single-case anecdotal information to try to make a case. Simply because it has happened in the past isn't valid to negate reproducible data from 4 different laboratories.
I'm not a CFS Dr, but have learned alot in last 6 months. Absolutely convinced when you define this by proper criteria, it's a very serious, medical disease. Characteristics of a viral disease. If it's NOT XMRV, we must continue the research to find out what is''.
Meanwhile, during this final discussion leading to a vote (and actually for the entire day), the other newcomer to the committee, Dr. John Coffin was doing his very best to confuse the issues. This behavior involved his usual obnoxious grandstanding and self-preening - trying to display his superior intellect in parsing these issues. Dr. John Coffin is immediately recognizable to the Patient Advocate as a person of the PA’s generation and the PA is embarrassed that he shares this man's culture. Dr. Coffin is a leading light of “The Stupidest Generation” (in the history of the world). This self-pleasuring has been evident since the Patient Advocate first saw this fellow at the CFSAC meeting in October 2009 . Dr. Coffin is a slippery adversary, and should not be trusted in any situation.
The Patient Advocate watches this old dilapidated codger (Coffin) and the others of my generation on the committee, and the PA wonders what they think of Dr. Judy Mikovits? The PA wonders if they see in her the extraordinary qualities that the PA sees? The PA would have to say – no, no, these fellows don’t see it. They are true to their generation, eaten up by their fear of being unseated by younger women who are much smarter than they are – and they are unable to get their minds around this and it coagulates them into a malleable jelly-like substance without any spine.
The day was a triumph for ME/CFS research. It is clear to the Patient Advocate that in spite of actually being able to execute the vote, the committee and the federal government that they represent is no longer in control of this issue. This was best highlighted by the presentation and comments of Judy Mikovits. While Dr. Mikovits presented nothing new, her acuity and intellect are so much more elevated than the others in the room that it is almost painful to watch. While she took her usual bashing, there was a sense in the room that she and other scientists are now in control of ME/CFS issue. The government is in the way and must move aside. Dr. Ian Lipkin should be given another job.
The presentation of Dr. Stoye was a curious one. For some reason Dr. Stoye, a UK virologist, was given a prominent place in this discussion - and he took full advantage of it. His assignment was to give an “overview” of the current research into retroviruses and ME/CFS. Why he was chosen for this task is hard to understand. Dr. Stoye, whatever his virtues are, has demonstrated that he does not do well on the open field. Dr. Stoye failed miserably at this overview task, instead giving a magnificent “underview” and quickly descending into a haphazard, lackadaisical, offhand, slipshod set of opinions and anecdotal assessments that bordered on the unprofessional. Dr. Stoye tried his best to reenter the contamination issue but, by the end of the day, this had been buried (at least for this day), primarily through the aforementioned summary of Dr. Alter. In other ways Dr. Stoye tried to shift the momentum against the validity of any association of MLV-related viruses with ME/CFS. As the committee vote revealed, Dr. Stoye’s contribution was ignored and did not take hold.
Despite the asinine aspect of this committee meeting and the ensuing confusion, this was a banner day for science and research relating to ME/CFS. The government will continue in its silly ineffectual way, but now they are strapped to the serious science being done at the WPI and other places and we are better for this. The good guys won the vote and the bad guys took a beating. Now it is time to move on.
Tuesday, December 14, 2010
Thursday, December 9, 2010
The Patient Advocate took his monthly trip to Minneapolis in October. This blog post will be long - and is not for everyone. I will split it in three parts as some readers might find this tedious and boring – and will want to skip over it.
The PA flies to Minneapolis from Philadelphia for one week every month. His daughter is housebound in St. Paul, now for over five years (sick for eight). The PA rents a studio apartment (Room #316) near Loring Park in Minneapolis. The building is a former hotel reputed to have had Liz Taylor and Jackie Gleason as residents. Can this be true? These days this rental building is full of young and elderly oddballs, almost all of them dog owners. The PA is not a dog person so this makes for interesting confrontations in the elevator. Young women with Doberman pinchers invite the PA to share the small elevator, but the PA politely declines, preferring at that point to take the stairs.
It is a strange, uprooted and disjointed life that the PA lives in Minneapolis. It is full of constant daily pressures. The PA chooses to live in Minneapolis, eight miles away from his daughter, as he wants ”his own life”. The Patient Advocate prefers not to live in his “daughter’s town”. She needs her space. This has proven to be a very wise decision.
Fighting ME/CFS takes money - and lots of it. Through long-ago “good fortune” (those were the days), the Patient Advocate owns a small apartment in lower Manhattan. The PA short-term rents this apartment for cash, traveling on an almost weekly basis to NY from his home outside of Philadelphia. The Patient Advocate cleans the apartment, does the laundry and greets the visitors – mostly folks from Europe or Australia. The PA has become very adept at cleaning and doing the laundry. The PA is especially good at cleaning bathrooms. All money received goes directly towards his daughter’s support and treatment. The Patient Advocate and his wife have completely rearranged their lives, financially and otherwise, to give priority to the betterment of their daughter. .
On a Thursday night in late September, the PA spent five hours at JFK waiting in weather-related delays for his Sun Country flight to MSP. He finally arrived in Minneapolis at 3 in the morning. The PA slept a few hours, and then started his tasks.
First up was an appointment with one his daughter’s doctors. This particular doctor – a gal - visits my daughter in her home once a year – an unheard of situation in this Progressive state. Generally doctors do not make house calls in Minnesota, a state with heavily regulated medical care. The PA's daughter has not been able to get to this doctor’s office for five years.
The Patient Advocate makes contact with his daughter’s doctors every three to six months. These consultations allow the PA to update a particular doctor about current treatment plans and future possibilities. It is a form of “checking in”. These doctors are sympathetic - even though the might not know much about ME/CFS. Most importantly, they are willing to write prescriptions, or to order routine (or experimental) tests. The Patient Advocate has assembled a cadre of physicians from all over the world who are contributing to the recovery of his daughter.
This particular physician has gained a growing respect for ME/CFS. She has “come around” from initially thinking the Patient Advocate's daughter’s illness with psychological. This physician is one of a handful in the Twin Cities with whom you can have a conversation about ME/CFS. This bastion of perfection - these Twin Cities, this wonderfully balanced community - is a backwater for ME/CFS. Ignorance prevails in Minnesota and most medical practitioners think this illness is a psychological disease. Bless their little hearts.
On this particular Friday morning, the Patient Advocate tells the physician about XMRV and about the current breakthrough research. Much of the conversation is one-sided – a bit of a lecture - with the PA talking about XMRV, the WPI, the NIH, and the crossover of ME/CFS into the infectious disease category. Along the way, the PA asks for suggestions on Infectious Disease doctors in the Twin Cities. It is the Patient Advocate’s opinion, based on unfolding events, that his daughter’s “illness” definition has moved into an Infectious Disease category. This has been obvious to the PA – a sculptor - since the very beginning of her illness - but now the evidence is piling up.
The PA is intent on getting his daughter an Infectious Disease doctor in the Twin cities, someone who will put his or her mind to real treatment or maintenance possibilities. (Incidentally this does not mean that the PA is looking for someone to dish out antiretrovirals. The need is much broader than that.) The Patient Advocate’s daughter has been without a real doctor for her entire illness. She does not have an attending physician, someone who can admit her to a hospital if necessary. This is a disgusting and shameful fact. One negative aspect is that it puts the PA himself in the position of being a quasi-doctor, and of making medical decisions. This is the reality of ME/CFS. It does not take much imagination to understand that this is a highly unwelcome position to be in - and a source of a certain amount of irritation and anxiety on the part of the Patient Advocate.
This particular doctor feels that most if not all the I.D. doctors in the Twin Cities will be resistant to engaging a patient like my daughter. However this doctor does identify the HIV clinics in the city - and she makes one quite specific suggestion, which was very helpful (This didn’t pan out). She also offers to send along a query to the HIV clinic in her own hospital, and asks the PA to write up a concise short paragraph on his daughter’s situation.
It is October and a beautiful month in Minnesota, particularly for biking (Soon it will be ice and snow and cold biting wind, and this the Patient Advocate cannot get out of his mind.) One of the positives about the Twin Cities is that it is a very bike-friendly city. The Patient Advocate brought his bike when he first rented an apartment in Minneapolis. Almost immediately it was stolen. The PA found a bike shop and bought a used one - and he has been able to hang onto this one. Moving around the cities on a bike slows things down - but it is a great stress relief. Yes, the Patient Advocate too has stress! And biking has other compensations - as you can get close to nature. The irony does not escape the PA that while he exhausts himself biking around the cities, his daughter is confined to her room, exhausted.
During his visits to Minnesota the PA has various major and minor tasks that keep him busy. The days are long and hard. Each trip presents its special problems. On this occasion one of the PA’s tasks is to establish an “Oasis area” - embracing the rooms in which his daughter spends her time. Recently the PA did the ERMI mold test with Mycometrics. Surprisingly it came back with mold at the 92% level (of the national average). Whether this test is reliable is not clear - nor is it a simple matter to interpret the results. However this elevated mold test in combination with several elevated Shoemaker tests (c4a and MMP-9) indicate that mold might be a player in his daughter’s situation. Since it is impractical to consider moving, the prudent thing to do is to get rid of (or neutralize) the existing mold in living and sleeping areas. The Patient Advocate is aware that this is a complex problem, far beyond his powers to decipher. But the PA must do what he can do.
The washing of these rooms takes place in stages over the next several days. It entails washing the floors, walls and ceiling with a non-allergenic soap, followed by vinegar and water. Vinegar is reputed to inhibit mold. The PA is good at washing although it a boring job. All excess paper products are removed from the rooms and placed elsewhere in the apartment. In this way this set of rooms are made free of mold on existing surfaces. With the arrival of a second Aireox hepa air filter (from Needs), the area is made an “oasis”. Maintenance washing will have to be done.
During these week-long visits the PA tries to retain his own personality. The Patient Advocate does things to maintain his sanity –foremost amongst these is going to the orchestra. Minnesota has one of the finest orchestras in the world, although judging by attendance, there seems to be little local recognition of this fact. The director Osmo Vanska (personalized locally as “Osmo”} is a compelling conductor and has whipped this orchestra in shape. The Patient Advocate has heard the Minnesota Orchestra in Carnegie Hall in NY, where, because it is center stage, they play out of their heads. This weekend they played Brahms' stupendous 2nd symphony. The orchestra and biking, along with an occasional play, are the outlets that the Patient Advocate allows himself from his “tasking”.
Early Monday the Patient Advocate biked six miles out to St. Louis Park to see another of his daughter’s doctors. The bike ride was quite fine and it was a beautiful early morning. The PA had the illusion of biking into the country even though St. Louis Park is only a suburb of Minneapolis. The PA’s daughter has not seen this doctor in five years. This doctor is willing to talk about his daughter’s situation. His help is greatly appreciated, although it is recognized that this is not a good way to do medicine. He is the principle go-to guy in the Twin Cities for CFS.
This visit is roughly a repeat of the Friday doctor consult. The Patient Advocate wants to keep this doctor informed of what is going on in the larger world of CFS. This very compassionate and independent doctor is pinned down trying to help his many patients. He struggles for acceptance in the Twin Cities; and the PA is always a bit worried that this doctor will not be there the next time the PA wants to see him. These managed health care environments seem to have a way of “disappearing” independent doctors.
In addition to talking about XMRV, the WPI, and research into ME/CFS, we discuss thyroid regulation. Some of the hormonal problems of ME/CFS, like Hashimoto’s, have to be managed by the patient (and her advocate). Outside professional help is useful in that it can confirm the direction taken. Thyroid regulation is complex and elusive. Having more than one opinion is necessary in order to make a knowledgeable decision.
These doctor consults are difficult for the Patient Advocate - as the doctors never drop their “professionalism”. The PA surmises that most doctors do not like to talk to patient advocates. The normal doctor patient relationship becomes too skewed. While the Patient Advocate always remains polite and appreciative, the PA can never tell what these doctors think of him - whether they think the PA is desperate or on a hopeless mission or just full of shit. Most certainly they feel that the balance of control is not right and something is out of kilter. The Patient Advocate remains undeterred in and pushes forward.
The Patient Advocate mentions XMRV and the doctor says that he follows it a little. The doctor is surprised that the PA had been able to find out where to get the test done, and that has actually had it done. The PA is surprised that the doctor is surprised. After all, the PA has handed this doctor all sorts of sophisticated tests from obscure labs all over the world. The PA urges the doctor to look at Peter Cairns’ videos on the WPI. Clearly this doctor could use some more information than he is getting, and the PA tries to provide it. The PA gets the sense that none of this “adds up” for this doctor - and it is a very long way from the daily grind of dealing with his patient population. Who knows how to bridge this divide?
During the course of any particular day there are daily tasks – endless small errands, shopping for food and treats (coconut juice, homemade flaxseed crackers or wild rice organic chicken soup, for example), going to the FedEx to copy test results or to fax letters, writing in his journal, cleaning his daughter’s apartment, picking up pharmacy prescriptions – all attendant to picking up the slack of an invisible life. In addition the Patient Advocate does his regular several daily hours of research and communication on the internet – including the writing of this blog.
Lest the reader think everything moves in a certain pre-ordained direction, the Patent Advocate can disabuse them of this. Any sense of any success or of things going in the right direction is shaky at best and comes in the smallest of doses. Most of the effort is expended to maintain the status quo or to keep things from back-sliding. Finally there are the interactions and circumstances that bring with them the sense that things are not going in the right direction, that realization that the situation is becoming further tangled. In other words, there is a great sense of defeat, both small and large. One example follows.
This trip includes a particular irritation. For no particular reason, the overzealous local township has taken it upon itself to make sure the apartment in which his daughter lives is up to code. We are supposed to believe that these people are “just trying to help”. They are unaware of and indifferent to the fact that they are directly threatening my daughter’s health. The inspector is a young fellow who feels that he needs to be extra vigilant, especially since there is nothing particularly wrong with the two-apartment house. Having the constant threat of inspectors and carpenters lounging around and dropping in as they see fit, is a great source of stress for my daughter. These “inspections” and their follow-up “cures” have precipitated a number of crashes for the PA’s daughter.
The Patient Advocate spent a great deal of time trying to protect his daughter from this insult. How does the PA tell a bunch of Minnesota dolts that their existence and presence is bad for his daughter’s health? Of course the first thing that they wanted to do was take out the stair lift - installed with great care to code requirements several years ago (by the PA himself). This stair lift is the lifeline of my daughter, and allows her to occasionally get down on the porch or out into the yard for a few minutes. With zero information about stair lifts in his brain, this neophyte inspector sees danger. The Patient Advocate has to appeal to State regulators and local stair lift inspector records to try to fend off this inspectors’ zeal to prove that this stair lift was unsafe.
Many very minor problems were cited in my daughter’s apartment. For instance there was a non-structural crack in the ceiling of the kitchen that allowed for a few very small flakes of paint to appear. Despite the fact that this is entirely a cosmetic situation the local “enforcers” required that the entire kitchen ceiling be scraped and repainted. In order to keep painters out of my daughter’s kitchen for the two or three days necessary to do this job, the Patient Advocate took it upon himself to do it. Of all the situations in the 67 years of the PA’s life this was one of the most absurd.
Tuesday is the day that the PA's daughter gets IV treatment. This also often involves doing a blood test at the same time. The Patient Advocate arranges all the ordering of test kits, along with the paperwork and the shipping. He is handed the blood by the IV nurse and then he goes into action mode. While much of this testing procedure has become routine, obstacles are always arising - as there is a slender thread connecting the home-bound ME/CFS patient to the real world. In this instance an underling at the FedEx refused to ship the package - as it contained a “liquid” and she claimed that she was prohibited sending liquids from her shop – this in spite of having checked it out with the manager that very same morning. Multiple trips to FedEx are always necessary to make things happen. Making sure of every detail is part of the PA’s job. The PA had a sharp exchange with this gal, threatening her for her impertinence - and the blood sample eventually was shipped out in time.
One of the things that the Patient Advocate likes to share with his daughter is juicing – vegetable juicing. Several years back the PA latched onto this idea, and it has developed over time. The PA enjoys going to the Whole Foods, lugging, slicing and juicing the vegetables. Vegetable juice is like gold. The PA and his daughter make a load of juice with her Omega 400 juicer. The juice is made from lettuce, tomatoes, carrots, beets, cucumbers, red peppers, celery, garlic, and ginger. The PA’s daughter believes that juicing is good for her. How could it not be?
The Patient Advocate had a phone consultation with a third MN doctor on Tuesday. The PA and this doctor talked about the methylation protocol and the PA's daughter’s improved reduced glutathione status on the recent Vitamin Diagnostics test. We talked a bit about mold, and the doctor gave me some suggestions. We discussed thyroid regulation.
This doctor is very hip to XMRV - 8 of 10 of her lyme patients have tested positive for XMRV. She will be going to the ILADS conference in Jersey City. The Patient Advocate alerted her to the talks of Montoya, Marcus Conant and Brewer and she was appreciative of the heads-up. She made a suggestion of an Infectious Disease doctor at the UM. The PA wrote this doctor (along with 60 other I.D. doctors in the Twin Cites), but of course the PA did not get a reply.
The PA writes up a summary of every doctor consultation. Everything needs to be written down and communicated to other members of the family - so that they are clued in on what is happening (in case the PA drops dead on his bike). Years of detailed note taking pays off in various ways.
Wednesday morning the Patient Advocate finally figures out how to put his bike on the front rack of the buses - so that he can move around town faster. The morning also involves sending test results, mailing stuff at the post office, emailing with a lab, going to the medical supply company to discuss the alleged “problems’ with the stair lift, calling to get the specs on the stair lift and buying replacement batteries, buying artichokes (The PA’s daughter likes artichokes), and going to the hardware store for paint supplies.
Tuesday the PA climbed up on his ladder and sanded the ceiling of his daughter’ kitchen. It is difficult for a 67 year old to do this, but the PA has done this many times in the past. The PA has to do this job as it is preferable to a situation where workers come into my daughter’s apartment and make her sicker. The local code enforcer has zero interest in the particulars on the subject, even after a long conversation with the Patient Advocate. The threats to a ME/CFS patient come from every conceivable direction, and it is the job of the Patient Advocate to try to protect his patient. Sometimes the PA is successful in this enterprise, sometimes things do not work out - and the jerks of the world accomplish what they want.
The time in MN is not leisure time. From the rise from bed at 6 until the retirement at midnight the day is full of one consternation or squabble or uncertainty after another. For instance in a routine matter of a blood draw there can be massive complications. The system is not built for home draws, and very few people understand what it takes to do these tests out of the home. All sorts of people tell me that they would do the same if their own child was sick. The Patient Advocate know that this is not true. Most people, most healthy people, are not equipped to do this job. .
Thursday was mostly sucked up with dealing with apartment doings. The Patient Advocate met with the safety inspection person and went over the specs of the stair lift. This Bruno stair lift is one of the best, most reliable and most expensive in the business. For the moment let’s forget about the PA's acquisition of this stair lift through Craig’s list - at a bargain basement price. For every patient advocate looking for a stair lift, there is someone else desperately looking to unload one. The Patient Advocate hopes that he was able to convince this particular inspections fellow that this was not a flyby installation, and that it had been maintained by one of the best medical supply companies in the Twin Cities. It seems that the inspector will insist on a few minor changes, but that the stair lift, the lifeline of the PA’s daughter, will be able to stay. The entire situation was bizarre and ate up a great deal of time and concern on the part of the Patient Advocate - to say nothing of the effect on his daughter. ME/CFS is a stress related disorder and this kind of stress is pure murder.
Lastly, the PA painted a final coat of paint on the ceiling of his daughter’s kitchen. The Patient Advocate used paint that was VOC free and this went fine, except for the paint that dripped all over his face and arms. It is difficult to paint a ceiling.
The PA buys some flowers for his daughter, kisses her goodbye and gets on a plane back to Philadelphia and begins preparing to come back the next month. And so it goes, month after month after month.
Thursday, December 2, 2010
Tuesday, November 23, 2010
Monday, November 22, 2010
The decision about who fills this position is likely to occur soon, perhaps within the next few days. It’s time to restate our opposition to Dr. Unger. Please send a new email to Dr. Monroe, Dr. Frieden, Dr. Koh and Secretary Sebelius. A suggested text and all the contact information is listed below. If you want to reword it, add to it, send it to other people, please do. This is planned as a one-time email (again), but if you want to send several emails please do. If we hear nothing back again, we may send another email (or two) in December. If possible, please also send a copy to challengeCDCcampaign@gmail.com so we have some idea how many emails are sent. It doesn’t matter if you’ve already sent one or if you haven’t. We need to emphasize how we feel about Unger and the past actions of the CDC.
This is important. Thanks for helping all of us.
Dear Dr. Monroe, Dr. Frieden, Dr. Koh and Secretary Sebelius,
I am writing to express my opposition to the appointment of Dr. Elizabeth Unger as Chief, Viral Diseases Branch at the Centers for Disease Control. In this position, Dr. Unger will be supervising the Chronic Fatigue Syndrome Translational Research Program at the CDC. Dr. Unger has served as Acting Chief, Viral Diseases Branch for several months. During that time she has shown no understanding of the importance of improving the accuracy of the CDC’s CFS website, which is referenced by physicians and patients all over the world. She has continued to allow research to be published using a definition of Chronic Fatigue Syndrome that was rejected by the Department of Health and Human Services’ own Chronic Fatigue Syndrome Advisory Committee (CFSAC) in October, 2009. She has failed to communicate or collaborate with CFS experts outside of the CDC. She has not established “progressive leadership at the CDC that can achieve efficient, meaningful progress in CFS research, clinical care, and education,” another CFSAC recommendation from October, 2009. She has not shown that she is qualified to be permanent Chief. I urge you to select another candidate to fill this important position.
Patient for years
City or Town, State or Country
Suggested recipient email addresses:
Please send a copy to: email@example.com
Here is additional contact information if you want to call, fax or snail mail:
Stephan S. Monroe, PhD
Director, Division of Viral and Rickettsial Diseases
Atlanta, GA 30329-4018
Thomas Frieden, MD, MPH
Director, Centers for Disease Control and Prevention
Atlanta, Ga 30329-4018
Howard Koh, MD, MPH
Assistant Secretary for Health, Department of Health and Human Services
200 Independence Ave., SW HHH B
Secretary, Department of Health and Human Services
200 Independence Ave. SW
Sunday, November 21, 2010
Laura Hillenbrand became ill in 1987 and has been housebound or bed bound ever since. Her list of symptoms (no doubt incomplete) culled from the Internet is listed here:
daily flu-like symptoms
vertigo, a neurological abnormality
consistently weak and dizzy (too weak to sit up or talk)
inability to stand (orthostatic intolerance)
inability to recover after exertion (post-exertional malaise)
This set of symptoms meets the 2003 Canadian Consensus Criteria of virally-induced sudden onset ME/CFS. This definition can be found here. This is a critically important document.
At the recent HHS so-called "Science Day", Dr. Joan Grobstein voiced her opinion that the above 2003 Canadian Consensus Criteria were sufficient for determining who has this illness (ME/CFS). It is her conviction that the government does not need to spend more money trying to define a disease outline - they already have one. Both my daughter and Laura Hillenbrand fall under the Canadian Consensus Criteria. (In the case of Laura Hillenbrand this is an educated guess on the part of the Patient Advocate. He has not seen her medical records and has no interest in seeing them - as he sees plenty with his own daughter.) They both have the same serious neuro-immune, neuro-endocrine illness. Many ill patients (between 67% and 84%) meeting the CCC guidelines are XMRV or MLV-related positive. They have a retrovirus of unknown pathogenesis.
Laura Hillenbrand is the public face of ME/CFS at this critical time, and has been for some time. Considering her illness state, Ms Hillenbrand has done valuable work as a ME/CFS advocate - appearing on talk shows (via tape) and radio interviews, as well as writing a wrenching account of her illness in the New Yorker in 2003. She has raised awareness of this illness nationally, perhaps more than any other individual. We owe her a great debt of gratitude.
And yet, in spite of all this, the Patient Advocate must strike a discordant note. In the last year, many things have changed in the world of ME/CFS; there has been a dynamic shift. These changes do not seem to be reflected in any of the reviews or interviews about Hillenbrand’s fantastic book.
To the Patient Advocate this seems like an opportunity missed. Here is a chance to bring two threads, two stories together – recent XMRV - ME/CFS research and the major ME/CFS figure with this illness. The public does not need to hear the old stories about CFS. They have digested Hillenbrand’s CFS and found it to be quaint. In the general public's assessment, this remarkable person has to "lounge around" while she writes her books. The public either has no idea or no interest that ME/CFS is a serious, devastating illness – and that there are answers in terms of diagnosis and treatment on the near horizon. This is not 2003. Today ME/CFS is most likely a retroviral-associated illness. We need to find well-known people to raise up this disease. This illness needs to be elevated in order to bring money and funding for research. Out there in the real world there have to be voices connected to this illness who could speak up and broadly focus the issue. We, the patients and advocates, have to find them.
The Patient Advocate would like to see Laura Hillenbrand connected in a real way to the Whittemore Peterson Institute. The WPI is the best bet to unlock her illness and bring her improvement.
Saturday, November 20, 2010
In his quest to help his daughter get better, the Patient Advocate went to hear Dr. Marcus Conant at the recent ILADS conference. Dr. Conant was one of the courageous few that clinically engaged the AIDS epidemic in San Francisco in the early 1980's. Dr Conant did not flinch in the face of this terrible burden thrust upon him. Instead he treated these near dead and dying patients - and became a great advocate for them. He knows the business of disease advocacy, and when he speaks it makes sense to listen.
Recently Dr. Conant moved from S.F. to New York, where he is a consultant. Among other things, he has an interest in this XMRV retrovirus. Dr. Conant sees many parallels of the current situation with neuro-immune illness and the early years with AIDS. An astute Dr. Burrascano invited Dr. Conant to lecture. Dr. Conant gave his lecture without remuneration.
In his half-hour lecture entitled "Lessons learned from AIDS", Dr. Conant gave a stirring talk enumerating a number of key points. The Patient Advocate has read over his notes on this lecture and Dr. Conant's advice to us follows:
"What the AIDS patient learned to advocate for was not compassion from the public, was not sympathy from the public - what they learned to advocate for was research dollars, research funds."
"Focus energies on getting money for research. Find out the etiology of this disease." (in this case he was speaking of Lyme)
"Focus on research, not suffering."
"Don't trust the press." "The press is not your friend." - they are corrupt and have another agenda.
"Congress is your last resource, not your first." "The federal government is not your friend." You first have to prove that something is there.
"Dont blame your adversaries" "Bring them (your adversaries) in, don't cut them out." Otherwise you will have to wait until they are dead - and that could be a long time. (Dr. Conant was not talking about deadly enemies here. He expressed clearly that he would not waste any time on someone whose mind he could not change. In this above quote, he was emphasizing the notion of inclusion - and of not unnecessarily making enemies)
“Develop coordinated activism" How do we best get funds to study this disease?
A month later this presentation still reverberates in the mind and heart of the Patient Advocate. This talk could not have come at a better time.
With ME/CFS, we stand at a crossroads. At this moment the government is sitting on the HHS XMRV blood study group's phase II study. The government is worried about the blood supply. The government has the data and it is pretty convincing. What will they do and when?
Meanwhile NIH research money is not coming to the WPI. The WPI funding applications have been turned down at least four times. They are having trouble getting their current research published in legitimate journals. Why is this? Whatever limited funding they have is drying up. Whether this all is by design is anyone's guess.
Meanwhile other research into XMRV is going on around the country in both expected and unexpected places, fueled by discretionary funding or siphoned off from other projects. Researchers are drawn by natural interest to this new retrovirus. Here is one recent study. And here is another (from MN, no less). These ongoing research projects hold the key to the solution of this ME/CFS XMRV-related illness. Science is the answer. The WPI and their affiliates triggered this. They tripped the switch on all this research. This flashpoint Institute needs funding in order to come up with more answers. Research is the answer. We cannot wait any longer.
(The PA wrote about Dr. Conant before, but this needs repeating)
Sunday, November 14, 2010
Saturday, November 13, 2010
Recently, the Patient Advocate has begun an effort to find an Infectious Disease doctor in the Twin Cities - someone who will take an interest in his daughter’s case. The Patient Advocate has systematically and slowly searched out and emailed 50 I.D. doctors in the Twin Cities. Each doctor gets a letter explaining the particulars of the PA's daughter's illness and a request for help and suggestions. The PA has received ten responses, some with very general advice that indicates that the recipient did not read the email very carefully. None of the responses made a specific suggestion. The Patient Advocate has no illusions here. This is not going to be easy. This might take some time.
In the meantime the PA is going to learn the names of every I.D. doctor in the Twin Cities. Each one of these doctors is going to get the report of the HHS XMRV blood working group as soon as it is published, along with every other significant piece of information that emerges in this unfolding drama. It might take a few more years in order to get a doctor for my daughter.
This effort to find a compliant I.D. doctor conforms to the aspirations of the Whittemore Peterson Institute. The WPI is looking for or searching out I.D. doctors with whom to work. The WPI already has reached out to make a connection to Dr. Brewer, an infectious disease doctor in Kansas City, Dr. Montoya at Stanford, Dr. Burrascano in NY and Dr. Conant - all who have expressed interest or partial interest in collaborations.
Patients all over the country are looking for doctors who might be open-minded about the ME/CFS- XMRV connection. Patients and advocates ask what can they do to help? One specific thing that they can do is to try to find doctors who are willing to take on XMRV-related patients. In the Patient Advocate opinion HIV doctors are the best bet.
Friday, November 5, 2010
From his small perch in MN, the Patient Advocate looks out over the ME/CFS landscape. The PA has arrived once again in this frozen city to help his daughter. The Patient Advocate’s daughter has started a new blog here.
The internet is a funny place. Yesterday a message was left on the PA’s blog under an old post on Dr. Kenny de Meirleir. (The reader will remember that Dr. de Meirleir has said that XMRV “is not everything” in this ME/CFS illness.) The poster of yesterday’s message was a certain E.F. Ramos, M.D. The name is not known to the Patient Advocate, nor was the PA able to find out much about him from an internet search. So E. F. Ramos remains an enigma. Here is the message:
“With the help of De Meirleir and his team I’ve gone beyond them. Although he and his groups unveiled ONE fundamental pathophysiological mechanism in ME/CFS, he did not reach the ULTIMATE CAUSE of the disease. And it seems I did. So far I have tested as REAGENT 127 patients with his NEUROTOXIC METABOLITE test, and 82% became NEGATIVE after the therapy I’ve developed. Also most got real clinical improvement, or full remission. I’ll soon publish my data.”
On another blog, an October 19, 2010 message, also by a certain E. F. Ramos M.D., states:
“Hello folks, I have been studying ME/CFS for 11 years and I’m finishing a clinical research with already 148 patients, all tested with a miniaturized version of de Meirleir test. This test doesn’t detect the CAUSE, but rather a POWERFUL PATHOPHYSIOLOGICAL MECHANISM involved in ME/CFS. However, I’ve developed a unique treatment that leads to a NEGATIVE test in previously REAGENT patients, with impressive clinical improvements in most of them. Very important I have tested and treated 16 DOCTORS and NURSES with the disease but their skepticism faded with successful targeted treatment.
I’m not hunting patients, I do not intend to continue diagnosing and treating ME/CFS patients; and I am not involved with business related to ME/CFS. In fact de Meirleir just sent me the tests for evaluation; and he doesn’t even know my results. I just intend to discover how to cure the disease. Meanwhile I can only affirm the test is a good diagnostic tool, especially useful for those not acquainted with ME/CFS clinical coherence, something that takes time to achieve. Soon I will publish my results.”
Perhaps a reader can shed some light on this?
Friday, October 29, 2010
The story of insulin is a fascinating one and the show itself was quite amazing, with many original and fascimile documents. The Patient Advocate bought a book called "Breakthrough" - authored by Thea Cooper and Arthur Ainsberg. The book tells the story of the discovery of Insulin and the last minute "resurrection' of Elizabeth Hughes (and others). Elizabeth was the daughter of the Secretary of State, Charles Evans Hughes. While the story line is riveting, the book suffers from various shortcomings, not the least is that it was written by two people - a fatal formula. Ultimately the book is a "poor read", as it suffers from unnecessary and misleading modern "flourishes". In other words the authors make shit up, they "dramatize" situtions that never happened. In this sense it is very "modern" and idiotic. This almost gets in the way of the essential narrative of this powerful story - and ultimately led the PA to go to the local public library and get out an older book on Frederick Banting, the Canadian inventor of insulin.
While reading "Breakthrough", the Patient Advocate had drumming through his head repeatedly - "Judy Mikovits is our Frederick Banting, Judy Mikovits is our Frederick Banting".
Frederick Banting has always been a favorite of the Patient Advocate - and it is no secret that Dr. Judy Mikovits is also a favorite of the PA, and has been for some time.