View the Post on the BlogAfter a warm winter the Sierras were experiencing a cold and snowy March. I drove into cold blue skies but within a day it'd started snowing -hard. We got 'over the hill' OK the first day, slipping a bit now and then, but got stuck on the highway the second. I hiked back to get some chains, we got in late and as usual Dr. Peterson's office was quite accommodating.
Alot had changed...After decades in his old office Dr. Peterson was in a newer, larger one with a small lab. Corinne met with Dr. Peterson, started getting her tests done and we talked with Dr. Peterson's research assistant, Gunnar, and then during lunch a couple of days later Corinne and I sat down with Dr. Peterson to talk about research and treatment and what's was going with Simmaron - the research foundation he's associated with. Later I talked with Simmaron's Director, Jonathan Morse. There was quite a bit going on.
With Ampligen study had just being released and Corrine was considering it as a treatment, Ampligen was on both our minds.
Ampligen
One of the few physicians providing Ampligen over the past 15 years Dr. Peterson intimately knows what Ampligen can and can't do… He made it clear that while the drug has its flaws, it's effective…. at times stunningly effective. In fact it's the most potent tool he has in his drug toolkit; it's so potent that he told Corinne that if Ampligen becomes available for her it'll replace everything she's taking…..the IVIG, Procrit, saline solution, amino acid drips, COQ10, etc. all will disappear and she'll simply be taking Ampligen.
(On July 11th, in a move that renewed hope for Ampligen, the FDA informed Hemspherx BioPharma, Ampligen's producer, that it would not require (prohibitively) expensive new studies before it would review the drug. Instead Hemispherx will be allowed to present an analysis of old and new data to the FDA in the third quarter of this year with the opportunity for approval coming six months following that. Read more here. )
It's Complicated - Just Like ME/CFS - The thing, though, is that the drug works. Dr. Peterson would love to see the drug approved and he's not clear why it hasn't been. Certainly there have been problems…. Ampligen has moved so slowly in the FDA's pipeline that its been shifted to at least five different divisions but hundreds of patients later the safety data is clear and it's shown to be more effective than other FDA approved drugs in improving exercise-related endpoints.
The FDA can engage in a process called 'accelerated drug approval' for disorders with unmet needs (check!) in which the drug which has shown to be safe (check!) may be tentatively approved for use - giving patients access to it and allowing a company to recoup its costs and collect data for final approval. Why Ampligen hasn't been given this opportunity is a head scratcher given the presence of a large patient community with no FDA approved drugs.
Interlude
Anita Patton - Anita kept a close eye on the small tube of Ampligen. As it began to drip into her veins she looked at her watch and began to count. It turns out that Anita responds to Ampligen very well - so long as its administered correctly….Get it into her system in the right dose and at the right speed and it’s a godsend…Get it into her system too quickly or too slowly and she'll get sick....
At the moment a vivacious blond, Anita has a long history with Ampligen….One of the first five to enroll in the Ampligen cost-recovery program in 1997 she was on the drug for 8 good years. A year after she went off the drug, though, she relapsed….First her gut imploded , then her viral titers (EBV, HHV6, Coxsackie B) skyrocketed back up and eventually she collapsed. Provigil, two anti-virals, IVIG and several years later she finally got back on the drug and once she did it only took a couple of months before she was back on her feet again. She's definitely not cured; she still has problems with viruses and infection and has to be cautious not to overdo but nothing helps her like Ampligen does.
She said her Ampligen infusions immediately do two things….first they make her hungry and then then they make her want to exercise - so feeling the need to burn some energy off, off she went to get lunch for some patients. The next day she was back - chauffering another patient to her appointment - something she does regularly when she's well enough.
Anita's system is unusually sensitive to Ampligen; it took Dr. Peterson time to find the right dose but once he did the drug was a godsend...A less attentive and experienced physician would have written her and Ampligen off when she responded poorly to the initial dose and those 8 good years and this current rebound would have been a fantasy.
Linda Barossi- Another of the first five to enroll in the 1997 Ampligen trial Linda Barossi owned a flight school and aircraft sales and rental company and was a pilot before she became ill in 1986. Her company and her flying were now distant memories but she called her 18 months on Ampligen in the late 1990's 'a miracle'. After getting her insurance licenseshe worked two part-time jobs, but a move to a mold-filled house left her almost bedridden with tachcardia spikes over 200 bpm.
Over time she was diagnosed with neurally mediated hypotension and postural tachycardia syndrome (POTS). At one point she was on saline IV's 7 days a week (with Dr. Peterson coming in on weekends to help her out). With Dr. Peterson and Dr. Rowe together she took her insurance company to court to provide IV's and won; she now gets them twice a week...They've been a lifesaver, as soon as she goes off them, she declines rapidly.
Another course of Ampligen in Oct. 2001 worked again and she was back working part-time. In 2004 she became a full-time caregiver for a year and a half and then worked full-time as an accountant but over time began to decline again. By 2007 she was functional but sick and by 2009 she was mostly housebound. She lived with the hope of Ampligen being approved by the FDA but that was not to be and finally in late 2010 she went on Ampligen for the third time, eventually joining the community of patients living in Reno solely for the purpose of seeing Dr. Peterson.
She said her first time on Ampligen had long-lasting effects but the need to support herself financially and her own fierce determination to bull through the illness had never allowed her the luxury of rest. She stated she would never see another doctor; that every other doctor has been ruinous for her but that it'd taken a long time for her to really hear Dr. Petersons admonitions that efforts to 'outrun' or outmuscle or outwill the disease would end in failure. Each one did, she noted...leaving Dr. Peterson to 'pick me up, dust me off and we start all over again'.
Bob Miller - also went way, way back with Ampligen. A former coal miner and labor organizer, Bob was mostly bedridden and had alarming cognitive problems when he first went on Ampligen in 1998. Three months later worries about him getting irretrievably lost only blocks from his home were gone and he was no longer bed-ridden.
Bob was on the drug for 4 years, maintained his level of health for 2 more and then began to slip.....Almost back in bed by 2008 he went back on the drug and has been on it ever since. He's in no way healthy; physical exercise quickly does him in but, an active advocate, he's able to travel and get around....the difference between Bob on Ampligen and Bob off Ampligen is enormous...
Ampligen hasn't been a miracle cure for any of these three patients but in its own way it has been a miracle as it's allowed each of them to emerge from a highly disabled existence to be able to get out, sometimes work and enjoy life. Bob related that Dr. Peterson said that after going off Ampligen about a third of patients actually get better, a third maintain their improvement and a third eventually slide back.
- Dig Deeper -Read Kelvin Lord's Experiences on Ampligen
Rituximab (Rituxian) and Autoimmunity
In an interview with Llewelyn King Dr. Peterson noted that he's seen the same pattern of improved health in lymphoma patients of his with ME/CFS that Fluge and Mella saw in Norway. A monoclonal B-cell antibody drug may work very well for some patients but Dr. Peterson was concerned that simple market economics may keep Rituximab from being the drug for ME/CFS. Rituximab's soon to be generic status means Roche has no incentive to undertake expensive studies on its effects in CFS and without those studies there's little hope insurance companies will cover the cost of the drug.
Some people will be able to pay the out of pocket costs once the drug goes generic and its manufacture does provide steep discounts for lower income people but it may be a next generation drug of this type - and Dr. Peterson noted that several are under development - that ultimately benefits the ME/CFS community the most. Dr. Peterson will be administering the drug to patients in Dr. Kogelnik's Open Medicine Rituximab study getting underway.
Dr. Peterson doesn't know if CFS is an autoimmune disorder per se but he finds that as the years go on more and more patients have positive antinuclear antibody tests. (Given that perception it'll be interesting to see if longer duration patients tend to benefit more from Rituximab .) He noted that a common finding in his practice, autoimmune thyroiditis, is often virally induced.
- Dig Deeper: Check out Phoenix Rising's Rituximab Resource Center
- Dig Deeper; Rituximab: the Drug - From the Beginning to Now
Research
NIH CFS Study - the NIH in-house study on ME/CFS is dead, dead, dead….We never knew just what it entailed...even Dr. Peterson, who contributed some patients, was unclear on exactly what they were looking for but it was thought to be rigorous. The physician in charge of the study was apparently quite impressed by how sick the patients were but the study is over, killed off in part by the collapse of XMRV and the bad taste the XMRV saga left. XMRV helped legitimize CFS because the world learned how serious the disorder can be but the way it was handled also, Dr. Peterson, felt, had consequences. When you're the underdog you have to sometimes be better than the competition to get recognized and we weren't.
Chronic Fatigue Initiative Pathogen Study - Dr. Peterson runs one of the centers participating in the CFI's Hornig-Lipkin pathogen study. I asked him how definitive he thought the study would be…. If pathogens are present in one of those four tissues (blood, feces, tears, saliva) would Lipkin find them? Will the herpesviruses that Dr. Peterson at times finds show up? Calling the study 'extremely complex and rigorous' he said absolutely they would.
With its four tissue samples the study is already far more comprehensive than any others but Dr. Peterson, noting that pathogens found in the spinal fluid often don't show up in the blood or elsewhere, wanted the CFI team to sample spinal fluid as well. When I talked with him in March he was negotiating to do that; now according to his recent with Lleweln King interview that's been done - so add spinal fluid to Lipkin's list.
Dr. Peterson stated that Dr. Lipkin is interested in ferreting out subsets which suggests that simply the appearance of any virus will be significant enough to warrant attention. Again my understanding was that if Lipkin finds a virus that means it's active; these are not difficult to interpret antibody tests that we're used to with herpesviruses; it sounds like a found virus is a serious virus and a cause for potentially setting a group of patients aside.
It's hard to believe that some positives will not be found; it’s the percentage that is the question. Dr. Peterson, of course, finds positives in his patient population, but with his focus on patients with natural killer cell dysfunction, he probably sees a group of patients more likely to have them. When asked to take a guess he took a conservative guess - something in the 10-20% range perhaps. He felt that finding even small percentages, though, would make a big difference, since that should get different patient groups segregated from each other in research studies. His guess was that Lipkin will not find new pathogens. (In our recent ME/CFS professional survey most felt the same.)
He noted this kind of study from this kind of researcher could have profound treatment implications including justifying the use of off-label drugs for CFS (presumably to doctors not currently willing to do so).
Kudo's to the Hutchins Family Foundation and the Chronic Fatigue Initiative for putting this study together. A comprehensive pathogen study should have been done years ago but with the pathogen arrays improving all the time, it also would not have been nearly as powerful…This is a great time to do this study.
A Proving Ground
The XMRV Lipkin study was a proving ground, so to speak, for Dr. Peterson and Simmaron because it gave them access to a high-level, rigorous, research environment. From the beginning of Lipkin's NIH XMRV study they were eager to position themselves as a group Lipkin could trust and is comfortable working with. With Simarron adding another element (spinal fluid) to the CFI study, they've clearly done that.
It probably helps that Gunnar, Dr. Peterson's research assistant, has a competitive streak a mile long. His goal was to be the first center in the CFI Lipkin study to get their samples into Lipkin's hands and they were.
Dr. Montoya, by the way, has dropped out of the CFI study. He is being replaced by Dr. Felsenstein at Mass General..
Proteomics and Biomarkers in ME/CFS
Genes make proteins and then proteins mostly run the show in the cells. This kind of 'on the ground' presence means that counting proteins (proteomics) has much greater potential to unlock what's going in the cells than genomics.
Finding high levels of a protein in a disorder can be gold. For one (a) it's likely to be a biomarker and b) you may have a target you can hit with a drug. Finding a protein in natural killer cells that was interfering with pathogen destruction, for instance, would give researchers a chance to develop a molecule that could latch onto that protein and stop it from functioning thus allowing NK cells to get back to efficiently killing pathogens again and hopefully leaving ME/CFS patients healthier.
Unfortunately counting proteins is not easy and is expensive. Dr. Peterson was very high on the Schuster/Natelson spinal fluid study results which revealed different proteins in CFS patients vs Lyme patients but he noted that each 'run' cost about $500,000. A 2010 review article identified three critical areas that need to be resolved and hopefully costs will be dropping in the future.
Two schools of thought exist on how close the field is to producing biomarkers; (1) they've been found and simply need to be validated and (2) they still need to be found. Dr. Peterson is leaning towards the first - he believes they've probably been found and further study will reveal which ones they are. He was particularly intrigued by PHANU researcher Brenu's finding of altered miRNA findings that could be turning off natural killer cell functioning.
CDC Turning Over a New Leaf
Dr. Peterson was impressed with a new CDC study that's examining how different ME/CFS physicians diagnose and treat their patients. If Dr. Unger's theory - that different ME/CFS physicians treat different types of CFS patients - is correct (and Dr. Peterson thinks it is) the study could have major repercussions . This is the first time anyone has taken a rigorous look not only at what kind of patients show up at the different specialist clinics but how they are treated.
If Dr. Unger finds that testing and clinical data indicate that more pathogen ridden patients show up at Dr. Peterson's clinic while people with more autonomic nervous system problems or Ehlors-Danlos Syndrome show up at, say, Dr. Pocinki's clinic she'll have a nice basis for sub-setting the CFS community.
Dr. Peterson thought Dr. Unger did a 'great job' in designing the study, which he believes could ultimately help pave the way for a new definition and valid subsets.
CASA
A Do-Over - CASA means house in Spanish and the idea behind the CASA project was to build a data center to that could house the results of multi-center ME/CFS studies. This is major project involving the NIH, CDC, researchers and physicians that has wide implications for the CFS research field. Before they could build a data center the group has had to determine what kind of data it should hold and as they're doing that they're taking the opportunity to redefine and reorganize how ME/CFS should be studied. (Actually its not re-organizing anything and it's not a 'do-over' because the field was never organized to begin with - it simply came together in a kind of polyglot fashion; CASA is the first broad-scale organized approach to the chronic fatigue syndrome research field ever.)
Dr. Vernon has long said that buy-in from the feds is critical to producing large-scale collaborative efforts and that’s what's happened with CASA. Conceived at the State of the Knowledge Conference last year to pave the way for multi-center studies, buy in from the CDC and NIH provided resources for the project and, in turn, energized the research community. (This is the kind of project NIH and CDC CFS researchers probably love to do at this point; they can provide time and expertise and some resources but not a lot of money.)
Dr. Peterson said every two weeks or so from 10-20 members of the ME/CFS research community and Federal representatives meet to determine which 'instruments' (ie data fields) should be included in CASA. Researchers are tasked with coming up with the best means of testing certain factors. Should cortisol, for instance, be measured in the blood or saliva? What time of the day should it measured? How often? What specific test should be used? Every test in CASA's data base will undergo a rigorous analysis in order to determine which tests multi-center investigators should use in their studies. A recent meeting focused on the best ways to assesse pain levels in patients….
Once CASA is complete multi-center trials using larger numbers of participants will be more easily completed and the long desired 'Gold Standard' for ME/CFS research should be in place. Not surprisingly, given Dr. Vernon's interest in this area, the CFIDS Association of America has announced they will be the first to implement CASA's findings in their research studies; ie their researchers will use agreed upon 'standards' to collect their data and their findings will be directly comparable to researchers that use the same testing procedures.
CASA didn't spring out of thin air...It was birthed out of the State of the Knowledge Meeting and demonstrates how important these kind of collaborative get-togethers are.
Hodgkins Lymphoma and The Levine Connection
An established cancer researcher with a history in CFS, Dr. Levine had sent a research assistant, Salman Hashmi, over to Dr. Peterson's office to help him with his database and look for patterns. Sporadic cases of Hodgkins lymphoma in CFS drew Dr. Levine's interest decades ago.
The search for a possible non-Hodgkins Lymphoma (NHL) connection in chronic fatigue syndrome has been sporadic. Grufferman et. al. first pointed out a possible connection in a North Carolina cluster as far back as 1988. Escept for Incline Village, Grufferman was unable to find evidence of a cluster in other outbreaks. A 1998 Levine paper found preliminary evidence that higher rates of NHL and brain tumors occurred in the two northern Nevada counties that constituted the Incline Village 'outbreak'.
Levine and Peterson's follow up 1992 Cancer Research paper "Does Chronic Fatigue Syndrome Predispose to Non-Hodgkin's Lymphoma", which was described as 'very preliminary', did not find a connection at the state level but reported that a county wide analysis was in progress (which was never published).
Skip forward 18 years later to the 2009 IACFS/ME conference in Reno where Dr. Smith-Gagen, an epidemiologist at the University of Nevada Reno, had picked up the trail again after Dr. Peterson reported high rates of NHL in patients with T-clonal cell abnormalities. She reported that 5% of Dr. Petersons Nevada Cohort had NHL and 30% of them had a very rare type of Non-Hodgkins Lymphoma called Mantle Cell Lymphoma. (That connection was one of the things that spurred Dr. Mikovits to research chronic fatigue syndrome.) Dr. Smith-Gagen's statewide, county-wide and then city-wide analyses suggested that a cluster was present in Incline Village. Dr. Smith-Gagen stated she was surprised to see the connection pop out so vividly there.
Three years later, though, even though the cancer cluster project is listed on Dr. Smith-Gagen's project list on her academic website, no papers have been published (and she did not respond to emails). Other tantalizing hints have occurred. In 2006 a CDC gene expression research suggested that a gene (TLC1A) linked to T-cell Lymphoma was found in a subset of CFS patients and in 2012 higher rate of non Hodgkins Lymphoma were found neurasthenia patients followed for several decades.
Recently, cancer researchers at the National Cancer Institute examined a very large patient registry to determine if cancer rates were increased in ME/CFS. Their results suggested that three types of non-Hodgkins Lymphoma may indeed be associated with ME/CFS, a few cancers may be less common on ME/CFS patients (breast, oral cavity cancers) and the risk of cancer overall was not increased. The authors reported that the study supported the link with NHL reported in prior studies and pointed to several immune abnormalities ( reduced NK cell functioning, the presence of auto-antibodies, increased cytotoxic T-cell levels, herpesvirus infections…..) ultimately stating a cause-effect relationship could be established.
"The findings of altered immune function in CFS…..suggest that an etiologic relationship underlies the observed associations in our study."
The study was not bullet-proof; it relied on ME/CFS diagnoses from general practitioners who may be lumping other patient types in (the wastebasket syndrome) but it was intriguing seeing those same types of cancers pop up again.
It should be noted that these types of cancer are very rare; even if you have ME/CFS the risk of getting them is very low; in fact the authors noted that the risk of getting appeared to be so small that it wouldn't "affect the clinical management of patients with CFS". The study may be more important in its ability to shine more light on the immune abnormalities present in ME/CFS than in identifying a major threat to patients.
"We could not estimate the absolute risk of NHL associated with CFS, but the risk is likely too small to affect the clinical management of patients with CFS."
In some ways the very presence of the paper is an amazing thing...seeing cancer researchers from the National Cancer Institute taking the immune and pathogen findings in chronic fatigue syndrome seriously enough to mount a major data mining exploration to see if there is cancer link is somewhat astonishing and speaks well of the progress the disorder has made at some levels.
Check out more on this study from Dr. Vernon of the CFIDS Association http://www.research1st.com/2012/06/03/risky-business/ and Jenny Spotila
Simmaron
Jonathan Morse, the Director of the Research Foundation, talked of the exciting work done on the immune system and Simmaron's focus in that area. A major part of his job, as he sees it, is to ferret out and bring new researchers into Simmaron's orbit, expanding research opportunities for ME/CFS. To that end Simmaron has created a roadmap of investigations they feel will shed vital light on the connection between CFS and the immune system, autoimmunity, viral reactivation and cancer.
Simmaron has formed several partnerships with ME/CFS research groups, none with more potential than a relatively little-known but rapidly emerging group in Australia called PHANU (Population Health and Neuroimmunology Unit) .The relationship began, as so many in the research world do, at a scientific conference in Australia in December 2010. Both groups have something to give each other; Dr. Peterson has a large and well-characterized patient population and decades of experience; PHANU has a fantastic lab with cutting-edge technologies that is only going to get better.
PHANU's director, Dr. Marshall-Gradisnuk is on Simmaron's Scientific Advisory Board….In a recent interview with Phoenix Rising she said.
I along with the CFS/ME research group that I lead have the greatest respect for Dr. Peterson. He is a true gentleman and an amazing clinician. I met Dr. Peterson when he came to Bond University in December 2010 when he was invited to an International Science Symposium for CFS/ME that I was leading with Dr. Staines from Queensland Health. Our meeting was organized by the Alison Hunter Memorial Foundation - a wonderful group of dedicated people. I am very proud to say that Dr. Peterson is a significant collaborator on a number of large national grants for CFS/ME that I have.
Spinal Fluid Breakthrough?
Simmaron's top priority at this point is a joint Simmaron/PHANU study designed to look for evidence of immune/autoimmune activity in the spinal fluid. In our last interview Dr. Peterson said he believes immune activation in the brain is probably driving many of the symptoms present in ME/CFS and the spinal fluid is probably the closest shot (short of taking a biopsy) to figuring out what's going on there.
Simmaron's been focusing on gather 'pre-pilot' data and their pre-pilot spinal fluid data blew researchers away and helped inspire the Mason Foundation to give PHANU one of the largest ME/CFS grants ($830.000) ever but the grant came with a condition…. a $220,000 pilot study had to be completed first. Thanks to the generosity of patients (with special thanks to the Linda Tanenbaum of the Neuro-Immune Disease Alliance) a third of that is in the bank leaving just $150,000 to go.
One in….Five Out
You can't get a much better deal than this...each dollar you donate will, with the Mason Foundation's help, bring in 5 more research dollars but we have to get that money in there first. Long time patient, advocate and supporter, Rich Carson of Prohealth recently launched a personal appeal for funds stating " There has never been a better time or a better opportunity".
This study has been in the works for over a year. Gunnar, Dr. Peterson's lab director, described the lengths to which the groups went to get the spinal fluid safely from Dr. Peterson's lab in Incline Village across the world to Australia...First there was an overnight flight to China with a rep meeting the temperature controlled and digitally monitored 'dummy package' at the plane and then the trip down to Australia, where it was immediately retrieved. That process worked and the spinal fluid will be winging it way down to Australia should funds permit.
Simmaron is so enamored with PHANU's technologies that they've gone so far as to send selected patients - not samples - all the way down to Australia to take advantage of them. Bond has been very good to PHANU and Bob Miller, one of three patients traveling to Australia, described a rigorous lab - the patients blood being whisked away as soon as it was taken for workup and a large and well-equipped lab - the largest ME/CFS lab he had seen.
With their sophisticated lab PHANU had a good gig going at Bond but they're moving on….As interest in their work has grown suitors have come calling and recently Griffiths University, a much larger university made Dr. Marshal-Gradisnuk an offer she'd couldn't refuse - a substantially larger lab in a new wing they're building. The lab is a quick skywalk to the hospital providing easy access to medical facilities and, of course, they're hooked in the academics as well, it’s a true Center for Excellence down under - the largest and most sophisticated ME/CFS lab in the world….
Cardiomyopathy Study
Now we wing back to one of the Simmaron's other partners, Columbia University, the home of the Lipkin/Hornig lab for another study. Simmaron is looking for donations (a pittance, really in medical terms - $12,000) to get detailed workups of 4 Incline Village patients who developed a mysterious form of dilated cardiomyopathy. Simmaron would love to scour their serum, plasma and other bodily fluids for clues as to what's gone wrong with these patients. (At the HHV-6 Symposium several presentations demonstrated HHV-6's ability to infiltrate and damage heart tissues. Unfortunately that work has not been followed up on in ME/CFS.)
Building….Building….
Things are converging for Dr. Peterson and Simmaron…The XMRV and CDC studies and his collaboration with the Open Medicine Institute brought a new rigor to Dr. Peterson's data collection procedures ( the big folders are disappearing). His collaboration with the Chronic Fatigue Initiative and Dr. Lipkin got him into a world-class research environment and he's forged a strong relationships with PHANU, which is becoming a major player in ME/CFS research .
With his new data capture capabilities Dr. Peterson hopes to be able to get enough good data to apply to go to Merck or other pharmaceutical company and get them interested in clinical trials. There may not be much punch in looking at the old data (13,000 patient charts) given the way the data was collected but with his new systems in place he should be able to gather new data quickly…
The Big Picture
The past couple years have been extroardinary not only in the number but in the type of independent efforts that have been created. Remarkably, the Chronic Fatigue Initiative, Dr. Montoya's Chronic Infectious Illness Initiative, Dr. Klimas's Neuroimmune Institute at Nova Southeastern, PHANU, Simmaron, Mt Sinai, the Open Medicine Institute and the WPI have all been created or have expanded recently.
At least five Biobanks (CAA, CFI, WPI, NIH, Simmaron) are in existence and a national Patient Registry has been suggested. The CASA project is moving forward, the IACFS/ME produced a Treatment Primer to compete with the CDC Toolkit and is producing a journal, the CDC is working with ME/CFS physicians and the Open Medicine Institute…...things aren't just coming together for Dr. Peterson and Simmaron, the whole field feels like its moving forward together.
With the CAA dedicating itself to the Open Science principles, the Open Medicine Institute collaborating with many of the major physicians, Dr. Peterson working with the CFI, OMI, CDC and PHANU, Dr. Klimas emphasizing collaboration, collaboration, collaboration….the spirit of openness that prevails suggests something is happening that is larger than the sum of its parts. Many of these efforts are small and they’re operating in a poor economic environment and only time will tell how significant they become but the nucleus for substantial progress appears to be there.
- Dig Deeper - Dr. Peterson - Phoenix Rising's Important Leaders Series - his work and history plus links
- Dig Deeper - Dr. Peterson Talks with Llewelyn King
- Dig Deeper - Looking Forward: Dr. Peterson on ME/CFS Research, Treatment Options and Hope for the Future
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Dr. Peterson Talks! On Ampligen, Autoimmunity, Pathogens and His New Partnership
- Thread starter Phoenix Rising Team
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I have no idea and Dr. Peterson didn't seem to know either.
The NIH study was always kind of mysterious but I believe Dr. Peterson was sending patients across to the country to get extensive testing done. I never knew what it was focused on though...As I noted the physician he was in touch with was impressed with just how sick some of the patients were...
He's said that at various times over the years; he said the same kind of thing to me in 2009 I think, it was, at the HHV6 conference. He's always felt people with ME/CFS have gotten the short end of the stick big time...that they'd been treated really, really poorly and given that really aggressive advocacy was called for...Honestly except in stops and starts we really haven't done that...we haven't had an organization that was willing to organize that kind of effort and we haven't had the healthy people behind us who would have been so helpful....Just look at Mary Dimmock, the healthy mother of a son with ME/CFS; she has made a huge difference with the Stakeholder meeting, the DHHS letter, the MECFS Coalition....she's played a very important role in all of these.....If we had just five or ten more Mary Dimmocks we could really build something....Not to say that its not the patients responsibility but in most disorders I think you have a strong cadre of healthy people leading the charge. - That's emphatically not true in ME/CFS....
How robust a study could it have been if they were prepared to jettison it without a word of explanation? And why was it mysterious?
As for the impression these very ill patients made on this doctor, where has the NIH been while people, just as sick, or sicker have been allowed to languish and die. Even their responses to this, if not accompanied by major mea culpa and concrete action, are shameful. If they are ignorant, they have been willfully so.
While you and I often disagree, I do appreciate the information you provide.
Thanks Akrasia- we have had our disagreements!
I agree - the federal govt's response to ME/CFS has been shameful, negligent - horrible...there aren't too many adjectives too strong....
As to the study I really have no idea...it was there and then it wasn't; that doesn't sound too robust does it? Maybe it was a researchers pet project that he got tired of or lost the money for...it never to my knowledge showed up in the NIHReporter which cites funded studies....but then alot gets done with discretionary funds...
Yet another fine piece with a huge amount of new information, Cort, thank you.
I share your optimism that things are really beginning to move in CFS research both individually and collectively. Best of all, people are really getting to grips with the need for robustly defined and measured patient cohorts.
The PHANU/Peterson link up is a good example of this. Brenu's (a PHANU researcher) work confirming the Klimas/Fletcher finding of diminished Natural Killer Cell Cytotoxicity in CFS was a good study, but its one weakness was in using self-reported CFS diagnosis backed up only by a questionnaire, which unfortunately wouldn't meet the requirement of any published case definition. The hooking up of PHANU's research resources and technology to Peterson's large group of well-categorised patients is a perfect match.
I'd not hear of CASA before, and great that something has emerged from the SOK quite so quickly. And good that Peterson has been able to persuade Lipkin to extend the range of tissues sampled, which speaks volumes for their relationship and also, I think, shows that Lipkin appears very willing to listen and adapt.
ps
I share your optimism that things are really beginning to move in CFS research both individually and collectively. Best of all, people are really getting to grips with the need for robustly defined and measured patient cohorts.
The PHANU/Peterson link up is a good example of this. Brenu's (a PHANU researcher) work confirming the Klimas/Fletcher finding of diminished Natural Killer Cell Cytotoxicity in CFS was a good study, but its one weakness was in using self-reported CFS diagnosis backed up only by a questionnaire, which unfortunately wouldn't meet the requirement of any published case definition. The hooking up of PHANU's research resources and technology to Peterson's large group of well-categorised patients is a perfect match.
I'd not hear of CASA before, and great that something has emerged from the SOK quite so quickly. And good that Peterson has been able to persuade Lipkin to extend the range of tissues sampled, which speaks volumes for their relationship and also, I think, shows that Lipkin appears very willing to listen and adapt.
ps
I think you might get more readers if you did split it up, say in this case into Ampligen and Other Research. While your writing is very readable, that much text is a bit daunting and chunking it up might make it more accessible.Thanks Frenchtulip - it is rather long
tsha
Thanks Simon - I think you have a good point about too much text.....Look for more from PHANU on natural killer stuff; they are all over that.
Ah...the Chimerix trial....For now it doesn't seem to be happening..Dr. Peterson said to keep up hope but that he Chimerix seemed to be focused more on other projects. I got the feeling Chimerix kind of drifted away; the project seemed like it was on and then it just kind of never got going. He was hoping they were going to drift back. Hopefully it will at some point...it sounds like a great opportunity and great drug for those with herpesviruses.
I keep forgetting to ask him that....I knew there was something I forgot. :thumbdown:
Cort, a fabulous and well-written article and I so appreciate all that you are doing!! Keep up the great work, you are an amazing man to provide all this information to all of us, thank you!
Thanks - your nice comments were like a cool breeze on a hot southern summer day. (It's about a 100 in Raleigh right now
Cort, just to let you know, the quote in your post, above, has 'misfired'.
The quote in your last post belongs to completely different and random thread:
http://forums.phoenixrising.me/index.php?goto/post&id=30505#post-30505
(It's a little befuddling!
)I noticed that this happened for you in the comments under another recent article, as well:
http://forums.phoenixrising.me/inde...nd-implications-for-me-cfs.18172/#post-277037
You quoted a post from a completely different random thread again:
http://forums.phoenixrising.me/inde...tion-of-wpi-xmrv-study.1001/page-5#post-28207
I don't think this is a new phenomenum... I think it used to happen to me occassionally on the previous system.
The solution is to edit your post, and to re-quote the post that you are responding to.
That will fix your post, if you can remember which post you were responding to in the first place!
Thanks, Bob, for correcting that funny intrusion from a posting I had made in 2009--a mouse, indeed! But getting the alert on it did prompt me to read Cort's article and this thread carefully, which feels very important. Thanks, Cort, for pulling together what is happening in the field of research so well, because it helps us respond in more coordinated, intelligent and effective ways both to our individual situations and to this situation at large.
I have thought of us as like the boxer who has taken a couple of bad head punches but is still trying to hold on in the ring. We may not be able to fight strong anymore but we can try to fight smart.
I have thought of us as like the boxer who has taken a couple of bad head punches but is still trying to hold on in the ring. We may not be able to fight strong anymore but we can try to fight smart.
I think a WIKI page would be a great idea..We can get studies from clinicaltrials.gov and NIHReporter and then go around to funders and researchers and ask what they have in place, when they think they will be done, are they recruiting for patients, etc.
We think we know what we want to do with the WIKI but the issue has lost a bit of steam....volunteers to get the WIKI going would help....
Do you mean you are looking for volunteers for the wiki in general? i.e. setting it up?
Cort, just to let you know, the quote in your post, above, has 'misfired'.
The quote in your last post belongs to completely different and random thread:
http://forums.phoenixrising.me/index.php?goto/post&id=30505#post-30505
(It's a little befuddling!
I noticed that this happened for you in the comments under another recent article, as well:
http://forums.phoenixrising.me/inde...nd-implications-for-me-cfs.18172/#post-277037
You quoted a post from a completely different random thread again:
http://forums.phoenixrising.me/inde...tion-of-wpi-xmrv-study.1001/page-5#post-28207
I don't think this is a new phenomenum... I think it used to happen to me occassionally on the previous system.
The solution is to edit your post, and to re-quote the post that you are responding to.
That will fix your post, if you can remember which post you were responding to in the first place!
Its happening to me in particular....perhaps because I'm logging into both Wordpress and Xenforo......merging systems together can be problematic...Thanks for documenting what's going on.
I like the boxer image - getting a bit punchy but still hanging in their and looking for the right opening
We have a very good outline...We need people to work together to figure out a) which wiki we want b) permissions c) which parts of the website should be incorporated into it and how to incorporate it into the Forums/website. We got off to a great start but things have fizzled over the last month and a half...
Cort,
If this shows up twice, I apologize. Had it all written out... Internet timed out, not sure it posted.
Thanks so much for a great in-depth magazine length article. I enjoyed it. As I am following other things currently, I almost did not read it right away, and further down into the body of the article, my attention was held completely as you mentioned the CDC, biomarkers, etc. I am not sure how it could have been titled to tip me off to other topics within the body of it, and I am not sure splitting it into parts would have been good either! It was good as one intact piece. Maybe a marker at the top as to depth, length, etc.??
So much information, so little time... a huge semantic spider web that just spills over and grows exponentially daily.
Thank you for all you do. It is a full-time job just keeping up with YOU and what you have written about ME/CFS. Don't know how you do it...
If this shows up twice, I apologize. Had it all written out... Internet timed out, not sure it posted.
Thanks so much for a great in-depth magazine length article. I enjoyed it. As I am following other things currently, I almost did not read it right away, and further down into the body of the article, my attention was held completely as you mentioned the CDC, biomarkers, etc. I am not sure how it could have been titled to tip me off to other topics within the body of it, and I am not sure splitting it into parts would have been good either! It was good as one intact piece. Maybe a marker at the top as to depth, length, etc.??
So much information, so little time... a huge semantic spider web that just spills over and grows exponentially daily.
Thank you for all you do. It is a full-time job just keeping up with YOU and what you have written about ME/CFS. Don't know how you do it...