Dr. Peterson Talks! On Ampligen, Autoimmunity, Pathogens and His New Partnership

July 13, 2012

Posted by Cort Johnson

After 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 license she  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.

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.

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.

 

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56 comments

{ 56 comments… read them below or add one }

frenchtulip July 13, 2012 at 10:53 am

This looks excellent and I will read it tonight when I have time. Thanks, Cort, for all your hard work!

Cort July 13, 2012 at 11:39 am

Thanks Frenchtulip – it is rather long :)..I did consider breaking it up into two blogs…If anyone has any comments on whether that would have been better I'd be interested to hear them. I do tend to do long posts – which is kind of a no-no for the web :).

My sense of Dr. Peterson from Gunnar and Dr. Peterson is that he's wanted to do research for years; that he's essentially a frustrated researcher and when he got the chance with the XMRV Lipkin studies he jumped on them. After that he's jumped on every opportunity he can – even to the extent of starting his own research foundation – Simmaron..

In hindsight what a shame it didn't work out at the WPI; they've got a excellent lab, a beautiful facility but in hindsight they made the wrong choice…If Dr. Peterson had stayed the WPI would be working with Chronic fatigue Initiative, PHANU, CDC and Open Medicine Institute and Dr. Perterson would have access to a excellent lab. Plus he would be working with Vinnie Lombardi – whom he mentored earlier in his career!

Its incredible how things turn out….even though he had to start over on the research end, Dr. Peterson is doing fine….he's engaged in quite a few studies (would probably love to do more) and he's kind of a wanted man in the field.

Bob July 13, 2012 at 1:10 pm

Cort, that's really interesting, thank you! It's a really great and thorough piece of journalism.
And it answered quite a number of questions that I've had for some time.

It is a long article, but it all fits together nicely, and it can be read in separate sittings.
My only (very minor) complaint is that I don't like the formatting on your forum blog posts (the formatting is a bit messy), so I click through to the wordpress version, but clicking on 'home' at the top of the forum, which I find a lot easier on the eye.

I enjoyed reading the personal stories about the patients taking Ampligen. That was really interesting and helpful. Do you, or does anyone else, know if there have been any research papers published for the treatment of ME with Ampligen? My memory seems to have failed me with regards to Ampligen research.

It's a shame to hear that Rituximab is going to be difficult to get approved, because of the patent situation. I imagine that researchers might quickly become aware of some alternative similar drugs now that we've discovered Rituximab, and that alternatives might be thought of quite soon. Interesting to hear that some new alternatives are being developed. I'd be interested to know at what stage of development they might be. But Rituximab research is still in its infancy, and there might yet be some astounding results from Norway that will yet transform the field. If the results of the trials are outstanding, then I hope that the FDA will at least have a look at Rituximab. (I said very hopefully. I don't know how the US system works, so maybe it's out of the question.)

It's good to know that Lipkin is going to test spinal fluid as well now, for the CFI study. Actually, that's really good news. I thought that his efforts might almost be wasted if they don't test some tissue samples (such as lymphoid tissue) for latent viruses. I don't know much about it, but maybe spinal fluid has as much potential as lymphoid tissue, or possibly even more.

Also interesting to read that if Lipkin finds a virus then it will be a significant find: It will be a definite and active infection, and not just a vague antibody result. I hadn't understood that difference before now.

The CFI Lipkin study could be a really important and transformative study. Dr Chia has found enterovirus shell proteins in the stomachs of 82% of CFS patients with stomach complaints, and 75% of Lerner's CFS patients (who test positive for Herpes), have responded to treatment with valacyclovir and/or valganciclovir. So it will be interesting to see if there is any overlap between Lipkin's results and the other researchers' work. Enteroviruses (e.g. polio) have been associated with ME for decades. And then there's retroviruses, of course!

If Lipkin is able to subset patients, that could prove to be invaluable for future research.

A question: do you know the details of the planned NIH CFS Study that they've cancelled? My memory is useless, and it would be helpful to know what I should cross off my mental list of research in the pipeline.

It's confuses me that Montoya has dropped out of the CFI study. I thought he was an integral part of it.

OK, I have to take a break now. I've got up to: Proteomics and Biomarkers in ME/CFS, and I'll read the rest later.
Thanks again Cort. It's really interesting.

Bob July 13, 2012 at 1:18 pm
Cort

Thanks Frenchtulip – it is rather long :)..I did consider breaking it up into two blogs…If anyone has any comments on whether that would have been better I'd be interested to hear them. I do tend to do long posts – which is kind of a no-no for the web :).

My sense of Dr. Peterson from Gunnar and Dr. Peterson is that he's wanted to do research for years; that he's essentially a frustrated researcher and when he got the chance with the XMRV Lipkin studies he jumped on them. After that he's jumped on every opportunity he can – even to the extent of starting his own research foundation – Simmaron..

In hindsight what a shame it didn't work out at the WPI; they've got a excellent lab, a beautiful facility but in hindsight they made the wrong choice…If Dr. Peterson had stayed the WPI would be working with Chronic fatigue Initiative, PHANU, CDC and Open Medicine Institute and Dr. Perterson would have access to a excellent lab. Plus he would be working with Vinnie Lombardi – whom he mentored earlier in his career!

Its incredible how things turn out….even though he had to start over on the research end, Dr. Peterson is doing fine….he's engaged in quite a few studies (would probably love to do more) and he's kind of a wanted man in the field.

Yes, Dr Peterson does seem to be very prolific at the moment, in terms of the research he's involved with. It's great to see.

I wonder if people like Dr Peterson have suddenly been able to find high-profile research partners and adequate research funding for the first time, since XMRV raised our profile.

And research into ME, generally, seems to have mushroomed almost exponentially since the XMRV paper was published. That's my perception of it anyway. I might be wrong because I've only been ill for 8 years, so I don't have a wide perspective on the history. But there seems to be so much high quality research being carried out at the moment in the US, Norway and Australia.

Cort July 13, 2012 at 2:55 pm
Bob

Cort, that's really interesting, thank you! It's a really great and thorough piece of journalism.
And it answered quite a number of questions that I've had for some time.

It is long, but it all fits together nicely, and it can be read in separate sittngs.
My only (very minor) complaint is that I don't like the formatting on your forum blog posts (the formatting is a bit messy), so I click through to the wordpress version, but clicking on 'home' at the top of the forum, which I find a lot easier on the eye.

I enjoyed reading the personal stories about the patients taking Ampligen. That was really interesting and helpful. Do you, or does anyone else, know if there have been any research papers published for the treatment of ME with Ampligen? My memory seems to have failed me with regards to Ampligen research.

It's a shame to hear that Rituximab is going to be difficult to get approved, because of the patent situation. I imagine that researchers might quickly become aware of some alternative similar drugs now that we've discovered Rituximab, and that alternatives might be thought of quite soon. Interesting to hear that some new alternatives are being developed. I'd be interested to know at what stage of development they might be. But Rituximab research is still in its infancy, and there might yet be some astounding results from Norway that will yet transform the field. If the results of the trials are outstanding, then I hope that the FDA will at least have a look at Rituximab. (I said very hopefully. I don't know how the US system works, so maybe it's out of the question.)

It's good to know that Lipkin is going to test spinal fluid as well now, for the CFI study. Actually, that's really good news. I thought that his efforts might almost be wasted if they don't test some tissue samples (such as lymphoid tissue) for latent viruses. I don't know much about it, but maybe spinal fluid has as much potential as lymphoid tissue, or possibly even more.

Also interesting to read that if Lipkin finds a virus then it will be a significant find: It will be a definite and active infection, and not just a vague antibody result. I hadn't understood that difference before now.

The CFI Lipkin study could be a really important and transformative study. Dr Chia has found enterovirus shell proteins in the stomachs of 82% of CFS patients with stomach complaints, and 75% of Lerner's CFS patients (who test positive for Herpes), have responded to treatment with valacyclovir and/or valganciclovir. So it will be interesting to see if there is any overlap between Lipkin's results and the other researchers' work. Enteroviruses (e.g. polio) have been associated with ME for decades. And then there's retroviruses, of course!

If Lipkin is able to subset patients, that could prove to be invaluable for future research.

A question: do you know the details of the planned NIH CFS Study that they've cancelled? My memory is useless, and it would be helpful to know what I should cross off my mental list of research in the pipeline.

It's confuses me that Montoya has dropped out of the CFI study. I thought he was an integral part of it.

OK, I have to take a break now. I've got up to: Proteomics and Biomarkers in ME/CFS, and I'll read the rest later.
Thanks again Cort. It's really interesting.

Thanks Bob…One of the only disappointments of the move to Xenforo is the inability to get in there and fix the formatting of the articles. Its a bit painful for me to see because I try hard on the formatting on Wordpress.

To my knowledge there have just been the studies regarding the clinical trials and there haven't been many of them…

Kelvin Lord July 13, 2012 at 2:57 pm

What a treasure chest of information, Cort. Many times I've thought to myself, "Gee, if I could just get Dr. Peterson in a room with a tape recorder once a month, I'd get not only the most current information on this disease, but the best."
You've made my dream come true with this amazing interview, Cort. I will be chewing on this for days. Don't know how you do it, but thanks for pulling it off!
I know I owe you an update on my progress post-Ampligen. I'll try to get that to you before summer's end. Thanks again for super reporting.

Cort July 13, 2012 at 3:00 pm
Bob

Yes, Dr Peterson does seem to be very prolific at the moment, in terms of the research he's involved with. It's great to see.

I wonder if people like Dr Peterson have suddenly been able to find high-profile research partners and adequate research funding for the first time, since XMRV raised our profile.

And research into ME, generally, seems to have mushroomed almost exponentially since the XMRV paper was published. That's my perception of it anyway. I might be wrong because I've only been ill for 8 years, so I don't have a wide perspective on the history. But there seems to be so much high quality research being carried out at the moment in the US, Norway and Australia.

I don't know but I think XMRV must have helped….and perhaps a great deal…Nancy Klimas gets a center, PHANU moves to newer, bigger center, the CFI initiative pops up…..I think it must have also hurt some people. I wonder about Montoya- working in the of the top university centers in the country – the XMRV saga got so weird that I imagine some researchers had trouble. On the whole though – lots of new initiatives – there's no comparison that I can think of since I've been following things – about 10 years now.

Cort July 13, 2012 at 3:16 pm
Cort July 13, 2012 at 3:20 pm
Kelvin Lord

What a treasure chest of information, Cort. Many times I've thought to myself, "Gee, if I could just get Dr. Peterson in a room with a tape recorder once a month, I'd get not only the most current information on this disease, but the best."
You've made my dream come true with this amazing interview, Cort. I will be chewing on this for days. Don't know how you do it, but thanks for pulling it off!
I know I owe you an update on my progress post-Ampligen. I'll try to get that to you before summer's end. Thanks again for super reporting.

Thanks Kelvin :)

I owe you an email and am looking forward to that update. We can see that Ampligen has made a major difference for each of the patients interviewed….they may not be well but all were severely ill before Ampligen and improved greatly on it…Hopefully Ampligen will pass muster at the FDA and they and others will the have the opportunity to be on it as long as necessary without busting their budgets and having to move to a new location simply to get the drug.

Two really good bits of news in one month! The FDA agrees to a Stakeholder Meeting and Hemispherx gets its chance for approval…:)

akrasia July 13, 2012 at 3:47 pm

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.

Cort,

How do we know that the NIH in house study was ever alive, alive, alive? Whatever their feelings about Mikovits and the unfolding events surrounding XMRV, it was/is the government's RESPONSIBILITY to deal with a major disease that they've consciously neglected for so long. We are not underdogs or supplicants, we are citizens who should expect the government to serve our needs without a charm offensive.

I realize you are reporting Peterson's impressions but they are just that. It doesn't seem as if he knows for certain what happened. And if I recall correctly, hasn't he told patients that if he had gotten m.e. he would be fighting mad, aggressively demanding research and treatment. According to what I remember, he was puzzled by our passivity.

Bob July 13, 2012 at 4:29 pm
Ember July 13, 2012 at 4:59 pm
akrasia

And if I recall correctly, hasn't he told patients that if he had gotten m.e. he would be fighting mad, aggressively demanding research and treatment. According to what I remember, he was puzzled by our passivity.

Good recall! Back in February, I posted this:

In Osler's Web, Hillary Johnson quotes a dispirited Dan Peterson as saying in 1995, I'm not sure the momentum is there from the patients. If I had a disease that was totally disabling, I would be much more angry and aggressive than most of the patients I know.

Cort July 13, 2012 at 5:58 pm
Bob

Thanks for that Cort. I can't remember if I've actually read the details about any Ampligen research, so I'll have a look through those.

Dr Lerner is also having considerable success with valacyclovir and valganciclovir in a subset of CFS patients. Do you know if any one else, such as Dr Peterson, is using or researching those drugs?

With Ampligen, valacyclovir/valganciclovir and Rituximab, maybe we are steadily moving towards a treatment now.

I know Dr. Peterson does use antivirals in some patients and he will be part of the Open Medicine Institute Rituximab trial in the fall, I believe it is…

Cort July 13, 2012 at 6:01 pm
Ember

Good recall! Back in February, I posted this:

Yes, he said that

akrasia

Cort,

How do we know that the NIH in house study was ever alive, alive, alive? Whatever their feelings about Mikovits and the unfolding events surrounding XMRV, it was/is the government's RESPONSIBILITY to deal with a major disease that they've consciously neglected for so long. We are not underdogs or supplicants, we are citizens who should expect the government to serve our needs without a charm offensive.

I realize you are reporting Peterson's impressions but they are just that. It doesn't seem as if he knows for certain what happened. And if I recall correctly, hasn't he told patients that if he had gotten m.e. he would be fighting mad, aggressively demanding research and treatment. According to what I remember, he was puzzled by our passivity.

The NIH study was certainly alive – he was sending patients to them to get tested…at some point after XMRV fizzled out they dropped it. My sense is that they were impressions – The feds spent alot of money on XMRV…maybe they didn't want to spend any more on ME/CFS after that…who knows?

Bob July 13, 2012 at 6:53 pm
Cort

I know Dr. Peterson does use antivirals in some patients and he will be part of the Open Medicine Institute Rituximab trial in the fall, I believe it is…

Cort, I haven't got a clue what research studies are ongoing, or are planned, or have been cancelled etc.
I've been unable to keep up to date, and I usually can't find any information, and sometimes I just can't remember.
I think it would be really useful to have a resource on the forum with a list of ongoing or planned research studies.
Maybe a wiki page would be best, but we don't have access to the wiki at the mo.
I wonder if you have any thoughts on that, Cort, and how we could achieve it?

liquid sky July 13, 2012 at 7:08 pm

http://phoenixrising.me/archives/7720 Here in March, you mention the NIH study. Was anyone here invoved in this study or know what it was about? Rather strange they would just drop it in midstream.

Cort, do you know why Dr. Montoya dropped out of the CFI? A wiki page with a list of studies, what they are about and updates in status would be a great idea, Bob.

Bob July 13, 2012 at 10:04 pm

Wow, Cort, your article just goes on and on! (I've read it all now.)
It's so helpful, thank you. :thumbsup:

I've been really struggling to get hold of much information over the past few months, about planned and ongoing research projects, and this article fills a load of gaps for me.

Dr Peterson seems like a very impressive researcher and clinician.

I'm glad that Dr Peterson thinks that Unger is doing a rigorous job with her project re definitions etc.
I've been trying to find out more about that project, but haven't been able to. Even the CFSAC didn't know anything about it at the last conference. I might have missed an explanation of it from the CDC man though, and so I'll watch some of the CFSAC video when it gets posted.

Cort, do you happen to know if Dr. Staines is part of PHANU, or are they seperate? I've not heard of PHANU before.
Actually, I've not heard of a few of the organisations that you've mentioned.

Thanks again Cort.

Cort July 14, 2012 at 3:43 pm
Bob

Cort, I haven't got a clue what research studies are ongoing, or are planned, or have been cancelled etc.
I've been unable to keep up to date, and I usually can't find any information, and sometimes I just can't remember.
I think it would be really useful to have a resource on the forum with a list of ongoing or planned research studies.
Maybe a wiki page would be best, but we don't have access to the wiki at the mo.
I wonder if you have any thoughts on that, Cort, and how we could achieve it?

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….:)

Cort July 14, 2012 at 3:45 pm
Bob

Wow, Cort, your article just goes on and on! (I've read it all now.)
It's so helpful, thank you. :thumbsup:

I've been really struggling to get hold of much information over the past few months, about planned and ongoing research projects, and this article fills a load of gaps for me.

Dr Peterson seems like a very impressive researcher and clinician.

I'm glad that Dr Peterson thinks that Unger is doing a rigorous job with her project re definitions etc.
I've been trying to find out more about that project, but haven't been able to. Even the CFSAC didn't know anything about it at the last conference. I might have missed an explanation of it from the CDC man though, and so I'll watch some of the CFSAC video when it gets posted.

Cort, do you happen to know if Dr. Staines is part of PHANU, or are they seperate? I've not heard of PHANU before.
Actually, I've not heard of a few of the organisations that you've mentioned.

Thanks again Cort.

I'm surprised how little there is on the CDC physician project; they're using lots of really good ME/CFS physicians – a real change for them.

To my knowledge Dr. Staines is associated with PHANU; I believe Dr. Marshall-Gradisnuk leads the group. We have an interview with her coming up soon.

Cort July 14, 2012 at 3:47 pm
liquid sky

http://phoenixrising.me/archives/7720 Here in March, you mention the NIH study. Was anyone here invoved in this study or know what it was about? Rather strange they would just drop it in midstream.

Cort, do you know why Dr. Montoya dropped out of the CFI? A wiki page with a list of studies, what they are about and updates in status would be a great idea, Bob.

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…

Cort July 14, 2012 at 3:54 pm
Ember

Good recall! Back in February, I posted this:

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….

akrasia July 14, 2012 at 4:06 pm
Cort

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…

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.

Cort July 14, 2012 at 5:47 pm
akrasia

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…

Simon July 16, 2012 at 7:32 am

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

Cort

Thanks Frenchtulip – it is rather long :)..I did consider breaking it up into two blogs…If anyone has any comments on whether that would have been better I'd be interested to hear them :)

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.

Cort July 16, 2012 at 8:40 am

tsha

Simon

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 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 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.

brennan July 16, 2012 at 5:26 pm

Great article, Cort — thank you. I'm curious about the Chimerix trial. Haven't heard anything about it in months. Is that still going to happen?

heapsreal July 16, 2012 at 5:40 pm

Cort,

you forgot to ask DrP what the cure is??

great article, thanks for keeping us updated.

cheers!!!

dannybex July 16, 2012 at 6:23 pm

Hi Cort,

Off-topic, but did you notice that on the original page linked above, every reply shows up twice? Makes reading a long article…even longer! :)

Cort July 17, 2012 at 4:57 am
Michael Dessin

Cold Taste of Tears

With all due respect, what you said makes 0 sense.

Overall the show was a step forward.

As far as exercise, NOOOOO!!

It's not worth the risk and could put you in a severe permanent or very prolonged relapse.

Mike

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.

Cort July 17, 2012 at 6:16 am
heapsreal

Cort,

you forgot to ask DrP what the cure is??

great article, thanks for keeping us updated.

cheers!!!

:eek: I keep forgetting to ask him that….I knew there was something I forgot. :) :thumbdown:

coolbreeze July 17, 2012 at 8:17 am

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! :-)

Cort July 17, 2012 at 10:06 am

…Xenforo problem…please ignore this post…

Bob July 17, 2012 at 11:24 am
Cort

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! :confused:)

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!

Sing July 17, 2012 at 3:01 pm

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.

Bob July 17, 2012 at 6:42 pm
Cort

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 July 18, 2012 at 4:43 am
Bob

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! :confused:)

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.

Cort July 18, 2012 at 4:44 am
Sing

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 like the boxer image – getting a bit punchy but still hanging in their and looking for the right opening :)

Cort July 18, 2012 at 4:47 am
Bob

Do you mean you are looking for volunteers for the wiki in general? i.e. setting it up?

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…

GracieJ July 23, 2012 at 6:42 pm

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…

Cort July 25, 2012 at 7:32 am
Dr. Yes

And on and on…

One other thing in response to your post, teejkay,

I've also had to build some degree of boundaries between myself and (mainly) my family, or even within myself, in order to maintain some degree of inner equilibrium, or in order to accomodate helpful paradigms of thought. But for me that's because of the anger at people due to situations created ultimately by the disease (e.g. how they have reacted to it) and especially because of the general turmoil – emotional. physical, cognitive – produced by this disease. I think those boundaries are temporary but, for now, necessary, because there's only so much cognitive energy I can expend trying to "fix" things in a deeper way, or a more satisfying way (or in a way that reflects a freely-investigated philosophy rather than a practical one).

One of the first Hindu teachings I read after getting sick was by a famous yogi who said that one should neither expect nor even attempt to attain a higher state of wisdom or deeper understanding of self through yogic meditation if (1) the body is not healthy, or (2) for that reason or others, the emotions are in unusual turmoil. He (and others, as this is a basic yogic teaching) said that the first goal for people in those situations would be to seek healing (through Ayurved, in his case) and to use yoga/meditation only to heal and strengthen the body. "The body must first be a strong vessel in order to hold the spiritual energy released by yoga and contemplation", or words close to that. So as frustrating as it is, perhaps it makes very good sense that if we are sick we cannot meditate easily, or at all, and cannot seem to direct our own inner selves without great difficulty, and instead we have to focus on the healing aspects until our inner stamina increases. Don't know if this was interesting or makes no sense at all…it's 8 AM here and I haven't slept all night! Sorry again for all the text, especially if turns out to be brain-fogged garbage..!

Hey, thanks alot Gracie Allen for your nice comments…….(I'm fine with with your post showing up several times :))

I love the image of a semantic spider web :)

Good idea on having some guide at the top for lengthy articles. If I forget to do that on the next one – please let me know…

Thanks again…

Bob July 25, 2012 at 7:43 am
Cort

Hey, thanks alot Gracie Allen for your nice comments…….(I'm fine with with your post showing up several times :))

I love the image of a semantic spider web :)

Good idea on having some guide at the top for lengthy articles. If I forget to do that on the next one – please let me know…

Thanks again…

Cort, your quote has massively misfired again! But these random old posts you are resurrecting are quite interesting!

currer July 25, 2012 at 8:08 am

Could this really be the Dr Yes we know, philosophising about Ayurved, spiritual energy and inner turmoil?
Hmmmm…….!

Cort July 25, 2012 at 9:20 am
currer

Could this really be the Dr Yes we know, philosophising about Ayurved, spiritual energy and inner turmoil?
Hmmmm…….!

Indeed…and yes, the posts they keep turning up are really interesting :)

Sushi July 25, 2012 at 10:31 am
Cort

Indeed…and yes, the posts they keep turning up are really interesting :)

Deus ex machina? :confused:

Sing July 26, 2012 at 7:32 am

I miss Dr. Yes, having been around in those years too at Phoenix Rising. But we have a lot of great discussion now too!

Cort July 26, 2012 at 10:51 am

He was fun -very articulate, good sense of humor – and really committed to XMRV…..It was too bad he left.

GracieJ July 26, 2012 at 11:38 am

Serendipity was definitely at work there. That quote was just what I needed this week.

Sushi July 26, 2012 at 11:41 am
Sing

I miss Dr. Yes, having been around in those years too at Phoenix Rising. But we have a lot of great discussion now too!

He was a daily dose of rolling on the floor laughter. I hope he is doing OK.

Sushi

Ecoclimber August 1, 2012 at 3:38 am

I have read some of the positive reports concerning Ampligen, but I am also concerned about their checkered past. I was reading a post here: FIRST PERSON: AMPLIGEN SAGA that took a different perspective on Ampligen and I was curious about some of the questions it does raise! It's seems as if, it's a 'drug' in search for a disease. I am curious of other patient's perspective on this company run by Hemispere BioPharma and Dr. Carter especially in light of their bulldozing tactics used in this article to attempt to shut down a non-profit organization on behalf of the patient community in this article. It doesn't appear that this company is forthright either toward the patient community, nor the the investor as evident by the settlement of a class action lawsuit among investment community.

FIRST PERSON: AMPLIGEN SAGA​

by Danya Zucker
From Fall 2011 Forum
What started as "Dear Forum…" Kudos to this publication for possessing and printing the letter written to K. Kimberly Kenny (sic) by Hemispherx Biopharma, Inc. (Heb) regarding a planned article for The CFIDS Chronicle on the status of Ampligen recipients treated at a handful of sites in North America and Europe in the late 1990s, I was particularly impressed as I am one of the Ampligen patients referred to in the letter, none of whom received a copy of it — nor, obviously, did The CFIDS Association of America (TCAA) ever publish it…

Eco,

floydguy August 1, 2012 at 7:24 am
Ecoclimber

I have read some of the positive reports concerning Ampligen, but I am also concerned about their checkered past. I was reading a post here: FIRST PERSON: AMPLIGEN SAGA that took a different perspective on Ampligen and I was curious about some of the questions it does raise! It's seems as if, it's a 'drug' in search for a disease. I am curious of other patient's perspective on this company run by Hemispere BioPharma and Dr. Carter especially in light of their bulldozing tactics used in this article to attempt to shut down a non-profit organization on behalf of the patient community in this article. It doesn't appear that this company is forthright either toward the patient community, nor the the investor as evident by the settlement of a class action lawsuit among investment community.

FIRST PERSON: AMPLIGEN SAGA​

by Danya Zucker
From Fall 2011 Forum
What started as "Dear Forum…" Kudos to this publication for possessing and printing the letter written to K. Kimberly Kenny (sic) by Hemispherx Biopharma, Inc. (Heb) regarding a planned article for The CFIDS Chronicle on the status of Ampligen recipients treated at a handful of sites in North America and Europe in the late 1990s, I was particularly impressed as I am one of the Ampligen patients referred to in the letter, none of whom received a copy of it — nor, obviously, did The CFIDS Association of America (TCAA) ever publish it…

Eco,

Checkered past compared to what?

Merck:
http://news.consumerreports.org/hea…es-merck-nearly-1-billion-over-vioxx-ads.html

Merck et al
http://www.usatoday.com/news/washington/story/2012-03-05/health-drugmakers-fraud-fines/53372792/1

FDA (Whistleblowers)
http://arstechnica.com/tech-policy/…-government-intercepted-gmail-yahoo-messages/

Harvard University
http://www.nytimes.com/2010/08/21/education/21harvard.html

It's unclear to me at this time whether their ethics are any worse than anyone else's at this time. I will place my trust in my two primary MDs Nancy Klimas and Tony Komaroff. If they think it makes sense for me to take Ampligen I will consider it at that time.

Sing August 1, 2012 at 10:30 am

Good point, floydguy–"checkered past compared to what?" I want to comment in a general way here. The perfect, the ideal, the pure or the absolute don't seem to be actual choices we get on this checkered planet and in our checkered lives, but rather, choices between the better and the worse. If every choice had to meet ideal standards before it became acceptable and permissible, we would be "stalled out" in an even more helpless and hopeless condition than we are already in. There is an up and a down side to everything–we need to look for remedies and choices which offer the best overall benefit, considering the whole picture, rather than putting the brakes on completely when things don't come up to a standard of perfection. Let's not make the ideal the enemy of the good.

And I know that we are not all exactly the same–our outcomes won't be and our choices shouldn't be all exactly the same. "Progress, not perfection" a great slogan from AA, could guide us here.

Firestormm August 1, 2012 at 1:47 pm

Bit of news today about Hemispherex: http://www.marketwatch.com/story/he…ation-for-chronic-fatigue-syndrome-2012-08-01

Bob August 1, 2012 at 2:41 pm

From what I've read in the past, I would agree that Ampligen is a drug looking for an illness, but what's important to us is how it works for ME patients. I don't yet know how effective it is supposed to be for ME, or what proportion of patients it works for. I haven't looked at the scientific data yet. Cort provided some links to some papers earlier, but I haven't got around to looking at them yet. But I think that's what we've got to focus on.

Marg August 1, 2012 at 7:49 pm
Sushi

He was a daily dose of rolling on the floor laughter. I hope he is doing OK.

Sushi

I agree, where is he..anyone know?

Cort August 2, 2012 at 3:46 pm

I'm not worried about Ampligen..I don't know how many people it works in but it's worked for enough people for me to be a believer. Hemispherx is a small drug company with a drug for a controversial disease – not a great recipe for success! …that combination may have lead them to try all sorts of things to raise money…Maybe if wasn't ME/CFS the drug would have moved faster. Anyway the bottom line for me is that some people with this disorder really benefit alot from this drug…I don't have any doubt about that…I just don't know how many

Bob August 2, 2012 at 4:07 pm
Cort

Anyway the bottom line for me is that some people with this disorder really benefit alot from this drug…I don't have any doubt about that…I just don't know how many

I agree with you Cort. The important thing is that the drug works. But I think it's important to know how many it works for, and by what degree. I've not got around to looking at the research yet, but it's on my list of stuff to do.

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